Dan’s story
Judy’s story
Kathryn’s story

This is Dan’s Rheumatoid Arthritis Onset Story, in his own words.

RA: The Hardest Mountain to Climb

I live an active lifestyle, both personally and professionally. I am an outdoor journalist, writing about hiking, climbing, skiing, snowshoeing, paragliding, kayaking and cycling for a variety of regional, national and international publications.  I’ve been playing at this profession (passion?) since the age of 23. Prior to that, my outdoor adventures were purely for recreational purposes.

So, for the last 20 years, I’ve been paid to play outside, pushing myself through some pretty intense physical activities. So perhaps I can be excused when, several years ago, I merely shrugged off pain that struck periodically in various joints of my body. I suspected these were merely the results of years of hard use and self-medicated with increasingly high doses of what mountaineers call Vitamin I (Ibuprofen). The pain migrated with no reason nor logic, though, from joint to joint. One day, I’d find sharp, focused pain my wrists, the next in my knees.

Finally, about 5 years ago, I awoke one night in early summer with severe pain in my right shoulder and I could no longer pretend it was a normal reaction to my work and play. The pain was so severe, I could not sit, nor lie down. I sincerely believed I had somehow dislocated my shoulder during the previous days’ paragliding adventure, despite the fact that my launch, flight and landing were all smooth and problem free. I literally spent the night standing and leaning against the wall, dozing off and on for nearly 6 hours before I could finally get into a doctor’s clinic.

My general-practitioner physician diagnosed me with severe tendinitis, prescribed strong pain relievers (Oxycondone) and cessation from use of my arm for at least two weeks.  I opted to shelve the heavy-duty pharmaceutical, instead sticking to hearty doses of ibuprofen, but I did rest the limb and joint for a couple weeks. The pain subsided, and I eased back into my life of outdoor adventures.

A couple months later, heading into autumn now, the other shoulder (left side) seized up in pain. Yet more declarations of “tendinitis” from my doctors – I actually went to a second clinic to get another opinion, but it turned out to be the same diagnosis. I was admonished to “take it easy” for a while, so I gave up paragliding, cycling and even hiking for nearly 6 weeks. 

Nearly a half a year after that first diagnosis of tendinitis, I ease back into hiking, though I carried less weight in my pack than normal. I hadn’t done any climbing or hard cycling in all that time. My shoulders proved fine and I eased back into some late season paragliding and then as winter arrived, moved back into skiing.

Around the holidays, while visiting friends a couple hundred miles from home, I awoke one morning feeling as if I had a broken wrist. Since I had been riding a snowmobile and skiing some aggressive terrain the day before, I thought I had simply jarred it and it had stiffened up overnight. Advil brought no relief, however, nor did icing it. I resisted doing anything that would put pressure on my wrist for the next several days and the pain eventually disappeared. I visited my doctor when I returned home to let him know of this latest event, and he final began to give these event more serious consideration.

He suggested some tests. I was busy, though, and neglected to follow up. Until a couple or two later, when once again I awoke in the middle of the night feeling as if my right shoulder had been dislocated in my sleep. Knowing I hadn’t been playing rugby in my sleep, and that my wife wasn’t the type to beat on me as slept, I called the clinic the next morning as soon as they opened. My doctor told me to get in ASAP so they could run a full battery of blood tests. Less than 24 hours later, he had admitted his long-running mistakes and promptly referred me to a top-notch rheumatologist in the area – seems my blood showed a rheumatoid factor that was well into the ‘severe RA’ category.

So, just about four years ago, I received my RA diagnosis. Since then, I’ve learned that my paternal grandmother – who died at the age of 46, well before I was born – had severe RA herself. In fact, I’m now told it was complications from her treatment, which at the time (1950s and early 60s) was largely limited to steroids, that was suspected to have led to her early death.  I’ve since tracked down other family members on my dad’s side of the family who have RA or other auto-immune disorders.

RA has affected my life, but I make every effort to limit its impact. Throughout my life, I’ve been an active outdoor recreationist, and I still continue to enjoy outdoor adventures. But I do so now with more pain – and that’s saying something! Indeed, I like to think I have a fairly high pain threshold.  Prior to my full-onset RA, I experienced a few significant non-RA pain episodes so I think I can honestly compare levels of pain. I grew up in farm country, and have worked hard and played hard for as long as I can remember.

In my early teens, I severed a finger when my hand got caught in a chain-drive on a lawn mower (very painful!). I crashed my bicycle when I was 25, tumbled head over heels down an embankment, put my leg through the front wheel, and drove a broken spoke through my calf muscle and into my tibia. When no help arrived (this occurred on the shoulder of a busy highway, but no cars stopped to assist me) I had to pull that broken spoke out of my leg myself so I could extract myself from the mangled bike frame. I then hobbled nearly a mile down the road to a convenience store where I could call for a ride –EXTREMELY painful event!

Just two years before my RA diagnosis, I literally pulverized my right heel when I crashed my paraglider into a cliff — my heel bone was smashed into a pile of bone fragments. That same accident resulted in a broken wrist, severely lacerated thigh, two cracked ribs and a cracked tailbone – VERY severe pain!!!

Today, a bad RA episode easily eclipses the pain in all those events. Yet, as someone once said, “there is no lemon-law for your body, so you have to deal with what you got.” I’d rather not experience the misfortunes of RA, but since that’s the hand I’ve been dealt, I’ll deal with it as best I can while getting out and enjoying life to the fullest extent possible.

Follow Dan’s adventures on his blog, Adventure’s Northwest.

