Your Rheumatoid Arthritis Onset Stories, page 33 | Rheumatoid Arthritis Warrior

Your Rheumatoid Arthritis Onset Stories, page 33

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Stephanie’s Rheumatoid Arthritis story
Janine’s Rheumatoid Arthritis story
Leslie’s Psoriatic Arthritis story

This Stephanie’s onset of Rheumatoid Disease story in her own words.

Stephanie's RA storyI was born in 1982. Ever since then, I have been the type to get sick a lot. General fatigue, colds, stomach bugs, asthma and various other issues have been a huge part of my life. Despite this, I have always been pretty active. I grew up hiking, skiing, and snowboarding. I started playing soccer when I was about 10 years old and continued to play into middle school until I began cheerleading. In high school, I attempted to play soccer again, but pain in my ankles was too much too bear. I stopped playing soccer and decided to start weight lifting.

In high school, I got very sick. Everything upset my stomach and I lost 30 pounds in one month. I went through a series of tests and a blood test finally determined I have celiac disease. After this autoimmune disorder was diagnosed, I have continued to live my life gluten free, with the exception of some slip ups, which are definitely not helpful. I learn from my mistakes and try my best to eat a healthy diet.

Also in high school, my toes began to hurt, feel stiff and I would have to pop them to relieve the tightness and sharp pain. I went to a doctor who said I had tendonitis and put me on an anti-inflammatory. The issue with my toes continued but the pain decreased and was almost unnoticeable for several years. In college, I continued lifting weights often. I also picked up running and for quite a while I ran 4 miles a day 4-6 days a week. I was in great shape. Knee pain was there, but it was bearable and could be cured with a little ibuprofen and ice.

I finished college and began teaching. I have now been teaching high school English for almost five years. I love it. I’ve remained active and love the gym and did love running…up until about 8 months ago. In March of 2011, at 29 years old, I enjoyed my spring break with friends. I had a great time, until I returned home with a horrible cold, cough and asthma. I went to the doctor who put me on antibiotics and prednisone. It helped a little but I still got worse. I went to the ER one night because I couldn’t breathe and it felt like someone was sitting on my chest. I had an X-ray done and they said I was fine and gave me a breathing treatment, which helped a little. I went to the doctor again a few days later and they said I had asthma and gave me a new Albuterol inhaler, Singulair and Symbicort.

I told the doctor that I was having severe pain in my chest, not just tightness, but sharp, stabbing pains in my lungs on both sides. It hurt to move and to breathe. He said it could be pleurisy (inflammation of the lining of the cavity surrounding the lungs) from the chest infection and that I just needed to rest. I continued with the asthma medications and also started Albuterol breathing treatments three times a day. I was in bed for almost two months. I also lost my voice and it hurt even to whisper. Teaching was barely manageable. I suffered to make it through each day just to come home and crawl into bed. I couldn’t do anything else. My mom was there for me and helped me so much. Without her, I don’t know what I would have done.

After two months I got better, but the lung pain took another several months to completely subside. I feel like this was the first major part of my arthritis onset. In May, I wore heels to a dinner to celebrate our graduating seniors. Afterwards, my toes and feet were in so much pain I could hardly drive. It was a sharp, stabbing pain, somewhat similar to the pain in my lungs. I started to notice that my wrists and fingers would have the same type of pain every now and then, but nothing compared to the pain in my feet. I was picking up exercising again and my feet were not happy. I went to a podiatrist who said I had inflammation in my toes. He gave me Naproxen and some inserts that did nothing but hurt my feet. I went to another podiatrist who is still trying to fix my inserts but he decided to run some blood tests and send me to a rheumatologist due to my symptoms. The pain in my feet was on both sides, all over my feet, I was stiff in the mornings and at night, and my toes felt tingly.

The rheumatologist has been amazing. She suspected lupus or rheumatoid arthritis but the blood work has not shown either one. However, blood tests do not always prove positive for rheumatoid arthritis. She said I have synovitis and may have rheumatoid arthritis. The doctor put me on Plaquenil and Mobic. She also prescribed me with the injectable Methotrexate which made me extremely nauseous and generally ill feeling, so I discontinued. As of November of 2011, the Plaquenil and Mobic have helped. I don’t wake up at night with severe pain anymore. The pain is better and much more manageable but it’s still there. I also have more pain in my fingers, wrists and knees at times. I am fatigued most of the time but I fight through it and put forth my best effort every day.

I still can’t run or even bike, but I can lift weights and have considered picking up swimming even though I’m not very good at it. I am also about to start doing more Yoga and Pilates to try and stay healthy. It is difficult but I try to stay positive and I know that it could be worse. I am living with the hand that I have been dealt and want to make the best of what I have. The stories on this site are wonderful and it is comforting to know that there are other people out there who know how this feels. I wish the best for each and every one of you and hopefully there will be better treatments for this in the future.

This Janine’s onset of Rheumatoid Disease story in her own words.

Since about age 15, I’ve had pain in various joints, but mostly my ankles, knees, wrists and shoulders. The pain has always felt like a deep, insistent ache that would sometimes get sharper. The pain started moving into my fingers and wrists a few years ago; and after a day of writing on the computer, it would be particularly bad. I am now 41. Mostly, it’s not debilitating and I can live with it, but I have to take painkillers; and I normally treat with anti-inflammatory creams.

