Your Rheumatoid Arthritis Onset Stories, page 31 | Rheumatoid Arthritis Warrior

Your Rheumatoid Arthritis Onset Stories, page 31

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Crystal’s Rheumatoid Arthritis story
Mary Jo’s Rheumatoid Arthritis story
Donna’s Rheumatoid Arthritis story

This is Crystal’s onset of Rheumatoid Disease story, in her own words.

Crystal's storyI started getting migraines back when I was 7 years old. I also remember as a teenager, many times my jaw would lock shut.  It wouldn’t even open far enough to slide in a cracker. I didn’t think anything about it at all. I didn’t even know that jaw issues were a symptom until reading the stories. When I hit 30 is when I really noticed things going on. It started with my ankles. I learned to sleep with my feet hanging off of the end of the bed, sometimes without even realizing I was doing it.

The flare ups were on and off for about 5 years. Next, the wrists. I requested testing, blood and x-rays. I was told it was negative and I was “fine” again although it didn’t feel fine. This too slowly dulled to a quiet roar. One day I had a massive migraine, enough to send me to the ICC on our Navy base. I was told I had tension migraines and my blood pressure was high. It came back that I have hypothyroidism (underactive thyroid).

Next, the left hip…our dog had puppies and we had her blocked in with the puppies at the end of the hallway with a baby gate. I was always stepping over the baby gate to take care of momma and the puppies and our bedroom door was on that side of the hallway. Horrible pains. Eventually that pain too dulled down with a prescription of Mobic.

My wrists started acting up again… this time worse than before. I was getting carpal tunnel symptoms, burning, tingling, numbness and shooting pains… and was referred out to a hand specialist. Cortisone shots in both wrists. My tests once again came back negative and I did not have carpal tunnel. Aghhhh!

I thought I was going crazy, that I was having all of these issues and no diagnosis. I KNEW it was arthritis… deep down I knew. My joints hurt and cracked too much for it to be “fine.”

We were recently stationed out in California August 2010; my husband is in the Navy. I have a great GP and I knew if I needed something he would take care of me. I started having allergy problems in December and if I needed it, he would instantly change prescriptions.

In April EVERTHING started hurting. I went to my doctor for allergy problems and figured “Hey, while I am here, I’ll have him check out my hand.” I didn’t think it would matter though since the doctors usually blew it off and said everything was normal. My fingers were swollen, red and hot to the touch, couldn’t bend them and they hurt like crazy. He ran blood work right away. He checked me for gout, arthritis, lupus, and autoimmune diseases. My right knee, both thumbs, both index fingers, my pinkie fingers, my wrists and then the other knee, and my feet… and now my husband leaves for a seven month deployment.

While waiting the 2 weeks for the test results, that is when everything else flared up again… plus more. My fingers, wrists, hip, knees, feet and my shoulder. The results came back. Not lupus, not gout and the autoimmune disease was inconclusive. My GP referred me out to a Rheumatologist. I’ve never been so excited to go to a doctor in my life. My rheumy tested me for gout, RA, lupus, Valley Fever, Hepatitis. I was hoping for something simple but I knew I would get SOME sort of answer….FINALLY.

And I did…just as I had always suspected: arthritis and not just arthritis, RA. And I’m not crazy!! I am on my 4th week of prednisone 5mg, methotrexate 2.5mg, 1mg of folic acid and naproxen. The full pill of prednisone gives me a bad migraine so right now, I am breaking it in half. Besides that the only other side effect I get is a little heartburn… is it from the folic acid? Not sure. My next appointment is in a few days and I am sure they will increase the meds as the pain has increased since I last saw the dr 4 weeks ago.

My family and very close friends now know I have RA and I explained the disease and copied links and newsletters for them to read. They need to be educated. They all now ask questions and are very supportive.

I was getting a little depressed about all of this since being diagnosed, knowing this is a lifelong disease I am now going to have to battle. Waking up with a new pain everyday and going to bed with a different one. But when I look back I realize, this is something I have BEEN battling since I was a teenager. I can’t get rid of it but I can live with it. I am going to fight the weight gain from the prednisone. If I can get thru this, I can get thru anything. I have RA but it DOES NOT have me!

The following is Mary Jo’s onset of Rheumatoid Disease story in her own words.

Hello. My name is Mary Jo, I am 53 years old, and I reside in a rural area of central South Dakota. I was diagnosed with RA in March 2010. It was during a very stressful period of time as I was trying to complete a clinical semester of a nurse practitioner program, had been driving 120 mile round trips to my clinical site on icy roads in blizzard conditions, and had one of the worst upper respiratory infections I had ever experienced.

I’ve always had some stiffness and joint paint as was I getting older but osteoarthritis runs in my family, so I was not concerned. One Sunday evening, as I was sitting in my chair studying, my right wrist began to swell painfully until I had a large, soft lump on my wrist and could no longer flex or extend my fingers. After 24 hours had passed, the wrist swelling subsided, but moved to my right hip. About every 24 hours or so the pain and swelling would migrate to a new joint, rendering it useless.

In about a week, I had multiple swollen joints and could hardly function. After a trip to the physician for some prednisone I got the call that my blood work had come back indicating I was positive for RA. I have been to a rheumatology specialist and prescribed the usual medications without relief. I am unable to go off prednisone without flaring and I am pretty miserable by the time the next methotrexate injection is due.