This is Judy’s Rheumatoid Arthritis Onset Story, in her own words.

The onset of RA hit me hard like a ton of bricks!

My name is Judy and I am 46 years old and I was diagnosed with RA in 1996 after the birth of my last child. RA hit me hard about four weeks after childbirth. Now most mothers go through some type of post-partum issues whether physical or emotional so when my symptoms onset, I just figured it was childbirth recovery issues. After all, it had only been four weeks since I gave birth and I was in labor for about two days, so my body had been through a lot. However, as my symptoms got worse, I knew something else was going on. I experienced really bad joint pain and stiffness and it hit me hard – very hard. One day I was fine, the next morning I was NOT fine. Looking back, I can say I woke up to a full blown flare and it happened overnight! I could not move my neck (try nursing a baby and not being able to move your neck! Lol) – My feet hurt so bad instead of walking I shuffled. I had Pain Du Jour – no kidding! My hubby and I even joked about the Pain of the Day – Everyday it was some new pain and stiffness occurring throughout my bod – my feet, my neck, my knees…what was going on with me?  Grrr!

Anyways, here is a summary of the onset of my symptoms:

1. Feet first – My heels hurt so bad that I could barely walk. I thought it was just some cr@ppy sandals I wore and the extra weight I was carrying around (remember I just had a baby!)
2. Neck stiffness – I could not turn my neck to either side – I even bought a neck brace.
3. Knees and wrists –  I took hot baths in the morning to ease the stiffness and pain the hubby had to help me out of the tub – wrists and knees were so bad I could not get up!
4. Travelling joint pain and stiffness – it just travelled thru my bod and landed in different places.

Now I could not take any pain meds as I was nursing. My only remedies were hot baths, icy hot (cream) and hot packs.

Summary of RA diagnosis:

1. Dr #1 (not a rheumy) – Well, I finally went to a Dr and he told me he did not want to label me with RA. Yeah, whatever. He gave me Motrin and told me to come back. Now my sister had RA so I decided I better go to a rheumy and make sure that I do not have RA (fingers crossed).
2. Dr #2 – a Rheumy in Fullerton, CA – He was a very good Dr (personality? Well, kind of cardboard-like but he knew his stuff). He pressed his thumbs into my heels and I went through the roof.  More physical tests, a few blood tests later, a positive RA factor and elevated sed rate and I was diagnosed with RA. Started me on Plaquinil and Methotrexate which I did not take until three months later due to nursing.

My onset story is really short and (not) sweet. RA hit me hard like a ton of bricks one month after I had a baby. I lived with the pain and stiffness for a grueling four months so I could nurse my baby. The day I popped that first plaquinil and methotrexate was the day I had to stop nursing and that was an emotional day!

It is 13 years later (date of this writing 2/2010) and RA still bites.  Although I was on meds for the past 13 years, it did not stop the progression of the disease much. I have crippled hands, wrists that are good for nothing but pain, fatigue; well all of you reading this experience the same issues so I will not go on.  But what’s a girl to do? We press on and try to live our lives to the fullest. I hike and backpack even though it *kills* me! I will crawl before I let this RA get to me.

List of meds throughout my RA “career”:

• Plaquinil – retired from my drug cabinet since 2005
• Methotrexate – on and off this junk throughout my RA journey
• Arava – did not do much
• Auranofin – sucked – gave me HUGE mouth sores
• Remicade – only one infusion – had to battle insurance company
• Prednisone – on and off, lately more on than off!
• Enbrel – Taking Enbrel for the most part of 7 years
• Simponi – Tried it for 3 months in 2009, it worked for only 2.5 weeks per month
• Enbrel – back on Enbrel
• Darvocet – as needed
• Motrin- as needed
• Alternative meds – hardly ever, but if the pain is bad enough, it’s safer than Vicodin (which I hate Vicodin by the way, I feel like a choir is in my head)

Currently I am making MAJOR diet modifications to see if that might help ease RA symptoms. I have cut out all processed foods, gluten, meat, dairy, etc. I am basically living a Raw Vegan life right now. Has my RA improved from this drastic diet change? NO. In fact it got much worse for a few months. My hope was to get off of all RA meds with a plant-based diet solution. One can hope, right?

Interesting Fact: My sister and brother also have RA, so 3 out of 4 siblings have RA. How is that for genetics? What are the odds genetically for 75% of your children to have RA? Sometimes I wonder if it is external factors. Did my parents use the wrong soap? Lol!

Best wishes and relief from RA symptoms to all.

Follow Judy’s adventures on her blog, RAW Sierra.

This is Kathryn’s Rheumatoid Arthritis Onset Story, in her own words.

Up until about a year before I was diagnosed, I was a very active person.  I rode bicycle, hiked, camped, loved the out of doors, was an organic vegetarian, full of life, happy, energetic, engaged.  

As my husband, who is an RN, decided he wanted to work nights, and our Golden Retriever was 16 years old and would rather lick-hello a new friend that defend his area, we decided to adopt a Doberman Pinscher Puppy from a reputable breeder and Obedience train with her, which is exactly what we did.

I adore her.  She was a full-time job, as any puppy is, but I felt a responsibility to raise a gentle, well-mannered and real good example of this amazing breed.  So, my schedule was two exercise sessions a day, plus her training sessions and sessions of Frisbee to keep her exercised, both physically and mentally.

This went on for approximately a year and she was quite well trained.  

