Barbara’s Rheumatoid Arthritis story
Leigh Ann’s Rheumatoid Arthritis story
Lisa’s Rheumatoid Arthritis story

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

About 13 years ago I started having trouble walking in the morning. I would get out of bed and hobble for the first hour I was up, and that was early. At the time I was a VP at Merrill Lynch and a single mother. I didn’t have time to worry about something that seemed to fade as the day went on. Never mind that it was happening almost every morning.

After September 11 happened, I took a package, semi-retired and moved upstate NY to be near one of my sons and his family. I got a job in an office since I was not well off enough to fully retire at 51.

Then one night about 7 years ago I woke up crying from the pain in my one shoulder. I called in sick and dealt with the pain. The next day I went to work with a sling on my arm, hoping that if I didn’t move it the pain wouldn’t be too bad. Like I could really move it. It was horrible to even get dressed in the morning. (Now I never buy anything that has to be slipped on over my head, only button up blouses.)

It took about a week for it to stop. Then a few weeks later I woke with the same intense pain in my other shoulder. This time I called my primary care doctor and went to see him. Now I like this man, but he said it must be a rotary cuff tear. I also told him that BOTH times this happened I had a fever. He gave me some exercises to do. When it happened a third time (it jumped back to the original shoulder), off I went to the doctor again. Now he ordered an x-ray, telling me that sometimes lung cancer can cause a pain like this. Great. Of course he felt it must be frozen shoulder, but wanted to check out the cancer thing.

Thankfully (or maybe not) the x-ray showed nothing. So after researching online, I made an appointment for a rheumatologist. Good thing, as my primary seemed to have no idea what was going on. Turns out my Rheumatoid factor was 207, my SED 60 and my C reactive protein 5.1. As the rheumy said, even without my story the tests would tell him that I had RA. Due to my insurance I had to spend a year on methotrexate and prednisone before starting Enbrel.

Today I take one shot of Enbrel and one shot of methotrexate a week and seem to be doing ok, or as ok as I can. I still get flares, but I will not let this thing win. Sometimes my fingers ache so badly, and upstate NY can be very cruel in the winter. Some things are not as simple as they used to be.

Too bad that 1) I didn’t realize that what was happening to my feet was just the start of something bad, and 2) that my primary was so ignorant of the symptoms of RA.

Now my biggest worry is: Did I somehow pass this gene down to my sons and my granddaughter?

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

Shortly after I turned 20 years old I started to have some pain in my right index finger. I ignored it for a while, but then I was at work and I was having hard time holding on to things and I decided to first go to student health services at my current college. With the student health insurance, you have to start there and get referrals. After visiting there they had no idea what was wrong and told me to go to a doctor’s office. 

I ignore it for a little while longer when I just got off of spring break and I was trying to take notes in my class and I realized I could not hold a pen and write. Later on I went to urgent care at my doctor’s office and they told me they thought I had a cold that settled in my joints. I thought that was a little off, but they did some blood work and I made an appointment with my family doctor.

When I went to my appointment they said they thought I had possible RA and they were sending me to a rheumatologist. I really did not know what RA was, but I didn’t really freak out about it and then when I showed up for the appointment 4 months later. The diagnosis at the time was Lupus and I really didn’t know what Lupus was either. They did more blood work and a few weeks later I was checking my messages on my phone and they told me on my answering machine I had RA.

At my second appointment, he explained that it was a slow moving disease and since we caught it early everything should be fine – that was in June 2006. Fast forward almost 5 years I am currently 25 years old and I am already on disability and all the meds we have tried have failed. The one they want me on with the patient assistance program and insurance I still cannot afford. The place that I worked at wrote me up as too slow and told me if I could not walk faster that I should look for a different job. I went on a medical leave of absence and I applied for disability March 10th 2010 and I got approved by the end of April 2010 two weeks before my college graduation. So far that is my story even being diagnosed early did not help.

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

My first thought that something was wrong was when my engagement ring was getting tighter. I knew I hadn’t gained any weight. In fact, I had been trying to lose weight for my wedding. This was around August of 2010. By October, I couldn’t even squeeze my ring on for family occasions and, of course, all sorts of rumors and questions started flying around. Were we still engaged? Were we broken up? That was a pretty big blow, emotionally. I LOVE wearing my engagement ring because of what it symbolizes. Now it is collecting dust because I can’t wear it. My fingers are too swollen.

By November of 2010, my left hand was swollen almost permanently. By December, my right hand and left hand were taking turns swelling up. Some days, they’d swell so much that it would pinch my nerves and my fingertips would tingle. I started losing my ability to grasp and hold on to things, even things that weren’t very heavy. I was becoming easily exhausted, and every few days I would run a low grade fever.

I had gone to see my primary MD a few times during this time period. He saw the swelling, but didn’t think it was very serious. He attributed it to me gaining weight. I am overweight to begin with, and he has been trying to strong-arm me into weight loss surgery, but I have refused because I see surgery as a cop-out. What I need is a dietician, not a surgeon – but that’s another story.

I should probably mention that I have a few other diagnoses as well. I have both an anxiety disorder as well as a panic disorder with agoraphobia. There is some depression there as well, as I mourn for the active life I used to lead and learn to accept the fact that my 3 year old is going to grow up with a mommy who can’t take her places because of the horrible panic and anxiety attacks. So far, none of the 8 medications I’ve been given have helped, and therapy has only been minimally successful. In the fall of 2009, I had a cardiac ablation for atrial flutter. I woke up one morning with my heart beating so hard, I could feel it in my toes. I went to the ER with a heart rate of 266. The following day, I had the ablation and 2 days later, I was discharged on heart meds to help keep my heart rate regulated.

To this day, they still can’t tell me what happened, other than I had an extra electrical pathway in my heart that stayed dormant for 33 years and then decided to act up out of the blue. I have a touch of arthritis in my left wrist from when I broke it as a child and 2 herniated discs in my lower back, presumably from being overweight all my life. I’m also seeing a GI specialist to rule out an ulcer.

Anyway, my doctor kept blowing off the swelling and pain in my hands. He kept telling me that the pain was all in my head, stemming from my anxiety disorder. It wasn’t until I threatened to report him to the licensing board for failure to treat a patient that he decided to do a blood test. I think he did that to shut me up, more than he did it because he felt it was the right course of treatment. My blood test was fine, except for a little anemia, which he blamed on my menstrual cycle…which had ended 2 weeks before the blood test. I told him that wasn’t good enough and he needed to keep digging because I could no longer pick up my daughter, fasten her car seat clips, or carry anything that weighed more than a few ounces. Again, I ran through my symptoms of pain and swelling, and he decided to do another blood test for arthritis. This one came back elevated for inflammation so he referred me to a rheumatologist.

