Joan’s Rheumatoid Arthritis story
Liza’s Rheumatoid Arthritis story
Nicole’s Rheumatoid Arthritis story
This is Joan’s onset of Rheumatoid disease story, in her own words.
I posted previously about my diagnosis of RA and at that time had very little knowledge of what it all meant. Reading through the RA Warrior website I gained valuable information and insight into the disease and how to manage it effectively. Reading other websites was also informative and took the fear I felt and turned it into hope and encouragement.
Last May of 2011 I took a bad fall on my hands and knees. Having a great deal of pain and difficulty walking a month or two after I saw a orthopedic surgeon who performed surgery on my left knee removing a cyst and fluid/blood collection. My left knee was also a problem and needed the same done. My wrists were extremely painful, swollen and I couldn’t do much with them. A hand specialist was going to do arthroscopic surgery to repair the problems after the knee surgery. It got to the point where I couldn’t walk or use my hands at all. I used crutches having problems getting around even with them. The pain was tremendous and getting in and out of bed was a horribly painful experience. All along, myself and my doctors were attributing my pain to the fall I took.
My hand surgeon was going over my x-rays with me when I mentioned to him that my elbows hurt also. He asked me why I was having so much joint pain and if rheumatoid arthritis ran in my family. It did. He ran a RA factor test and I tested strongly positive. With their referral I got in with a rheumatologist within a week. He was thorough, answered my questions and that’s when I first saw the light at t he end of the tunnel. He prescribed steroids which I’ve been on for two weeks and the improvement is remarkable. When I go back to see him on 2/13 he’s going to put me on methotrexate and wean me off the steroid. I don’t fault the doctors for not seeing it as RA to begin with because I didn’t tell them all my joints hurt on both sides. I assumed it was because of the fall and would take care of itself. One lesson I learned is when it comes to your health – never assume.
I’m back to an active lifestyle again. At first it hurt but after physical therapy and a at-home program my muscles are strengthening and I’m mobile again walking with the aid of a cane. I have a ways to go and may not make it 100% as I was before RA but I know I can live a full life in spite of RA diagnosis. With some modifications, medication, patience and maintaining an exercise program I know I won’t get into the disabling event that took place before a proper diagnosis was made.
This is Liza’s onset of Rheumatoid disease story, in her own words.
I’m Liza, and I accepted that I have RA this week. I know this isn’t an AA meeting (though starting methotrexate next week will certainly be a lifestyle change for this New Orleanian) but reading this blog, sorting through the links, and, most importantly reading the other onset stories from this site has helped me to get to this spot.
I’m 56. The first signs that something was wrong started with my right hand in 2008. Actually just the middle finger. Swollen, red, ached almost always. Finally a little bump appeared just below the knuckle. I ignored it for several months. Or rather pushed thinking about it off to the side. Which was easy to do. Since August 2005 (aka Katrina) I supported myself by keeping my small geeky consulting business going through 9 months of evacuation, and dealt with the death of both parents (I’m an only child, so I am the one who saw them properly out the door), a husband who fell in love with all things Chinese, especially women, a divorce, a new relationship, marriage, shingles and a broken foot. I’m thinking that will pass for a stress trigger.
By the time I scheduled the surgery to remove the pins from the foot my right hand index finger was also swollen and the shooting pains were waking me up at night. One inconclusive MRI later the surgeon (whose specialty is hands) recommended removing it to be safe. Neither he nor that lab had any idea what it was, but it wasn’t malignant.
Whatever it was (RA nodule?) removing did nothing to reduce swelling or pain. Slowly the swelling spread to my left hand, left wrist, right foot and I started thinking RA, or some other form of arthritis (I have a family history of both on both sides of my family. Strong hearts, great anti cancer genes, crap for bones). I mostly suspected RA just because it didn’t feel anything like my arthritic hip, which I knew was osteo. It felt, and feels like something systemic. Something going wrong from the inside out. Like the nerve I felt uncoil down my spine just before I got shingles.
GP did the usual blood tests. RA titer negative so they said ”you don’t have RA’ and sent me to a young new osteo doctor. After X-rays he said hip is osteo but everything else is something else and the fingers felt ‘boggy’. So, bless him, he sent me to the best Rhuemy in the city, where my story becomes one of the blessed.
He’s a great doc. His blood tests showed mildly elevated anti-CCP. Since my symptoms were slow and (compared to most stories here) mild he proceeded cautiously with NSAIDs (diclofenac ended up the best) and frequent check ups where he spent real, qualify time asking me about my symptoms and working with me to develop a plan to cautiously determine if RA is the correct diagnosis or if I would be one of the small percentage for whom this anti-CCP level was normal. He pointed out need for caution, since once labeled with the diagnosis in the system there is no going back, and the consequences for me, since I carry my own insurance, are enormous. Also he cautioned that the next step, DMARDs, was not one to take lightly.
