Dana’s Rheumatoid Arthritis story
Mallory’s Rheumatoid Arthritis story
Jean’s Rheumatoid Arthritis story

This is Dana’s onset of Rheumatoid Arthritis story, in her own words.

It was a sunny spring day in 2004. I was 19 years old, and a happy, healthy college student at Cedarville University in Ohio. Or so I thought. It was almost the end of the semester when I noticed that a finger on my left hand was sore – almost as though I had somehow jammed it. I didn’t recall doing anything to it, but who knows – I was fairly active. I ignored this symptom for a while, until I realized that it had been a few weeks and it had still not gone away or gotten any better. I decided to make an appointment to see my doctor to see what she recommended. Nothing much was accomplished at my first doctor visit. She simply referred me to a hand specialist. By this point, I believe college was done for the semester, and I had moved back to Michigan. I spent the summer living with my dad and babysitting my cousins, while taking courses at the local community college and preparing for a more permanent move to West Michigan. At some point early in the summer, I had my appointment with the hand specialist. Based on my symptoms, he believed that I had tendinitis. He prescribed some Naproxen, told me to take it for a few weeks, and then he’d see me back.

A funny thing happened in the coming days. Not only was the medicine not helping my finger, but the pain had switched hands! It was now a different finger on my right hand that hurt. Whoa, that was weird. Was I going crazy? It was originally my left hand that hurt, wasn’t it? Surely I hadn’t inadvertently, without realizing it, injured another, different finger? I knew something was up. I didn’t have tendinitis. When I reported back to the hand specialist what had happened, he immediately referred me to a rheumatologist. I had several appointments with the rheumatologist, during which he examined me and took blood tests. Meanwhile, I was shocked one day to realize while babysitting that my feet were hurting me.  It couldn’t be that the same thing causing pain in my hands could also cause pain in my feet – could it?

My blood tests revealed a positive Rheumatoid factor and the presence of antinuclear antibodies (ANA) – and probably several other things that I didn’t pay attention to – and the rheumatologist eventually diagnosed me with Rheumatoid Arthritis. He explained that this differed from osteoarthritis (though, at the time, I didn’t fully understand that difference), and told my mom and I that this was something that needed to be treated aggressively so that we could try to prevent the disease from doing any permanent damage to my body.

I think I was in shock.  I always HATED being sick. I know nobody likes it, but just the thought of being sick when I was a kid made me sad, frustrated and depressed. I didn’t like anything that limited me from playing and being active. Now I had a disease that was not going to go away, and was getting worse. I broke down one day after babysitting and just cried. I didn’t want to let this disease slowly destroy my body and take away my life.

Fortunately, my doctor did prescribe methotrexate for me and had me start on it immediately, in addition to the Naproxen. By this time, summer was almost over, and I was off to start a new life at a new college in a new town, with (hopefully) a new job. I moved two hours away, and continued to commute back to my rheumatologist’s office every few weeks until we could get my treatment figured out.

At first, the methotrexate didn’t seem to be helping.  The pain continued to spread.  It sometimes kept me awake at night. I began to walk with a limp. I tried hard not to, and not to let anybody see that I was in pain, and even tried to tell myself that it wasn’t that bad. I worked one job for a couple months, without any problems, and school was going fine – except for the buildings that had stairs leading up to them-I had to walk stairs slowly, using the railing and putting both feet on each stair. Of course, it didn’t make matters easier that I lived in a 3rd story apartment!

Towards the end of the year, I was about to start a new job that required some clerical duties when I suddenly realized that I wasn’t sure if I was going to be able to hold a pen in my hand. My fingers had gotten to the point where they were swollen and didn’t bend quite right – or at all. At that point, I was truly scared.

I had one more appointment at the rheumatologist, and he decided to up my dose of methotrexate. I wasn’t convinced that it was doing anything – until that point. Once the drugs were in my system for a while and the proper dosage was determined, I started to see major improvements very quickly. I no longer walked with a limp. I could hold a pen and write without problems. I wasn’t being awakened in the middle of the night with the deep sharp pain in my bones. I still hand some symptoms: I had a lot of morning stiffness; I had one finger that still wouldn’t bend right; my wrists were very weak and oftentimes sore. Some of these would come and go, and some continued to possibly get a little worse. But, I was happy.  I could live my life normally, with minimal problems.

Without launching into another whole story – I tried some alternative therapies for a while, which didn’t help and may have hurt. A few years after my initial symptoms began, I finally started seeing a rheumatologist in the town I was living. I had a bad flare up in my knees, and it was just a few short weeks before my wedding. I was scared I wouldn’t be able to stand up during my wedding ceremony.  But, my new doctor was very kind and seemed to know just what to do. He put me on a tapering dose of prednisone to knock out the flare (which it did). Not wanting to test a new drug right before my wedding, we held off a bit, and then I started on Enbrel in I think September of 2007. I had been feeling pretty good, and eventually weaned myself off of the methotrexate (for family planning reasons). Since the beginning of 2008, I have been solely on Enbrel — taking Naproxen as needed (I realized it does help a bit for taking the edge off of certain types of pain or inflammation). Enbrel has worked great – even better than the methotrexate. There are days where I am almost symptom-free, and my “bad” days are not anything near my truly bad days: usually just minor swelling and low levels of pain. What’s better is that I haven’t even had any side effects from my medicine – that huge, scary list of things that could potentially go wrong has not yet become a problem for me. I can only hope and pray that my RA continues to be this well managed.

I am so grateful for my doctors who were able to quickly diagnose me and believed in treating the disease aggressively from the onset.  I am grateful for the drugs that exist that enable me to still do the things I love to do, which RA has taken away from so many – cooking, gardening, hiking, skiing, etc. And I am grateful for RA Warrior – for all of the research that Kelly has done (I have learned SO much), and for the support and stories of others. I hope to have a long life ahead of me, and sometimes it scares me when I think what my RA could progress to in that time – but knowing that there are others who understand my struggles and to see how others have managed has been such a huge blessing!

You can hear more from Dana on her blog, Water’s Edge.

This is Mallory’s onset of Juvenile Arthritis story, in her own words.

Here is my story: It was winter 1989, I was only 3.5 years old… My mom took my sister and I down to Texas to visit family. One morning I woke up and my left knee was so swollen I couldn’t move it at all. My mom thought I had maybe gotten bit by a foreign bug, I was crying so badly, my mom had to carry me to the local walk-in clinic. The doctor there told my mom I had something called JRA. My mom thought I couldn’t possibly have that; it’s an “old person’s disease,” so she decided to take us home to our local doctor for a second opinion.

We got home and the doctor said I did not have JRA, and put me in a cast!! I was in the cast for 6 weeks or so. When the cast came off, I cried for 3 days straight and couldn’t walk or move my leg. My leg was literally locked in the bent position. A friend told my mom to take me to Children’s Hospital in Boston. There I met with the best doctor ever, and he diagnosed me with JRA, along with uveitis in my left eye. I had to go through months and months and months of physical therapy, because I couldn’t walk, or move my leg still. Once I gained some movement, I had to use walker for a while, before I learned how to walk all over again. I was laughed at by other children when I was in public with the walker, and was turned down by lots of preschools.  It was a long road, but I always stayed strong.

After starting treatment, I started having severe stomach issues and started internally bleeding, GI bleeding.  I found out it was from Advil (ibuprofen /NSAIDs), so I had to stop those immediately. This made finding medicines very difficult, and even more so as time went on.

By the time I was 8 years old, the JRA had spread to all of my joints, all over my body. I was also diagnosed with glaucoma and a cataract in the left eye. It made everyday tasks hard to do, but again, I stayed strong. Over the years, I’ve had at least 5 glaucoma surgeries for my eye, because the glaucoma and uveitis medicines counteract each other, making things very difficult.

When I was 12, and got my first period I had severe cramps and sickness that kept me out of school. I was diagnosed with dysmenorrhea and put on oral contraceptives.  I still have severe cramping to this day, even after switching my pills many different times. Also around middle school age, I was diagnosed with asthma and fibromyalgia.

Over the years I have tried many different medicines; Remicade, Enbrel, methotrexate, gold injections, Humira, Rituxan, prednisone, and Arava… to name a few. I’ve had weird reactions with some, whereas some didn’t work at all. Remicade I stopped breathing, Enbrel worked for my joints okay, but did nothing for the uveitis. With methotrexate, I had lung toxicity; gold injections didn’t work; Rituxan dropped my white blood cell count dangerously low; with Arava, my liver.

From 2000 – 2002, I was actually in the study for the medicine Enbrel and was able to travel to the National Institutes of Health (NIH) in Maryland.  That was a great experience! Except for being on a plane on 9/11/2001, but that’s another story.

In 2008, I started getting really sick – I had sinus infections that lasted months, double ear infections for almost 5 months straight, both need a few courses of antibiotics of all different kinds to get rid of the infection. Then in 2009, I got double pneumonia that lasted just over 6 months, and halfway through that, I got the swine flu (H1N1) on top of it. Something was up, I finally had to realize it was time to stop working (I had been working since I was 15), because I was just getting worse & worse. I saw an immune specialist and he diagnosed me with an IgA-deficiency and an anti-A-antibody. My body has absolutely NO A-antibodies (the ones that fight off infections in the ears, nose, throat and lungs), and my body built up an antibody against them. I can never receive them or my body will go into anaphylactic shock.  I now have to give myself a sort of IV once a week called Hizentra that has other antibodies in it, along with an antibiotic once a week.

A few months ago, my rheum doctor sent me for a bone marrow test and I found out I have osteopenia in my neck and right hip.  My hip is two points away from osteoporosis. Also, for the past few months I have had severe digestive issues.  I saw a GI specialist and am scheduled for a colonoscopy because she believes I now have Crohn’s disease.

Currently I am on Humira once a week, methotrexate 25mg injection once a week, and prednisone 5mg daily for the JRA. You’re probably wondering why I am taking methotrexate when I said I had a bad reaction to it, right? Well since it’s been well over 10 years when I last took it, and my doctor and I have really run out of options, I accepted to give it a go. I took the pills for 6 months with no reactions, and now switched to injection. My body has gone through so many changes since then, so it was worth a try. I also take an inhaler, Hizentra, Azithromycian, Lecourcovin, Pred-Forte, Alphagan, vitamins, calcium, oral contraceptive… umm I feel like I’m forgetting something!

My doctor plans on taking me off the prednisone, once the methotrexate has had time to get into my system. I’ve only had a couple doses of it, so here’s hoping it will help. If this doesn’t work, we will have to start fresh and find something new that I can be able to take. I always seem to have new things pop up, especially as of late. I try to remain strong, with a smile on my face. I miss working, but just can’t go back right now. I was approved for disability, which helps pay the bills and medicines. I still wake up every day with stiff joints, and have a hard time moving around, and performing everyday tasks…but with this disease, the one thing I have learned is that patience is key. I still have hope I’ll feel close to normal someday.

My Rheum had told me most of my life, that since it was JRA there would be a possibility of growing out of it. If so, I would know by the time I was 18. Eighteen came and went, and I never grew out of it, nor did I ever go into a remission of any kind.

You can hear more from Mallory on her blog Maybe It’s Mallory.

This is Jean’s onset of Rheumatoid Arthritis story, in her own words.

I’m not 58 years old. I have been selling health insurance for over 13 years. What I knew of RA was that the medications were expensive and my group of employees was probably going to get a rate up from the standard rates because of the cost and amount of prescriptions someone was taking. Little did I know…

My parathyroid had been making too much calcium for years and the endocrinologist would constantly be checking me out along with my diabetes that I inherited from my mother’s side of the family. In checking my parathyroid again last summer, they found a small cancerous tumor in my thyroid and in August 2010 I had surgery to remove the thyroid. No radiation necessary; easy surgery. Except my right ankle hurt for many days and a trip to the ER found nothing. Soon after that subsided, the balls of my feet hurt.

I would talk to the endocrinologist and he knew it wasn’t from the diabetes as it was under control and it didn’t follow neuropathy symptoms.  So we thought, maybe I needed the calcium I was no longer making and he gave me a prescription for calcium, but nothing changed.

As months progressed, my feet became swollen and much more sore and my hands hurt a bit. I just did not feel good. I went to my primary doctor in December, and they did blood work letting me know a week later that I had Rheumatoid Arthritis and it took over a month to get an appointment for a rheumatologist. On Christmas day last year, it all hit me and I hurt in my jaw where I once had TMJ, my shoulders, upper arms (we think radiating from shoulders), elbows, wrists, hands (especially right) and left ankle. Though my knees were spared from the inflammation, my muscles in my thighs were killing me.  I went from my bed to the recliner in the family room and basically could not even pull up the covers on the bed because everything hurt so bad. I still can’t even pick up my jeans or slacks without a lot of discomfort.

Because of being diabetic, no prednisone for me.  I’ve had methotrexate shots and now Enbrel too.  My first Enbrel shot was a dream come true, but has since then not quite as good.  My right hand and both shoulders are the worst and I have to watch how much I do.  I find no rhyme or reason to my pain but it’s funny that once you’re practically crippled from a flare, when you still hurt, you know it’s an improvement.  That’s a bit sad.  The rheumatologist says Enbrel can take up to 6 months to really work – I’m looking forward to September!

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Laurie’s Rheumatoid Arthritis story
Debbie’s Rheumatoid Arthritis story
Alice’s Rheumatoid Arthritis story

This is Laurie’s onset of Rheumatoid Arthritis story, in her own words.

I am 54 years old. In the fall of 2001, I started experiencing low grade fevers every night and just getting tired. I was working full time nights as an RN in a hospital 3 nights a week. I went to see my primary doctor because I started having some heavy periods and right-sided pain. He thought I had an ovarian cyst. I went to my OB-GYN; he did an ultrasound and a laparoscopy but did not see a cyst, so back to watching. Summer 2002: I started with the night fevers again… back to the primary. I had a case of mononucleosis in the late 90′s, he felt maybe it was related to that, but more labs were inconclusive.