Because I have Medicaid, it was difficult to find a rheumatologist that accepted my insurance. Despite the fact that I live in a major metropolitan area, I have to drive almost an hour to see my rheumy. And he is a TOTAL jerk. He treats me like I have the IQ of a dust bunny. For 4 months, I suffered in pain because every time my MD faxed the referral – which was required before I could even make my first appointment – they’d lose it. I had to go to my MD’s office, pick up the referral, drive it an hour to the rheumatologist to drop it off, and then make an appointment for a later date. He didn’t have an opening for a new patient for another 7 weeks.

My first visit, all he did was blood work. He pretended to take my blood pressure and listen to my heart, but given the fact that the stethoscope never actually touched my skin when he put it there, I have no idea how he was able to do either one. He was in the room for all of 3 minutes. A week later, the nurse called me to tell me that I didn’t have RA because my rheumatoid factor was negative. I asked “So how does that explain the pain and swelling in my hands?” She told me that maybe I had broken both of my hands and didn’t realize it. Uh-huh. Ok. I demanded to speak with the doctor and told him that I am not stupid and that if I had broken both of my hands without any actual injury, he better call the Guinness Book of World Records. He sent me for hand/wrist x-rays and those came back normal. I went back and told him “Something is going on. You need to keep looking and I’m not going to stop being a pain in your ass until you find out what’s wrong.”

He ordered a nuclear bone scan. That came back with inflammation in all the joints of all 10 fingers, plus the wrists and both elbows. I wanted to shove the results in his face and yell “I TOLD YOU SO!!!!” but I didn’t. I just asked what the next step was. He ordered another blood test, and my SED rate was at 38. He told me “Oh, it’s only 38. It’s not that bad.” and gave me some Relafen. He also drew more blood for a Vectra DA test. When I asked him what that was, he got annoyed with me and said “It’s a blood test that will tell me which kind of autoimmune disorder you have. Since your Rheumatoid factor was negative, I need something more definitive before I diagnose you with RA.” I asked him if he thought it was RA and he said yes. I filled the prescription, only to find out that Relafen is an NSAID, which I can’t take, per my GI doc, because it has an increased risk of causing stomach problems and bleeding ulcers and sudden cardiac death, which I’m sure my cardiologist would just love. The rheumatologist got annoyed when I called him and told him I couldn’t take the Relafen, and asked if he had read the medical history I had filled out, which explained my ulcer issue, heart issues, etc. He ignored that question and told me that he wasn’t going to give me any more prescriptions until he got the results of my Vectra test back, which takes 2 weeks.

So now I wait, with a “most likely” diagnosis of RA. My hands are still swollen and in pain. I now have pain in my fingers, hands, wrists, arms, elbows, shoulders, neck, left foot, and right hip, as well as little pimples that come and go on my fingers/hands. It takes me about 3 hours to get moving in the morning. I am constantly exhausted and wanting to sleep. I run a fever 4 days out of 7, and hugs from my 3 year old feel like every bone in my body is being broken simultaneously. My primary MD is still convinced that this is all in my head, since my Rheumatoid factor was negative. And I have no meds to take to help the pain and swelling, not to mention lessen the damage that has been going on for 8 months now. I can’t help but wonder which factor is the biggest contributor to me having such a hard time: the fact that I’m on Medicaid, the fact that I have a mental health diagnosis which makes all my doctors think I’m making everything up, or the fact that my rheumatologist is a jerk. I never imagined I’d be on this kind of roller coaster and be in this much pain at the age of 35. It’s very depressing.

<< Back to Onset Story main page.                                         Go to page 26 of Onset Stories. >>

Click here to read the 5 comment(s) on this post. Tweet it!

Sharon’s Rheumatoid Arthritis story
Carole’s Rheumatoid Arthritis story
Rochelle’s Rheumatoid Arthritis story

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

My name is Sharon. I’m 64 years old and live in Utah. A year ago we went to Disney World for our anniversary. I was exhausted the entire week that we were there, but thought it was just the altitude change. My right ankle was very swollen and stayed that way until March 2011. I had actually had swollen ankles for a couple of years but didn’t think too much of it. At the end of May, I fell at work and hurt my left knee and right shoulder. I thought the pain I was having was from the fall but I was to find out differently within a few months.

In June 2010, I had several blood tests run and found out that I had hypothyroidism and they put me on Synthroid. I was exhausted all the time and my shoulders and knees hurt. I would fall asleep at work while I was working and the summer months still seem foggy to me. I rarely missed work before, but now I was missing a week at a time because I was so tired and hurt so much. My doctor told me that I would feel better as the thyroid medicine would fix my thyroid. That never fully happened although I did get passed the fogginess.

In September 2010, I had more blood tests run and my GP told me that my Rheumatoid factor was high and I needed to see a rheumatologist. I couldn’t see one until the first of November 2010 and by then my fingers were stiff and swollen, my knees and shoulders still hurt and I was using a cane to walk during the day and a walker to get around my home at night and the toes on my right foot had turned from their normal position to an extreme right turn. I lost 65 pounds between June 2010 and February 2011 without trying which was nice because I needed to, but a little scary too.

I started taking methotrexate November 6, 2010 – 4 tablets a week for a month and then 5 tablets for 6 weeks and then increased dose by one pill per week up to 8 in February 2011. I never had any side effects with this medicine and by the end of February had no swelling and no pain. I was excited that I felt so much better.

Then the roof caved in.  I was having trouble breathing and each day it was a little worse.  Finally, on March 6th my husband took me to the ER and they took one look at me and put me on oxygen.  I told them that I had to go to work the next day so to give me something so I could. The doctor looked at me, laughed and said he was admitting me to the hospital for pneumonia. I thought well OK I’ll be in here a couple of days and back to work by next Monday. NO, RA had other ideas!

I was in the first hospital for 6 days and then transferred to Salt Lake City to the University hospital for 5 more days where they reluctantly let me go home after I told the doctor that he either released me or I was releasing myself. I had no idea if I could do that but I had had enough.  I was now being treated by a pulmonologist. I had been diagnosed with interstitial lung disease which the doctors felt had been brought on by the methotrexate. The doctors put me on 60 mg of prednisone and told me it would just be for a few days. Ten days later I started having a reaction to it. I passed out twice, had vision problems and couldn’t move around except to the bathroom and had to sit down halfway there. I started weaning myself off the prednisone; by the time I went back to the pulmonologist I was done with it and the doctors freaked. I told them that I was not going to take something that made me feel worse than the illness. The doctors then told me that they were going to put me on 80-90 mg of prednisone for 6 months. I told them they weren’t. The doctors completely ignored any questions my husband had as if he wasn’t there and didn’t listen to my concerns. I knew I wouldn’t be back to see them.

We started looking for a different pulmonologist and with a recommendation from my brother-in-law, I found someone who would listen to me and answer my questions. He listened to me and my husband about our concerns and spent 45 minutes with us. He doesn’t think the lung problem is from the methotrexate but from RA itself. I’m waiting to hear back on the x-rays and ct scans.

