Alison’s Rheumatoid Arthritis story
Katie’s Rheumatoid Arthritis story
Amanda’s Rheumatoid Arthritis story
Ginger’s Rheumatoid Arthritis story
This is Alison’s Rheumatoid Arthritis story, in her own words
2006 was a tough year, I was 34 years old. Early in the year my husband got moved from a very promising fast track at his company to a back room job. This affected both of us, since we worked for the same company. He started looking for another job, but could not find anything suitable in a reasonable traveling distance from our home. Eventually after much soul searching we sent our resumes to our sister company in another country.
In September I visited that company for work purposes and after an impromptu interview by the VP was told that jobs were available for both of us, if we chose to take them. Sitting alone in my hotel room, literally half way around the world on another continent my right hand started to feel a bit stiff and my rings would not go over my fingers. I didn’t pay this much heed, we had so many other things on our minds.
I went home and we decided to accept the jobs, at that stage we saw this as the only way to both keep working in our field, using our knowledge, training and years of experience while still keeping our family together and all sleeping in the same house every night. Our impending transfer within the group sparked a political nightmare for us at work, and the environment became openly hostile and unpleasant. Additionally we were packing up our lives, selling our dream home, relocating my mother to be closer to other family members and moving to a country we had never spent more than 3 weeks at a time visiting. My husband had never even seen the sister company. We were changing jobs, homes, countries and continents, all this with two small children! Leaving behind family, friends and culture. Literally a leap into the unknown!
By November my right hand was obviously swollen, the joints ached so I could not write, tie shoe laces or feed myself, I had hair loss, low grade fever and was as tired as the first trimester of pregnancy. My general practitioner diagnosed me with “arthritis”, said it was often triggered by stress, but once I accepted the move we were going through and talked about my fears it would all go away. I understood that I was being told it was psychosomatic, this was not a genuine disease! I was prescribed a single box of NSAID’s (no repeats) and told I needed to talk to my husband about all the emotional issues that were going on.
I had tried to establish from online diagnoses whether I had osteo or RA, but the lack of symmetry at the time led me to believe it was osteo, despite all the other obvious RA symptoms.
We moved to the United States in February 2007, and my agony continued. By now both hands, wrists and elbows were affected, and one shoulder, but this was all psychosomatic so I just kept plodding ahead. The first time I saw a PCP here I declared arthritis on the new patient forms and admitted I did not know which type. I was told, “Well, we’ll just assume it is osteo, that’s so much more common.” I visited my PCP a few times for sinus infections, and on each occasion reported how much better my arthritis felt with the prednisone I had received. Still no connection was made. Somewhere around December that year I realized how much less pain I was in, it was still there, but I had mostly resumed normal activities. The flare had lasted just over a year!
In February 2008 my sister’s lupus took a turn for the worse, affecting her brain. I knew there was a blood test for this, and wanted to know if this was in my future too. When the PCP phoned me at home at 7pm two days later I was terrified. My blood tests were positive for an autoimmune disease, he was making me an appointment with a rheumatologist but could not say whether I had lupus, the tests were inconclusive.
I saw the rheumatologist the next week, had a battery more blood tests and was finally diagnosed. My blood work still comes back inconclusive for lupus, and my symptoms perfectly fit RA, so we treat for RA and re-run blood work every year to check for lupus. Since the treatments are essentially the same, this works! Initially I was on Plaquenil, which worked well for the first 9 months or so, but now I have had methotrexate added since my knees have started to be affected too.
Looking back, there were many times when I had mild RA symptoms as a young adult, but they were generally of short duration, and never anything like the raging, burning, endless agony of a full blown RA flare. I regret not seeing a rheumatologist when the RA began, perhaps my year of agony could have been damped out, either in severity or duration, or both. In hindsight it seems stupid to have accorded my mind with so much power over my body to create so much pain, but it was an extremely stressful period with so much going on that it just seemed plausible at the time, and I had other things to worry about.
I have been fortunate to end up with a caring and compassionate Rheumatologist, who treated the disease based on the blood tests, even though there were no obviously inflamed joints at the time of his diagnosis.
