Your Rheumatoid Arthritis Onset Stories, page 20

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Kathy’s Rheumatoid Arthritis story
Jacqueline’s Rheumatoid Arthritis story
Angie’s Rheumatoid Arthritis story
Molly’s Rheumatoid Arthritis story

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

Kathy's dogI am a nurse and work with doctors all the time, but no one guessed I had RA. I certainly wasn’t aware of what it was or how it presented even after being a nurse for years. I worked in surgery so I know mostly surgeons.  When I went in for a checkup, no symptoms were present so my regular doctor never knew about it.

 My husband and I moved to Denver about eight years ago. We moved from our home to an apartment which was on the third floor. I found walking up and down the stairs exhausting.  I had worked all my life, but when I got to Denver I had no energy. People said it was the altitude and I thought that might be the case. I was fatigued and depressed and really had no idea why. I was like this for months. I thought I was depressed but I really didn’t know what was wrong.

I didn’t work for two years and then a situation caused me to go back. I did traveling nursing in short 1 or 2 week per month increments. It was very stressful fitting into new situations and meeting new people. I liked it, but I just worked and went back to my hotel and slept.  It happened one day very suddenly, I got some pain in my right hand and within minutes it was swollen, painful and hot. I thought I had overused my hand during work and took pain medicine and used ice on it. Well it didn’t go away, my wrist swelled up so I couldn’t use my hand. It eventually went away but then the swelling would go back and forth between my two wrists.

The surgeons thought I had carpal tunnel. I also had neck pain and shoulder pain at different times so I started seeing a chiropractor on a regular basis. This went on for quite a while and it came and went. I felt normal at times and then I’d get the swelling and in a few days it was gone. During this time my feet started hurting, mostly the left but the right also. Surgeons thought this was plantar fasciitis and started treating me with boots I wore at night to keep my feet flexed. My chiropractor mentioned to me he thought I had RA. I was shocked at this but went to see my regular doctor and told her what had been happening. She did a blood test and I had a high Rheumatoid factor. She immediately sent me to Denver Arthritis Clinic and they put me on Celebrex and Remicade within a couple of weeks all my swelling went away and it’s not come back. I get Remicade infusions every 8 weeks. I still have the fatigue and when I work out I get more muscle pain then I’ve ever had. I found a part time (day a week) job here in Denver which is perfect for me. My husband and I downsized everything in our lives so I could work less.

I have read about RA for the last two years and now I understand it. I still can’t believe how long it took for any health care professional to check me for it. It was a least 6 years from onset to diagnose. Reading the stories now I understand I was lucky it only took six years.

The worst thing is the fatigue which never seems to leave. Sometimes I feel almost normal but most of the time I am very tired. Others perception of RA is that if you’re not swollen or limping, you should be fine and that’s not the case. My husband is wonderful about it and I am lucky to have him.  He does all the chores I can’t do and helps with cooking and shopping. I feel very lucky that at least the painful swelling has gone and my feet are normal again. I couldn’t wear a normal shoe for a long time. I realize now that if I as a nurse with good health care and insurance couldn’t figure it out, how is anybody supposed too?  It’s one of the unseen diseases that’s just not on the radar. I never learned about RA in school and doctors didn’t suggest it to me. It must be very under diagnosed in our society. Also the fact it’s mostly women that have it. People tend to think that it’s emotional.  People don’t believe what they can’t see.

I hope this helps someone. I love all the stores here and find comfort in them. I want to start an RA group here in Denver.

I did want to add that years before I showed any symptoms I had some nodules on my toes that could not be diagnosed and eventually left. Those most of been rheumatoid nodules and they appeared years before the swelling. I added a picture of my dog who I love because she never tells me “You shouldn’t be tired.” Thanks for what you’re doing.

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

I am a secretary who worked at a C-shaped desk. I’ve had to make modifications to help me be able to work; one was getting rid of that desk!  I noticed in June of ’09, right after I turned 38, that the tendon in my right thumb was sore. Figured it was because I pushed off with my hand on my desk to get to the other side. I tried to stop pushing off desk. After a couple of weeks, I noticed that my left thumb was starting to hurt too, just in a little bit of a different spot. I thought nothing of it. By August, my ring fingers hurt and my pinkies. By November my knees hurt and my left elbow hurt to bend it and sleep on it at night.