I, on the other hand, had gained weight and had lost lots of the good feelings of being fit.  As I was often elbow deep into meat, as she’s a canine, I had began to eat meat, not exercise as much myself. I hadn’t ridden my street bike in a year.  Just didn’t have time.

So, I thought all these symptoms were due to my not exercising and eating meat.  Also, I had noticed that I had bumps (nodules) on my elbows, knees and some of my joints.  I had mild joint pain and just in general joint pain throughout.  I had also turned 61.  

I told my husband “I have aged so much this last year”.  And what really scared me was that after a week back on my bicycle I saw no improvement, I actually felt worse, more exhausted, more stiff, more pain…something I had never felt before.  I just felt very, very old.

Just as an afterthought, at my yearly physical I asked my doctor to give me an RA test, knowing, both of us, that it would come back negative.

Well, it didn’t.  It came back positive.  A high positive. After seeing my new Rheumatologist, the defining test, I think the CCP came back high, indicating that I not only had RA, I had the aggressive form.

I was placed on Plaquenil and I guess it’s working.  I began to feel much better, but then recently have been experiencing that old fatigue and soreness/stiffness again, coupled with the fact that I’ve noticed more nodules on my fingers and more pain at my thumb joint.

So, that’s my story.

Again, thank you for this site, your attitude and creative intelligence.  It’s refreshing.  It’s a good fit for me.

<< Back to Onset Story main page.   

Kay’s story
Leigh Ann’s story
Vicky’s story

Kay’s RA Onset story, in her own words

I felt the same way about re-telling my story.  It seemed exhausting, and I have told it too many times.   But I also know how many stories I had read in my search for answers,  and how they really helped me.  More than any doctor ever, did.

My symptoms started years earlier too.  I didn’t recognize them until I was diagnosed, and it all made sense. 

I was running marathons.  I always felt that running was more painful for me.  All my friends trotted along like gazelles, and I felt like a warthog.  I hurt, and it took longer for me to recover. Starting out on a run, it took me half an hour to feel human and pretend I was enjoying the exercise.  I was stiff and sore and needed a lot of stretching, and slow starts.

During one marathon, my hip started hurting badly.  So much so, that I had to stop running, which was unheard of for me.  Plod along, never quit, grimace through the pain.  But I stopped halfway.

Then came the trips to doctors, hobbling along, first with my right hip, then weeks later my left one.  Never at the same intensity of pain, and sometimes not together.  The pain was like someone sticking a dagger into my bones and twisting.  Hot white unrelenting pain, and it felt different.  I’d had twisted things and broken things, and it was none of the usual suspects.

So, having no answers, and no relief other than aspirin products, I stopped the running.  I started hiking.  I loved it too, it was almost as good as running.  But I noticed that after about an hour ..or 10kilometers…my toes would sting like 40 bees attacking them.  I couldnt walk on them, had to hobble on my heels.   I still think about how many hikes I planned and forced myself on saying “no, youre not stopping me “feet”, I really love doing this and I need to be active”   The toes never cared about my feelings.

Again with the doctors, what is that?  Why do my toes feel like they are burning tingling swelling up and become useless?  No answers.  And some doctors even hiked with me, they were my friends.   They were baffled.  Never heard of it.   I was in my late 20’s.

Years passed.  

Then the trauma piled up.  Married 28 years and divorcing, selling the family home, my youngest sister died of cancer, my father had leukemia, and other assorted stress.

I started having terrible sweats in the night.  Woke up and the whole bed was soaked.  I was stiff too, like I’d used a bunch of muscles I never use and was paying the price.  Only I had done no exercise the previous day.  I was 48.

And the fatigue!  I went from having the most terrific garden, flowers, doing art work and volunteering for the community….to a messy house, garden overgrown, meals at take out please!   I kept saying I had the flu, but after a few weeks, noone believed me anymore.

The “AHA” moment came when I got up to go to work one day, and my entire body was stiff like the Tin Man.  I’ve heard the tin man expression before, and you’ll know it when you feel it!    Even my jaw was wired shut.  I couldnt open my mouth enuf to shove toast in it.  

I was truly frightened. Because no matter what, from that moment, I knew I had something seriously wrong with me.  No doctor was ever again going to dismiss my concerns.  Or if they did, I knew it was their bad skills, and not my imagination. 

So, after having to convince my family doctor that I needed to see a rheumatologist, I had a nice long wait of three months. She told me she thought it was Gout. 

I figured out that you needed to say key words before anyone would pay attention.  They are things like “swelling on both sides”  “flu-like fever” feeling,  “extreme fatigue”, “unable to perform normal duties” and list them.  A big one was “stiffness for more than one hour” 

I never had any indication that I had RA as far as the tests would show.  They were all normal.  I remember the rage everytime I heard those words.  “negative”.  I wanted to boot my own body down the curb.  It was like it was hiding the disease from everyone but me. 

The three months of waiting was torture.  I had to have help to get out of bed, dress, and my blood pressure shot up to unreasonable no.s.  My family doc gave me six weeks off work when she took my BP at the office.    My body rebels with high blood pressure when I’m in pain.  I can always tell when I’m going to flare by the high readings.  (Ive had one doctor tell me this is possible and explained why, and another tell me that I’m nuts)

The rheumy appt in Canada was such a disaster.  Awful awful man.  He didnt look at me, told me I needed prednisone and mumbled something like polymyalgia rheumatica and left.  I didnt know he left, he just walked out.   The nurse had to come in and tell me to leave. 

I’ve since read his reviews on rateyourmd.com and he has a dismal record. 

