Your Rheumatoid Arthritis Onset Stories, page 29

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Bruce’s Rheumatoid Arthritis story
Sandra’s Rheumatoid Arthritis story
Jan’s Rheumatoid Arthritis story

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

When I was 5 years old I was diagnosed with Rheumatic fever: high fever, couldn’t walk, had swollen joints and spent 2 wks in the hospital! After that it had left me with a heart murmur, but as I grew into my early teens I’d outgrown it; I guess staying active and playing sports really helped! Had my sickness in childhood, because as I became a young adult I was the most fit in my family, took after my mom by not smoking and eating good, played sports, went into the Navy at 23; did 6 years.

Up until I was 45 years, I still played softball; that’s when I tore my Achilles tendon. Shortly after that I started experiencing physical problems, my neck and back hurt and I had weakness in my hands and arms, tremor in my right hand/arm! A doctor told me I might have Parkinson’s, but that was negative. Had MRI of back/neck, showed I had spondylosis of cervical, thoracic & lumbar. I would get fatigued and muscle pain, then my hand would tremor.

Though I had a bone scan too, they told me all the arthritis in my multiple joints was minor and I had no vertebrae pinching nerves. So I even had one doctor tell me I probably had a bipolar problem that’s why I had a tremor, even though I had told them I got a tremor after I would use my hands & arms a lot lifting or physical work. This all went on 8 years ago. A doctor had given me Lithium, which made my hand shake more, so I left him and went to neurologist, he had brain scan done, that was normal. He took me off Lithium and after more test said at times my neck may be pushing on nerve roots. I went to a rheumatologist finally and she did blood panel and check my Rheumatoid factor, C – reactive protein, Sed Rate, but nothing showed. I went on seeing her and despite my mother having 2 autoimmune Diseases ( RA and Myasthenia Gravis ) and all my joint pain, morning stiffness, fatigue and having her take 3 tubes of fluid out of my left knee, she still didn’t want to diagnose me with RA.

But last summer after being hospitalized with Pericarditis and having an MRI on my right hip due to pain in it, sent me back to her. After she heard why I was in the hospital, she then tells me there was a new test her lab could send out, it was the Anti-Mutated Citrullinated Vimentin (anti-MCV). I had this test last Sept. 2010, and was finally diagnosed Jan. 2011 with RA. I am on methotrexate pills along with 6 NSAID pills per day. So after 8 years of doctors & tests, I finally get my diagnosis!

Too bad  I’m already having damages done. Don’t know why doctors don’t go with your symptoms and family genes more; I have autoimmune diseases all in my family – mom has Myasthenia Gravis, her mom died of Tuberculosis, my great aunt died of Lou Gehrig’s disease, I lost a little sister to Leukemia and my brother has Spina Bifida. Last year, I had to have that sore right hip replaced, after I tried physical therapy; x-rays had showed some arthritis, it got so bad I could hardly walk on it. Went to my orthopedic surgeon that I had seen for it before, he & I decided that it was too painful and not functioning well enough, so had it removed. I’m walking without my cane now, but I do get pain in that leg muscle, tendons. I’m driving again, at least short trips, hurts my back and I stiffen up if I sit too long!

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

It took a while to discover the correct diagnosis for why I had been feeling badly with malaise, body aches, fatigue, cognitive difficulties, depression, and anxiety. I had several early indications of rheumatoid disease, but they became obvious only in hindsight.

The first was minor. Occasionally, I would have difficulty pouring tea or emptying a teakettle or pot. My wrist would feel weak and weird. So I would put the pot down and I would think to myself, “There’s something wrong there. One of these days I will have to get it checked out.” I chuckled at the non-specificity and transience of the symptom. Either I’d be brushed off, since it was intermittent, or I’d have to get images, etc., which would take time and probably be inconclusive. File that for another day.