This has been hard for me to deal with both physically and emotionally because I am no longer sure if I am able to complete the nurse practitioner program. I have worked so hard and I am so close to completion, but the painful handicaps make things so much more difficult in an already stressful environment. The medications mess with my mind and emotions. I am either ravenously hungry because of the prednisone or nauseated because of the methotrexate. I am exhausted and depressed. I worry that I will be a huge burden to my husband and no longer able to do the things we had planned for our retirement. I cry all the time, I no longer feel like myself………I just want it all to go away.

This is Donna’s onset of Rheumatoid Disease story, in her own words.

Just a few days after my 41st birthday I noticed unusual pain and swelling to my right index finger. Although I couldn’t recall an injury, I assumed that was the explanation for this pain. Over the next 3-4 weeks the symptoms worsened and progressed.

Soon I would wake with all fingers of both hands stiff and swollen; I would literally have to force my fingers into extension as they would be in a clawed position upon waking. My feet were so stiff and painful that walking was difficult. I had to walk flat-footed because bending my toes was excruciating. The radial aspects of my wrists were sore and stiff. I struggled to open doors, get dressed, even move the gear shifter in my car.

Being in the medical profession, I suspected RA but was in a bit of denial. But as the symptoms worsened and persisted, I could wait no longer. I bypassed my usual physician and got an appointment with a rheumatologist who ordered the appropriate tests. Within 2 months of my onset of symptoms, I was formally diagnosed with Rheumatoid Arthritis. This particular rheumy has his own infusion center and really pushed for me to start infusions. I began my own research and chose instead to start Enbrel. What a miracle! Within 2-3 weeks of my first injection I felt normal again. I did appreciate good control with only an occasional and transient exacerbation.

Problems with insurance forced me to go without the Enbrel for a period of time and soon the symptoms were back. Luckily I was able to resume the Enbrel after only a few weeks and made the decision to add methotrexate at that time.

My experience has brought much disappointment with the medical system with the exception of a physician that I consulted at the Mayo Clinic in Jacksonville, Fl. He was very honest and informative. The rheumy I originally consulted tried to mislead me about treatment options in order to have me come for infusion in his office which he could bill for. Had I not been able to advocate for myself, I would have consented for more aggressive, and at that time, unnecessary treatment. I now receive my prescriptions from my personal physician. He respects my knowledge of my condition and I basically tell him what I need and he gives it to me.

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2 thoughts on “Your Rheumatoid Arthritis Onset Stories, page 31

  • October 16, 2012 at 7:33 am

    My RA “onset” was sudden. I am a 56 year old man. Very active and energetic. I woke up about 6 months ago frozen and in pain like I have never experienced in my shoulders. When I finally got myself to the edge of the bed I found out both hips had the same pain and stiffness. I thought I had been bitten by a coral snake. Seriously, my mind was racing.
    In indescribable pain I got myself to my doctors office. Blood work was ordered and prescription Advil was ordered. Totally worthless.

    From here I was bounced around to specialistbut never a Rheumatologist.. The thought was my right knee was swollen and they thought it was the cause of the inflammation. White blood cell count was elevated. MRI was done on my knee and confirmed torn ACL and Meniscus. The knee was drained and no bacterial infection was found. Things were getting worse. My mobility was gone. My wife had to literally roll me around the house in the office chair. I had a bed pan as I could not get to the bathroom. I ended up in the emergency room. More Doctors. More blood test. Serious pain medication did, at least, relieve the unbearable pain.
    The orthopedic surgeon was impossible to see and would never return calls. He was “busy”. I went back to my GP and she wanted to give me Prednisone. She could not unless the surgeon OK’d it as I was scheduled for knee surgery. Days turned into weeks. My life was literally over. The surgeon did not call my GP either. She paged him and called his office repeatedly to no avail. She (My General Practitioner) called me one morning and said she felt I needed to see a Rheumotologist in San Antonio. She suspected a immune system related issue. Appointment was made and after yet another week of immobility and pain I got to see the Rheumy. He looked at my blood work and had me try and move. He said I had Polymyalgia and started me on 30mg of Prednisone. Within a few hours after the first dose I had relief. I gained back some of my mobility. More blood work was ordered and I had my 2nd visit within a week.
    On the second visit he announced I had RA and not Polymyalgia. Prednisone and Methotrexate was now my in my daily diet. I struggled with the side effects of both. The relief from the Prednisone far outweighed any and all side effects. The Methotrexate did not seem to do anything frankly for weeks. I maintained this regimen for 2 months and was started on a Prednisone tapering reduction. The Methotrexate was starting to work. I gained back mobility and strength.
    I am now on 17.5mg of Methotrexate a week and 7.5mg of Prednisone tapering to 5mg of Prednisone here in a few weeks.I can pick up my Grandsons and can take on physical work.
    My story is simple. Question the doctors. Question everything. Research your symptoms.And hold Doctors accountable. My experience with Doctors through all of this has been less than stellar. Ignorance, unprofessional staff and zero respect or care for the patient. I am still amazed at the ignorance surrounding RA within the medical community.
    My Rheumy is very informed and is accessible. He works with me to educate and truly listens. I feel he saved my life.
    I have a positive outlook for my future now.
    I feel for the folks who have inadequate diagnosis with RA.
    I have spoken with other RA patients in my small town and find most of them are on Prednisone and nothing else. Just amazing.

    • October 16, 2012 at 9:08 am

      Kent, very few people ever see this comment page – would it be ok if we posted your story with the other stories – there is always a need for more men’s stories for the male readers so thanks even more for posting yours.


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