I spent a year on prednisone with him.  No tests, no MRI, no xrays.  I got worse and worse.  My family was pressuring me to get him to do something. My family doctor was mad that I was on prednisone because it was making my blood pressure worse.

I told him I wanted a bone scan.  He said I was being ridiculous, that I did not have RA, and no matter how much I insisted, it was not my diagnosis.   Well, I finally got the bone scan.  I had gone on the internet to find out what happens, what good results looked like and what bad results looked like on the scan. 

I knew if there were bright white spots in the joints, symmetrical, that it was RA.  I watched as every joint lit up like a christmas tree. 

I could tell the technician saw what it was too.  She treated me tenderly afterwards.  

I told her, “I studied results and that is rheumatoid” She never corrected me.

That horrible rheumy never called me back.  He would have had to admit it was RA, and wouldnt.  I went and picked up my results and went straight across the border to U.S. rheumatologist.

I found a wonderful rheumy who held my hand and said: I quote: “I’m sorry you’ve had to suffer all this time, its obvious you have RA and we will put you on the drugs that will make you feel better immediately.  She never charged me for the first visit.  What doctor does that?  

I should say that I never had obvious “hot red swelling” ..it just hurt a lot.  Thats what the first rheumy kept saying to me “you have no swelling”.  But the second doctor took one look at me and said “oh yes you have swelling ..here and here …and here.  I was so relieved I could have fainted.

So it takes a skilled doctor to make a good diagnosis.  ( I now have the red hot swelling that everyone can see, but it took years to actually be obvious)  Now my tests are not negative either.  Five years later.  Can you imagine not getting meds for five years because I didnt have the proof? 

She was right about feeling better.  I had a short wrong turn detour with Arava, which made my hands and feet numb ( had to have EEG ..diagnosed with Peripheral Neuropathy) ..which is a known side effect of Arava.  But now, I’m on methotrexate, and Enbrel and have had a pretty comfortable three years.  Although now I can feel its wearing off ..I only get a day or two of fairly good pain relief. 

I have been dealing lately with dry sore eyes, floaties and blurring.   On to the next problem associated with RA!

Kay works as a wedding videographer. She can be found on Twitter @kaypros.

 

This is Leigh Ann’s onset story, in her own words.

Hi my name is Leigh Ann. I am 33 and live in Texas. I have Rheumatoid Arthritis. I was officially diagnosed by a doctor with RA in October of 2008. This is my onset of RA story.

In September 2001 I was half way through my first pregnancy and experiencing extreme pain in both of my hips. My OB and all my friends and family told me it was just my body adjusting to being pregnant and preparing to give birth. I gave birth in January of 2002 and the hip pain did not go away.  I should mention that I am blessed to be married to a physical therapist. My husband would take me to his clinic and do ultrasound, heat and various other things to help relieve the pain. I would temporarily feel better but the pain would always come back. Fast forward four years and through 2 more pregnancies, it’s February 2006, I had just turned 30 and delivered my third child. I was still experiencing bilateral hip pain, and now I had pain in my left shoulder, and persistent pain in my lower back. In July 2007 I finally went to the doctor and I chose a doctor that specialized in Allergy & Immunology, Internal Medicine, and Rheumatology. He took x-rays of my neck, left shoulder, lower back, pelvis, and hips. According to him the results stated that my neck was fine. Left shoulder was fine. Hips were fine. Pelvis was fine. My spinal x-ray showed that I had mild spondylosis at the L4-L5 level, mild degenerative facet arthropathy at the L3-L4 level, mild annular disc bulge at L4-L5, and several synovial cysts at the L5-S1 level. He gave me some NSAIDs and a pain patch for my hips and back. That was that… oh and I needed to lose weight as I was about 40 lbs too heavy so he sent me home with an ‘at home’ exercise routine.

By September 2007 I was experiencing pain in my wrist and some numbness and tingling in my hands and fingers. At the time I was finishing up my college degree long distance online. I spent a lot of time at the computer writing papers and emailing my classmates. When I started to experience wrist pain, first in my right wrist than in my left, my husband and I assumed it was carpel tunnel. It was Thanksgiving day 2007 and I was on the phone giving my sister directions to my new house and my hand went totally numb and I could no longer hold the phone. I switched hands and the pain in my hand when I gripped the phone was too much. I handed it over to my husband to finish talking to her. I was concerned and frustrated. By December 2007 I was still having pain in my neck, wrists, pain in my left shoulder, and now my hands were sore, my fingers were tender to the touch, I had lost 50% of my hand strength which caused me to struggle with holding a pen, to type, drive, and do most basic things, and I was waking up in the morning with my hands stuck in a claw-like form. My husband bought me a paraffin bath unit for my hands and every morning I would dunk them just so I could function. I was struggling with pulling the covers up at night, sleep was painful when it came. I was tired and cranky, frustrated and knew that there was something going on and I was going to figure it out.

I am the type of person who needs to know the details. I love to research things and frankly the details in things interest me a great deal. So I took my obsessive researching need-to-know trait and put it to use. I Googled, and searched and read everything online I could find about painful stiff hands and fingers. I did the webMD symptom checker; I went to every chat site and message board I could find that ever mentioned “painful, stiff, claw shaped fingers”. I came up with Rheumatoid Arthritis over and over again. I talked to my husband and he agreed with me that it seemed likely that I could have RA. I still didn’t know much about RA and I only had pain in my hands and wrist, I didn’t think that was enough for it to be RA. (at the time I didn’t tie in the pain in my shoulder, neck, back, or hips to be apart of the big picture). In January 2008 I went to see a hand and upper extremity specialist. He did a nerve conduction study on both wrists, and my shoulders. I had mild abnormal results in both wrists but nothing so far out of range to really indicate anything. He called it carpel tunnel syndrome and sent me to physical therapy (yes my husband is a physical therapist) and had a brace custom fit for my wrists.