In February of 2003, my abdominal pain increased, and this time I had both ovaries with cysts, so we decided to do a total hysterectomy and take out the ovaries. I ended up being in the hospital for a week having blood transfusions because I had a lot of scar tissue from my previous C-sections. Five days at home and my abdomen blew up like a balloon with the suture line gaped open. I ended up back in the hospital for 10 days. They really can’t sew your belly back together again, so I was off work 4 months waiting for the wound to fill in by itself. During that time I started back in with the low grade night fevers, I saw an infectious disease doctor who put me on all sorts of antibiotics, and I kept telling him my hands were so stiff and achy. He thought it was because my body was just so worn down. I finally got back to work in August, still not the energizer bunny I had been.

Labor Day weekend, I woke up with my knee the size of a large grapefruit. Went to the ER, they x-rayed and drained it, put me on antibiotics thinking I had a bone infection. But they did also run tests for lupus and RA. The Rheumatoid factor came back mildly positive. I was referred to my rheumatologist, and at my first appointment I was started on methotrexate. By March of 2004 I was up to 20mgs of methotrexate and still hurting. We decided to add Humira to the mix.  After 6 weeks I was feeling a lot better. I could even manage steps. I had a Caribbean cruise scheduled…I even managed to climb 5 flights of steps to the top of a Mayan ruin. I felt so good. But slowly the Humira faded. Over the next 6 years I have been on Orencia, Remicade, Enbrel, Enbrel together with Rituxan in a clinical trial, Simponi, and as of five months ago I am just back on Enbrel alone. It doesn’t help much, but it keeps me moving. I pray every day that researchers come up with a miracle cure.

In retrospect, I think I had signs of RA back in college in the 70′s. I remember two painful episodes lasting several days where I could not raise my arms to wash my hair. The nurse at the health clinic blamed it on my backpack. In the late 90′s my knees gave me a lot of trouble. I was very active working full time and was a band parent for my kid’s HS band. I ran the concession stand every weekend, stocked it during the week.

Looking back, I think I probably had RA in my knees then.

Since January I have come to think of my RA as an Octopus. The RA is the body, now I am having tentacle problems… Sjogren’s affecting my lungs, depression affecting my brain, cataracts in my eye, anemia and iron deficiency requiring IV infusions, and cardiac problems that doctors are “positive” are secondary to RA… I only have 3 empty tentacles… Hopefully, I can keep them issue free.

In the meantime, I am home on disability, having infusions, pain and cardiac testing. I am lucky to have my two grown sons to help me with heavy work around the house, as my husband is also disabled.

One bright spot has been the support I find online, especially with Kelly and the Warriors. It was an honor to meet Kelly and some of the Orlando area Warriors a few weeks ago, it’s nice to have someone who understands you for a change!


This is Debbie’s onset of Rheumatoid Arthritis story, in her own words.

I’ve been married for 27 years and I have three wonderful boys. We live in a small suburb of Philadelphia. About 10 years ago, while attending my son’s baseball game, I was bitten by a deer tick. They are very prevalent here. I had a huge welt, as well as the tell tale signs of a bulls mark on my neck. Thank goodness at the time I had long hair and I could cover it up. I went to the doctor explained to them that I had pulled a deer tick off of my neck about 4 days prior. At the time Lyme disease was not so much in the forefront aas it is today. She looked at the bulls eye mark and prescribed me with antibiotics. I also had blood work done to determine whether it was Lyme.

Shortly after being bit by the tick I had strange feelings in my hands, knees, neck and feet. I am not saying that the tick brought on these symptoms this is when I was more aware of them. For the next ten years I would go back to my doctor and say, “I do not feel right, I am tired, my body aches, I have fevers, and my joints hurt. For ten years my family doctor prescribed antibiotics, and sent me to get blood work done. For ten years, the lab came back that I did not have Lyme. I felt better after taking the antibiotics but that “good” feeling would not last long.

At the very last time I made an appointment with the same family doctor, I was surprised to find that he was not there, he was on vacation. There was a doctor filling in for him. I told this new doctor all the symptoms I was having. He again prescribed antibiotics and sent me to get blood work. I told him as I left the office that this has to be Lyme this time, I just do not feel right. Little did I know he was also asking for more than just the Lyme test.

I received a call from him a few days later and he told me that it wasn’t Lyme. I was crushed. Does this man think I was crazy, when I told him I had all these symptoms? No, it’s not Lyme, you have a very high Rheumatoid factor. You need to see a rheumatologist. I had no idea what this was. Didn’t know a single person who had this. I was shocked. I asked him hurriedly, is this something that will change, should I wait to call the rheumatologist? No, he says, you need to call today.

In the world of the internet, before I even called and made an appointment, I Googled Rheumatoid Arthritis. I found RA Warrior and read as much as I could. I asked to see my blood test results and continue to read about it for the next three months. I read books from the library, I read articles on the internet.  When I went for my very first rheumatologist appointment I thought I was prepared. I had Googled and read for three months. But what I wasn’t prepared for was the rheumatologist himself. I didn’t prepare myself for him.  He was rude, impatient; he even left the room to take a call on my first visit. Honestly I was scared. I forgot all that I read; I forgot to ask the questions I wanted to ask. I was scared.

He asked me rudely, “How do you feel?” Well, today I said, I felt kind of good.  It was a better day. He said: “Why are you here then?”

“Well, I have not felt good the past ten years and my blood work showed I have Rheumatoid arthritis.” That day he ordered more blood work and I was told to come back in two weeks.

I walked out of that door knowing I needed to find a new doctor. I went to him three more times. He prescribed Plaquenil to be taken twice a day. After three months taking it, I told him I was getting a sore throat everyday and I suspected it to be the Plaquenil. “Impossible,” he tells me. He has been in practice for a long time and he has only come across one other person that this happened to. “Impossible,” he says. I knew that day, that would be the last time I would see him. Plus, I had Googled that as well. Yes it is an allergic reaction to Plaquenil.

I am currently seeing a new rheumatologist with whom it took 4 months to get an appointment. I brought all my blood work to my first appointment. After he walked through the door I knew I made the right decision. He looked at my blood work and confirmed without a doubt I have Rheumatoid Arthritis, but what the other doctor didn’t tell me, was that I also tested positive for Sjogren’s Syndrome. This accounts for so many of the symptoms I was having. The new doctor again has ordered blood work and x-rays. I am currently not taking any medicine right now and I feel every joint in my body. I will see him in two days; I need to choose between methotrexate and Leflunomide.

I am scared for the future, but realize I am not in this alone. I am thankful that I found RA Warrior and listen to the stories of others.

This is Alice’s onset of Rheumatoid Arthritis story, in her own words.

I was born four months premature, spent a long time in a humidi-crib. The doctors could see I had several issues upfront but were unsure how to diagnose. Later it was found to be Rheumatoid Arthritis, Ehlers-Danlos Syndrome, and now Marfan’s syndrome. My skin was very weak due to collagen problems with Ehlers-Danlos, my eye was squinted due to the onset of Marfan’s and my joints would swell and be difficult to move due to the RA. But, as I grew up I just didn’t stop moving; I had a brother and his friends to “keep up with.”

Often, keeping up with them would lead me into all kinds of strife. I would end up in hospital at least 1-2 times a year due to falling over and spitting my knee/arm/leg open. I would need stitches. The doctors would often ask, why do you think you’re clumsy? Is someone hurting you? I would just say I don’t know and no.

I would wake up most nights screaming in agony over the leg pain or arm pain and the doctors said “It’s just growing pain. You just have it worse than others.” I thought this was a bit strange since if this is what happens when your “growing up,”’ who would ever want to – it’s so painful!!

I was terrible in sport teams, I couldn’t keep up with the other kids. My legs would always hurt very fast and because I was so premature I ended up with lung issues – they both collapsed several times and are weaker than most peoples. So, I would sit on the side lines always feeling like some kind of freak as I was different to everyone else. I would be called lazy and stupid. Because of this, I always pushed myself as hard as I could. After sports sometimes I would come home have a hot shower and cry due to the pain. Again, it was just called “growing pain” and “deal with it.” My mum would always give me hot water bottles and calming tea and pain killers. It’d help but never totally dulled the pain.

Working at the library, my hands would swell and be very painful due to the repetitive book circulation. I worked in a very busy library where you could easily handle thousands of books per hour checking them in/out and filing them away to be shelved. Shelving also when I would bend down and up/squat by knees and feet would ache and swell.

Like school, I would come home every night and have a very long hot shower or bath and sit down for a few hours often crying in pain. I was given a permanent 25 hour position at the library. Over a year, I ended up having quite a lot of sick-leave due to pain and generally getting ill often due to public work and spread of disease. I often had counseling from my workplace due to the absence. Basically, if I didn’t do something about it (stop being in pain) I would get fired.

I was often put on ‘return to work plans’ where when I would get a huge flare up/pain which back then the doctors called a injury/sprain since they had no idea what was wrong with me. These “return to work plans” were degrading. I openly had people call me lazy or give me tasks I was not meant to do while being “injured” and I would do them because I was petrified and felt like a failure. It would hurt, I would get swelling and I would go home and sit and cry for hours about it. One time I had my arm in a sling after an operation and needed help with something, no one would help when I asked and the customer was waiting – so I did the task that I shouldn’t have done. I knew if I didn’t do it and the customer complained I would get in trouble, but if I did do it I would get in trouble. So either way was trouble. So I picked up the bunch of books and carried them up a bunch of stairs. My legs gave out and my arm trembled and I fell. My stitches came undone and I bled on my white shirt.

I sat there, embarrassed and defeated. I was apparently “lazy” and I felt it. I felt useless. I picked myself up but wondered about what on earth was wrong with my body? Why was it so painful? Why was this happening? Why am I not “normal”?

Several months later, events eventually led to the RA diagnosis. The Rheumy I have now said, “You can always remember that moment or course of events that made your RA switch ON, boy did it switch into overdrive!”

I was working at the desk and I was getting a bunch of books from behind the counter that were in a box. I picked them up correctly but the moment my back felt the pressure it started to hurt and it was one of the worst pains I had felt in my life. I was due for a holiday to visit my mother so I just grit my teeth and boarded the plane a few days later barely able to walk.

I returned to work a week after we got back, taking lots of painkillers. Then one day at work it got quite serious. That morning I remember rolling my ankle on the way to walk. It got hotter as I went along and went up to my knee which went from a normal knee to a “basketball knee.” Literally though my pants you could see this huge ball of swelling where my knee was.

I rung a number where nurses talk to you. They said to “call an ambulance.” This is a bit hard when you’re in the middle of work! So, I called a taxi to not make a scene. I was already being called a lot of names by people at work due to having time off, being slow, moving in pain’ I didn’t want “drama” to be added. So, I jumped in the taxi. This made it a bunch worse as when I lifted myself into and out of the car the knee buckled and I went down onto the floor. By the time I made it to the hospital my mouth was bleeding due to the insane pain my knee had I didn’t want to scream so I bit my lips.

At the hospital they drained my knee and said not to worry, but head back to work in a few weeks.  So, I did. But, after a few months it didn’t help at all. I ended up on sick leave again and in hospital by October. Then, a wheelchair. I got more tests and operations finding nothing but 137 CRP. My knees got worse and I again saw a knee doctor. They looked at the knee more closely and said: “Hmmm, this is not a meniscal tear, this is degradation of the meniscus in your knee. You should see a rheumatologist.” Finally, someone was getting somewhere!!

The only problem was, the referral for the rheumatologist I was given could take up to a year to get an appointment. So, I waited a few more months…

Stuck in a wheelchair, needing to be fed, needing help to use the toilet and get on/off it, needing help bathing and getting around was degrading. I was screaming in pain nonstop. I was given very high dosages of painkillers like Endone. But it didn’t work. Morphine did – but I needed a lot of it. After a while and many hospital visits the hospital got fed up with seeing me like this. They rung the rheumatologist and said “You have to get her in now we can’t deal with this here.”

FINALLY on Monday I had an appointment to see a rheumatologist!

The woman lady asked why I was in the wheelchair. I just kind of hung my head in this shame I was feeling I could barely speak. She asked me to “hop on the bed” I just broke down and cried I felt like I was a three year old again. I begged for my mother. I knew getting out of the chair and onto the bed was going to hurt… a lot.

But, being stubborn I just bit my lip and did it. Screaming all the while.

The doctor looked me over and said “Yeah you have arthritis we will need to give you steroids and you will have to stay in hospital til you can walk again yourself.”

I didn’t want steroids. Nor, did I want more hospital time. By this time I was very underweight and unhealthy. Before I went to bed in hospital I was given 25mg of Prednisolone. That next morning the pain wasn’t as bad… and I could WALK. The first thing I did was go to the toilet by myself. I could dress myself for the first time in months.

They didn’t want to settle on RA since I was negative with the R-Factor. So, it was a very big battle to get benefits for disability from the government, but we eventually did as a few months later the doctors settled for RA. You can still have it without having the factor in your blood work but you need to pass other tests. The RA was classified as severe and may improve some but I doubt I could work more than a day a week. My world just fell out from under my feet.

Here I was thinking I will be back to work soon, just need right mix of medications – so was my boss. A few months later I was fired and given a redundancy payment.

Then a miracle happened. I called Simponi. To qualify I had to be on 20mg of MTX for 6 months and prove that it wasn’t helping, same with the steroids and sulfasalazine.

The first day of the self injection medication Simponi I could feel a difference. Two weeks later I could walk with a walking stick for a bit of the time!

I have recently moved to be closer to my mother for the extra support. I know that the Simponi is working well, I can’t fully use my body yet without a lot of pain, but it gets better every day. It’s nice to be able to brush my own hair or put my own clothes on most of the time. I still can’t put my own shoes on though!

The hardest part of having RA I find is the “looks” and what you know people are thinking. I wish there was a way to put people in my shoes to know what it’s like to be in constant agony and to just have to grin and bear it – I do this a lot because I don’t want people to then pity me.