Has anyone in the RA Warriors been diagnosed with interstitial lung disease from RA?  I would appreciate any info that I could get. I’m still on oxygen and had to quit my job that I had had for 16 years. I’d like to know if I’m going to get better or worse. Thanks for any information.

Note from RAW: Rheumatoid disease can affect the lungs in various ways and is considered a possible site for the disease to begin.

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

My mom died of RA. She had a horrible case, back when the only things to take were gold salts and aspirin. It finally got to her vocal cords. She had so much trouble breathing, she ended up with pneumonia and died at age 76.

Mine started with Palindromic Arthritis. One day, at age 52, I woke up and thought “what in the heck did I hit my wrist on during the night?” Three days of pain and stiffness, then gone! Two weeks later, it was my other wrist. Two weeks later, back to the first wrist. Up all night, feeling like someone was beating me with a hammer. I went to my GP and she came to the same conclusion I had been afraid of… the beginnings of RA. But my RF and sed rate were normal.

However, my thyroid was out of whack, so she put me on Synthroid and Cymbalta. She thought it might be Fibromyalgia. When the flares began to hit fingers, shoulders and wrists every couple of weeks, I made an appointment with a rheumy. I told him my whole story as he typed. No eye contact. No smiles. He sent me down for an x-ray. When I came back up, he said I didn’t have RA – no sign on the x-rays. However, he would do blood tests. Three weeks later they called to tell me my anti-CCP was positive, but that didn’t mean I had RA. They said come back if it got worse. Yeah, right.

Then it went away as quickly as it started. For a year. I began to believe that the rheumy was right. Then it came back even worse than before. Still all in the hands, wrists and shoulders. Still every 2 weeks, or so and lasting for about 3 days. I found another rheumy who had just opened a practice close to my home. He is gentle and soft-spoken. He listened (REALLY listened) and said it sounds like Palindromic Arthritis (which I had never heard of), but I may be one of the 40% moving into full-blown RA. He ordered blood tests: RF and sed rate were still normal, but anti-CCP was up to 130. He did an ultrasound of my wrist and hand. He thinks the ultrasound shows damage before an x-ray can. His feeling was I was moving to RA.

He has put me on two Plaquenil per day. My flares have stopped (but would they have stopped anyway?) But my hands are always stiff. I take Aleve twice a day and that helps. He sees me every 3 months, does blood tests regularly. We are waiting. If the flares come back, we will add Methotrexate. If that doesn’t get it, we will discuss the different biologics. He still listens to me and we work together on what I need.

I feel incredibly lucky that my RA has been mild so far and that the doctor is willing to believe me and work with me. I know that at any time I could begin to hurt all over and my life will greatly change. I’m just enjoying what I have now.

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

I was diagnosed with RA in January 2009. I was 30 years old.

Prior to this for a few months I had various symptoms, but I had absolutely no idea that it was related to RA. I was very active physically and in good shape. I would use the gym 3 or 4 times a week and I was very fit.

I distinctly remember several times before diagnosis when my fingers would ‘stick’ all my themselves to my palm. It didn’t actually hurt, but it sure looked and felt funny. At times it used to make me feel a little queasy and I’d have to ask my husband to ‘lift them back up again’!!

This was a minor problem and after it had happened I just forgot about it until the next time.

More often afterwards I would wake up in a lot of pain, especially my hands and feet.  I remember being reduced to tears from the pain some mornings upon waking and having to walk on my heels to the bathroom in the morning. It felt like I was walking on stones. I remember having difficulty even brushing my teeth and on several occasions I had to cup my toothbrush in both my left and right palms in order to brush because I could not curl my fingers round the brush.

Again I never really paid much attention because this stiffness/pain would come and go and usually I would take a couple of ibuprofen and it would stop.

I had problems turning the tap (faucet) on and off and would struggle to use the toilet and even do up my bra.  Again my husband would have to help me even to undress at night because my shoulders were very sore.

This started to become more and more frequent and it was at the time that I had to virtually crawl up the stairs one day due to terrible feet pain and my mother in law witnessed it that she and my husband encouraged me to see my GP (family doctor).

I remember going to see my GP and explained the problems that I had been having. I think at the time my knuckles were inflamed. He instantly referred me to our local hospital. I had blood tests and X-Rays taken and was given an appointment with the rheumatology department a week later.

When I went to the rheumy he told me that I had RA. He examined each of my joints and asked me to describe my pain in each joint on a scale of 1 to 10. I was having a lot of pain in my feet and hands at the time and I remember waddling like a duck when I was called from the waiting room to his office. Very robotic movements.

My bloods came back showing a high positive RF and the inflammation markers were very high. To be honest I never really realized the severity of the illness as I has never come into contact with it before. I didn’t really ask many questions and didn’t look into it much.

I was prescribed Plaquenil (Hydroxychloroquine) and Sulfasalazine.  I was told that it would take a while to kick in and as I was in a lot of pain and had limited movement which was causing me issues at work with writing and typing he gave me a steroid jab. 

At this time I was having difficulty doing the daily tasks as explained before but the day after the shots was amazing. I remember meeting my husband for dinner after work the next day and being able to run and even hopped about.  It was amazing.

I never started with the medication and the jabs effects lasted at least a month before the pain and stiffness started to kick back in.

In early March 2009 my husband and I were due to go on a vacation to Thailand.  It was going to be our last big holiday before we decided to try for a baby. As the pain was starting to come back I was given another steroid jab but was warned that I needed to start the meds when I returned.

Whilst we were in Thailand I realized that my period was late… on the off chance we bought a pregnancy test and to our amazement and joy I was pregnant.  It turns out I was about 5 or 6 weeks gone. The rest of the holiday passed in a happy blur and when we returned home 2 weeks later I went to see my GP to get everything confirmed.

The symptoms of my RA seemed to completely die down from this point onwards.  I was not on any medication but was so symptom free that I even forgot I had been diagnosed with RA.  My pregnancy was a breeze up until 7 months.  I had no nausea, illness or anything and normal healthy weight gain.

However my waters broke very early at 32 weeks (prepature rupture of the membranes).  From that point onwards it became a bit of a nightmare. I was hospitalized for the next 2 weeks as I was told it was more than likely I would go into labor any day. My husband and I were counseled on the likely outcome of our baby being born so early and I cried nearly every day that I was in hospital worrying about having a prem baby.

2 weeks passed and no sign of labor. They allowed me home but I had to go back to the hospital every day for them to monitor the baby and check the amniotic fluid levels etc. Once I got to 35 weeks pregnant they decided that they would induce labor as there was increasing risk of infection to the baby because the waters had broken so early.