Side note here… because my husband is a physical therapist I was ALREADY doing PT and I had been sleeping in braces and wearing them daily for almost 6 months. So to have this “specialist” just do the same thing that I have already been doing royally ticked me off.

Meanwhile in the following weeks I started to have pain and stiffness in my ankles. They were swelling and I was barely able to walk in the morning and climbing the stairs to get to my children’s rooms was next to impossible. In February 2008 I went back to the first doctor and he took x-rays of my wrists and found nothing “remarkable”. He also did a blood test to explore the possibility of RA. The results came back negative for the RF factor. I did NOT have RA. End of sentence – according to this particular doctor. So I took matters into my own hands so to speak and sought out another doctor. This doctor was a surgical radiologist; he used ultrasound to look at my hands, wrists and ankles. The results indicated bone erosions in my fingers and active inflammation in all of my fingers and both wrists and suggested that an MRI would be recommended. My ankles each had rather large ganglion cysts but “no indication of any inflammatory arthritis”

June 2008 I had I met with a neurosurgeon/spine surgeon for the persistent neck pain, L shoulder pain, numbness and tingling in my left arm and hands. He did a cervical MRI with contrast and one of my brain. He ruled out MS and various other disorders. He suggested I go to an orthopedist to have my shoulder looked at, as he felt that it was the source of my problem. I went to doctor number 5 in late July 2008. I had x-rays and an MRI of my should done and was declared to have a shoulder impingement and rotator cuff tear. In August 2008 I had shoulder surgery to repair it. I had extremely high hopes that this was the fix to my problem. Six weeks after shoulder surgery I was cleared from my orthopedist yet was still having hand and wrist pain. The neck pain was still present, the ankle pain was still present, the hip and back pain still there. BUT I DID NOT HAVE RA!

Every doctor that saw, I was tested for RA and was negative for the RF factor turned the page and said I must have fibromyalgia and/or carpal tunnel. By this time I had my very own personal pharmacy in my bathroom. I had narcotics ranging from both ends of the spectrum, and just about every name brand and generic drug that was up and coming at the time to deal with pain. I had officially been brushed off 4 times by doctors and referred to pain specialists. About this time my husband had switched offices and brought home several of his professional magazines. I was helping him discard them and for whatever reason I picked up one that had on the cover in small print in the bottom left corner “Diagnosis of early RA key to clinical management”. I stood over the trash can in my kitchen and read the article. It was like reading about ME! It talked about” 20% of RA patients being seronegative…will have no RF marker”. I drank in the information from this article and then at the end of the article it gave the information for the author, who just so happened to be a Staff rheumatologist at a local hospital near where I lived. I strongly believe it was divine intervention that I not only found that article but noted who wrote it.

I promptly handed the article over to my husband and went to search for the contact information for that doctor. I called and asked if they accepted my insurance, they did (yea!), I asked for an appointment and the next available was October 8^th 2008 just 2 weeks away. By this time I was CERTAIN that I had RA and felt like I was just searching for a medical professional to agree with me and to help me with the pain. My husband went with me to my doctor’s appointment.

This doctor was like an angel. She looked me in the eye, she touched and felt each joint in my fingers, and she looked at and touched at every one of my major joints. Then she asked me some questions, and I will never forget what she said next, she said that we’ll get some blood in a few minutes but I really don’t need them to know your diagnosis, you have rheumatoid arthritis. You have 8 out of 10 markers for RA; I am surprised that nobody has caught this before. She immediately put me on prednisone and then set me up to come back in a couple of weeks to start on methotrexate.

Then 2 weeks after that visit I came back again to start my humira injections. October 8^th 2008 I learned I officially had RA. I have been managing with some success since then but am still struggling with it as we all know RA doesn’t play by the rules. I recently switched from humira to enbrel and while it seems to have picked up where humira had left off I am not pain free. I am stubborn and relentless. If I hadn’t been I don’t know for sure if I would have ever gotten the correct diagnosis. I feel strongly that it God that put that article in my hands and it was His Grace that got me through the pain and discomfort for so many years.

It was not so long ago, that I said to my husband that I can’t really remember what it was like to have been in so much pain nor how I handled it with 3 small kids and faking a smile all the while. I am grateful for my doctor and the medication she has given me to have the life I have now back. While I’m not 100%; I still have hand/finger pain, and suffer with hip, shoulder, back, neck, ankle, foot and toe pain but it is not like it was before. I can walk and run quickly to an injured child if I must, I can climb the stairs to my children’s rooms, I can do most things now just with some modifications.  I try not to take the good days for granted because I know a bad one is just around the corner. I hope that my story helps somebody out there to see that you don’t have to have the RF factor to have RA and if they are suffering and being brushed off, to not take no for an answer and to keep searching for the right doctor.

This is Vicky’s RA onset story, in her own words.

Hi my name is Vicky and I am 24 years old and live in Georgia. I was Diagnosed with RA about 6 months ago and at the time I was so glad to have an answer but knew I was about to be in for the longest roller coaster ride of my life.