Getting out of bed is brutal, getting into the shower is sometimes terrible especially keeping up with personal hygiene like leg shaving or washing hair. Then going out sometimes is hard because walking hurts a lot but not as bad as before so I do it to try and lose the steroid weight.

I just wish people would just accept me for who I am now and try and understand. That’s why I am glad for your website to help educate people. I am very grateful for my partner who does accept me fully understands the disease. He helps with the dishes and cleaning, he helps me do everything when I cannot. He tries to educate our family and friends.

I can now walk for 20-30 min unaided. It does tire me out and it uses up most of my daily energy but thanks to Simponi a lot is possible! My new Rheumy is wonderful she chats about everything and you can get to know her so that you feel comfortable to really tell her how your feeling. She is like a great counselor plus a rheumatologist! She is thinking because my CRP and disease count are becoming more normal I can get off the steroids which is my main goal.

You can hear more from Alice on her blog, Speed Demon with RA.

<< Back to Onset Story main page.

We’ve just added eight more stories to our RA onset story pages. Even with all of the stories and emails that I’ve read from people with RA, several hundred I’m sure, these new ones affected me. I laughed, cried, nodded knowingly, and was even surprised a few times by something new.

Some common themes in the stories:

• Years without knowing what’s wrong.
• Waking up with something new hurting every day.
• Not mentioning how bad it hurts because no one understands.
• Surprised to be so suddenly disabled after being so strong and healthy.
• Family members with RA.
• Medications working differently in each person or not working at all.
• Days or months passing by and not being able to move.
• Compassion for others who are suffering.
• Being determined to overcome the pain, to live your life.

Each RA onset story helps

Every story has its uniqueness. I even read for the first time about an onset of RA that is exactly like what is described in textbooks. However, together the stories also provide a clearer picture of RA. I am convinced that our own voices, telling our own stories is the only way that the reality of RA can be known. When the depiction of RA onset is more accurate, then diagnosis will be easier to obtain.

Recommended reading

• Predictors of Pain in DAS28 Remission
• Winter Solstice Lunar Eclipse: Was the Moon Really Red?
• Should Chronic Pain Patients Be Treated in the ER?

Lori’s Rheumatoid Arthritis story
Joanne’s Rheumatoid Arthritis story
Brenda’s Rheumatoid Arthritis story
Morgan’s Rheumatoid Arthritis story

This is Lori’s onset of Rheumatoid Arthritis story, in her own words.

My onset story fortunately is rather uneventful. We were on vacation in July 2010 in the mountains in Utah. We had been white water rafting the day before; and when I woke up the next morning I noticed my left little finger was sore. I figured I must have caught in on the rope or something else the day prior. The next morning, a couple more fingers were sore. Much like they had been pulled back too far. Again, we had been rafting, rock climbing, and doing so many things I figured I just didn’t remember hurting them. By the end of the week, all my fingers were sore & swollen & tight. Still at this point, I was thinking it was the high elevation, the 110 degree heat, or all the junk we were eating on vacation and just assumed when we got back home (Southern Coastal California) where it was cooler, it would go away.

It didn’t. It progressively got worse.  Soon, every single morning every finger joint was tight, stiff & puffy. 

I hit the internet and did a couple Google searches: “tight stiff fingers morning” and every hit came up with the same diagnosis: Rheumatoid Arthritis. I was very busy in the fall in my personal life and didn’t have time to go to my Dr. I finally went in November and walked in his office, presented the classic symptoms, and told him I thought I had RA. My Dr. is awesome. He ran some labs & confirmed what I already knew. He referred me to a rheumatologist in January 2011 who basically confirmed the RA and ruled out any additional autoimmune disorders.

That was it. I was very lucky. No running around. No rude, ignorant doctors. I’m very fortunate that everything was identified so quickly.

My RA started in my fingers in July 2010. It pretty much stayed there until January 2011. Now it is March 2011 and I feel it in my right elbow, right knee, bilateral wrists, bilateral ankles, & most of my toes. Every morning my fingers are the same and it takes several hours to get them working. Some days they loosen up, some days they don’t. But the rest of my joints seem to be hit randomly. I wake up and do a quick assessment of which ones seem to have been struck during the night.

So far, my RA has not been horribly painful.  It is more of a tight, stiff, swollen feeling in most of my joints. My right knee and right elbow tend of get fluid and also feel squishy but the pain is more annoying than painful. I am lucky. But the fatigue, now that is another story. That is the hardest part of adjusting to this disease for me. I was a person who could thrive on 5-6 hours of sleep. Now I need 10 hours, and often a nap. There are times that I can hardly wait to get home to lie down.

That’s about it so far.  I continue to think I am VERY lucky, especially after reading many others’ stories.

This is Joanne’s onset of Rheumatoid Arthritis story, in her own words.

My name is Joanne. I’m 21 years old and I live in northern Ohio. My whole life I’ve been a very over-active person. Growing up on a farm with horses, dogs, cats and goats I had a lot of chores and stuff to do. I was always outside playing, running around, having fun. Throughout school, and high school I was always into running. Once high school started I ran track and cross country mainly focusing on track. I was one of the top runners on our team all 4 years. I never had any kind of joint issues, sprained ankles, broken bones, nothing. My body was as sturdy as an ox. I was muscular and strong. Once I graduated in 2007 I continued to run, mainly running down back roads near my parents’ house. I was logging in around 7 miles a day, giving myself every Sunday to rest.

In fall of 07 I started working at a horse training facility, helping out the trainer, feeding, caring, and riding the horses. I started noticed pain and a stinging in my hands after about a month of working there. I figured it was just because I was working long hours doing hard work. So, I shrugged it off. Then my left thumb started swelling up, which I thought was odd because I had never stubbed it or even hurt it for that matter. So I said something to my doctor about it but she said it could just be I stubbed it and didn’t even notice it, keep moving it and the swelling should go down. Well, it didn’t.

Over the next few years I started to slow down on the running, and everything else for that matter. I wanted to run, but I just couldn’t. I thought that was very odd, but once again, I shrugged it off. I was running only a few times a week now. Logging in only about 15 miles a week. I was just so tired all the time. So I told my doctor, she said it was most likely from my depression (I was diagnosed when I was 16 and had been on Zoloft since). Okay, I’ll take that. Then in 2010, everything went downhill. It was like a smack in the face.

In June of 2010 I started having pain in my feet and ankles. Not normal pain, not the “I must have sprained something” kind of pain. This pain was a stinging kind of pain; it felt like I had needles poking every inch of my feet and ankles. I started not being able to walk in the mornings, taking 3 minutes just to get down the stairs. And I could not even run!! And when I tried, I would fall because my feet could not handle it. My hands started to swell up and ache all over. I couldn’t even bend my left thumb any more, it was frozen stiff. It hurt to write, type, open doors, turn on facets, open cans and milk jugs.

Everything was a challenge. So I told my mother, who herself has Rheumatoid Arthritis. It never even crossed my mind that I could have that. I’m 21 years old, I can’t get arthritis. No way, I’m too active. She said I needed to see a rheumatologist. My aunt was diagnosed with JRA when she was 12 so I figured okay, maybe its RA…but it probably isn’t. I could not get in till November; it was already July and things just kept getting worse. I took the fall off from school because I felt like I couldn’t give what I needed to. There were days when I could not even get out of bed because I didn’t want to walk, I didn’t want to even move. I just wanted to lie in my bed where I was safe

My fatigue just kept getting worse, and it wasn’t helping my depression. Luckily I had a new man in my life who helped me keep my head up and brought new meaning to everything. But my RA continued to hurt, continued to take away everything from me, bit by bit.

Once November came around I was very bitter and angry because of the pain I was in. The doctor ran some blood tests, took x-rays of my hands and feet. And everything came back positive to having RA. Everything was off the charts I remember, the tests and stuff are blurry to me but I just remember my doctor telling me “Joanne, you have severe Rheumatoid Arthritis.” My heart stopped. WHAT? I’m 21 years old I can’t have this! I’m a runner, I lift, and I work out all the time. How can this happen? He told me that it was because it ran in my family. I had the Rheumatoid factor. There was no way to prevent me from getting this disease. But he promised me by April I will be able to run like I used to again, so I was happy, for the most part.

He put me on methotrexate, a drug known to slow down the progression of RA – 8 of them, once a week. It’s now March and I feel hardly any difference from when I wasn’t on the pills. Since the beginning of 2011, my right knee has been affected, swelling, pain, stiffness, and my left elbow is showing signs along with my right wrist. I keep going back to my rheumatologist explaining to him that the meds are not doing anything. He just says to wait. I’ve been on Naproxen and it did not do a thing. I was on Vicodin for pain, which didn’t really do much. Now he has me on Tramadol, which seems to help a little. I don’t take it every day though because it gives me a ‘buzz’. So instead I take it every weekend before bed in hopes I can get some relief the next day. But it usually results in me staying up all night due to the insomnia the Tramadol causes. I have yet to really find some good pain relief besides hot presses and hot baths. The meds also mess with my appetite. I went from 135 to 123 in less than a month. I mainly force myself to eat, but it’s a daily struggle. I’m still healthy looking which is good, but it’s starting to scare me. I went from a 6 to a 4 now. And I’m already a small person, only standing at 5’2 ½. Plus not working out like used to has caused my muscle mass to decrease drastically, which makes me very, very sad. I no longer have the muscular build I used to.

I’m seeing a physical therapist now also, in hopes she can help me get back some normalcy in my life. I hope the methotrexate kicks in, I want to be put on other meds also, but my rheumatologist says to keep waiting. I’ve been trying to see other doctors, but the waiting lists are months long. And I feel while I’m waiting this disease is having a blast taking over all my joints. Luckily I have a great support group, my boyfriend, my close friends, and my family.

Since being diagnosed with RA, I’ve done countless hours of research and found out that I’m not alone. Sites like this make it easier to live with this disease; I don’t feel so alone any more. Even though this disease has taken away so much from me, I feel like it’s given me something, and that’s learning to overcome obstacles, whatever they may be. I’m glad I found this site and I hope my story can help others as much as this site and reading other peoples’ stories has helped me.

This is Brenda’s onset of Rheumatoid Arthritis story, in her own words.

Here is my story- thanks and kudos to you for such a great site. Your blog has become so much more. It is a source of inspiration to many. Your FB page is also a great avenue for those who suffer from RA – what a great service you have provided and created. Truly as a former forum on RA I understand the challenges you face. You have done a superb job.

Last week after my Orencia infusion, where it took over an hour to find a vein that would give blood in addition to IV therapy.  I took to the internet to try and diagnose myself. I have done this numerous times in the past 7 years. In addition to the bloodless veins, I have been having a tough time with my neck. You may be familiar with some of my symptoms, knife stabbing eyeball pain radiating from the rib cage upwards through the shoulder to the neck- a masseuse’ nightmare- muscles and tendons so tight they feel like a rock, alternating from the right to the left side for the past 3 months. After 40 minutes of research, it dawned on me that my Reynaud’s disease was active again. Sadly years later there still is limited information. I was however, very excited to find the RA Warrior site. What a delightful informative site. You see, in 2007 I started my own RA Forum, after having had bad experiences on several other forums that seemed to attract trouble. It was a great place, we had only 25 members. We shared daily events, new information. Mostly it was a place to connect, knowing the other members could relate to the insanity we all were thrown into once being diagnosed for RA and other autoimmune diseases. One day my best RA friend who helped me run the forum died. Laurie was a wonderful woman, who was unable to use most RA drugs and suffered complications from prednisone and died suddenly. Everyone on the site was affected by her passing and gradually the board to disappeared.

I was born with a birth defect, leaving me deaf in my left ear and with what is called a rye neck (similar to torticolis). I have had a lifetime of neck and back problems accompanied by severe headaches. I was also diagnosed with juvenile arthritis. I was able to combat these problems with chiropractic, aspirin and ibuprofen. In 2001 while on vacation my husband had a heart attack.  We were in a small town in Colorado and he had to be medivaced out. In 2004 my son was diagnosed with Hodgkin’s. When they say trauma often leads to full blown RA –well for me they weren’t joking.

I opened an Internet Cafe and Espresso Shop in May of 2004, and in late October my foot felt as if it was broken. Several days later I went to the ER. The doctor there said I had fluid in my toe joints. He recommended I see a specialist- a rheumatologist. My heart sank. My GP had just done a third blood test. The initial results indicated Lupus. My father and grandmother both battled RA. Within a week both my feet and hands were “broken.” Within 2 weeks I was seen by a RA doctor, who confirmed, along with my last blood tests that indeed I had RA. He said my Rheumatoid factor and CCP results were off the chart.  He noted that X-rays confirmed RA activity.  He wanted to put me on Enbrel as soon as possible. My insurance company disagreed. He put me on steroids and MTX, several weeks later I thought I was having diarrhea, only to discover the toilet full of blood. The first of many allergy reactions I would experience over the years to numerous NSAIDs, and RA drugs.

Over the next 2 years, my doctor and insurance company argued. My doctor finally beat the insurance company, but he had to turn me over to a different doctor. The University Hospital agreed to administer my Enbrel shot twice a week. It was crazy, but it was better than being bed-ridden. I spent 4 months unable to care for myself.  I was so embarrassed, humiliated, despondent during that time of my life. Because I looked “great” it was hard to explain why I was no longer able to work, to accomplish even simple tasks. I began to think maybe it was in my head. Maybe I was wanting sympathy because my husband and son were ill. I applied for Social Security Disability and closed my business. In 2007 with the help of an attorney I was finally approved. I did not know whether to laugh or cry when the letter arrived. My attorney had requested a special hearing. The letter was an inch thick. There was one paragraph that sticks in my mind – the judge gave the most credence to my GP who had spent 10 years trying to figure out what was wrong with me. She said she could not believe that I continued trying to work, continued to have a positive attitude, despite the debilitation that had occurred over the years from RA, Fibromyalgia, Reynauds.