Labor was induced at 35 weeks and 2 days.  I didn’t dilate past 2 cm and so a caesarean section was performed. Our beautiful little girl was born at 35 weeks and 2 days by C Section and was perfect although small at only 5lb 5oz (2.2 kg).

I breast-fed our daughter for the first 2 months but then I experienced a massive flare.  At one point I remember having to change her nappy (diaper) with my teeth. I stopped breastfeeding and started the previously prescribed medication immediately. 2000mg of sulfasalazine and 400mg of Plaquenil.

I have been on this combination of drugs ever since. My daughter is now 19 months old. I have responded very well to the medication and although I still experience mild discomfort now and again, it is nothing compared to pre medication. My rheumy would like me to go on methotrexate, but as I have not finished having children yet (we would like one more) I have chosen not to take this medicine.

For the most part I am able to completely forget that I have RA.  I see my consultant every 3 months and have monthly blood tests to monitor activity and also to minimize damage to other organs from the possible side effects of the meds.  So far so good…

However my husband and I have decided it is time to try for baby no.2 recently. Because I am on these meds I have started to do a lot of research on the safety of this medication through conception and pregnancy. My consutant tells me that meds are ‘relatively safe’ but I am finding conflicting information on the net, particularly for Plaquenil. This is how I came across your site actually.

It has been a week now and I have stopped taking the Plaquenil although I am taking the sulfasalzine and folic acid.  I am starting to experience a bit of pain, particularly my right hand (knuckles) my feet and also the bottom of my spine although I don’t know whether this is RA related or caused by carrying my rather heavy toddler!!

I am, of course, worried that it is due to stopping one of the meds but am also concerned about falling pregnant whilst taking the medication and so I figure that it is better to be Plaquenil free in the hope that the RA dies down again when I do get pregnant. I know it’s a risk but I don’t know what else to do.

This is as far as I have gotten.  I have a meeting next week with my consultant but I am trying to wait a couple of months to get the Plaquenil out of my system before I fall pregnant. I will again try to bring up the subject of medication whilst pregnant.

What I am most concerned about now is how much damage might be caused if I am not on both meds, if any but from reading the various information out there, each case is different and this question is impossible to answer.  It may be vast, it may be none.

Also now that I am doing so much research on RA I am finding out so much information that is such depressing reading. For example I never knew about the increased risk of heart disease, cancers etc and consequently possible earlier death and feel very down about it. I also am so frustrated that there is no knowing how this illness will affect me in the future. The uncertainty is such a worry. Will I be disfigured or wont I, will I become disabled or not? Could I go into permanent remission or not?  So may questions and so little answers.

Really don’t know what to do for the best………. but live in hope that they find a cure one day soon. That’s my story so far. I will continue to be an avid reader of your site and thank you for all the hard work you put into it.

<< Back to Onset Story main page.                                         Go to page 27 of Onset Stories. >>

Click here to read the 0 comment(s) on this post. Tweet it!

Linda’s Rheumatoid Arthritis story
Nancy T’s Rheumatoid Arthritis story
Chessiegirl’s Rheumatoid Arthritis story

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

My onset story began in the middle of October, 2010, when I had just realized a goal that I had thought unattainable.  After beginning violin lessons at 58, I had just been accepted into our community’s symphonic orchestra. Because one of my granddaughters has a metabolic disorder, rendering her fragile, and cannot have a flu immunization, I had a flu shot. I would be in close proximity to many people during rehearsals, and I didn’t want to risk bringing the flu to this fragile child.

Five days after that shot, I developed a slight sore throat and upset stomach which I attributed perhaps to the flu shot. The next morning, I woke slammed with flu-like symptoms except for the typical congestion. As that day went on, I felt increasingly worse. It was as if I could feel fire running through my joints, veins and arteries. My blood pressure was climbing. I felt unable to think clearly. My hands, feet and ankles tingled. By the next morning, my blood pressure was so high that my doctor’s office required me to go to the ER, where my blood pressure measured 232/120.

After treatment with a blood-pressure lowering drug, I was sent home. Within two days, I woke with vertigo so violent that I couldn’t walk without holding onto the walls. I had migraines. That began a progression of tests and visits to a cardiologist and then to a neurologist. The cardiologist didn’t believe that I had cardiovascular disease but rather was having a rare reaction to the flu shot that he has seen in other patients.  Some slight neurological changes were apparent.  After taking my history, the neurologist said she would be testing for B12 insufficiency and autoimmune disorders, either of which could cause some of the symptoms I was describing.

A few days later, news came back that I had a positive ANA and a high Rheumatoid factor.  She referred me to a rheumatologist. She asked if I had been having any joint problems. I told her no. Then, that night, as I put a heating pad in the microwave to warm up so that I could place it beneath my aching hip so that I could sleep, I realized that of course I was having some joint pain. I had attributed my sore fingers to my age (61) and to the hours of practice I was putting in since joining the orchestra. I thought perhaps I had injured my hip. I hadn’t mentioned either to my doctors. Before this illness had hit, I had been jogging 3-4 miles a day, five or six days a week, and had been riding my mountain bike on single tracks and kayaking down the Colorado River for hours at a time, none of which I could do any longer.

In that one week in October, my life was utterly changed. Many days, I can’t drive. I work as a writer, from home. If I weren’t working from home, I would not have been able to continue working. The fatigue has been too overwhelming, and if I try to push past it, I grow so uncoordinated that I stumble and fall. The migraines made it difficult to work, too. I began losing weight rapidly without extra efforts to lose weight.

All these visits took many months, but in late April, 2011, I saw the rheumatologist for the first time. He also said that he thought the culprit was the flu shot, as he’d also seen this rare reaction. However, since my fingertips also turn blue when temperatures dip and since I was experiencing some morning stiffness in my hands, he thought that further tests were warranted. The first week in May, 2011, my anti-CCP antibodies came back at 165, and within days, I was on methotrexate. The rheumatologist warned that I needed to consider starting with this DMARD, because high anti-CCP levels indicated a more aggressive RA that needed to be addressed before joint damage occurred. He offered prednisone, too, to tide me over until the methotrexate’s effects could kick in, but I refused that.

Since my diagnosis, a visit to the dentist for crowns resulted in several weeks of intense jaw pain that I suspect has something to do with the RA although the dentist doesn’t believe that to be true.

In addition to this atypical onset, I had another reason for not worrying about RA. In 2001, I had begun having some joint pain in my hands and had been referred to a rheumatologist. All tests came back negative, and she thought I was likely having a transitory reaction to an illness. The joint pain went away within a few weeks, as she had said it likely would. A few years after that, an ophthalmologist I had seen for what I thought was pink eye said I had uveitis, but again tests for an autoimmune disorder came back negative.

This sudden onset of RA was probably not sudden at all but something I’ve had for many years without the numbers showing up and without being diagnosed.  I probably did have serum sickness, a reaction to the protein in the flu immunization, and that must have triggered a flaring of the RA I didn’t know I had.