A few years ago I started getting stiff in my ankles in the morning and my heels were often painful when I walked. I was also stiff in my knees after sitting for a long time. About nine weeks ago I went through a very stressful period and then woke up one morning with severe pain in my one knee.

The doctor gave me a cortisone shot but once that wore off, the pain came back and also went into my other knee, both elbows, both wrists and both ankles. My knees and ankles also swelled up. The pain was dull and aching all the time, and if I moved any joint I would experience a sharp pain that took my breath away. I could not move and my husband had to help me turn over in bed, get up and down from the couch and even just walk as I could not put weight on my knees.

My chest also ached in the middle part and I had a constant dry, wheezing cough, hurting when I took a deep breath. I could not lie on my side or stomach without feeling a crushing ache in my chest.

If I laughed or breathed deeply, I would start to cough. X-ray showed slight inflammation in the right lung and flow test showed collapse in the mid lung. Doc sent me for blood tests and I tested positive for RA (only just with a count of 20.9). I was put on cortisone for a week and now take folic acid and 10 mg Methotrexate once per week, as well as using a cortisone inhaler for my chest. I have been on the Methotrexate for seven weeks now. I have not had severe side effects with Methotrexate, but sometimes have slight nausea and achiness, or a mildly upset stomach. Lately I forget things like people’s names or places.

Some days, like today, I wake up with deep aching pain in my joints. Today it’s in the tendons around my ankles, my one knee and my one hand. My right wrist has swollen up and the pain is radiating from my wrist into my fingers. My cough is clearing up but my chest still hurts a little and I feel short of breath. When I stretch, it makes a popping sound. My knees and my shoulders also pop. I also find that I get tired easily. However, most days, I feel fine and surrealistically wonder if I really do have RA.

The doctor said although my test results were positive, it was not a confirmed diagnosis and that they diagnosed RA because of the clinical symptoms combined with the blood test result. He said because I responded well with the pain and stiffness going away on Methotrexate, it confirmed RA. He has now referred me to a rheumatologist because he is concerned about my chest, but that seems to be clearing up anyway. The morning stiffness is still there, but it only lasts about a minute.

I would like to know from others if it’s normal to still feel aches in your joints if you’ve been on Methotrexate for seven weeks already? Can you have a flare up even if you are on Methotrexate? I also want to know if anyone has had similar onset? When I read, I find that most people have severe RA and my complaints and aches seem practically insignificant in comparison. I sincerely feel for everyone who is affected by this condition.

This Leslie’s onset of Rheumatoid Disease story in her own words.

My aches and pains started shortly after the birth of my 3rd child at the young age of 38 (LOL). I went back to work as a respiratory practitioner on April Fool’s Day after her birth in December. I started noticing something was wrong when my feet hurt even after a routine day of activity but it became obvious to me and my coworkers when even after sitting for five minutes and trying to stand up I looked like an “old lady” all hunched over and limping because both hips hurt so bad.

I would tell them “I’ll be ok in a few minutes once I get straightened up”. This along with several hours in the morning of needing to take it easy while my body woke up caused me to seek out a rheumatologist. Fall 1999 was when I was diagnosed with UCTD, which over the course of 5 years changed to a diagnosis of sero-negative RA. I started out on prednisone and methotrexate, Plaquenil, naproxen and Humira eventually changing to Orencia then Rituxan.

The last decade of my life has been the epitome of that “old lady” who couldn’t get out of the chair as various other auto-immune disorders showed up…microcolitis, thyroid disorder requiring removal, gall bladder stones requiring removal, absence of IGG and other immunoglobulins low, kidney insufficiency, severe peripheral neuropathy. I’m sure there is other stuff but brain fog keeps me from remembering it all.

I’ve never been in remission. Seems like in the last 10 years I’ve spent at least 2-3 weeks in the hospital every year whether it is for illness or surgery to fix something that RA or its medications has created.  The pain is constant although not consistently intolerable. I tried all the non-medicinal procedures to alleviate the pain but to no avail…having both neuropathic pain and pain from the RA was too much to overcome. So now I have to take narcotics (no driving) to get relief. I had to take medical disability from my job, one which I truly enjoyed doing. There have been a lot of life-changing decisions that have had to be made over the last couple of years in order to regain some quality of life, living with RA.

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One thought on “Your Rheumatoid Arthritis Onset Stories, page 33

  • January 6, 2013 at 6:42 pm

    I have been tested for RA and the test show I have it. My age is 59, but I have always felt younger until recently. I have had this now for 3 months the Dr. put me on Hydroxychloroquine 200 mi times 2. After two months she added Sulfasalazine 500 mi wanted me to take two a day but I can only handle one along with the other drug. Both have helped some. I am a artist and the sad thing is I still cannot do much art it makes it flare up in my hands. I also show signs of it on both feet. the pain is mostly in my hands and back in the morning. I don’t feel like myself at all any more. The Dr. wants to change me to the Methotrexate but I have been afraid to do it I get sick to my stomach very easy.


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