It has taken 5 years for me to begin to feel like I might just be able to live with this disease. This summer I was diagnosed with Psoriatic Arthritis (just another pain in the- well you know). With the help of biologics, numerous doctors, my husband and son I am able to walk today. I do not think I will ever be able to resume the life I had. I will never regain that sharp mind, the quick wit, the never ending energy to work 16 hours a day, 7 days a week. That Brenda is gone.

 But the new Brenda is going to be okay. I tell myself that every day. At night I lie in bed and thank God for giving me another day, and ask him to find a cure for all who suffer from auto-immune diseases. I know there is no going back. I know that we all would change things in our lives if we could. But somehow there is a larger part of me that realizes that this too, this insane disease was given to me for a reason I will never know. That it too is a part of my journey. So I just keep on trudging, keep on keeping on and each day I find something else to be grateful for amidst the RA insanity.

This is Morgan’s onset of Rheumatoid Arthritis story, in her own words.

Hi my name is Morgan. I am 70 years old, and live in WA State. I was officially diagnosed with RA by a doctor in October of 2006. For years, every doctor who saw me ran tests for RA, and Lupus; results were negative for both the Rheumatoid factor and Lupus, so it was decided I must have fibromyalgia.

But let me start at the beginning…as a child, my excruciating leg pains were called “growing pains,” and in my teens my blurred vision was treated with reading glasses for “dry, tired eyes.”

I said “these glasses don’t help” and my parents were told “It’s in her imagination;” an ophthalmologist later checked them and discovered they were “No more than window glass.” At the same time I began complaining of a ‘choking’ feeling, and could not tolerate the weight of a string of pearls at the base of my throat, or any garment that had a small neck. In nursing college, my anatomy instructor used me as an example for the class to see “an enlarged” thyroid gland. My complaints were scoffed at by my parents, and I never saw a doctor. Married to an active duty Air Force Pilot, in my twenties, I was finally diagnosed with hypothyroidism, as a result of the viral infection known as Hashimoto’s thyroiditis, which compromises the thyroid gland’s ability to function; I was started on complete replacement therapy with Synthroid. During this time I had several startling, but mild, experiences of numbness and tingling over my entire body, followed by painful feet and hands, but it never lasted very long, and got no more than fleeting attention from me.

Then, one day, I was awakened by sharp pain in my right shoulder that took weeks to go away. I decided it was from carrying too heavy a load when gardening, or picking up my toddler…and then, it did go away, so why mention it to anyone?

We were living overseas for a time, and a difficult pregnancy brought us back to the states earlier than planned. After the birth of the next two daughters, for months after each one, my knees were painful and worst of all, not quite trustworthy coming down stairs. Many times I would sit down in the middle of the stairs, afraid I would fall with an infant in my arms. The civilian doctor I had at the time decided to test. He did not say what for, but I had to return for results. At that time he commented, “Well, you don’t have Lupus,” and I was startled enough for him to add that even if I did have Lupus, “People are living much longer with it today than they used to; I really think you might have a condition where you are allergic to your own body.” Now, bless his heart, does that sound like a suggestion of RA without saying it? A long time later I was able to get chart copies and saw that he had also tested for RA… but I am seronegative. Other doctors down through the years have done the same thing in the same way, all without honestly facing me and telling me what they suspected. Why? Why are so many Internists (GP’s seem to call themselves this today; I do not know if all of them are qualified to claim that title or not) averse to diagnosing a condition whose signs and symptoms are so well known, and sharing it with the patient?

Over the next ten years, there were many in and out of remission experiences, some of them quite bad. I was forced to discontinue Water Aerobics (which I loved) when my knees swelled up like Nerf footballs.

I wrapped them and stayed home with the kids. I think I must be really fortunate that there were so many times of remission, or I would be in worse shape than I am now.

One day I woke up and could not turn over, the pain was so bad. Every joint in my body was screaming, and the pain and the fatigue were so intense that I was reduced to a fetal position for days at a time. I called the doctor, but could not drive the car to get in to see him. When I did, he tested for Lyme disease, but by the time he tested I would have been in the second or third phase of the disease and tested negative. (Yes I did have a bite from something while visiting in S Dakota 4 months before, with a bulls eye rash et all, but I was the only one who had seen it.) Then he refused anything for pain other than Tylenol “because you will become an addict.” This is the doc who finally X-rayed an ankle that hurt so constantly and severely that I wondered if there was a fracture—it showed nothing abnormal. He finally referred me to a rheumatologist who diagnosed Fibromyalgia, stated firmly that he did not think I had RA, and started me on Plaquinel and Effexor, and left town. Permanently. It took me seven years to find another rheumatologist who would take patients on military insurance. Two weeks to find another GP.

By this time, I began to request an MRI; no luck, no comment, just ignored; until I began falling down.

I was having so much trouble walking a straight line, and then boom, no sense of balance; and the migraines of my youth were back in force. I had green and purple bruises on both knees, I fell in the garden and chipped my front teeth (didn’t even know I had hit them that hard). Finally, I was referred to a Neurologist who ordered a head MRI, then put me on a very strong med for what he termed “uncommon migraine,” and I nearly died from an interaction with the Effexor and Plaquinel I was on. Thank God for an alert pharmacist.

Next thing I knew I woke up one morning in 2007, and couldn’t walk; the pain in my lower back, at L- 4/5, and down my right leg were excruciating. A new neurologist discovered congenital narrowing of the spine and trapped nerves complicated by arthritic damage to the bone. This was confirmed by more x-rays and the extensive MRIs done by the 2nd rheumy which showed moderate to severe damage typical of RA. Voila! All these years and they finally do an MRI at 69 years of age…Well, the surgery was a success; I have not had the spinal pain and nerve pain since, I now have rods in by back, so I hope I do not need any more MRIs. My dear neurosurgeon has moved to another state, so I hope I do not need that kind of help again, and I saw a new rheumatologist two weeks ago.

 He decided to, “Treat your fibromyalgia first.” (Sound familiar?) “…Before we treat the RA.” Now I am in the process of increasing Lyrica, 50 mg up to four a day. If I had ‘balance’ problems before, you should see me now. And brain fog? I am reluctant to drive, which means being totally isolated until I see what this stuff does to me after I reach the full dose and have been on it a while.

I hope my story can help others comprehend the effects of autoimmune diseases. It’s been 7 1/2 years since my RA diagnosis, and I am still seeking ways to deal with it. I accept the fact of the disease, I Just need to stay creative in how I deal with the limitations.

<< Back to Onset Story main page.                                     Go to page 23 of Onset Stories. >>

Daisy’s Rheumatoid Arthritis story
Robin’s Rheumatoid Arthritis story
Terri’s Rheumatoid Arthritis story
Joanie’s Rheumatoid Arthritis story

This is Daisy’s onset of Rheumatoid Arthritis story, in her own words.

I was born on 18th November 1983, which means I recently turned 27. I live in Nairobi, Kenya. In 2006, I graduated from Uni with a Law Degree and was looking forward to the rest of my (exciting) life.

Growing up, I didn’t have major health challenges. I suffered terrible duodenitis when I was 11-12 but it was well managed and disappeared as I grew older. The only problem I remember constantly having was that I was always tired. I couldn’t stand for long and almost fainted many times. My mom and teachers thought I had a weight problem. My teachers said I was just fat and lazy! Sigh.

Back to 2006. In October of 2006, I started working at a fantastic law firm as an intern and joined the school of law. I felt so blessed and joyful. It was the best of times. A few months into my internship, in February of 2007, I started feeling unusually fatigued. I assumed I was working too hard. I really pushed myself as an intern and worked really long hours. In March of 2007, I started experiencing swelling and pain in my fingers and wrists. Before long, my fingers looked like sausages! Everyone assumed I had spent too much time on my computer typing up briefs and legal opinions. It made sense. When the pain became unbearable, I visited the hospital and saw a GP. He dismissed it and prescribed some paracetamol (Tylenol) which I took. It helped for about a week.

When the pain returned, it got worse and started spreading. It spread to my knees and my ankles. One day, I was in the library with my boss doing some research. I got up to pick a book from the shelf and immediately started screaming and sat down again. The pain was unbearable. Soon I had trouble walking. I couldn’t understand what was happening. After about three weeks, I couldn’t do simple things like comb my hair, brush my teeth, dress up in the morning or even type. I couldn’t raise my arms and I was constantly tired. Tired is an understatement.

One day my boss gently told me that his cousin had died of lupus and she had similar symptoms. I got very scared. I thought I was dying. I had put off seeing a doctor after the paracetamol incident, but that was the boost I needed. I decided to do something about it. I had heard of lupus and I was horrified.

I spoke to my cousin who told me not to see a GP. At this point I must digress a little and say that I am so glad in Kenya there are no waiting lists when it comes to setting up appointments with specialists. Having read most of the stories in here, I am so thankful that I was able to see a rheumatologist immediately. That by the way was a coincidence. My cousin told me that their family doctor was a rheumatologist and that she didn’t really know what that meant. The reason she wanted me to see him however was that “he is very smart and will figure out what’s up in a few minutes!” Neither of us knew that God was leading me to him because he was exactly the doctor I needed to see!

I had never had of Rheumatoid Arthritis at that point, and I didn’t know what sort of doctor a rheumatologist was. I do now, however. I saw the doctor towards the end of April 2007 and sure enough within minutes; he told me I had some form of arthritis. He ordered some blood tests and X-Rays to confirm RA and rule out lupus, which he suspected as well. I remember him asking me to get on the bed so that he could give me a jab.

Now you must understand I hate needles. And that’s putting it mildly. When I refused, he told me that if he didn’t do it, I would be wheeled out of my house on a wheelchair the next day. I dutifully obliged since at that point I was bordering on being totally paralysed. I could barely move.

The blood work confirmed RA and ruled out Lupus. The jab was a miracle!! When I woke up the next day, I felt better than I had in months! I realized that the symptoms had been there for a long time but I had ignored them. Subsequently, I have experienced Sjogren’s syndrome, chest problems, I have lost my voice, and the fatigue never really goes away. It’s like a bad smell that lingers! In the last one year I find it very difficult to drive in traffic or to drive long distances. I also get very stiff after sitting for more than thirty minutes. And of course there is that horrible morning stiffness.

There have been hurtful comments that I know are borne out of ignorance. There have been times I have wished some loved ones were more understanding and patient. But I have been lucky. I have good family and friends who try to understand and even when they don’t, they just try to be there. It’s work in progress. I worry about getting pregnant (I am not married yet) and my ability to look after a  family with this illness but I draw encouragement from all the onset stories here.

I’ve been on prednisone, aceclofenac, methotrexate, leflunomide, folic acid, and calcium supplements since I was diagnosed. That’s 4 years this April. I have bad months and good months usually in equal measure. I hate (and love) methotrexate and her friends but when I don’t take them I feel so lousy so I’ll stick to taking them.

Last year I had horrible flares. My rheumy admitted me in May and administered a mix of solumedrol and MabThera (Rituxan). He told me it was the strongest treatment available. I was sick for weeks. I’m told its mild chemo. I pray for cancer patients everyday now. That was a horrible experience. But the flares did stop for many months. Lately, the flares have started again and he’s mentioned that we may have to perform a repeat dose in a few weeks.

I am thankful to God that I was diagnosed early and that He has faithfully supplied the (very expensive) drugs I need. My work as a practicing advocate is so demanding and draining but He gives me the grace and strength to get through each week! My life really is a miracle. His miracle.

This is Robin’s onset of Rheumatoid Arthritis story, in his own words.

My name is Robin. I just got diagnosed Friday.

Around Thanksgiving 2010, I started having just a random pain somewhere (one knee, the other knee, shoulder, feet – you get the idea) but it would invariably get to my hands, which hurt now as I type this. It went away after a few days (then), so I didn’t think much about it.

Then, it got my hands again a week or so later, so I start wondering “Ok, what did I eat? What was in common with the last time?” The best I could come up with was something with peanut oil in them. I’d had some Japanese food with peanut sauce the day of the first flare up with my hands and a PBJ on the next. So, I dismissed it as a developing peanut allergy and started looking around on the net about that, all the time RA and Gout seem to be the biggest hits with my symptoms. I was hoping taking my usual spring time allergy meds and Benadryl would make it go away (again, thinking food allergy), all the while avoiding things that touch peanuts. I have a new found sympathy with folks that have peanut and other food allergies, it’s difficult to avoid.

At some point after the New Year, it just hit a tipping point where things just hurt everywhere. It seemed like every part of my body that bent, twisted, or pivoted was on fire. A bit of an exaggeration in all reality, but it hurt everywhere. I start to doubt the idea of a food allergy, as all the Benadryl did was just make me sleepy and the pain wasn’t going away. I start leaning toward the gout & arthritis idea, and pick up some glucosamine the next time I was at Costco. I’m not so sure that worked either; the pain wasn’t going away.

So, in mid-January 2011, I’m talking with my mother about all the pain. She’s got arthritis pretty bad in her hands, and has had it since the mid 90′s. I thought it was osteoarthritis (she’s in her early 70′s), so I didn’t make much of a connection. She tells me it’s both RA and osteoarthritis and that there’s about 5-6 other family members (cousins, aunts, distant relatives) that have RA too. She also recommends that I contact my primary doctor to get tested.

That was about 5 weeks ago. Two weeks ago, I explain all this to my primary doctor (who my mother and I happen to share). He takes a look at my hands (which at this point are marginally useful, they hurt so much), and he sees the dark rings around my knuckles. He strongly suggests RA and just needs the evidence to confirm it. I take a horde of blood work with the whole gamut of RA indicators.

Fast forward to Friday, my doctor describes the Rheumatoid factor in numbers and what normal is. Mine is about 3-4 times that. Then he talks about anti-CCP, again what’s normal, and then mine that is again orders of magnitude higher. We discuss seeing a rheumatologist (appointment coming up in a week or so).

So, I’m at the beginning of this road, and I get it’s not an easy one, but one that’s been traveled by a surprising number of people (some of us hobbling as we go). I still find myself thinking “What did I do, what did I eat that caused this? What can I undo to make it go away? Is it stress induced? Can I just mellow out, de-stress, and it’ll go away?” Poking around your site, I find I’m not alone thinking that either, and that this just *is what it is*.