This is Katie’s Rheumatoid Arthritis Story, in her own words
I wanted to tell my story because like many other RA’ers, I have 2 autoimmune diseases. Here is my story:
I am currently 29 years old…today in fact! Even thought I feel 80 years old most of the time It was 2 years ago, at the ripe young age of 27, that I noticed numbness and tingling in my arms and legs that was getting progressively worse. On top of the numbness, I was tired all the time and would get up in the morning with a stiff neck or shoulder, and brain fog. I really just kept telling myself it was because I just had a baby (although at that point he was almost 2 years old….mommy brain fog doesn’t last that long). But the numbness really scared me knowing that my mom has Multiple Sclerosis, I went to the doctor. They ran all the standard blood tests, which came back normal. So the Doc sent me to see a neurologist. The neurologist said I did not have MS (I was totally relived), but that he thought my vitamin B12 levels needed to be checked. Sure enough, my b12 levels were extremely low…he also ordered an intrinsic factor test which came back positive. What does this all mean? I was diagnosed with Pernicious Anemia, an autoimmune disease. What it does is prevent your body from absorbing vitamin B12 in your stomach (a very important vitamin I discovered). This disease if left untreated can cause permanent neurological damage. The treatment is weekly or monthly B12 injections. I also saw a physical therapist for the neck and shoulder aches, which they told me it was due to bad posture…hmmmm.
So I started my treatment of B12 injections. The problem then occurred that I was still chronically fatigued all the time. I started a new job last year in downtown Portland, which required quite a bit of walking commuting to work. My feet started really hurting and aching, so I changed shoes which didn’t help. Finally my doctor ordered x-rays for my feet. I had the x-rays done with normal results, and so I never went back to the doctor for that.
I kept talking to my doctor about it, thinking that my B12 treatment wasn’t working…although the numbness went away for the most part, the fatigue did not. It was to the point in July of 2009 when my doctor was about to order fatigue lab tests to try to figure out why the fatigue won’t go away, when BAM, I woke up on a Monday morning with all my joints on fire. My doctor said it could be viral arthritis and should go away. By Wednesday, I couldn’t walk my left knee was so swollen and inflamed I made my husband take me to urgent care. They did blood tests and x-rays on my knees and hands. The x-rays did not show damage, but the blood tests showed and elevated CRP, and elevated Rheumatoid factor. They still weren’t positive I had RA at this point, so my doctor consulted a rheumatologist who recommended a 6 day pack of prednisone. The prednisone worked within hours; at that point it was a miracle drug! However it worked so well, the rheumatologist wanted to meet me in person. So I scheduled an appointment, she inspected all my joints ran tests to make sure I didn’t have any other viruses that could cause RA-like symptoms (which came back negative)…that’s when she dropped the bomb shell that I had RA. I left her office, cried, and called my mom.
My mom has been a great support. She has MS and knows what having a chronic illness is all about, and survived ovarian cancer 8 years ago; she’s my hero! Although no one in my family has ever been Dx’d with RA…my family come to find out is pretty autoimmune disease-prone. My mom and her cousin both have MS; my mom’s cousin also has primary Sjorgren’s, my aunt and my grandma both have Thyroid disease.
I hope my story can help someone else understand and/or comprehend the vastness of Autoimmune diseases. It’s only been 6 months since my RA diagnosis, and I still haven’t quite fully come to terms with this illness, but I’m definitely working on it every day.
This is Amanda’s Rheumatoid Arthritis story, in her own words
November 2008 sitting in my office when a sudden onset of severe headache. Fortunately I work in a hospital and a MET call was placed by my colleagues. I was rushed to the Emergency Department where I was CT scanned and lumbar punctured. They were of course querying a sub-arachnoid haemorrhage. I was sent home that day and told it was probably stress. Two days later back at work happened again. This time I was admitted and after 5 days of sitting in the Emergency Department not able to have an MRI due to the machine broken I was sent home.