We are military, so I made an appointment with my primary care doctor. I got the appointment for December 15th. He looked at my joints and diagnosed me with Fibromyalgia. He never touched me, or tested me for it, but documented that I had it. He ordered blood work and my C-reactive was 8 times higher than normal. He referred me to a rheumatologist and I was able to get the appointment with her in February ’10.

The diagnosis of fibromyalgia did not jive with me. I have friends who have fibromyalgia and I know it has to do with muscles, not joints. I started researching online and found Mayo Clinic.com. They have a symptom checker where you check all the symptoms that you have. After you input everything, it produces a list of possible diseases with the first one being what it more than likely is. It also gives you a list of other things it could be. The first thing for me was Rheumatoid Arthritis. I started researching RA and found that a lot of the symptoms of RA are what I have: symmetrical joint pain, worsening and not getting better. By the time I saw my rheumatologist, my hands, wrist, elbows, knees, ankles, and big toes were affected. This all progressed over nine months. Slowly.

There was no waking up not being able to walk. It was very gradual for me. At first I paid no attention to the pain I was feeling or how it was “moving” because it happened so slowly. Nine months is a long time to get worse and worse. By November I knew something wasn’t right because my body was not healing even though I changed the habits that I thought was causing the pain.

My rheumatologist checked me for fibromyalgia with the pressure test and found I did not have that. She said she thought it was more than likely RA. She took 18 vials of blood and started me on prednisone. When I went back two weeks later, all my blood work was great. My C-reactive was normal. I tested negative for Rheumatoid factor. My blood work showed no signs of inflammation. The prednisone helped tremendously, except that my right hand was still swollen. She did mention that I was the first patient she had ever had whose blood work came back showing no inflammation, yet she was looking at it and could feel it.

She decided to take me off the prednisone because she wanted an MRI of my hand and elbow (because the elbow hurt tremendously) and she wanted it not compromised by the prednisone. THAT was a tough two weeks. Freedom from jail, and now back in it and it felt worse! When I went back in two more weeks to find out results of MRI I was not very hopeful. When she said, “Again your blood work looks great and I am very glad we did the MRI…” I was figuring she was gonna say cause you are crazy and nothing is wrong with you. : ) No, that is not what she said. She said the MRI on my hand “already showed bone erosion.” She confirmed RA by the MRI.

I started back on prednisone and she put me on Methotrexate by mouth. The Methotrexate pills didn’t last long. The pain in my stomach from the pills was horrible! We then switched to shots. That lasted only a few months. The nausea got worse and worse and lasted longer and longer with no improvement to my symptoms. And I had horrible calf pain after starting shots that didn’t quit till a month after being off the shots! I have switched my biologic three times now, I started with Humira, then moved to Enbrel, and now I am on Cimzia. I am off all DMARDs because Arava (after Methotrexate) has made my hair fall out enough to where I am so vain I wear a wig. Granted it is a cute one, but still! : ) Have to wait at least three months before starting new DMARD because Arava stays in your system a while.

Last time I went in, it is obvious that I have bone growth now on knuckles that had bone erosion on them. Still in a lot of pain and my blood work STILL shows I am fine! THAT makes me feel crazy! My rheumatologist said in all her career she has only had two other patients whose RA acts like mine does. Blood work fine, meds not controlling RA, or meds work for a bit, then quit in a month. But she HAS seen it, and I am not crazy. That makes me feel better…sort of.  My rheumatologist said my RA is nowhere under control. After my three months of no DMARDs, I will get put on yet another one to see if is the “magic cocktail” I have heard so much about, but yet is allusive to me. I asked to be weaned off my prednisone after 9 months of being on it and having to start Actenol for osteoporosis. I deal with the daily pain with pain meds and the “usage” policy. : ) I go back on a regimen of prednisone for 8 days when I have a flare that I cannot “handle/take” anymore.

I appreciate RA Warrior because my rheumatologist thought that by last August I should not have been in any pain anymore and wondered why I was. After reading on RA Warrior I know that pain is typical with RA patients. I have mentioned this site to her and her nurse. My nurse is more responsive, my doctor not so much so. : ) I appreciate all that Kelly has put into and done with this site. I have learned a lot more about RA from this site than from my rheumatologist! : )

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

My name is Angie and I am 62 years old. I thought it important to share my story because unlike most of the other stories in this RA blog, my RA was “late” onset; I have only recently been diagnosed.