The second was awakening with stiff and tingling wrists and hands most mornings. I attributed it to overuse, and thought it weird that both wrists hurt, even though I use my dominant right hand much more than my left. I’d been treated for carpal tunnel syndrome years ago, and thought I should try sleeping with braces, since it helped before. I also thought it might be neuropathy. My endocrinologist said that sometimes happens.

The third indication was even less specific, an area of stiffness and discomfort on the bottom outside of my right ankle. Although I remember turning my ankle months previously, it seemed to be fine at the time. Yet, the discomfort of the ankle was getting slowly worse, not better. At that time, I had no idea that RA could cause ankle inflammation leading to tendon injury. Again, it was something I was going to have to get checked out, one of these days.

Then last August I had a severe allergic reaction, followed by a respiratory infection. Since I have asthma and pulmonary hypertension, I was not surprised when I was out of commission. I took care of myself, stayed home from work, and took the antibiotic the doctor prescribed. A few days later, my Achilles tendon was alarmingly tight. Since one of the possible antibiotic side effects was tendon rupture, I immediately saw a doctor, who changed the antibiotic just in case, and referred me to a podiatrist. He diagnosed plantar fasciitis, and gave me a splint to wear at night.

When my respiratory infection went away, I still felt lousy. I had enough experience to take it easy, but I was not bouncing back. I had been treated for depression in the past, and thought it had returned. I just could not get going. Everything was more of an effort than it should be, and I hurt all over. I’d seen the commercials about “depression hurts,” so I attributed it to that. My psychiatrist changed and increased my antidepressants and I stayed out of work.

The night splint took care of the plantar fasciitis, but my ankle had gotten worse. When conservative measures did not work, I was scheduled for surgery to repair tendon damage. Although I was not looking forward to it, at least it would give me some time to pull myself together. I still hurt, and I was still tired, and I was not well. (Later, I learned the term malaise—an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness.)

After foot surgery, my left knee hurt, but I thought it was because of the additional stress from not using my right leg. When my right knee swelled, I thought it was bursitis, and just moved the icepack from my ankle to my knee. I knew I had wear and tear on my joints. I tried to address the persistent pain, so I became diligent about cycling rest and activities, and exercising, but not too much. Last fall, I told both my psychiatrist and internist about the problems I was having, and then made an appointment with a rheumatologist. When the time came, I almost cancelled the rheumatology appointment, because I thought that I would be told that I had osteoarthritis and fibromyalgia, and I’d have wasted my time and the doctor’s.

The rheumatologist listened to my complaints of increasing pain and difficulty. He examined my muscles and joints. He thought I might have Lyme disease, and sent me for blood tests—seven vials! The initial Lyme test came back positive, so I started antibiotics. I was pleased, because although it is a difficult infection, Lyme usually responds to antibiotic therapy. When I returned to the doctor a month later, he told me that the more specific Lyme test had been run twice, and both results were negative, so I should stop the antibiotic. However, he wanted me to have another test rerun again in a different lab—anti-CCP. My initial test was a strong positive result at 60, and the second test came back even higher at 67. Later that week, the rheumatologist called to tell me I had Rheumatoid Arthritis.

At that point, I knew very little about rheumatoid disease, but I knew it was not good. I felt better, though, knowing there was a medical reason for my symptoms, and they were not all in my head.

On the internet, I found an article on Rheumatoid Arthritis Clinical Presentation by Alan K. Matsumoto, M.D. at The Johns Hopkins Arthritis Center: “The typical case of rheumatoid arthritis begins insidiously, with the slow development of signs and symptoms over weeks to months. Often the patient first notices stiffness in one or more joints, usually accompanied by pain on movement and by tenderness in the joint… Nonspecific systemic symptoms primarily fatigue, malaise, and depression, may commonly precede other symptoms of the disease by weeks to months. Patients complain of severe fatigue 4 to 6 hours after wakening.”

Finding this information made me feel validated (read: not crazy). Reading RA Warrior has the same effect. I love the analogy of the spear actually being a pen. With hair color and sunscreen, I am putting it off as long as I can, but I, too, aspire to be like an elephant eventually—grey and wrinkled.