Hopefully this might help some guys out there that find this. I’ve read it’s 2-3 times less likely in men, but obviously not impossible.

This is Terri’s onset of Rheumatoid Arthritis story, in her own words.

Looking back, I realize my RA may have started very slowly more than five years ago, as a very mild case. I was diagnosed with RA one year ago while it was still a mild case, but it began progressing more rapidly over the past six months.

Because I’ve read that RA may be associated with gastrointestinal dysfunction, I believe my RA may have been triggered by a major health event in my life: when my appendix ruptured six years ago. Also, I had life-threatening complications, but that may not be relevant.

In addition to ongoing fatigue after that incident, I began experiencing pain in the ball of my foot, and occasionally my heels and ankles. At the time, I blamed the foot pain on my narrow feet and difficulty finding shoes to fit properly. But now I believe my foot pain was the first symptom.

Almost three years ago, I was diagnosed with collagenous colitis, a fairly rare disorder that has been associated with autoimmune diseases, specifically including RA (see links to Mayo Clinic information if you aren’t familiar with this condition). But I still didn’t suspect RA.

Approximately two years ago, along with fatigue and general weakness, I started having some odd joint pain in one knee or the other, and sometimes I had elbow tendinitis with no known cause. Also my hands seemed “weaker” for lack of better explanation why bottles and jars were more difficult to open.

My mother (now deceased), who had severe RA, often asked me why the palms of my hands were so red but I didn’t know why and shrugged it off. It wasn’t until I started having neck pain over a year ago, and my mother told me that my red palms could indicate RA, that I starting thinking about checking it out. When four joints in both hands (knuckle and middle joints) became swollen and painful, then it made sense to me to check it out, and I made an appointment with my mother’s rheumatologist.

But when her rheumatologist diagnosed that I had RA – either early-stage or a mild case – it took me by surprise. He also found low thyroid and mild anemia. I spent six months in denial about the RA diagnosis and refused to take DMARDs, only agreeing to take meloxicam (an NSAID). Also, my symptoms came and went so often, I doubted the RA diagnosis. I was RF positive with the first test, but no other markers.

Six months ago, when the fatigue and pain made RA more of a reality for me, and more joints were quickly adding on, I agreed to begin methotrexate therapy and take prednisone when needed. But MTX didn’t significantly relieve my symptoms. Now, RA affects most of my joints. So I recently started on weekly Enbrel injections along with low-dose MTX.

Thank you for letting me share my story!

This is Joanie’s onset of Rheumatoid Arthritis story, in her own words.

It all started with pain and swelling in one finger that was so bad I thought I had sprained or broken it somehow. A trip to my family doctor let me know that neither was the case and my doctor had no explanation. The pain in my finger subsided after about 36 hours and I was fine. A couple months after that, my wrist on the opposite hand swelled up and was so painful I truly thought it was broken. I didn’t go to the doctor this time and just dealt with the pain for about 2 days. This continued happening about every 2-3 months waking up with something else swollen that I was unable to move.

It wasn’t until I woke up one morning (had gone to bed in no pain) with my knee swollen and unable to walk that I started to wonder if this could be Rheumatoid Arthritis. I am a medical transcriptionist and even though this was not something I transcribed at all I had some knowledge of the disease because my sister was diagnosed with it. My first phone call that morning was to my sister and then to my sister’s rheumatoid doctor to schedule an appointment.

This rheumatologist was very thorough and I feel she ran all the right tests.  She did a Rheumatoid factor test, which was normal like it was when my family doctor performed it, but she also did a C-reactive protein test that came back abnormally high.  She did the x-rays of my hands and wrists that came back normal, and not surprisingly since, I think, this disease had just started in the last year and a half or so. At my follow-up visit, after all my tests, she explained that I definitely had Rheumatoid Arthritis and wanted to start me on some medications and then she started explaining the side effects of these medications to me, which scared me to death!

I do not like to take medication. So I figured that these “flare ups” only happen every so often and I could deal with that instead of all the side effects from the medication and I never went back to see the rheumatologist. Boy, was I wrong! It was summer time and being a school bus driver also I was off for the summer and able to do my medical transcription work on my laptop. So my husband and I traveled to our summer campground to have a relaxing summer. About a month into my summer I awoke and was not able to move my head. The back of my neck was so painful I couldn’t even get out of bed. This lasted for 2 days. Two weeks later, I woke up with my knee swollen, which was not good because I was just put in a cast and on crutches from falling and breaking my opposite foot.

Needless to say, that was a horrible summer! It seems every couple of months I am waking up with something else swollen or sore and not able to move. I have had to call off from work because I cannot drive a school bus on days I am “flaring up.” I have since lost my health insurance and not been able to go back to that wonderful rheumatoid doctor that wanted to help me. This disease is ruining my life! Six weeks ago I had pneumonia and was put in the hospital for 2 days and was sent home on Prednisone and I was on it for almost 2 months. I didn’t have ONE “flare up” in that time. Imagine that! Now that I am off it I wake up with my ankles hurting so bad I can hardly walk. My hope is for more affordable health care in the US and a cure for RA! Thank you Kelly for all you do! You give us all hope!

<< Back to Onset Story main page.                                     Go to page 22 of Onset Stories. >>

More RA stories

Four new RA onset stories – click here. We now have at least 75 stories! And several more on the way! These are our stories in our own words. If you don’t have RA, they’ll provide you with a more accurate picture of what it is and what it is like. If you do have RA, they’ll help you know that you’re not alone. The thing people say to me the most when they write me a letter is “Now I know I’m not crazy.” Having RA can make you doubt yourself until you meet others who have similar experiences.

Central Florida RA meet-up

This past Saturday, six brave girls got together for the first local support meeting in Central Florida! Several others said they’d attend next time, including a couple of guys. Watch for announcement about when and where.

And if you have a meet-up planned in your area, let me know so I can help get the word out. If you need help to get started, please also feel free to contact Arthritis Introspective. They are the experts and glad to help.

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Recommended reading

• Patient Stories May Provide Real Help via Social Media
• Which Biologic Treatment Should RA Patients Try Next?
• Onset of Rheumatoid Arthritis Stories

Kathy’s Rheumatoid Arthritis story
Jacqueline’s Rheumatoid Arthritis story
Angie’s Rheumatoid Arthritis story
Molly’s Rheumatoid Arthritis story

This is Kathy’s onset of Rheumatoid Arthritis story, in her own words.

I am a nurse and work with doctors all the time, but no one guessed I had RA. I certainly wasn’t aware of what it was or how it presented even after being a nurse for years. I worked in surgery so I know mostly surgeons.  When I went in for a checkup, no symptoms were present so my regular doctor never knew about it.

 My husband and I moved to Denver about eight years ago. We moved from our home to an apartment which was on the third floor. I found walking up and down the stairs exhausting.  I had worked all my life, but when I got to Denver I had no energy. People said it was the altitude and I thought that might be the case. I was fatigued and depressed and really had no idea why. I was like this for months. I thought I was depressed but I really didn’t know what was wrong.

I didn’t work for two years and then a situation caused me to go back. I did traveling nursing in short 1 or 2 week per month increments. It was very stressful fitting into new situations and meeting new people. I liked it, but I just worked and went back to my hotel and slept.  It happened one day very suddenly, I got some pain in my right hand and within minutes it was swollen, painful and hot. I thought I had overused my hand during work and took pain medicine and used ice on it. Well it didn’t go away, my wrist swelled up so I couldn’t use my hand. It eventually went away but then the swelling would go back and forth between my two wrists.

The surgeons thought I had carpal tunnel. I also had neck pain and shoulder pain at different times so I started seeing a chiropractor on a regular basis. This went on for quite a while and it came and went. I felt normal at times and then I’d get the swelling and in a few days it was gone. During this time my feet started hurting, mostly the left but the right also. Surgeons thought this was plantar fasciitis and started treating me with boots I wore at night to keep my feet flexed. My chiropractor mentioned to me he thought I had RA. I was shocked at this but went to see my regular doctor and told her what had been happening. She did a blood test and I had a high Rheumatoid factor. She immediately sent me to Denver Arthritis Clinic and they put me on Celebrex and Remicade within a couple of weeks all my swelling went away and it’s not come back. I get Remicade infusions every 8 weeks. I still have the fatigue and when I work out I get more muscle pain then I’ve ever had. I found a part time (day a week) job here in Denver which is perfect for me. My husband and I downsized everything in our lives so I could work less.

I have read about RA for the last two years and now I understand it. I still can’t believe how long it took for any health care professional to check me for it. It was a least 6 years from onset to diagnose. Reading the stories now I understand I was lucky it only took six years.

The worst thing is the fatigue which never seems to leave. Sometimes I feel almost normal but most of the time I am very tired. Others perception of RA is that if you’re not swollen or limping, you should be fine and that’s not the case. My husband is wonderful about it and I am lucky to have him.  He does all the chores I can’t do and helps with cooking and shopping. I feel very lucky that at least the painful swelling has gone and my feet are normal again. I couldn’t wear a normal shoe for a long time. I realize now that if I as a nurse with good health care and insurance couldn’t figure it out, how is anybody supposed too?  It’s one of the unseen diseases that’s just not on the radar. I never learned about RA in school and doctors didn’t suggest it to me. It must be very under diagnosed in our society. Also the fact it’s mostly women that have it. People tend to think that it’s emotional.  People don’t believe what they can’t see.

I hope this helps someone. I love all the stores here and find comfort in them. I want to start an RA group here in Denver.

I did want to add that years before I showed any symptoms I had some nodules on my toes that could not be diagnosed and eventually left. Those most of been rheumatoid nodules and they appeared years before the swelling. I added a picture of my dog who I love because she never tells me “You shouldn’t be tired.” Thanks for what you’re doing.

This is Jacqueline’s onset of Rheumatoid Arthritis story, in her own words.

I am a secretary who worked at a C-shaped desk. I’ve had to make modifications to help me be able to work; one was getting rid of that desk!  I noticed in June of ’09, right after I turned 38, that the tendon in my right thumb was sore. Figured it was because I pushed off with my hand on my desk to get to the other side. I tried to stop pushing off desk. After a couple of weeks, I noticed that my left thumb was starting to hurt too, just in a little bit of a different spot. I thought nothing of it. By August, my ring fingers hurt and my pinkies. By November my knees hurt and my left elbow hurt to bend it and sleep on it at night.

We are military, so I made an appointment with my primary care doctor. I got the appointment for December 15th. He looked at my joints and diagnosed me with Fibromyalgia. He never touched me, or tested me for it, but documented that I had it. He ordered blood work and my C-reactive was 8 times higher than normal. He referred me to a rheumatologist and I was able to get the appointment with her in February ’10.

The diagnosis of fibromyalgia did not jive with me. I have friends who have fibromyalgia and I know it has to do with muscles, not joints. I started researching online and found Mayo Clinic.com. They have a symptom checker where you check all the symptoms that you have. After you input everything, it produces a list of possible diseases with the first one being what it more than likely is. It also gives you a list of other things it could be. The first thing for me was Rheumatoid Arthritis. I started researching RA and found that a lot of the symptoms of RA are what I have: symmetrical joint pain, worsening and not getting better. By the time I saw my rheumatologist, my hands, wrist, elbows, knees, ankles, and big toes were affected. This all progressed over nine months. Slowly.

There was no waking up not being able to walk. It was very gradual for me. At first I paid no attention to the pain I was feeling or how it was “moving” because it happened so slowly. Nine months is a long time to get worse and worse. By November I knew something wasn’t right because my body was not healing even though I changed the habits that I thought was causing the pain.

My rheumatologist checked me for fibromyalgia with the pressure test and found I did not have that. She said she thought it was more than likely RA. She took 18 vials of blood and started me on prednisone. When I went back two weeks later, all my blood work was great. My C-reactive was normal. I tested negative for Rheumatoid factor. My blood work showed no signs of inflammation. The prednisone helped tremendously, except that my right hand was still swollen. She did mention that I was the first patient she had ever had whose blood work came back showing no inflammation, yet she was looking at it and could feel it.

She decided to take me off the prednisone because she wanted an MRI of my hand and elbow (because the elbow hurt tremendously) and she wanted it not compromised by the prednisone. THAT was a tough two weeks. Freedom from jail, and now back in it and it felt worse! When I went back in two more weeks to find out results of MRI I was not very hopeful. When she said, “Again your blood work looks great and I am very glad we did the MRI…” I was figuring she was gonna say cause you are crazy and nothing is wrong with you. : ) No, that is not what she said. She said the MRI on my hand “already showed bone erosion.” She confirmed RA by the MRI.

I started back on prednisone and she put me on Methotrexate by mouth. The Methotrexate pills didn’t last long. The pain in my stomach from the pills was horrible! We then switched to shots. That lasted only a few months. The nausea got worse and worse and lasted longer and longer with no improvement to my symptoms. And I had horrible calf pain after starting shots that didn’t quit till a month after being off the shots! I have switched my biologic three times now, I started with Humira, then moved to Enbrel, and now I am on Cimzia. I am off all DMARDs because Arava (after Methotrexate) has made my hair fall out enough to where I am so vain I wear a wig. Granted it is a cute one, but still! : ) Have to wait at least three months before starting new DMARD because Arava stays in your system a while.

Last time I went in, it is obvious that I have bone growth now on knuckles that had bone erosion on them. Still in a lot of pain and my blood work STILL shows I am fine! THAT makes me feel crazy! My rheumatologist said in all her career she has only had two other patients whose RA acts like mine does. Blood work fine, meds not controlling RA, or meds work for a bit, then quit in a month. But she HAS seen it, and I am not crazy. That makes me feel better…sort of.  My rheumatologist said my RA is nowhere under control. After my three months of no DMARDs, I will get put on yet another one to see if is the “magic cocktail” I have heard so much about, but yet is allusive to me. I asked to be weaned off my prednisone after 9 months of being on it and having to start Actenol for osteoporosis. I deal with the daily pain with pain meds and the “usage” policy. : ) I go back on a regimen of prednisone for 8 days when I have a flare that I cannot “handle/take” anymore.