Looking back, I can now see the course of the RA although it was easy to dismiss the early symptoms; the stiff neck was a result of a poor pillow (I must have gone through dozens); the hip hurt from “overdoing” in the garden; the ankles were sore from being on the treadmill too long, etc. But in October 2010, the disease hit sudden & hard. I first noticed that something was wrong on a short road trip to visit my in-laws. Not only could I not sit comfortably because my rear end and legs ached so bad, but when we stopped, I was so stiff I could not straighten up to get out of the car. Then, in just a few days, the pain moved to my groin and pelvic area and became so intense that I couldn’t turn myself over in bed. Regardless, I still convinced myself that I must have done something while I was working outside and in a few days it would get better and go away. I waited another two weeks before I made an appt. to see the doctor.

The doctor first ordered blood tests and after finding my sedimentation rate elevated then ordered full body MRI’s, X-rays, colonoscopy, and more extensive blood work. I now know that due to the sudden onset, she suspected polymyalgia rheumatica (PMR). While waiting on lab results, she prescribed Vicodin to help me sleep at night and prescription strength ibuprofen during the day to reduce inflammation and pain. Finally, she prescribed prednisone; 40 mg over a 10 day period. Having read of the side effects of steroids, I was afraid of it and thought perhaps I could just “tough it out.” However, after one particularly painful night where I was unable to pull my body up in bed so that I could take a pain pill, I realized I had no choice; it was either the prednisone or a wheelchair. Compared to the almost dramatic and immediate relief, the side effects of the prednisone were minor; within 24 hours I could walk again! So after that course and while waiting for an available opening with the Rheumatologist, the Doctor prescribed an even heavier but tapered dose; beginning with 60 mg and ending two weeks later with 5 mg.

The Rheumatologist had thoroughly reviewed my file before the first visit, but still did a complete exam. He told me that he suspected PMR but due to my family history (my older sister had lupus and RA) as well as my past medical history of reflex sympathetic dystrophy he needed to do more tests before he could be sure. One month ago he announced the diagnosis of RA. I was stunned – I had not even considered such a thing – after all I was 62 years old and my hands were fine! Truthfully, if I had to have a diagnosis that explained everything, I was hoping it would be PMR since I knew it normally disappeared in two to three years as suddenly as it begins. I was in total denial. The doctor had to be wrong! So in an effort to prove it, I ordered copies of all the tests so I could research them and prove it.  Eventually I realized I couldn’t argue with the proof.

I began 15 mg Methotrexate one month ago along with a daily dose of folic acid to counter the side effects and am slowly being weaned off prednisone. I am currently in no major pain and am not sure if the overall weakness, extreme fatigue and swelling of the feet and ankles which I am now experiencing are side effects of the drug or just more RA symptoms. But I am extremely grateful that so far the disease has not yet progressed into my hands, although I understand it will happen eventually.

Right now I do not know what the RA holds for my future. I have slowly come to accept the diagnosis and admit that I am scared. However, I am grateful for each day, for my faith and for my wonderful, loving, and supportive husband. Even though I know there is no cure for this awful disease, I know its most powerful enemy is prayer.

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

I’m not going to start at the beginning of my RA onset, because it was not really the beginning. In December of 2009 I was hit from behind by a driver under the influence of drugs. I was removed from the car and taken to the local hospital because my back had seized. I had five fused discs in my back, an operation performed in 2001. Since then I have a very little problems with it until this accident. This began a nightmare I am still living. I suffered from back pain and a trapped sciatic nerve for about 6 months and then the symptoms eased for a few months. My orthopedic guy said I had two more discs that were herniated, but it was unclear if it was a direct result from the accident.

During this time I was working as a Pet Salon Manager for a large chain, and until this time had not had a day off sick in years. In fact, as a manager I had very little patience for sick people, as my own awesome immune system meant I never even got colds. Those that took pain killers were weak, just get up and get a job, were my motto.  I cringe now at my attitude!

Just when I thought I had dodged a bullet with the car accident, I started waking up in the mornings with a cricked neck. For about 10 years I had been very stiff and sore in the mornings, and my feet would sometimes not allow me to walk on them for an hour or so. I spent a fortune on shoes and insoles to no avail. Due to the very physical nature of my job I put these symptoms down to overdoing it and old age. I was in my early 40s. But the neck was inexplicable. I couldn’t pin it on a difficult dog, or wrenching it.  One day it hurt, and then the next would be fine. Then the knees joined the party. I couldn’t work out – what injury I had had to cause this sudden knee pain? I was also running to the dentist because of jaw pain, thinking that I had abscesses or something causing my jaws to hurt all the time. Then the same story with my shoulders and elbows. My hands had hurt for about 15 years and I had been told by my GP in England that I had ‘arthritis’ in them. Holding shears and clippers and gripping dogs would often be very painful and I compensated by using fairly unorthodox ways to hold my equipment, but I got the job done.