It all began when I was 7 or 8 years old, I was a very active child but always complained of “hurting” especially in my hands and legs. When I was about 7, my mom woke me up for school one day and my ankles were swollen the size of softballs and I told her I couldn’t walk, I got out of the bed and fell down. She immediately took me to see my pediatrician, who did a full exam and tons of lab work that all came back normal. I had multiple episodes of this as a child and he continued to tell my mom it was normal just from “growing”. I continued to be a very active teenager playing soccer and cheerleading but still had a lot of aches and pains.

At 17, I started having severe problems with my lumbar spine and after seeing a specialist, we found out my L5-S1 disc had began to degenerate and we choose to have a lumbar fusion but no one could tell me why this was happening at such a young age.

I then began to have severe pain and swelling in my hands and feet, to the point where I had to run warm water over them in the morning just to move, so this year at my yearly physical with my GP he ran the routine lab work (ANA,RF,Sed rate,etc.) My labs came back, once again mostly normal, except a positive ANA. Now this scared me to death because my first thought was lupus. My mothers twin sister had recently passed away from having lupus and RA so needless to say I was scared to death.

My GP then refered me to see a Rheumatologist, who in my eyes has been a angel sent from heaven! She did some more labs and a full physical exam and said I definitely did not have lupus but I have sero-negative RA, and she believes it is Juvenile RA that was misdiagnosed which would explain all the pains as a child, the degeneration in my spine and all my joint pain.

I was immediately started on Prednisone,Plaquenil and Diclofenac. After about 2 months I was only seeing minimal relief so she added MTX 4 pills a week. I had horrible nausea and abdominal pain and ended up having to have my gallbladder removed. She then switched me to MTX injections which I just started this past week and I am hoping to see wonderful results if I could just get through the night sweats that come with it!

It is so hard being 24 and recently married having this disease. My husband and I actually argue a lot more now, because he says I never feel good and I can’t use that as an excuse for everything, but it’s just so hard for the both of us because he just doesn’t understand. I am hoping the new year will bring health and painless days to my future. 

 

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The Infamy of Rheumatoid Arthritis (RA)

I’ve answered several questions lately about Rheumatoid Arthritis and secrecy. Is there something embarrassing about RA? Can we just talk about it with anybody?

Lucille Ball was one of the most famous people with Rheumatoid Arthritis. However, when she died, I did not hear about her RA battle. It was not until I did some RA research that I realized Lucille Ball had Rheumatoid Arthritis.

Why was that? I was a huge Lucy fan; she was a funny girl’s idol. She made it cool for a woman to be goofy instead of just glamorous.

Lucille Ball scrupulously hid her Rheumatoid Arthritis from her adoring fans as well as from others in her industry. I’ve read that she did not tell people that she was in pain or why she required rest. When you read about how, as a celebrity, Lucy hid RA, it seems like she felt some kind of humiliation about the disease.

Lucy’s not the only one. There’s Kathleen Turner, who was willing to let people think she was an addict instead of let on that she had Rheumatoid Arthritis. It reminds me of a post by Sara a while back in which she called RA the Loser Disease.

As I discussed with IrishBookFairy recently, most RA’ers do become private about their Rheumatoid Arthritis symptoms. Before I started a Rheumatoid Arthritis blog, I had to practically pry information from a couple of people with RA who were corresponding with me. I’ve been trying to figure this out for a while.

Early in the last century, people hid cancer. But that was due to the likelihood of impending death. Fortunately, both of those are much reduced today.

I’ve read that people with psoriasis or shingles often hide their illness due to embarrassing symptoms. Are RA’ers doing the same thing? What humiliation is there in having an illness that you cannot have caused?

Does Rheumatoid Arthritis disability make us feel humiliated? Is it caused by the reactions of others to our pain? Or potent Rheumatoid Arthritis medicines? What do people with Rheumatoid Arthritis symptoms have to be embarrassed about? Is it the Scarlet Letter A of diseases? What for?

Related posts:

Celebrities and Rheumatoid Arthritis

5 Ways We Can Spread Awareness of Rheumatoid Arthritis

Some Answers for Rheumatoid Arthritis Just Bring More Questions

The Birth of the Rheumatoid Arthritis Warrior Blog

 

Living with Rheumatoid Arthritis as a teen

What is it like to have RA as a teenager?

“Having RA and being a teenager is hard. It’s like ‘only older people get this’ and I have it! LOL. But I’m still the Crazy, God-loving, fun Girl even if I do I have this. It’s hard sometimes because people judge you. Like you have to go to college and you have to get a job and you have to do this and that. And I’m like ‘Hello! I have RA, I’m not Super Kid.’

 And RA makes you tired and in pain all the time. Sometimes it’s hard because I want to do so much yet I can’t. This disease may never go away for me.”

I asked Pamela whether she talks to her friends about Rheumatoid Arthritis.

“Not too many people know about it, because they don’t understand. Everybody thinks it’s for old people only. And I have to tell them, but I don’t mind because I want them to know. Sometimes they don’t seem to care till they see how you are when you are in pain. And most of the time they care and want to know more about it. “

Did you know anything about Rheumatoid Arthritis before you were diagnosed?

“Well, no. Just my aunt and I didn’t know that much, But that’s the only time I have heard about it. Well, all I knew (was) it had something to do with your bones… my aunt on my Father’s side got it when she 25. She has it really bad.”

What the world needs to know about Rheumatoid Arthritis

What would you like to tell people about living with Rheumatoid Arthritis?

“RA is one of things in my life I wish I didn’t have! …Don’t judge people with RA – everyone is going though stuff. And always help them when they ask for help and be patient and CARE!”

What is the best way someone can help you with your RA?

“Just telling me, ‘You will get better’ and just caring. Even understanding a little bit helps.”