I appreciate RA Warrior because my rheumatologist thought that by last August I should not have been in any pain anymore and wondered why I was. After reading on RA Warrior I know that pain is typical with RA patients. I have mentioned this site to her and her nurse. My nurse is more responsive, my doctor not so much so. : ) I appreciate all that Kelly has put into and done with this site. I have learned a lot more about RA from this site than from my rheumatologist! : )

This is Angie’s onset of Rheumatoid Arthritis story, in her own words.

My name is Angie and I am 62 years old. I thought it important to share my story because unlike most of the other stories in this RA blog, my RA was “late” onset; I have only recently been diagnosed.

Looking back, I can now see the course of the RA although it was easy to dismiss the early symptoms; the stiff neck was a result of a poor pillow (I must have gone through dozens); the hip hurt from “overdoing” in the garden; the ankles were sore from being on the treadmill too long, etc. But in October 2010, the disease hit sudden & hard. I first noticed that something was wrong on a short road trip to visit my in-laws. Not only could I not sit comfortably because my rear end and legs ached so bad, but when we stopped, I was so stiff I could not straighten up to get out of the car. Then, in just a few days, the pain moved to my groin and pelvic area and became so intense that I couldn’t turn myself over in bed. Regardless, I still convinced myself that I must have done something while I was working outside and in a few days it would get better and go away. I waited another two weeks before I made an appt. to see the doctor.

The doctor first ordered blood tests and after finding my sedimentation rate elevated then ordered full body MRI’s, X-rays, colonoscopy, and more extensive blood work. I now know that due to the sudden onset, she suspected polymyalgia rheumatica (PMR). While waiting on lab results, she prescribed Vicodin to help me sleep at night and prescription strength ibuprofen during the day to reduce inflammation and pain. Finally, she prescribed prednisone; 40 mg over a 10 day period. Having read of the side effects of steroids, I was afraid of it and thought perhaps I could just “tough it out.” However, after one particularly painful night where I was unable to pull my body up in bed so that I could take a pain pill, I realized I had no choice; it was either the prednisone or a wheelchair. Compared to the almost dramatic and immediate relief, the side effects of the prednisone were minor; within 24 hours I could walk again! So after that course and while waiting for an available opening with the Rheumatologist, the Doctor prescribed an even heavier but tapered dose; beginning with 60 mg and ending two weeks later with 5 mg.

The Rheumatologist had thoroughly reviewed my file before the first visit, but still did a complete exam. He told me that he suspected PMR but due to my family history (my older sister had lupus and RA) as well as my past medical history of reflex sympathetic dystrophy he needed to do more tests before he could be sure. One month ago he announced the diagnosis of RA. I was stunned – I had not even considered such a thing – after all I was 62 years old and my hands were fine! Truthfully, if I had to have a diagnosis that explained everything, I was hoping it would be PMR since I knew it normally disappeared in two to three years as suddenly as it begins. I was in total denial. The doctor had to be wrong! So in an effort to prove it, I ordered copies of all the tests so I could research them and prove it.  Eventually I realized I couldn’t argue with the proof.

I began 15 mg Methotrexate one month ago along with a daily dose of folic acid to counter the side effects and am slowly being weaned off prednisone. I am currently in no major pain and am not sure if the overall weakness, extreme fatigue and swelling of the feet and ankles which I am now experiencing are side effects of the drug or just more RA symptoms. But I am extremely grateful that so far the disease has not yet progressed into my hands, although I understand it will happen eventually.

Right now I do not know what the RA holds for my future. I have slowly come to accept the diagnosis and admit that I am scared. However, I am grateful for each day, for my faith and for my wonderful, loving, and supportive husband. Even though I know there is no cure for this awful disease, I know its most powerful enemy is prayer.

This is Molly’s onset of Rheumatoid Arthritis story, in her own words.

I’m not going to start at the beginning of my RA onset, because it was not really the beginning. In December of 2009 I was hit from behind by a driver under the influence of drugs. I was removed from the car and taken to the local hospital because my back had seized. I had five fused discs in my back, an operation performed in 2001. Since then I have a very little problems with it until this accident. This began a nightmare I am still living. I suffered from back pain and a trapped sciatic nerve for about 6 months and then the symptoms eased for a few months. My orthopedic guy said I had two more discs that were herniated, but it was unclear if it was a direct result from the accident.

During this time I was working as a Pet Salon Manager for a large chain, and until this time had not had a day off sick in years. In fact, as a manager I had very little patience for sick people, as my own awesome immune system meant I never even got colds. Those that took pain killers were weak, just get up and get a job, were my motto.  I cringe now at my attitude!

Just when I thought I had dodged a bullet with the car accident, I started waking up in the mornings with a cricked neck. For about 10 years I had been very stiff and sore in the mornings, and my feet would sometimes not allow me to walk on them for an hour or so. I spent a fortune on shoes and insoles to no avail. Due to the very physical nature of my job I put these symptoms down to overdoing it and old age. I was in my early 40s. But the neck was inexplicable. I couldn’t pin it on a difficult dog, or wrenching it.  One day it hurt, and then the next would be fine. Then the knees joined the party. I couldn’t work out – what injury I had had to cause this sudden knee pain? I was also running to the dentist because of jaw pain, thinking that I had abscesses or something causing my jaws to hurt all the time. Then the same story with my shoulders and elbows. My hands had hurt for about 15 years and I had been told by my GP in England that I had ‘arthritis’ in them. Holding shears and clippers and gripping dogs would often be very painful and I compensated by using fairly unorthodox ways to hold my equipment, but I got the job done.

One evening while dining with my friend, who is 70 years old, she commented that I was ‘older’ than her, as she watched me struggle to put on a sweater. She insisted I go back to the orthopedic doctor to get checked out. I realized she was right, and this was ridiculous, considering I was only 45. On the paperwork the doctor asked me to fill out it very clearly stated that he would only treat one joint at a time, and asked me to state the problem. This caused a real quandary. I chose my neck. While the nurse was taking my vitals I explained that the neck was only one of my joints that were hurting.  This was the first time I heard the words RA. A few minutes later the doctor said the same word…RA.

I asked him what he was talking about, because for some reason the term RA had never passed my consciousness. He went on to explain about Rheumatoid Arthritis. Of course, like many of the uninitiated I only heard ‘arthritis’, so I was unconcerned and happily let them draw blood, give me a prescription for pain killers, and a referral to a Rheumatologist.  Two days later his phone call floored me. I had a really high RA factor, CRP and Sed Rate. Huh? I had no idea what he was talking about but he insisted on getting me an emergency appointment with my chosen Rheumy.

During the next two weeks I did some research on the web, and fought through my days at work. My hands were very hot and swollen, making it impossible to hold my shears. From being able to groom 10-12 dogs a day I was struggling in tears to do 5 or 6. The research scared me to death, but it also brought back memories from childhood….

Is it possible to wipe out great swaths of memory? My mother had died when I was in my early 20’s, and as she had managed my health as a small child, I had no one else to turn to. My father has always lived in his own little world, and when I called him, he only remembered that I was very ill as a small child and always out of school. My sister remembers all the other kids teasing me in the play ground because I had arthritis like an old person. This started opening the doors of my memory. I remember sitting in my doctor’s office while a lightning storm raged outside, and a horse and foal were killed by ball lightening as I watched. But I had wiped out the many more times I had sat there while my mother spoke about my fevers, swollen knees, stiffness and constant flu symptoms. The office of the specialist, with the bright yellow wallpaper and pretty pictures, came back to my mind, while being told I had Rheumatoid Arthritis. I remember he said it was different to what my Nana had but did the same thing to my joints. I remember my mother crying a lot, and explaining to me that running all the time was not good for my knees when they hurt. My sister and I had a make believe game where we played ‘horses.’ We galloped around like horses and jumped over my mother’s rose bushes. Many days, my horse was lame, because my knees hurt and I would be limping. I was always sick with a fever and home from school. Luckily I was pretty smart and managed to pass every year despite my absences.

Sometime during my early teens the fevers stopped, and the joint pain became less frequent. The ‘arthritis’ thing was forgotten and I became a normal teenager. After college, when I took over my own health care I would fill out the questionnaires at the doctor’s office by ticking the rheumatic fever box. I dimly remembered ‘rheuma…’ but RA wasn’t one of the questions. I had to have antibiotics before any dental work, but as I had spent my childhood taking pills I had no idea this was wrong.

After the birth of my 3rd child my back started hurting a lot and went into spasm a number of times. I was diagnosed with degenerative joint disease in my spine and herniated discs. I was riding a lot and put it down to the wear and tear of the sport. During my mid 30’s this became unbearable and finally I had a spinal fusion of 5 discs in my lower back. The specialist mentioned that I had a lot of arthritic damage to my spine. He also said my hands had arthritis too. I was running my own grooming business at the time and it was limiting the amount of dogs I could groom, so I hired another groomer and took over the business side while grooming only specialist dogs. Other symptoms were creeping in as well, very sore feet with large nodules on them, extreme fatigue and flu like symptoms. I went back to my GP who diagnosed me with Chronic Fatigue Syndrome. The pain continued but I just got on with it the best I could.

In 2003 the pain mostly disappeared again. I attributed it to finding my soul mate and mind over matter. My feet still hurt and I had to be careful how much walking and standing I did, and my hands struggled with the demands of my job, but nothing I couldn’t handle. The flu symptoms and fatigue disappeared and I felt wonderful….then the car accident changed all that.

So a year has gone by since my 2nd Diagnosis. I struggle every day with pain and fatigue, while taking medication to control this disease. The damage from years of uncontrolled RA can’t be fixed but at least I have a chance of preventing further destruction. It has been a long road from diagnosis to acceptance but I am getting there.

<< Back to Onset Story main page.                                     Go to page 21 of Onset Stories. >>

70 Patient stories on RA Warrior

Today we add eight new stories to the RA onset story pages! Patients tell their own stories of how their Rheumatoid Arthritis developed and how they found a diagnosis. There are currently 70 Rheumatoid Arthritis patient stories on this site. There are 3 reasons I created these pages:

1. I found other patient’s stories to be extremely helpful to me. I hope others will have the same experience.
2. Together, we can create a more accurate picture of Rheumatoid Arthritis for family members, doctors, care givers, and the general public. We will show the world what RA does to a person.
3. I believe that some clues to earlier diagnosis and treatment of Rheumatoid Arthritis lie in our stories. Perhaps the evidence we gather here will inspire scientists or doctors to be able to improve diagnosis or treatment for Rheumatoid Arthritis. Maybe we can even provide clues which will help lead to a cure for RA.

Patients find the stories helpful while looking for diagnosis or confirmation of symptoms. Could there be even more value in telling patients’ stories? Perhaps hearing someone who’s walked this long road gives strength to continue the fight against a harsh disease. Maybe there is encouragement to try new treatments or continue with a treatment in spite of difficult side effects?

Patient stories improve patients’ health

A new study in the Annals of Internal Medicine finds that hearing other patients’ stories effectively improves the condition of high blood pressure patients. A small study showed that just listening to stories from patients like them brought as great a reduction in blood pressure as medication for some patients. Their conclusion: “the storytelling produced substantial and significant improvements in blood pressure.”

Of course “Additional studies are needed to clarify the mechanisms through which storytelling works, address more long-term follow-up, and test similar interventions for different populations and conditions.” Patient stories will never replace medical treatment of RA, but they may be valuable for more reasons than we realize. Tracy Manning, MA, RA patient and lecturer of psychology commented, “Lists of symptoms and explanations of disease process are one thing, but personal stories offer a rich descriptive of what it is like to discover and live with a disease.”

Recommended reading:

• Index to all patient stories on this site
• RA, Blogging, and Mary Poppins
• 20 Tips for Managing Your Rheumatoid Arthritis Treatment

Jenna’s Rheumatoid Arthritis story
Tammy’s Rheumatoid Arthritis story
Sherrie’s Rheumatoid Arthritis story
Judi’s Rheumatoid Arthritis story

This is Jenna’s onset of  JRA story, in the words of her mom, Amy.

Our journey with RA started in July of 2008. Our youngest of three, Jenna (aka, Bean), was four and a half years old. She “appeared” to be a normal, happy, healthy, even active little girl. Then one morning my husband asked me, “Why are Jenna’s knees square?” I thought he was crazy and pretty much told him so. Later that day while at the beach with the kids and my Mother, my Mother asked the same thing. “Why are Jenna’s knees square?” That’s a question that will reverberate inside my head forever now. I knew then that there must be something to this.

So, I called my little Bean over to me so I could take a look. Then I called the other two over so I could line up three sets of kids knees to compare. OH CRAP. Something for sure isn’t right, but she seemed fine, so I figured it was something I would call the pediatrician about at some point. The next morning all three kids woke up with a ridiculous amount of bug bites, Jenna being the worst case. I think we counted about 80 bites on her little body. So I called the pediatrician to get them in right away. We never did find out what all that was, but while we were there I asked her about Jenna’s knees. She confirmed that they were NOT right. She immediately sent her for an x-ray which confirmed excessive inflammation and fluid on both knees. She said she was going to get us in to see a rheumatologist, she was pretty sure Jenna has “arthritis.” HUH? Uh….okay.

Now, here is where the dates get fuzzy. I believe it was August of 2008 that we first saw the rheumatologist. By the way, I should mention here that Maine is just one of many states that does not have a pediatric rheumatologist. This doctor is an adult rheumatologist. At the time we thought that would be fine. We since have learned that these kids MUST see a PEDIATRIC rheumatologist. The treatment of children versus adults is drastically different. He ran some labs, did his own x-rays, ruled out anything else this could be and confirmed, YES, Jenna has what at that time he called Juvenile Idiopathic Arthritis. At that time her blood work was negative for the Rheumatoid factor. I recall going to school with a girl with arthritis, but, I mean you really think of it as an old person’s disease. She was only four and a half at this time! He said that I needed to get her eyes checked immediately. Really?? Why?! I had no clue that arthritis can attack the eyes! He said that especially because she is a girl and because she tested ANA+ she is highly likely to develop Uveitis.

