Andrea’s Rheumatoid Arthritis story
Amanda N.’s Rheumatoid Arthritis story
Becky Jane’s Rheumatoid Arthritis story
This is Andrea’s onset of Rheumatoid Disease story, in her own words.
I had been a pretty active person for most of my life. I exercised often. I volunteered for many organizations. I have had a job (or two or three) since I was 16 years old. I ran two marathons and countless other 10Ks and 5Ks. I prided myself as a “go-to” kind of person. I was motivated, healthy, and happy.
Then, in March of 2010 I got a whopper of a flu — a flu that put me out for a few days and, in many ways, I never fully recovered from. Many weeks after the most horrible symptoms went away, I felt exhausted and my lymph nodes felt swollen. I just didn’t feel like myself anymore. I went to my doctor and was tested for strep (negative) and blood infection (negative). I moved on and I got a little better. About a month later I noticed that I fatigued very easily and that I felt warm a lot. I NEVER feel warm. I am one of those people that is always cold. I took my temperature one day and was surprised to see that I had a slight fever. For the next few weeks I noticed that I had repeated (low-grade) fevers. I went back to my doctor who asked me to keep a temperature diary for two weeks. I ran low-grade fevers most every day. My doctor ran a lot of blood tests, all of which came back normal. Again, I moved on feeling satisfied that I didn’t have leukemia, infection, or thyroid imbalance.
I woke up one morning in June and felt a pain in both of my thumbs. I didn’t think too much of it at first. I had just purchased a Blackberry and was playing with it quite a bit. I thought that perhaps I had “Blackberry thumb” which is an overuse injury that occurs with people who text a lot. I didn’t text much at all but I figured that was it. I laid off my blackberry for a few weeks but I noticed that my thumbs hurt more and more. It got to the point that I couldn’t hold a glass, zip zippers, button buttons, or utilize my opposable thumbs that we all take for granted. I also noticed that I could barely make it up the stairs without feeling like I needed to sit down after one flight. Back to the doctor I went. I mentioned RA as a possibility because my aunt has it and my grandmother had it. She ran the blood tests and my RF was positive. I was then sent to a rheumatologist.
My rheumatologist is fantastic. She put me on Prednisone and the pain vanished. She then started me on hydroxychlorquine, which took about 3 months to work. I had a repeat flare in my thumbs, which was relieved by another round of prednisone.
Several months ago I noticed that in addition to my thumbs, both pinky fingers began to hurt as well as my wrists and fatigue was still an issue. Last month my rheumy put me on sulfasalazine. Her goal is to keep ALL pain away since pain indicates inflammation.
I feel I am very lucky that my RA doesn’t seem severe and my pain is managed fairly well. I do need to contend with increasing depression; however, as my fatigue has me feeling very run down. I feel old (I’m 40). I don’t like taking medication but I know it is the best option. I worry about the future since RA has no cure and it is generally a progressive disease. I have two active kids and a very active husband who don’t quite understand that I now have limitations. I was once a person who enjoyed pushing the limits of my body. Now just staying up past 9pm is pushing it.
This disease is emotionally draining- and that has been the hardest part for me. Having the RA Warrior as a support resource is so wonderful- thank you!
This is Amanda N.’s onset of Rheumatoid Disease story, in her own words.
I have a hard time deciding when my RA started. There are a few things I know for a fact: I have been diagnosed for one month as I type this, I knew nothing about RA before being diagnosed and I am learning about a whole new world as my story unfolds.
Ten years ago I was hospitalized for migraine headaches. I was in a college lecture hall taking notes and the pen fell out of my hand. I tried to pick it up but couldn’t. Later that evening I was in the bookstore and had three books in the same arm. They fell out of my arm because my arm went numb. Through all of this I had a terrible headache. I was tested for a brain tumor, MS, all sorts of serious conditions. The final verdict was that I had a migraine episode.