Before this began happening to me, my 31-year-old daughter was tentatively diagnosed with an autoimmune disorder and put on one of the anti-malarials. Her rheumatologist said that blood and other tests often don’t show up for a while, but that as the disease progressed, they would be better able to hone in on what exactly was going on with her. Unlike with me, she was presumed to have an autoimmune disorder. Raynaud’s has done some damage to her toes, for example. Sadly, after my diagnosis, the rheumatologist we share now suspects that she, too, has RA.

It’s too early to tell yet how much difference the methotrexate will make, although in the last few days, I think there may be some slight improvement.  Before that, the clumsiness in my hands had progressed to the point that I considered dropping out of the orchestra, just months after I finally realized this goal. I often can’t cut up vegetables or fruits and have to ask my husband to do so for me. I drop things. I stumble. I still often can’t drive. The fatigue may be slightly better, but I think that’s because I’ve learned better to pace myself. Now that it’s warmer, I think longingly of my mountain bike and my kayak, hanging on their racks, wondering if I’ll ever ride another single track or kayak down the river again. More importantly, however, I wonder how this disease will impact my daughter. I am determined to live the fullest life I can, showing her that she can do so, too.

This is Nancy T’s onset of Rheumatoid Arthritis story, in her own words.

I have lived a very nice life from birth to age 65. I have heard tell that trauma can trigger the disease process and I am sure it is true; but, there has been no real emotional or physical trauma in my life with the exception of a few injuries from my horse experiences, and a few joint issues such as stepping off a chair wrongly and tearing an ACL ligament in my knees. I have worked hard and played harder enjoying life, people, and animals. Being a country girl at heart, I have worked on our own ranches and farms helping with the physical labor and enjoying the fruits of working with horses for the last 20 years since retiring from a work career in the art industry. My husband and I have been married for almost 40 years and we have no children to complicate life.

About 10 years ago, my lady GP, a very astute woman, decided to test for Rheumatoid factor to see if the reason my OA was intensifying, came from something else. I have a high pain tolerance, but was taking over the counter Tylenol and ibuprophen in significant doses to relieve my daily pain. I thought it was just a result of my very active physical state working full time with horses. She was also managing my ACL knee repair and then the other knee torn meniscus repair. I have always been flexible of joint, but now came Baker’s cyst, swelling, and loss of flexibility. I guess my knees were affected first, followed by my hands and feet.

We made a move from North Carolina back to our native California in 2004. I had just been confirmed to have the Rheumatoid factor prior to leaving North Carolina, and it was recommended I seek out a rheumatologist in California for treatment. The move was very stressful both physically and mentally which brought on a major flare. Transitioning to a new lifestyle (still with horses, but on a smaller scale) and getting settled in a new place was difficult. I did more physical work than usual moving furniture and my wrists became unusable and extremely painful. I could not sleep and pain was unrelenting. Carpal tunnel surgery was done on the most severely affected right wrist to relieve the pressure on the nerve.

I began treatment from my rheumatologist using prednisone to get past the flare and methotrexate to address the RA. I have only taken methotrexate over the last 7 years and although it has been increased to 20mg./weekly, I am doing well. My hands and feet show deformity, but are usable. My sed rate was 30 in the beginning and now consistently hovers around 6. My liver enzymes have only increased once and I added milk thistle to my supplement program to help keep it cleansed. I feel I am under control and my rheumatologist is conservative which is fine with me. Aleve works best for me if pain needs to be dulled, which might be once a week or so.

Life is good and the reason so for me is I am retired from pressures of working for someone else. I have a very supportive husband who is sensitive to my issues and limitations. I do the best I can with what I have and am happy with life. I wish it to everyone.

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

I have had bursitis in both of my shoulders for a few years now. Typically I get bursitis flares a few times a year. No biggie. I could take a prescription anti-inflammatory for a few days and be done with it.

In January of this year, I woke up with what I thought was a typical bursitis flare. Only after a few days it didn’t end. A week or so later, my arms were going numb from my fingers (all of them) to my shoulders, although the right side was worse than the left. It felt like the numbing-tingling feeling you get with Ben-Gay or Mineral Ice. In addition, when they weren’t numb, my wrists, fingers, shoulders, and sometimes my elbows hurt. It felt like barbed wire was being run through my fingers and around my wrists, and an ice pick was being used in my shoulders. Getting ready for work was the worst part of my day. By the time I left the house, I just wanted to crawl back in bed for a nap and a cry.

My fingers were stiff until about noon (wake up at 5:30am). The pain would also start first thing in the morning and last until about noon, at which point it would “ease”. Most days “ease” meant decreasing. Some days it meant completely gone. Then about 5pm or so, the pain would start back up. Again, barbed wires going through my fingers (from knuckle to middle joint) and around my wrists, hammers tapping on my knuckles. During this time, everything hurt…washing my hands, lifting the laundry detergent bottle (too heavy!), opening jars, holding on the steering wheel of my car, etc. I also could not touch my thumbs to my palms, cross my fingers, or snap my fingers, and not just because of the pain…I literally could not move the fingers into those positions. I also could not bend my wrists all the way forward. I only had about 15 degrees of movement. My darling hubby got very used to ducking whenever I was holding something in my hands, as things tended to go flying around the room. I almost resorted to tying a rope around the soap bar in the shower because I dropped it so often. I think I spent more time picking it up then I actually used it.

So, I made a call to my PCP.  She sent me for an MRI on my C-spine, which showed a bulging disc in my neck.

Next stop was a neurosurgeon who said that the disc was not impinging on the spine, so he wanted me to see a neurologist in his office, along with starting PT for my neck, thinking it was carpal tunnel. I have had carpal tunnel before, and what I was feeling now was like carpal tunnel on steroids. After a nerve conduction test, the neurologist could find no nerve impingement…anywhere…not in my wrist, my elbow, or my neck.

Back to the PCP I went. At this point, a month and a half into my constant pain, I started doing a bunch of research. Having ruled out the disc and nerve issues, all signs pointed to RA. PCP was leaning more towards sending me to an orthopedist, but I pushed a little and she agreed to send me to a rheumatologist (I need referrals from my PCP to see a specialist). She also sent me for hand x-rays. I was able to get in to see the rheumatologist within a few days (they had a last minute opening I jumped at). At this point, it is early April.

The rheumatologist asked me how this all started, looked at my hands, and said he wanted to run some blood tests. Luckily my hand x-rays showed no damage. At this point, he diagnosed it as “inflammatory arthritis” but said he suspected Rheumatoid Arthritis. A month later, I went back for the blood test results (early May). He said my Rheumatoid factor and anti-CCP were “negative”, but my sed rate, CRP, and neutrophils were elevated. I asked “So if Rf and anti-CCP are negative, what do I have?”  He said that 25% of early RA patients test negative for Rf and anti-CCP and he thinks that I fit into this category, especially since I had “classic” physical symptoms and my inflammation blood markers were so high. I had sero-negative RA, and so the treatment started.