He began treating her with Naproxen, I believe it was 2x daily. Not only did that not help, but she started getting these ugly, oozy, blistery, painful sores all over her body. No one, even the rheumatologist, could figure them out. He said that people do get rashes from Naproxen but he had never seen the likes of this. He said to stop the med and see what happens. If it’s the Naproxen, the sores will go away immediately, and they did, thank goodness. Since not only did it not work but clearly she is allergic to it we had to change the attack plan. He put her on methotrexate, can’t recall the dose, but rather than do injectable liquid or pill form, we did the liquid taken orally. We later learned that is not the proper way to administer this medicine. After some time, a month or two maybe, this still was not controlling her inflammation. By this point it was not only in her knees but also one ankle, one elbow, as well as a few fingers and toes. We scheduled her to have both knees drained and injected with steroids to jump start her treatment. Although that in itself was a nightmare, it worked. She, for the most part, did great after that. Also, he ran tests on the fluid her withdrew from her knees. She tested positive for the Rheumatoid factor. Her diagnosis was now Juvenile Rheumatoid Arthritis.

Meanwhile we had taken her to our eye doctor. Her first couple of checks showed no inflammation. Okay cool. Didn’t take long though. She went from nothing to full blown, 30-40 cells per eye, within weeks. Turns out the Uveitis would be our hardest fought battle. At this point we needed to start seeing an ophthalmologist rather than just an optician. Again, Maine has one pediatric ophthalmologist. Turns out he’s a monster and after a few horrific visits I refused to go back. We were very fortunate to be seen by Dr. F. at MERSI. We knew at this point that we needed to add another systemic medicine to battle the Uveitis before it could do any damage. Dr. F. wanted to add Remicade or Humira. The rheum doc wanted Enbrel and we knew nothing, yet were caught in the middle. We ultimately went with Enbrel because we were told that it stung less than Humira. It was a BIG mistake, we should have listened to Dr. F. Enbrel cannot effectively treat Uveitis.

We knew at this point that we had to do something for Bean. Running here there and everywhere from state to state to get her treatment was NOT working. I mean we really liked the rheumatologist that she was seeing, but after finding and communicating with other JA moms, we realized there was more that could be done. Simply put, she needed a pediatric rheumatologist, Maine doesn’t have one, so where are we going? We went in and talked to her rheumatologist about it. He said if we were interested in North Carolina, he knew a fellow at Duke Children’s Hospital and he would get in touch with him and see if they could get her in. YES, we were interested! That was likely the hardest thing we ever had to do. To uproot our family, including leaving behind one child, leaving everyone and everything we had ever known, to move to a new place where we know no one. But I tell you what, it was also the BEST thing we EVER did. It has been a very bumpy road but the care that Bean gets is 100% worth it.

It has become my mission to raise awareness of the fact that YES, kids DO get arthritis, YES, it affects way more than “just” the joints, it affects eyes and organs too, YES, arthritis can potentially be lethal. When Bean was first diagnosed I had so many people saying, “REALLY?? She has ARTHRITIS??” with this scrunched up face as if I was crazy. YES, people she has arthritis! Kids get it too!! I want to shout it from the rooftops. We also still get a lot of this, “But she looks fine.” What are people expecting to see? Hideous deformities? I also want to raise awareness of the fact that for the 300,000 kids that suffer daily form this dreaded disease there are only 200 certified pediatric rheumatologists. I want parents to know that your child deserves to be seen by nothing less than a trained and qualified pediatric rheumatologist. Mostly, ultimately, I would like a cure. I would like for no more children to suffer.

Follow Amy’s blog to hear more about Jenna Bean.

This is Tammy’s onset of Rheumatoid Arthritis story, in her own words.

I was born in 1967 and had frequent cases of strep throat. In 1974 I was diagnosed with Scarlet Fever. The pediatrician gave me a shot of penicillin. I had a severe allergic reaction. Meanwhile, my joints were inflamed and hot and I was confined to the bed for a long time. I believe that by this time I now had rheumatic fever as it runs in my family, but that is a self diagnosis and was never confirmed. I couldn’t even roll over. My mom had to do it for me. After seeing many doctors and spending about 3 months in 3 different hospitals, the doctors decided on JRA as a diagnosis. I was eventually treated with erythromycin and aspirin. No permanent joint damage that time. Then when I was in 9th grade, it began. We had gone on a trip to Florida as a family. I got a sunburn, a wicked sore throat, and what appeared to be sun poisoning, because I had a rash all over and my skin was outrageously sensitive. Once back at school, I accidentally slammed a finger in my locker.  It was swollen and sore for a few days. Then another finger that had not been injured became swollen and sore…and so on. The next symptom, my feet felt EXACTLY like I was walking on sharp stones, and the fatigue began. Horrendous fatigue. People in the school would stop me and ask if I was okay. The rest is a bit of a blur.

I spent the last two weeks of 9th grade in the hospital having every test available run to get a diagnosis. I tried to start the 10th grade, but could only go for about a month, and was home schooled that year. The first doctor put me on prednisone. Then my parents, upon doing research, decided to take me to a controversial doctor, Thomas MacPherson Brown.  He helped me get off prednisone.  I then was on tetracycline and meclomen and gold, an older treatment-I don’t even know if they use that anymore, and darvocet and I was finally able to resume life to some degree. There were side effects from meds and one particularly nasty ulcer episode from taking Voltaren, but overall somehow I managed to feel like things were okay. Under the care of Dr. Brown and with the help of my faith, family and friends, I was able to lead a fairly normal life, except extreme pain became my new normal.

After graduation from high school, I began to volunteer full time in a Bible ministry, and work part time to support myself. This gave me a sense of purpose that has helped carry me through all this.  At 20, I qualified for Social Security and Medicaid. Then in February of 1989 at 21, I started to have severe pain in my left hip. At first I just limped through it, then it began to audibly grind when I walked. Then it would lock. Finally, I went to a surgeon about it. I needed a hip replacement. Actually, I needed two. The left one hurt so badly, I just wasn’t noticing the right one was badly damaged too. So I was scheduled for two hip surgeries that year: one in May, and one in September. Then there was severe depression to deal with in between the two. In November, I moved in with friends so that I could do my ministry work in a more isolated area where extra help was needed. While there, I had two more joint surgeries. I eventually moved back home to go to school, and then got married in 1993.  Since then I have had four more hip revisions and two knee replacements. I also had a shoulder replacement because I tripped on a rug while helping a family member move, and fell into a wall. I had broken my shoulder but didn’t realize it was broken for 9 months. I just thought the arthritis was really active in that joint. Talk about a pain threshold! I wasn’t even taking narcotics at the time (I was drinking more though… I wonder why – insert sarcasm font here.)

My last hip surgery (no. 6) was in 2008. I now deal with severe fatigue and all joints are affected. I am on methotrexate, folic acid, Prozac, Lyrica, ibuprofen and Kadian, which is a sustained release morphine product. This has truly been a lifesaver and I wonder that more people who deal with severe RA do not mention that they are on it. When I finally started with it, it was the first time in 20 years I could actually sleep through the night. You can put up with a whole lot as long as you aren’t sleep deprived. I investigated the other biologics last year, but because I am on Medicare the price is too high, and the programs the drug companies offer will not accept you if you have Medicare. At this point I’m not really convinced that they are worth the extra risk for me personally, anyway.

This is Sherrie’s onset of Rheumatoid Arthritis story, in her own words.

For as long as I can remember, I had pain in my wrists. When I was in middle school, we were required during P.E. to do pull-ups, push-ups, sit-ups, etc. I had been telling my mother for years that my wrists hurt and I couldn’t do anything that required pressure on them. My mom was never one to take us to the doctor very often, so I just found ways around doing those exercises. A few years later I was still complaining, so my mom finally made an appointment and I was told I had tendonitis. This was before Advil or any of that, so I was told to take aspirin when they hurt. When I was 27 I had my second daughter and was still dealing with pain in my wrists, but now I had pain in my hands. I remember my older daughter grabbing my hand one day and pulled my middle finger up and I thought I was going to go through the roof – the pain was so bad. I went to my GP and was told it was probably the tendonitis again and she wanted to prescribe something for the pain, but I was still nursing, so all I could use was Ben Gay and ice to help, which did very little.

When I turned 40, I decided to change careers and was in cosmetology school to get my manicuring license. During school I was trying to perform massages during a manicure or pedicure and my shoulders were so achy and painful it was difficult to move them. I put up with that for a few weeks until one night when I was at home and I could literally feel the pain travel from my shoulder down my arm into my wrist and hand. It was more than I could bear, so I made an appointment with my doctor the next morning. I explained the symptoms I had been having, but he had no idea what it was. A few weeks later I woke up with one of my fingers red, hot and swollen. I immediately called the doctor so he could see what was happening. Up to that point, there had been no outward symptoms of anything for him to see and he had only been able to listen to how I had been feeling. Finally, I had something to show him.

He said it was a sausage finger and took an x-ray and said this is most likely osteoarthritis. It’s definitely not Rheumatoid Arthritis, but I want you to see a rheumatologist. It took 4 months to get an appointment with the rheumatologist and by the time I got in to see her, I had severe pain in every single joint in my body. Little did I know what I was in for. She ran blood tests and confirmed that I did indeed have Rheumatoid Arthritis, but said due to my insurance, we had to start with Advil and see how things went. Of course the Advil did very little for the pain and 3 weeks later, I was involved in a fatal car accident and hit by a man who fell asleep behind the wheel. Although my car was totaled, the only injuries I had were neck and back pain, however, the stress from the accident caused a major flare up and I ended up bedridden for 3 months. I could no longer dress myself, brush my teeth, drive my car or take a bath or shower by myself. I had to rely on my daughters and husband to help me with those things and help me from my bed to the couch. I remember at one appointment asking my doctor if I’d ever be able to work again and she said she didn’t know.

At night I was only able to sleep for 20 to 30 minutes at a time and would wake up my family at night because the pain was so bad I was crying in my sleep. I never could have imagined that trying to bend your knees, or turn yourself over at night would cause the intense pain that it did. The pain was excruciating and I had a new understanding about why people who had chronic pain killed themselves. I had several pity parties and was so depressed and couldn’t believe this was the life I was going to have. Finally in September I convinced my doctor to try some different medications. She started me on methotrexate, Diclofenac and Plaquenil.  Wow – what a difference!!! I found a job and started working one month later.  I was fairly pain free for a few years. I continued to have flare ups and had trouble using my hands, but rarely missed a day at work.

I was doing so well in fact, that I quit my job and opened a salon. With the help of family and friends we did all the work ourselves and it was a thriving business. During this time, my husband lost his job and we had to change insurance companies. I moved from doctor to doctor, trying to find one I trusted, who could manage my pain. I still continued on the same drugs but Arava was added and within a few months, I had lost more than 1/2 of my hair, which was a side effect that I wasn’t told about. So I discontinued using that.  In the meantime, I developed nodules on my vocal chords so needless to say, my voice changed and became raspy and on occasion I have no voice at all. It seemed I couldn’t find a rheumatologist who could keep my pain under control and went on for a few years before we were finally able to change insurance companies again and I found a great doctor.

I had been having an underlying cough for about four years and come to find out, it was caused by the methotrexate, which should have never been prescribed because I have asthma. So my doctor took me off that, kept me on the Diclofenac and Plaquenil, but also added prednisone, Sulfasalazine and started me on Enbrel. The Enbrel worked great for a few months, but then I started having numbness and tingling in my hands and feet, which my doctor said was a neurologic disorder so I could no longer take that or any other drugs in the same family. This was news I didn’t want to hear and was told I was at the end of the list of medications and the only thing left was Orencia infusions with the hope that would work for me. In order to keep me working and fairly pain free, he increased the prednisone to 20mg a day. I have now been on prednisone for five years, which of course is a double edged sword. It does help me with the pain and inflammation, but I have gained quite a bit of weight and from what I have read, it’s not good to be on it long term. The Orencia has worked fairly well, but even with that, I have developed nodules on my fingers and elbows.  Last January I started having severe back pain and it got to the point where I could barely walk. So after x-rays and an MRI, they found a synovial cyst on my spine as well as a herniated disc, degenerative disc disease, and spinal stenosis. I had surgery on my back in June to remove the cyst as well as a laminectomy, which was completely successful thank God!

Living with RA is a definite challenge, but I have found that a positive attitude and trying to stay as stress free as possible helps immensely. I still have pain every day and live with the problems with my voice and dry eyes that sometimes feel like they have sand in them, but compared to how I felt during those months when I was bedridden, I am doing quite well. I can only hope that they continue to develop drugs to deal with the pain and progression of this disease. On a side note, my youngest daughter was diagnosed with fibromyalgia at 15.  She has been living with that for 6 years now and I hate knowing that I have passed a disorder along to her.  However, we both know what it’s like to live with chronic pain and lean on each other for support, which is very comforting.

This is Judi’s onset of Rheumatoid Arthritis story, in her own words.

When I was seven years old I remember getting very high fevers. I was in and out of the hospital constantly. The doctors didn’t know what was causing the fevers. I also was having great pain in my legs. My mother changed my school so I didn’t have to walk so far. The earliest I can remember being in the hospital is when I had a high fever. The nurses would put me in a bathtub of water and ice! Then they gave me ice cold chocolate milk to drink. They would put me in the bed and surround me with ice packs. I remember moving them constantly. The nurse came back and forth to push them back on me. I would move them again. I also remember having a spinal tap. That was scary! I went back and forth this way for years. Then the doctors told my mother that it was Juvenile Rheumatoid Arthritis (JRA).