The impact of Rheumatoid Arthritis on a young life

How do you think RA has affected your family?

“Well, they have had to do a lot of stuff I can’t do anymore. My Mom is always there for me; she takes me to my appointments and stuff.  My Dad understands what I am going through.  And my brothers make dinner when I can’t or do a lot of stuff for me and they don’t mind. We had season passes to SeaWorld and we had to give it up because I can’t walk far. Our family likes to go to festivals and we don’t anymore. Or I stay home with my mom. It’s stressful with all my medical bills piling up. I feel like I am a burden even though my parents tell me no, I am not. “

Have any of future plans been influenced by RA?

“Oh yes it has! …(I wanted) to be a Chef, but now I’m looking at other things – something that’s not that much toll on my body…Chefs stand up so long and I can’t handle that and college. Well, I’m going soon or when I feel better. I’m so tired of people judging me if you don’t or if I put it off. I feel like when taking time off, I have to have a reason other than ‘I don’t feel good’ or ‘I can’t move today’!! I know some people can be chefs, but for me it’s always my back. Even when I cook for my family, it hurts or is too hard.”

Very wise advice about Rheumatoid Arthritis and life

What have you learned from living with Rheumatoid Arthritis?

“I have learned to have faith in God and my family because you never know how you will feel from one day to the next. And don’t be afraid to ask people for help. That is one thing I don’t like to do. But some days I have to. And always take care of yourself.”

Final observation: A cure for Rheumatoid Arthritis apathy

It is very clear that the impact of Rheumatoid Arthritis on a young life is tremendous. Physically, Pamela has been held back from many things. However, spiritually, she has strength beyond her years. I love the way she balances realism and hopefulness. If everyone listened to her words, the world would be a better place.

Did you miss Part 1 of the interview with Pamela?

Recommended reading:

Is There a Typical Rheumatoid Arthritis?

What Is Joint Protection for Rheumatoid Arthritis?

How is Rheumatoid Arthritis Diagnosed? Part 1

 

Cool things in common don’t include living with Rheumatoid Arthritis

A couple of months ago, I met Pamela. She is a soft-spoken girl who loves God and the Jonas brothers. She adores her family. In spite of our generation gap, we have a lot in common. We both cut coupons, go to church, and love music, tennis, Twitter, and homeschooling. Sweet, huh?
Unfortunately, Pamela and I share another thing: Rheumatoid Arthritis pain.

 

An elusive Rheumatoid Arthritis diagnosis

In the winter of 2004, Pamela was 13 years old. She was a healthy athletic teen, especially loving to run. One day, she could no longer run. She remembers, “Somehow… all that disappeared.”

“I woke up stiff one morning and had a lot of trouble moving all day long,” she says. Pamela’s first clue that she was sick was lower back pain. Her parents took her to a doctor, who recommended a rheumatologist. A few months later, the rheumatologist ordered x-rays and blood tests. Pamela’s diagnosis: “growing pains.”

Since the doctor spoke “like he was ordering lunch,” Pamela tried to believe that nothing was wrong with her. She recalls, “I believed him and went along my merry way. I was so confused as to what was going on.”

Over a year later, Pamela was still having pain so she went to another doctor. This time, she was told that her legs were too long and her muscles were too firm. She was prescribed exercise such as “Pilates or yoga.” Pamela’s response: “I believed her. I kept having pain. After that, we just stopped going to doctors. My parents and I were so discouraged as to what was making me have pain.”

Every morning, Pamela woke up stiff and in pain. So, of course, she did eventually look for another doctor. In 2008, a rheumatologist ordered cat scans on her spine and bone density tests on her wrists and feet, which revealed erosions that signify RA. At age 17, Pamela was finally diagnosed with JRA or Juvenile Rheumatoid Arthritis. Her lab (blood) tests were still normal.

To be continued:

Fun & inspiration coming up tomorrow in part 2 of our interview. Pamela and I talk about life as a teen living with Juvenile Rheumatoid Arthritis. Just last week, Pamela started her own RA blog. Maybe you want to follow her blog too.

Personal Note: My troubled reaction to Pamela’s RA diagnosis story

This part of Pamela’s story probably sounds familiar to some of you. Unfortunately, getting a Rheumatoid Arthritis diagnosis is more like crossing the Atlantic in the Mayflower than a jet plane. Many find it fraught with detours and perils.

I have written blogs about some of the causes of Rheumatoid Arthritis diagnosis being so difficult. However, one of these days, we need to look at the consequences of that. It is not acceptable for doctors to dismiss symptoms of Rheumatoid Arthritis because of negative blood tests. The only reason for this is that doctors are not educated enough about what the onset of RA actually looks like.

Recommended reading:

Should Rheumatoid Arthritis Patients Exercise, Part 2

10 Dumb Questions About an MRI for Rheumatoid Arthritis

Rheumatoid Arthritis and Medication: Are Natural Medicines Better?

This blog post is part of an ongoing series on the so-called “complications” of Rheumatoid Arthritis called RA Is Complicated: “Complications” of Rheumatoid Arthritis

Stephanie: Profile in Courage

Last month, we took a look at Rheumatoid Arthritis in the vocal cords or larynx, called Cricoarytenoid Arthritis (CA). I hope you’ll read both blog posts on CA, Part 1 and Part 2, in which you’ll find some of the common symptoms to look for and some surprising statistics about CA in RA.