I have now been on Plaquenil for a month, prednisone for 2 months (every time we try to “wean” me off, my pain and swelling start coming back within hours), methotrexate, along with Tramadol and Meloxicam.

I can now touch my thumbs to my palms, snap my fingers, and cross my fingers…on good days. Morning stiffness is down to a minor level (almost unnoticeable). I seem to have good days for a week or week and a half and then flare again. I think part of this is trying to learn my boundaries. I discovered yesterday that baking is a difficult task now. My hubby had to help me make cupcakes. I still have some pain almost every day, but most good days it is only enough to break my concentration from whatever I am doing for a few seconds and then I can move on.

On the down side, it seems like my big toes on both feet have decided that they are tired of my hands and wrists getting all of the attention and so they have started to hurt…more barbed wire. I am also struggling with the difference between “giving in” and “adapting”. I spent a couple of months mentally debating whether or not buying an electric can opener would be “giving in.” I finally decided that giving in or not, I cannot use the manual can opener anymore so I really had no choice.

I have to be more closely monitored than usual on the methotrexate because my AST liver enzymes were elevated. My PCP believes that this is due to the anti-inflammatories I was taking. Apparently I was doubling what I should be taking. The levels have come down since then, but are still above normal. If they start to rise, I have to come off the methotrexate. I think the rheumatologist only started me on it because I pushed a little. I think he is very nervous about the liver issue, which I understand, but I want to do whatever we can to treat this. I have to have blood work in a month to test the levels and then see him a week later.

By the time I saw the PCP the second time, I was so tired of being in pain all of the time, I actually wanted it to be RA….at least I would know what it was and I could start treatment. Now, well, you know the story…be careful what you ask for! Most days I am ok with this. After reading so many stories, I realize I am very lucky. We caught this after only a few months, as opposed to the years so many people have had to wait in excruciating pain before being diagnosed.  There is no damage yet (as of last April anyway). I am still functional (most days). So many others aren’t. I also have a rheumatologist I like (have only seen him a few times so I can’t get to I LOVE HIM yet), a husband who could not be MORE supportive, and a management group at work who are very understanding. I spend most of my time at work on the computer and they have agreed to purchase voice recognition software for me. Granted, I am definitely more than just a “worker bee”, but I was pleased at the reception I received. They also stated they would do what they needed to work with my dr appointments and limitations. Additionally, I have found others at work who have lupus, sarcoidosis, and fibromyalgia. We have formed an informal support group amongst ourselves.

My husband is also learning on his own not only from people he works with who have RA themselves, but there are some whose spouses have RA. Among all of these people, he is learning what he can do for me, including letting me find my way on my own when appropriate. So many others have no support, so much damage, and so much pain every day. When I start to feel sorry for myself during a flare (or when I accidentally take my prednisone several hours late and spend 4 days in excruciating pain… luckily I learned my lesson after the first time), I remember how much worse it can be. I do still wonder what the future holds. My worst fear is being unable to care for myself, but I try to use that to motivate me to make the appropriate life-style changes that will maybe “help” this journey, like losing weight, eating healthy, and quitting smoking.

Thank you for listening.

<< Back to Onset Story main page.                                          Go to page 28 of Onset Stories. >>

Click here to read the 0 comment(s) on this post. Tweet it!

Becca’s Rheumatoid Arthritis story
Brittany’s Rheumatoid Arthritis story
Susie M.’s Rheumatoid Arthritis story

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

Hi, my name is Becca and I graduated from art school with a degree in woodworking in 2006. I’ve always been a creative person, always had a new project I was working on and have always worked with my hands. I got a job in a woodshop right out of college and after a year decided to try to buy a house. I was 23, living in Philadelphia and thought it would be a great idea to get a fixer upper, given that I’m a pretty handy gal. My symptoms began a few weeks after I bought the house. My toes swelled and went numb /tingly for a few days. This was odd but also a good excuse to break out my old dr. martens considering how roomy the toes were. About a month after that my hands started acting up. They would ache or cramp up and also go numb/tingly. Around the same time I got very sick with what I assumed was the flu. I went to my PCP who decided I had Lyme disease and started me on antibiotics; she also did a Lyme test and an arthritis panel. All of my blood work came back clean but she still had me finish up the antibiotics since false positives are common with Lyme.

It was downhill from there. The fatigue was incredible – I was falling asleep at work (impressive given how loud a woodshop is), I was constantly stiff and achy, I was freezing cold all the time and would bundle myself in so many layers I looked like the marshmallow man, and my hands just plain sucked. So I started going to doctors and doctors and more doctors. I was tested for everything under the sun and to this day have never had an irregular blood test. Every x-ray, MRI, CAT scan, and EMG test came back squeaky clean. Aside from my initially swollen toes, I’ve never had any obvious swelling and my morning stiffness wasn’t long enough to qualify as anything substantial. I would complain that my fingers felt like stiff little sausages and explain how clumsy my hands were but it was all ignored because they looked perfectly fine. After the yearlong parade of doctors and tests I decided to go back to the rheumatologist.

Lucky for me my new fancy mottled skin (livido reticularis) decided to show up that day and with the limited range of motion and sore joints in my hands, there was enough for her to tell me I was in the right place. It wasn’t a diagnosis but it was enough. We all know how horrible this process is and having someone confirm that I wasn’t crazy, that something unusual was going on and that she was going to help me figure it out was the best news I could have received. Eventually she put me on methotrexate and after a few months without results added Plaquenil to the mix. None of the drugs were working so they ordered ultrasounds of my hands. Finally after all this time I had a test that showed SOMETHING! Holy crap! I’m not crazy! I have bone erosions! There is a reason that I am in pain! I was ecstatic. The ultrasounds showed a few bone erosions and some synovial thickening. My rheumatologist was happy but at the time an ultrasound wasn’t enough evidence so she sent me for more MRIs to confirm the findings. And of course they came back clean, making the ultrasounds worthless. I asked to be taken off the medication; it had been a year, I was only getting worse and the side effects were awful. My rheumatologist told me we would just have to wait and see what happened and I scheduled an appointment 6 months out. I was fed up with doctors at this point but I’d been having a strange neck pain and wanted to get that looked at before I swore off the medical profession. I had a CAT scan that showed thyroid nodules, which came back as possibly malignant and positive for Hashimoto’s. So, I have Hashimoto’s disease? That can cause joint pain! Cured! I’m cured! This has been the problem all along! I went to my rheum and told her about the thyroid and she was so happy for me. She agreed that it might have been the problem all along! She gently shook my hand and said she never wanted to see me again. This was the only time I’ve ever cried from joy. I waited until I got home then completely broke down because I was going to get my life back. I would be able to build furniture and make things and knit and use scissors and get crafty and do all the things that I couldn’t do anymore! I had my thyroid removed and biopsied. The nodules came back as benign. It’s funny because I couldn’t have cared less about the potential thyroid cancer- all I was concerned with was getting my hands and body back. A lot of things did change for the better after the surgery. I’d been having a lot of skin problems that cleared up and the majority of my fatigue went away.