Two years ago I started a new job that was 80 miles from my home. Part of the agreement with my employer was that I would work from home and in the office so I didn’t have to drive the long distance every day. After a few weeks of driving to the office three days a week I noticed that my wrists hurt, a lot. I shrugged it off and figured I was just being a sissy from driving so much. The thing that really bothered me is that my migraines were beginning to come back with a huge vengeance – I was getting one a week and they were debilitating. I established a relationship with a neurologist who put me on a medication regimen to diminish the frequency of those headaches. I told her specifically that I knew I was going to get a migraine because in the days ahead of one I would drop things with my hands. Today I am reconsidering what this means to me with RA.
In the spring of 2010 I became very ill with what was then thought to be GI issues. After months of scopes, tests and x-rays my doctors were baffled. Eventually I was diagnosed with something called Lymphocytic Colitis – a rare and non-traditional form of colitis. At one point in the diagnostic process I was referred to a surgeon who thought my issues were musculoskeletal in my ribs, but X-rays showed nothing. As I look back, I wonder if maybe this could have been my first real flare.
As the months went on the pains that had started in my wrists never went away. They were now starting to run down my fingers, up my arms and oddly my feet were hurting too. The pains continued and were getting worse. There were days that I couldn’t open my pill bottles and had to suck up my pride and ask for help. One day at work I couldn’t fold letters that needed to be mailed. I decided that the time had come to get some help.
My PCP ran the tests and I was negative on all counts for a rheumatoid factor – something that I was unfamiliar with. He asked me if I wanted to be referred to a rheumatologist. The pain was excruciating some days; I couldn’t live like this, even though I couldn’t see anything wrong. He referred me and I started the three-month wait to see the rheumatologist…
At my first appointment the rheumatologist took one look at me and told me that I had visible swelling (I did?!). Initially she was inclined to say that I had carpal tunnel, but after touching my hands, my elbows, my shoulder she said, no way, not carpal tunnel. In my head I thought, “I don’t care what it is, just help me, please!!” She did her physical work up and told me that I needed an MRI. I left her office that day hopeful, but scared – I didn’t know much about RA but was learning more. Not to mention, after that physical workup my body was screaming and so was my head. I went to bed that night with the worst headache in recent history.
After being denied an MRI by my insurance, the doctor said she needed no more proof, I have RA and she needed to start treatment. The day she told me I needed to start methotrexate I was scared to death. I clearly was not the empowered patient I had presumed myself to be. I just took my fourth dose of MTX and am hopeful for a good future.
So, did my RA start 10 years ago when I had my first migraine and started dropping things? Did it start 2 years ago when my wrists screamed after driving 160 miles each day? Did it start a year ago when I was having GI issues? I’m not sure, but I do believe that all of this goes along together. I’m not sure if anyone else has quite the concoction of symptoms that I do, but piecing them together has been empowering for me.
This is Becky Jane’s onset of Rheumatoid Disease story, in her own words.
I was training for a triathlon in 2006 when I fell off my bike & broke my right ankle (hit a curb!). When I landed I also hit the cement so hard (on my behind, thank goodness, not my head) that I got a major scrape on my left cheek (behind again, not face!)
A couple of days later the scrape was really hurting. I called my GP. He prescribed an anti-biotic and said let him know how I was doing the next day. After spending the night with ice on my head to keep the fever down and telling him that I had one JLo cheek (behind again) he said go immediately to the ER, which I did.
Turned out I had got MRSA on my behind & spent 5 days in the hospital on an IV, which got rid of the bad bacteria but also the good. Two years later I was diagnosed with RA when I was training for my 1st half marathon & my right ankle (the one I broke) started hurting, but then my left one started in too. After seeing a neurologist and doing nerve study tests, he said I had the nerve responses of an 80 year old!
I was 56 at the time! He ran blood tests. He said I had a major B-12 deficiency, but then got this funny look on his face & I’m thinking What The Heck. He proceeds to say “I’m really sorry, but you tested positive for RA”. At that point in time, I didn’t even know what it was!!
But I had lost a bunch of weight unexplainably (which I thought was great!!) I was constantly tired and my wrists, fingers, toes and feet hurt which I attributed to my job as a flight attendant.
I did confirm that my aunt, my mom’s sister, had RA and had probably died from it, but I really think it was that dang curb that got everything messed up inside me and set the RA in motion. At least something in my body is still in motion!