They diagnosed me through the process of elimination. The treatment back then in sixties was four aspirin a day. That was all there was to help me then. I don’t remember when I quit hurting, but I did. I went into remission. I was very active in school: gym, Pom-poms, etc. Still looking back it was always with me that I could feel my legs more than others did. I still walked all around the city or rode my bike. You couldn’t keep me down! I went on to high school and afterward moved to Texas. I had odd jobs, but finally I enrolled in The Painters and Paperhangers apprenticeship program. I worked like a man did if not harder. I was the second woman in the Painters Union! Yes I had pain but contributed it to the hard work. Then in 1989, I went to work for a printing company and worked in the shipping department. It was more hard work. Then I started getting painful elbows hands knees. The company sent me to a workmen’s compensation doctor who did surgeries on my elbows and hands.

I had two surgeries on one knee. In 2003 I was sent to the bindery department to work on machines that sent out coupons that were folded brochures. Stuff like that. I was terrible at it! My hands just wouldn’t work! I would cry and cry because I was good at everything. Then the company went out of business. I went to a doctor in Texas and he said I didn’t have Rheumatoid Arthritis. After I moved back home, I went to another doctor and he said I didn’t have Rheumatoid Arthritis. Finally went to a rheumatologist, and of course I did have it! I thought I was crazy or a hypochondriac. I was diagnosed with RA and fibromyalgia. That made all the sense in the world to me then. My legs hurt at the knees and fibro hurt on the muscle. My mother would rub my legs when I was little. Now eight years later and I’m full blown with RA in every joint! I’m disabled and stay at home now. I’m glad I’m not crazy! Thanks to Kelly Young and RA Warrior, I’m a better informed patient. I have a community to talk to and share my pain!

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John’s Rheumatoid Arthritis story
Theresa’s Rheumatoid Arthritis story
Dorothy’s Rheumatoid Arthritis story
Emily’s Rheumatoid Arthritis story

This is John’s onset of Rheumatoid Arthritis story, in his own words.

I was a pretty active person, serving as a police officer for 15 years then moving in the Safety and Environmental field after getting my degrees from UH.  As a cop I used to do lots of extra jobs and the standing would really get to me – my knees, hands, neck shoulders – everything ached.  About a year after I left the force (1995) I was playing basketball with some neighbors and tore my Achilles tendon, the first break and tear in a downward spiral.  A year after that, I was really stressed when my wife left us but I kept battling the fatigue and pain.

A friend suggested bike riding.  I took that up with a vengeance, dropping some weight and feeling better about life, until I badly strained another tendon in my foot.  That took me off the bike for a while and in to see my orthopedic surgeon.  During my recovery, he asked me if everything else was OK.  I told him about this pain that had been bothering me, off and on for years.  It had gotten progressively worse.  He asked for a description – I told him it sounded weird, but my joints would ache terribly from my neck, then slowly into my shoulders and slowly over a week or two feel like it was inching its way out of my body finally radiating thru my hands until it would stop a few weeks later.  I asked him if he could prescribe something for the pain.

Dr B. looked at me and said no, but he would refer me to another doctor, especially after asking me a few questions about family history and finding that my mother had some mild Rheumatoid Arthritis and my aunt had Lupus.  I made the appointment with the rheumatologist who actually saw in a few weeks, even being a new patient.  After a series of blood tests, he called me in and gave me the announcement – he was damn sure I had RA.  I started with some steroid shots as I was in the middle of a flare up when I saw him, then on the methotrexate.  That had little results, so soon I was placed on Humira.

I responded well to Humira, so well in fact that I was back on the bike and did a couple of MS 150′s with just minor pain from time to time.  My insurance at the time wasn’t great, but it beat paying $1400 for 2 shots per month.  All good things end however – soon my company was sold and I was out of a job and out of insurance.  I had 2 shots left, so I spaced them out as far as I could.  In February of 2005 I was out of shots.  I gradually spiraled into a series of flare ups that would last for weeks on end.  By August, I was in pain most of the time, needing help from my boys to even get my shoes tied and get dressed.  For a 45 year old man, previously strong and active, this was like the death sentence.  The new job had terrible insurance, but it did have some after 6 months, so in August I called a new RA doc (the old one was not on our plan) the soonest I could get in was October.  Until that time I would go to the doctor that I used for our company’s worker compensation injuries.  He would shoot me up with steroids and hold off the pain to a minimum, but the swelling got worse and worse.

By the time I got in to see Dr. W., I was in very bad shape.  During a flare up I described my walk like that of a 90 year old man ready to die.  He gave me some shots of Humira that he had on stock.  Wow, the first one helped in days.  I thought I had found my stride, but this time the second round had no effect and the subsequent rounds were useless.  W. told me “That happens.”  Luckily I got a new job with better benefits in January.  We began on a high dose regimen of prednisone, methotrexate and started Remicade infusions.  Dr. W. explained that although the Humira worked pretty quickly, we might not see such response from Remicade, especially since I was in such an immune-wracked status.
Every joint was almost constantly inflamed.  My weight jumped 50 pounds in a few months from the heavy doses of steroids.  I traveled for business – how I hurt on planes.  After about a year I was able to slowly wean myself off the steroids.  New problems erupted when my knees proved to eaten away by the RA.  My savoir Dr. B. asked if I wanted to be aggressive with treatment. What could I say but yes? Two total knee replacements later, one in February of 2007 and the 2nd in April got me back walking a bit better even if it slowed down my run through airports.

Since those operations I have had a few more. My thyroid was found to be enlarged.  It was found when I went to the ER for acute cellulitis.  They gave me Levaquin IV to see if it responded.  I have never been allergic to anything, but I am to Levaquin.  Out I went.  A good round of epinephrine, atropine and a crash cart brought me back.  The thyroid was discovered while I was recovering.  That has been removed.
I began to feel better and finally got back on my bike in September of 2009, but my hands began to go numb, then my arms, mostly on the left side.  Another doctor found a problem in my neck requiring fusion surgery and sucking out a bit of herniated disk.  I am finally back on the bike hoping for a few more years out of my knees and a bit more luck.  God still blesses me every day to keep me alive, give me a grandson and hopefully end my years teaching him the fine art of life.

This is Theresa’s onset of Rheumatoid Arthritis story, in her own words.

My name is Theresa. During the fall of 2009, I began having strange pain in my shoulder.  The arm would be sore and I would have to hold it up to write on the board.  See, I am a high school teacher.  The shoulder would be very painful for a day or two and then it was gone.  As the new year settled in, my feet started to hurt and I had pain and discomfort everywhere, but I ignored it for as long as I could.

However, as my student trip to NYC approached, I knew something had to give so I went to the doc’s in late February 2010. They did some blood tests and gave me a dose of prednisone to take. I considered prednisone my miracle because everything stopped hurting the day after I took the first dose.  Then, the phone call came that my Rheumatoid factor was slightly elevated, and they were referring me to a Rheumatologist. It’s never been higher than 77. My first appointment lasted about 45 minutes and consisted of a physical exam and more blood work. He was fairly confident it was Rheumatoid Arthritis, but I was not since the prednisone was making me feel better.

I am now off prednisone but taking sulfasalazine twice a day.  I feel better but not great.  It seems my story is a better one than many I have read here and in other places. I’m exhausted and find that I am taking naps more frequently, but I will take the fatigue if it means the pain stays away. Initially, the sulfasalazine made me sick, and I had to split my morning dose to prevent horrendous nausea at lunch time.  It took several weeks, but eventually, I was able to get off the prednisone and just take the sulfasalazine now.  We talked about a biologic this past summer but so far I have been able to avoid it and my labs are pretty good right now – sed rate is within normal limits and others are either normal or just above the upper limit.  I am thankful for this right now. I am a bit sore when I get up in the morning but it tends to go away before I get out of the shower. So far, there have been no x-rays or MRIs, since my range of motion has been good.  On my last visit, I was told I was very flexible and I still have full range of motion in all joints, but a good deal of discomfort in my left hand this week.  I have not had visible swelling yet which seems unusual.  I did get a nodule on the back of my right heel which is what prompted the initial talk of a biologic, but it has now disappeared.

This diagnosis hit me like a lead balloon as there is no family history of RA and I had been totally healthy and active up until this!!  I’ve accepted my diagnosis at this point and am reading all I can and working to stay flexible.  A few people know of the diagnosis and I have gotten pretty good at putting on a happy face.  I have yet to miss work because of pain or fatigue and I hope that will continue. I have two teenagers at home and they are starting to see that mom can’t do it all and will jump in to help at times. My path seems unusual so far.

This is Dorothy’s onset of Rheumatoid Arthritis story, in her own words.

Here is my story. My name is Dorothy. I was diagnosed 14 years ago this month. While I was pregnant with my last child, I noticed feet and hand swelling. I was pregnant, so it was normal. She was born in May. Two weeks after her birth was when I started with headaches. Non-stop headaches that felt like if I bent over to tie my shoes my head was going to explode! These lasted every day, all day and night. No pain medication would help. I finally went to the doctor about a month into the headaches. He referred me to a neurologist. I was diagnosed with Cluster headaches, put on beta blockers and anti-depressants. The medication left me in such a cloud. I told him I didn’t want the anti-depressants anymore and he told me, and I quote, “You need them and you need to go to bed when you’re tired and wake up when you are not.” Mind you, my daughter was about 3 months old, my son was 7 and I worked full-time. By this time I was giving up on help. It took me an hour to get moving in the morning. My head still hurt and my hands were so very swollen.

My father suggested a rheumatologist. My dad had Rheumatoid Arthritis later in life and thought it would be a good place to start. I went to see one and all I remember is sitting in his office while he spoke to me about the pain and symptoms I had and bursting into tears! I wasn’t crazy! He did some lab work, x-rays, and started me on prednisone and methotrexate. Once the lab work came back positive, I was started on Humira too. I was starting to feel normal again. The headaches finally went away and I could walk again. Then, came the liver problems and cough. I had to stop the methotrexate.

Since then, I have been on so many different “cocktails” of drugs. Flare-ups come and go and I have weakness in my upper leg muscle. Pain is something that I have come to live with and the swelling is now “normal” for me. My “fat hands” used to bother me so much. One day I was at the mall and decided I was going to buy myself something to take my mind off it. I bought myself a diamond ring. I call it my “fat finger ring” and look at it instead of my “fat fingers.” I also started making goals for myself. My first goal was set when my daughter started Kindergarten. I swore I would be her softball coach once she reached 4th grade. I coached her softball for four years. My next goal was to play softball again myself. I did that two years ago. I fell on my face once when my leg muscle gave out, but dusted myself off and made it through the season. Last year was bowling. I am currently on a league and bowl every other Friday. I do have some friends who will back me up if I have a flare-up, but so far I haven’t used them.

One of the oddest moments for me was about 3 years ago. I have a lot of friends that I cherish in my life. Five of us were at lunch together, something we do monthly, and one girl noticed I was looking tired. I told her I had a “treatment” this week and wasn’t feeling 100% yet. She asked me what I get for treatments and I told her Rituxan, a form of chemo. All the other girls at the table stopped talking amongst themselves, jaws dropped and looked at me like I was “crazy.” They never knew what I got for treatments. It’s funny now when I look back at that day, but at that moment I think that is when I realized I had a disease. I was sick. All the trips to the doctor, all the pokes and probes and all the nausea and fatigue…I never thought of myself as sick. It took five looks from my closest friends to trigger something inside me.

Fourteen years later, a divorce, going back to school, graduating, a new job, losing my father to cancer and all the other stresses of normal life have taught me so much. Living with RA sucks, but it isn’t going to get me down. If I have to get up an hour or two earlier then most to sit in my chair and wait for my pain meds to kick in….so be it. I am not going to sit here and be scared or let RA ruin the one life I have. I am probably the most stubborn person you will come across, just like my Dad. He was told he wouldn’t walk past the age of 50 and proved them wrong. I am going to fight it with aggressive drugs, fight through the pain and live every “good day” to the fullest. I am not crazy…I have RA.

This is Emily’s (2) onset of Rheumatoid Arthritis story, in her own words.

It all began last October. I was a 22 year old LPN doing private duty nursing. I was at home sitting “Indian style” on the floor in my bedroom. When I got up off the floor, my left knee popped and I almost immediately felt like my knee was out of place and terrible, TERRIBLE pain. The company I was doing private duty nursing for only offers part-time positions, so they do not offer health insurance. So there I was with a hurt knee and no health insurance. It hurt so badly I went to my PCP. They took x-rays. No break, and told me I sprained it.

The pain was so terrible that I called around to see if I could get medical attention with no insurance from someone, anyone. Finally an orthopedic doctor agreed to see me. I went to this doctor and he told me that from looking at me, I had torn my meniscus in my left knee. He gave me a heavy duty sports brace and set me up for an MRI ($1,000 with no insurance). I had the MRI and the orthopedic doctor told me he did not see anything wrong and just told me to wear my brace. I wore the brace for a few months and around Christmas time something strange started happening. My right knee had started doing the exact same thing. I applied for an office job so that I could get health insurance, plus I could not perform my nursing duties due to my knees.

I started a new job in January of this year but my health insurance did not kick in until May 1st. By the time I was able to go to a rheumatologist both of my knees were so swollen and hurt so bad I could not put pants on and just lay on the couch as much as possible. My elbows had started aching as well, first my left, then my right. Then my neck started bothering me. I went to a rheumatologist and from symptoms and family history told me I have Rheumatoid Arthritis. He started me on methotrexate and prednisone. I tried the methotrexate for 12 weeks and it made me feel so sick. I kept telling the doctor I couldn’t handle the medicine and he kept telling me “just take a few more prednisone” when I told him I could not sleep at night from all the pain. I decided to dump that doctor because of all this.

I am now going to a pain clinic where I am prescribed Celebrex and Flexeril and I can call if I have a flare up and they will call me in a steroid pack. The Celebrex works so well compared to the methotrexate. I feel like I am starting to be in control more than I have been. It has been very hard to sit at a desk all day when I want to be out doing nursing. It is hard to try to make other people understand what I am going through. It has been a very rough year. Since October of 2009 to right now, both of my knees and elbows, my neck, and my wrists and fingers are all involved. From one knee to several joints in just one year scares me and makes me sad.

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