At that point the fatigue was the most debilitating symptom I was dealing with. We’re tough people, we can handle pain and stiffness and the inability to ever feel comfortable but you can’t fight the fatigue. Unfortunately none of my joint symptoms changed. Back to the rheumatologist I went. She told me that it had been unlikely that my thyroid could have caused symptoms as severe as mine. Well…wow. Why did you let me get my hopes up?! And let me guess… there’s nothing we can do? We need to wait until there is more evidence. Fast forward a year to a few months ago. My feet, knees, hips, wrists, hands and recently tailbone are constant issues and things always seem to be getting worse. Still no swelling, no irregular blood work, and no serious morning stiffness. Actually, the best I feel in a day is about 10-15min after I get out of bed and it’s a gradual downward slope from there. I’m gimping around by lunch and once I lay down on the couch at the end of the day, I’m done until I hobble and creak my way to bed. But wait! Apparently while I’ve been waiting around for my feet to swell up or for my Rheumatoid factor to make it above 14 its been decided that ultrasounds are a reliable tool in diagnosing RA. So my doctor sent me to get new ones and they showed all sorts of fun new bone erosions.

Still very little synovitis and the same synovial thickening and no one feels that there’s enough inflammation in my joints to have caused this kind of destruction but that doesn’t really matter because it’s still happening. I finally have my diagnosis of RA, I’ve been put on leflunomide and in a few weeks I have another appointment and we’re going to start the approval process for Enbrel. It took 4 years and I had to hear a lot of those “The sooner you realize there’s nothing wrong with you, the better off you’ll be” and “you just need to exercise” types of comments. I’ve tried sugar free and gluten free diets; I’ve had a lot of acupuncture and tried other things with very few results. But I finally have a diagnosis. I’m not crazy. I’m not making this up. I did not watch an episode of House and decide I had that disease. I am not a hypochondriac. I finally have validation and I am FINALLY able to do something about this instead of sit idly by while my body deteriorates. Although I can’t use my hands the way I used to I still work at the same woodshop only now I’m designing the furniture instead of building it. I still get to be creative and make things; the process is just different. I’m trying to come to terms with the idea that this is my body now and there isn’t a magical fix that will bring my old life back, and that’s hard. This is an unfair disease and the diagnostic process is unbelievably difficult but I’m happy I made it through and can now move forward with my life.

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

My name is Brittany and I am 25 years old. I was diagnosed with RA when I was 19 years old so have been dealing with this disease for 6 years now. Wow! Has it really been that long?

For as long as I can remember, I have been playing softball for our town league in the summers. My dad was the president so my two sisters and I had always played and helped out around the park. My senior year in high school, last year in the league, I noticed one practice that I could not straighten my arm out. My elbow felt like it was stuck. So we tried hot pads, stretches, and anything else we could think of, but just figured it was some sort of injury that would heal itself.

The next year I went away to college, to Western Illinois University, and my elbow was still “stuck”. My primary doctor figured it was a sports injury as well and put me in physical therapy down at school. They tried the usual things you do in therapy as well as electric shock and nothing would straighten out my elbow. In December, my freshman year, I woke up one morning and my ankle and knee were swollen so bad that I could not walk to class. I ended up trying to get there and thinking “What is going on? Could it be because it is snowing?” Well the swelling kept up for a couple of weeks so I went home and made an appointment with a specialty doctor. He sent me for tons of blood tests and an MRI. When I went in for my follow appointment, he told me the lovely news of having RA. I did not know that much about the disease, but knew a little bit because my great aunt is completely deformed from the same thing. Needless to say I was very scared!!

The first rheumatologist told me that I would be in a wheelchair by the time I was 30. She was not very patient-friendly, so I immediately switched doctors. They started me on prednisone and a cortisone shot that immediately straightened out my “crooked” elbow. I was also was put on 6 pills of methotrexate because my father had just passed away and that was all I could afford

Currently, I have again switched doctors and she first started me out on the Simponi shot along with my mtx. That injection was not doing anything for me and I had actually gotten worse. The last few months have been the worst in regards to swelling and pain that I have felt since I was first diagnosed. So now I am on Enbrel along with my mtx and am hoping this is going to help. The joints that are most affected are my hands, knee, and ankle.

This week I went and got an RA ribbon tattooed on my foot. It is so meaningful and people ask me all the time what that ribbon stands for! So for all of you out there….I not only hold you in my heart, but symbolize us all with the ribbon on my foot!!! Gentle hugs to everyone!

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

My Mother got Rheumatoid Arthritis when she was about 47… and diagnosed at 50 and died at 56 from complications. She wasn’t walking on her last trip to the hospital and died that night. The only drug she took was Indocin, and her death certificate listed liver disease with complications from Rheumatoid Arthritis. That was in 1970. Gold injections had been offered two years prior and they wanted to sever the tendons in her hands so she could straighten them.

I turned 50 and then 60 and thought I had missed getting the disease. When my foot began hurting when I was 62, I thought it was something else. I saw 3 doctors, had blood tests and x-rays and nothing was found. The podiatrist wrapped my foot with tape three times and sent me home with an apology that he could find nothing wrong although he said he could see the swelling and redness. I walked it out and the pain was horrible. Red swollen and no diagnosis. The fatigue began around that time. It was extreme. Sometimes could not get to the downstairs for an hour. I cried for about 2 weeks wondering what was happening. I hurt everywhere, shoulders and one knee especially.  I began considering RA, and I was terrified because I saw what horrible conditions my Mother had and I couldn’t help her find relief. My disease is from her, and my daughter is at risk because of my RA. Mom was adopted so we don’t know how far back this went.

I went online and found a RA clinic about 65 miles away. I drove myself down and needed a referral.  I called my PCP for a referral while I stood at the information desk. My PCP office gave referral gladly and I was in. That clinic saved my life that day. They called it aggressive RA. They gave me a Med-Pak (steroids) and within TWO days the inflammation and fatigue felt as if they were gone and in 5 days I felt like a new person.  About 3 weeks later I took part in an RA study.  A University doing the research in the South found I was eligible and were seeing if a heavy beginning dosage of methotrexate, and Enbrel would halt the progression of aggressive RA instead of slowly upping the meds as the disease worsened.  For 2 years, I took 20 mg. of methotrexate once a week and an injection of Enbrel on the same day. At the end of the 2 year trial there was no swelling, the pain was minimal to none, and my numbers were good. Blood work every 4 weeks.