My sincere thanks.

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

I am writing this just before the one year anniversary of my diagnosis. WHOOPEE! My story begins with ongoing pain in my neck which was causing numbness in my forearm and fingers. After seeing a nurse practitioner with no response I then traveled to the chiropractor. After a few sessions with him I began to feel worse. I started to have swelling in the wrists, fingers, ankles and knees. He suggested I see my family doctor to have blood work done. He was correct in assuming I had RA

All of the tests came back positive, so off to the rheumatologist I went. The first plan of attack was Nabumetone and a very low dose of prednisone, which did seem to relieve some swelling. The only problem with this treatment was I reacted to prednisone with most of the side effects. Next in line was Plaquenil, this drug was the best, in a few weeks I had no flares and my energy was gaining.

Within a few months I ended up in the ER with them checking for heart troubles, (after all the testing there is, I’m pleased to report no heart issues). Turns out I am severely allergic to Plaquenil, which my rheumy and GP had never heard off. My GP had to put me on Zoloft and clonazepam to counter act the terrible side effects. During this time my swelling returned and the fatigue worsened. I am now on 10mg of methotrexate a week and folic acid daily. So far so good other than my thinning hair that is. I feel lucky my RA is not the worst, but boy do I not wish this on anyone. As I tell my family, every day is a new experience!! Thank you for the web site, I have learned so much from reading all the stories. I will be interested to see if anyone has had the complications with medications that I have.

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2 thoughts on “Your Rheumatoid Arthritis Onset Stories, page 29

  • August 2, 2012 at 9:06 am
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    My journey began 2 and 1/2 years ago right after my marriage to my husband. What began as a sore and tender elbow joint after moving into my husbands house. I attributed to too much lifting and packing. I had seen an orthopedic who then gave me several injections in my right arm of steroidal medication over several months. Soon after the pain moved to my left arm and now I could barely wash my hair, lift a tea pot, or paint my lifes passion. my next visit was to a neurologist who insisted I had fybromylagia. Ha! I thought , he thinks its in my head! Of course I was depressed, because Now it seems to be spreading to my knees and shoulders, hands , fingers affecting my painting. I insisted on a referral to a rheum after researching on the internet my symptoms. My rheumy ordered blood work for Lyme disease and RA. All negative I was told. Thats when the tears came and total frustration . Concurrantly, my Dad was having similar issues which we discussed and his Dr. said it was zero negative RA?!? Gee, what is that? Back to my rheumy again and frustrated , I mention this to her. She then finally orders a bone scan and finds I am lit up like a Xmas tree and affected in all joints. We begin immediately a cocktail of Cymbalta, Humira, Folic acid and a pain clinic. Recently it has affected my feet as well. Did I mention I used to dance and work out feverishly? All of that is impossible now, however I do walk our dog Quixie and suffer after, and use an elliptical trainer 2-3 times a week depending how I am feeling , just to keep moving and Not give up or in. Unfortunately, the Humira did not work . Currently my cocktail is Embrel, Folic acid, Methotrexate ,Tizanidine and fetanyl patch for pain. Good news , I am painting again and preparing for an exhibition in September. I can’t paint for long and do need to rest often.My day does go South after 5-6 hours, but my attitude and appreciation for life has changed. I am Now living in the Moment, and like Kelly not taking life for granted. My best days are usually a couple of days after my injection and I do use those days to get most things accomplished. I have also learned how to simplify my life by organizing better. I order groceries from pea pod so i don’t need to lift or shop. Sometimes it is in the small changes.
    So true btw, that No one understands this disease and think it is arthritis. I applaud you Kelly for helping the public to better understand RA , and giving us a venue to learn and share. Thank You, Glynnis

    Reply
    • August 2, 2012 at 12:11 pm
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      Thank you for the awesome comments Glynnis. Whenever you have time, we’d love to have the story submitted & post it on a page with the rest. If you ever feel like it. Click the onset story link at the top of the page. Good luck to you.

      Reply

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