As an outpatient 2 weeks later I had an MRI. I did not hear from my Neurologist for the result and I contacted the Radiology Department to forward to my GP. The result showed MS plaques and ? vasculitis – a further MRA/MRV followed.
The final diagnosis was CNS Vasculitis. They ruled out MS as I did not have a second marker for diagnosis.
On my OPD visit to the Neurologist I advised him of my right elbow tenderness and he said it was probably nothing or ? RSI and that I should have a nerve conduction test. He did not feel it was related to the vasculitis. The rheumatologist agreed with him and sent me on my way with a referral to a physio who told me there was nothing she could do for me as it was “unusual set of symptoms”.
The pain continued in my elbow and then moved to the other elbow and I started having morning stiffness upon waking in my hands and my finger joints are sore. It wakes me at night. I no longer enjoy the weekend “sleep in” as it is too uncomfortable and I need to get up and move.
I was also referred to an immunologist as I had a previous autoimmune disease following a severe case of conjunctivitis – this lasted for close to 5 years with flare ups. The immunologist ordered hand, elbow, and wrist x rays which were all clear. The immunologist was not convinced with the neurologist/rheumatologist diagnosis of nerve entrapment. She tried me on Prednisone which is great when you are on it, but upon completing the course the pain came back. This, to her indicated that it was highly likely that there was something else going on. I was then commenced on Plaquenil the malaria drug which did not really make any difference. Next was Naproxsyn which created bad acidy reflux and no real relief.
In December 2009 I spoke with my Immunologist and advised that I was finding the chronic pain debilitating and getting much worse and that otherwise normally healthy this was not normal for me.
I now have the pain in both hands, fingers, elbows, ankles and right knee.
May I add that all my bloods have been negative?
Bone Scan in December revealed hot spots on the painful joints plus some other areas as well.
I was commenced on Methotrexate – at this stage only small dosage – my 5th dose tomorrow with follow-up bloods – I am assuming the dosage will increase as at this stage no result.
I am relieved that I now have a diagnosis over a year down the track, sounds strange but it actually allows me to move forward and start fighting this disease.
53 years old
This is the Rheumatoid Arthritis story of Ginger, in her own words.
The first signs came around the early 1990’s with loss of grip in my hands, my feet hurting more from the ‘bunions” and my elbows would give way. I dismissed these things because I was doing all the housework the way my grandmother did it in her time and would carry the groceries home from the bus stop. At the time I was doing a lot of hard physical work. Then I got caught up with marijuana and the pain seemingly disappear so I did not give it a second thought until years later after I became sober and started to feel fatigued.
My feet were so bad that I could not walk barefoot without extreme pain and often time crying. I ended up at the orthopedic doctor’s office where he did the bunionectomies needed. After recovery from that I felt like a brand new person. But soon after, I noticed the fatigue setting in. My grip in my hands would continue to go and they now are swelling on a daily basis. I notice pains in my knees but blamed that on an old injury. The fevers came and they were the worst at night. I dismissed that as early menopause, but still checked it out with the doctor who dismissed all my symptoms as normal due to my age. Mind you, at this point I was in my late 30’s and don’t remember hearing this from anyone else.
Next, it was pain in my stomach region which led me to see four different doctors before they diagnosed it as my gallbladder. That was removed and I felt renewed again, but only for all my other symptoms to reappear. I did the merry go around of doctors trying to find a diagnosis when I just gave up and tried to live with it.
A rheumatoid nodule grew on my hand and hurt like no tomorrow. Again they dismissed it the first time, but I persevered and finally they did the Rheumatoid factor which came back positive. That was on 09.11.2008 I got the confirmation call. Initially I was relieved. It runs in the family and thought oh I can deal with this. But then I remembered the stories of how my great grandmother was crippled up from it and could not take care of herself. I mourned the thought of having RA for two days nonstop. I thought to myself this is not going to get me through, I must pull myself up from the bootstraps and fight. Fight with education, spirituality, exercise, and nutrition. Every chance I get I am reaching out to people to inform them of the truth about RA which helps me to stay positive and focused.
Thanks for allowing me to share this story I have never shared with anyone outside my family.