For the next 3 years I took just the methotrexate 20 mg, once a week and occasionally ibuprofen. The fatigue didn’t return.  Last year the inflammation returned and the disease was active again in both wrists and knees although the pain was not terrible. To avoid further joint damage, I am currently on the methotrexate and Enbrel combination again.  Blood work is good, liver, kidney, and thyroid function is good. I’m a survivor of cancer 12 years ago, and breast cancer 3 years ago, so keeping watch for lymphoma. Having the immune system suppressed is a bit of a worry, but so far I’m here with working fingers to write this story. I’m working again and not limited much except I don’t mow the lawn any more, 6 years post diagnosis.

No smoking, very little to none alcohol, limiting sugar, and tomato based sauces, spicy foods only in moderation help. Lower carb and higher in protein foods seem to do me well. Western Medicine is nearly limited to drugs and chemicals to alleviate disease symptoms. I am thinking that finding what foods your body likes has a great influence on the disease. The food pyramid isn’t for everyone. Homeopathic remedies, massage, swimming, yoga, diet, and cultivating happiness might be something worth exploring if you are not doing well. Worth a try and it can’t hurt along with your current treatment, especially for the younger women.

The downside of my disease is neuropathy in feet, with numbness along with heightened sensitivity.  Vertigo and dizziness is my worst complaint, and being unstable on uneven surfaces. I just painted my living room, buy and sell at auctions. Will travel to Europe again this fall if I can take my injections on the plane. So, even with RA life is good. Thanks for listening and I hope my story can help.  Susie M. (68 years)

 << Back to Onset Story main page.                                         Go to page 29 of Onset Stories. >>

Click here to read the 0 comment(s) on this post. Tweet it!

None of us want to feel weak or give up. How do we sometimes accept help without ever admitting defeat?

Yesterday, when I mentioned 10 Commandments of Chronic Illness, two men wrote comments with similar ideas:

• “I’m struggling with accepting how the pain has changed me and just admitting this will be with me forever no matter how hard I try to wish it away.”
• “In my mind, I’m still Superman… I have kids. How do I accept limitations, or ask for accommodations? I’m teaching them that I am no victim. Life what it is and to a great degree what we make it… I still have a hard time reconciling it all… Be well…”

What is the balance between being your superman-best and accepting needed help? Important questions!

First of all, our perseverance shows our strength

1. The starting point is realizing that people with RA disease are not people who stop certain activities because they gave up on life. They have a disease that can restrict or alter abilities against their will – either temporarily or permanently. Yet every person I know with RA tries their hardest to do as much as possible. If the invisibility of RA says “Lazy,” then RA is a “Liar.”

2. If you know people with RA, you also know that they tend to push their limits. They often suffer privately for the way they push themselves publicly, either daily at work or to be involved in special events with those they love. This shows they are strong, not weak.

3. If disease activity lessens or a treatment begins working, people with RA do more, OF COURSE. Anyone who thinks people with RA just need to try harder, complain less, or take anti-depressants to get over it has not been paying attention. When symptoms lessen, people go back to the activities they love.

“Limitations” or “accommodations” are not admitting defeat

This weekend, we saw a man carried up stairs in a crowded restaurant while his electric chair was carried separately. The same man adapts to go skiing and perform other sports competitively. Limitations and accommodations are part of his reality in certain situations. Yet, being a victim is not.

Another friend of mine earned her PhD dragging herself across campus on crutches. At first glance some might think her life appears limited by certain things that seem difficult. Yet her achievements surpass the rest of us in many ways because she has not been defeated by RA.

Examples from your lives could keep me going all day. To me and others who really know you, you are Superman, too.

If you love the way Superman steps up to save the world, you know there are times he needs his friends to save him from Kryptonite first. But Superman never ceases being Superman. And the moment the Kryptonite is removed, he flies free.

Recommended reading

• When Should People Living with Rheumatoid Disease Use a Wheelchair?
• What Causes Rheumatoid Arthritis Disease to Trigger?
• What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
•  Severe Rheumatoid Arthritis Can Leave You Stuck in Orbit

Click here to read the 16 comment(s) on this post. Tweet it!

One by one, I’ve had to put down things I’d rather have continued. I remember the moment when I could no longer quilt. Or knit. And the last piece of furniture I refinished, my rocker. My shoulders were bad at times, but my hands only ached. With medication and rest breaks, I pushed through it. It’s hard to tell you how glad I was to be able to get that done. Every other thing was set aside so I could accomplish it.

That’s the same way it was with the ACR meeting last fall. Emails, laundry, and other balls just dropped and rolled. More than the (extreme) physical difficulty, I just could not keep other balls in the air. It’s like RA itself takes the place of several balls, reducing my capacity. Or maybe RA just ties one of my arms behind my back so juggling is a bit of a joke. Probably both – RA is such a damn bully.

Sometimes it seems more like dodge ball than juggling. My son’s swollen finger, my several-months-long bladder infection, and countless other things like the avalanche of medical bills are obviously unwelcome balls flying into my circus ring. Then there are the balls that are very WELCOME like opportunities to speak or write about RA, letters I long to answer, friends I want to talk with.

Honestly, last week just adding the flu was enough to make me fumble every single ball. (Hear crickets chirping here on the blog?) But it was Bear’s birthday and I somehow helped Katie Beth to make cake and wrap presents. Thank God for Amazon.com! This week is Tiger’s birthday and we’re doing it all again!

Yes. I miss being able to juggle a dozen balls and wink while doing it. But this is my life right now. It’s infuriating to have a disease that never takes a day off – coming up on 6 years now with no break in flare. Maybe I’ll always grieve the things I can’t do. But I’ll also tell you that the little victories are extremely sweet. Whether laundry folded or a little blog post – or making one of my kids smile – I’ll savor any accomplishment!

Maybe I’ll always feel a little guilty about all of the balls lying around on the floor like deadlines I miss, my House Not-so-beautiful, food that spoils in the fridge because I bought it hoping I could cook it yet couldn’t. However, I will grow in grace and let God teach me more about mercy. No matter how much we think we’ve grown, our hearts can always be expanded.

Postblog: Please watch this video and think about attending G5 in March! You’re invited!

Recommended reading

• 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me
• The Rheumatoid Arthritis Warrior’s RA
• What is a Rheumatoid Arthritis Flare?

Click here to read the 27 comment(s) on this post. Tweet it!

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!

<< Back to Onset Story main page.                                          Go to page 24 of Onset Stories. >>

Click here to read the 1 comment(s) on this post. Tweet it!

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.                                         Go to page 25 of Onset Stories. >>

Click here to read the 0 comment(s) on this post. Tweet it!

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?

Click here to read the 4 comment(s) on this post. Tweet it!

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. >>

Click here to read the 5 comment(s) on this post. Tweet it!