One evening while dining with my friend, who is 70 years old, she commented that I was ‘older’ than her, as she watched me struggle to put on a sweater. She insisted I go back to the orthopedic doctor to get checked out. I realized she was right, and this was ridiculous, considering I was only 45. On the paperwork the doctor asked me to fill out it very clearly stated that he would only treat one joint at a time, and asked me to state the problem. This caused a real quandary. I chose my neck. While the nurse was taking my vitals I explained that the neck was only one of my joints that were hurting.  This was the first time I heard the words RA. A few minutes later the doctor said the same word…RA.

I asked him what he was talking about, because for some reason the term RA had never passed my consciousness. He went on to explain about Rheumatoid Arthritis. Of course, like many of the uninitiated I only heard ‘arthritis’, so I was unconcerned and happily let them draw blood, give me a prescription for pain killers, and a referral to a Rheumatologist.  Two days later his phone call floored me. I had a really high RA factor, CRP and Sed Rate. Huh? I had no idea what he was talking about but he insisted on getting me an emergency appointment with my chosen Rheumy.

During the next two weeks I did some research on the web, and fought through my days at work. My hands were very hot and swollen, making it impossible to hold my shears. From being able to groom 10-12 dogs a day I was struggling in tears to do 5 or 6. The research scared me to death, but it also brought back memories from childhood….

Is it possible to wipe out great swaths of memory? My mother had died when I was in my early 20’s, and as she had managed my health as a small child, I had no one else to turn to. My father has always lived in his own little world, and when I called him, he only remembered that I was very ill as a small child and always out of school. My sister remembers all the other kids teasing me in the play ground because I had arthritis like an old person. This started opening the doors of my memory. I remember sitting in my doctor’s office while a lightning storm raged outside, and a horse and foal were killed by ball lightening as I watched. But I had wiped out the many more times I had sat there while my mother spoke about my fevers, swollen knees, stiffness and constant flu symptoms. The office of the specialist, with the bright yellow wallpaper and pretty pictures, came back to my mind, while being told I had Rheumatoid Arthritis. I remember he said it was different to what my Nana had but did the same thing to my joints. I remember my mother crying a lot, and explaining to me that running all the time was not good for my knees when they hurt. My sister and I had a make believe game where we played ‘horses.’ We galloped around like horses and jumped over my mother’s rose bushes. Many days, my horse was lame, because my knees hurt and I would be limping. I was always sick with a fever and home from school. Luckily I was pretty smart and managed to pass every year despite my absences.

Sometime during my early teens the fevers stopped, and the joint pain became less frequent. The ‘arthritis’ thing was forgotten and I became a normal teenager. After college, when I took over my own health care I would fill out the questionnaires at the doctor’s office by ticking the rheumatic fever box. I dimly remembered ‘rheuma…’ but RA wasn’t one of the questions. I had to have antibiotics before any dental work, but as I had spent my childhood taking pills I had no idea this was wrong.

After the birth of my 3rd child my back started hurting a lot and went into spasm a number of times. I was diagnosed with degenerative joint disease in my spine and herniated discs. I was riding a lot and put it down to the wear and tear of the sport. During my mid 30’s this became unbearable and finally I had a spinal fusion of 5 discs in my lower back. The specialist mentioned that I had a lot of arthritic damage to my spine. He also said my hands had arthritis too. I was running my own grooming business at the time and it was limiting the amount of dogs I could groom, so I hired another groomer and took over the business side while grooming only specialist dogs. Other symptoms were creeping in as well, very sore feet with large nodules on them, extreme fatigue and flu like symptoms. I went back to my GP who diagnosed me with Chronic Fatigue Syndrome. The pain continued but I just got on with it the best I could.

In 2003 the pain mostly disappeared again. I attributed it to finding my soul mate and mind over matter. My feet still hurt and I had to be careful how much walking and standing I did, and my hands struggled with the demands of my job, but nothing I couldn’t handle. The flu symptoms and fatigue disappeared and I felt wonderful….then the car accident changed all that.

So a year has gone by since my 2nd Diagnosis. I struggle every day with pain and fatigue, while taking medication to control this disease. The damage from years of uncontrolled RA can’t be fixed but at least I have a chance of preventing further destruction. It has been a long road from diagnosis to acceptance but I am getting there.

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