Doing research on Rheumatoid Arthritis, I have encountered several remarkable RA stories – all with actual lives attached! One of those lives is a fun loving lady named Stephanie. Today’s blog is a treat: in this profile in courage, you’ll meet a fellow RA’er who lost her voice permanently in 2004 due to Cricoarytenoid Arthritis.

How did I find out Stephanie has CA? I knew that she had Rheumatoid Arthritis and we had chit-chatted a little on Twitter. I had seen her cooking blog. One night, I noticed her bio said “voiceless chickie.” I knew that was either some weird joke – or her RA!

Steph’s RA story

Stephanie has had RA most all of her life. Her Juvenile Rheumatoid Arthritis began at age two. She endured years with no RA treatment due to the confusion of doctors about JRA and the state of science / RA treatments at the time. She even waited for an entire year to see a rheumatologist on two occasions.

The doctors were unable to recognize all of Steph’s RA symptoms as Rheumatoid Arthritis. Some of her main complaints were problems with her tendons, eyes, skin, lungs, and you guessed it: her larynx. Of course, she has had lots of joint pain and weakness, too.

Steph’s vocal cords left her unable to speak for 5 whole years. Her many years with untreated or undertreated Rheumatoid Arthritis left her vocal cords and lungs permanently damaged.

Moral to Steph’s RA / CA story

There are at least two morals to Stephanie’s Cricoarytenoid RA story:

First: There is no perfectly typical pattern to Rheumatoid Arthritis onset.

Second: However, it is critical that we promote better education of doctors, patients, and the public about what Rheumatoid Arthritis can do to a person so that early diagnosis and treatment is possible. This brave woman has many other things to teach us. I hope you will read her whole story on our Onset Story pages. The ending is not only fascinating, but critically relevant for many of the goals of RA Warrior.

Note: In this video on her own blog you can actually hear Stephanie’s voice which has recovered slightly now that she has begun to take the DMARD methotrexate to treat her RA during the last few months.

Read the first 2 parts of this series: Cricoarytenoid Arthritis in R A (Rheumatoid Arthritis), part 1

Recommended reading:

What Is Joint Protection for Rheumatoid Arthritis?

Can Rheumatoid Arthritis Affect the Spine?

Is there a blood test for Rheumatoid Arthritis? Part 1

The story of how my Rheumatoid Arthritis symptoms began

Several months ago, I wrote out the story of how Rheumatoid Arthritis began for me. I determined to put down the whole story in case I ever needed to share it. It was punishing for me to write for two reasons:

1) I did not want to relive the story.

2) I forced myself to stick to the facts, refraining from humor, sarcasm, anger, or grief.

As I have stated recently, I am uncomfortable writing about myself. Today, I am publishing my onset story of RA, Onset Upon a Time. So often on the blog, I edit out my own experiences in order to be objective. Now is your chance to see the long version of my own RA symptom story. I hope that I am finished discussing details of my own Rheumatoid Arthritis for a while.

Next week, I have some fun things planned for the blog. Meanwhile, have you ever written down your RA onset story? I am planning to post some here on the blog. So, click here to see how to send me your RA onset story or read more about the purpose of the Onset Story project.

Go straight to Kelly’s onset story

Click here to learn more about how to send in your story.

 

Recommended posts:

Dr. Dolittle and Rheumatoid Arthritis

Can I Delay Treatment for Rheumatoid Arthritis? part 2

Palindromic Rheumatism Is Not a Rare Form of Rheumatoid Arthritis

The story of the courageous and cute Nicole Bradshaw

Imagine cold sharp screws digging into your skull while you are wide awake. No, it’s not an early Halloween movie. It’s Nicole Bradshaw’s autobiography.

This vibrant Australian young woman has lived with Rheumatoid Arthritis since childhood. She became accustomed to pain, surgeries, and medications. Her courageous spirit and sense of humor kept “it all under control, or so she thought.”

And then one day, as she puts it in her book, “her head fell off!”

She writes about herself: “Suddenly and when she least expected it (like you ever would), her head fell off. Just like that! Nicole had a basilar invagination… (this) occurs when the odontoid peg (that’s the little peg your head sits on) moves up through the base of your skull. Nicole’s did just that, and was touching her brain stem and spinal cord, causing her to lose strength in her legs and arms and feel indescribably weird.”

Nicole has written the story of her recovery from this episode and her life with the disabilities of Rheumatoid Arthritis. At this point, Nicole’s memoir is self-published online. She is hoping to attract enough attention to have her story published and “end up on Oprah,” she says.

I hope you will check out her website Has my halo slipped? You can read the first chapter of her book online for free. Perhaps you will want to mention her book venture on your blog or twitter. (Or you can post to FB or twitter with a button below this post.)

Basilar Invagination

In case you are curious, here are a couple of links that will help you learn more about this rare and serious complication of Rheumatoid Arthritis. Also, please read the comment about chiropractic manipulation and RA that I wrote in response to Viesta on a recent post. It is important to take precautions if you have Rheumatoid Arthritis in the cervical spine.

Wheeless Orthopaedics Textbook with x-ray images

Cedars-Sinai Medical Center

A doctor’s description of the condition and its treatment

Courageous warriors against Rheumatoid Arthritis

This is the first in a regular series of profiles in courage. RA Warrior will feature the heroic tales of real RA’ers who fight RA every day. This is what I asked Woman’s Day to do. But, you know what they say, if you want something done right, sometimes you gotta do it yourself.

Recommended reading:

Baloney About Rheumatoid Arthritis

Summer Read: American History story about character and disability

Rheumatoid Arthritis Can Leave You Stuck in Orbit