For the last couple of months, the pain increased slowly, more joints got involved (other hand now, and, in the last two weeks, twinges in the other wrist and foot. I am very, very slowly becoming symmetrically affected. I routinely talked myself out of the diagnosis (no blinding flashes of pain or joints that deform over night, little symmetry. More like the slow annexing of territory by a very cautious RISK player…)
So at the last visit I asked him for a reality check. I can live with this level of pain. But the slope of the curve is definitely not going in the right direction and I wanted to understand what I should expect for a baseline. (Yes, I am a geek). He gave me his sheet on methotrexate (his office made its own summary since he said there is so much crap out there) and told me to read carefully and think about next steps. He said in his opinion it is time for the first DMARD – my priority should be to stop as much damage as I can – but he also emphasized that only I can make that decision. Told me to do my web research but watch out for crackpots. And listen to stories of people with RA to get a sense of where I fit into the scheme of things from their perspective.
So here I am. Now I know about seronegative RA, asymmetrical, slow onset symptoms and that I am right to listen to what I hear going on inside of me. I’ve thought through where I think I am and what I think I should do next.
This weekend I’m in Austin for the music and the friendship and a couple of last drinks with my wonderful husband. Monday when we get back I’ll get that prescription filled and start the good fight.
Thank you all…
This is Nichole’s onset of Rheumatoid disease story, in her own words.
My name is Nicole. I am 27 years old. I started experiencing joint pain when I was about 20 or 21 years old. It was usually in my hands in the very beginning, in my thumbs or pointer fingers. I remember thinking I must have sprained it or hurt myself somehow, although there was never an explanation. After a while it became more and more frequent, and more and more joints were becoming affected by this random joint swelling and stiffness problem. I knew I must have some kind of arthritis, because “arthr” – joint, and “itis” – inflammation, and I obviously had joint inflammation.
Doing a search on the internet led me to a web site that listed all the different types of arthritis, and if you clicked on the name of the arthritis it would take you to a basic definition of what it was. So by process of elimination, I ended up coming down to a disease called Palindromic Rheumatism. My joint swelling was never symmetrical at first, I did not wake up with pain and stiffness every morning, and when I went to see the doctor about it, my Rheumatoid factor was negative at 10.7. My joint swelling then looked identical to pictures of palindromic rheumatism that you can find on the internet. It did not look the same as rheumatoid arthritis swelling.
When my joints swelled, it hurt really, really badly. I really had a bad case of this Palindromic Rheumatism. It became more and more frequent, and affected more and more joints. I fell down a couple stairs once, and I didn’t hurt myself, but the feeling of shock was definitely there when I got to the bottom of the stairs and my heart was racing at about a million beats per second. But there was no injury. I did not hurt myself. For at least 24 hours afterward I was just fine. But then all of a sudden it was like all the joints in my legs decided to take turns hurting and swelling really badly, and for about a month I walked with extreme difficulty. My legs were both extremely painful for a long time. But it did heal after a while, and went back to acting like a case of “Palindromic Rheumatism”.
Then one morning I woke up with a very swollen eyelid. There was no bruising, no discoloration, and no mark of any kind. Just a lot of swelling. Blinking hurt, but not severely. After about three weeks with my very swollen eyelid, I went to the hospital. I remember telling the doctor everything, but he just looked at my eyelid completely stumped. He did not do anything for me. I left with “Hopefully it goes away soon.” Which it did, about a week or two later. I began to notice that when I cried, my eyelids would swell like that. So I don’t cry anymore, and my eyelids seem to be okay now.
This was until I was 23 that my disease was like this. I did try to get help for my condition. The doctors I saw at first just tested my rheumatoid factor and then came to the conclusion that my boyfriend was hurting me. I got no kind of medication or referral to see a specialist because my symptoms did not match rheumatoid arthritis, or any other disease that they knew about. I was looked at like I was crazy when I tried to tell the doctors about this thing called “Palindromic Rheumatism”. And I almost don’t blame them, with a name like that. There are numerous occasions where I have gone to the hospital with severely swollen joints, and I never got anywhere with doctors. It was upsetting and frustrating.
Then at 23 I got pregnant. I was very, very ill. I could not handle how sick I was. I decided to have an abortion, mainly because of how sick I felt. It was scary. So then around this time all my symptoms of joint pain and swelling miraculously disappeared. It was great! I was happy about that. I was experiencing what they call “remission”. I always had a feeling that my joint demon would come back eventually, though.
Fast forward to me just turning 26. I had just moved, and I guess the move stressed me out a little. The day after I moved, I felt a pain in my chest that gradually got worse until I could not get up from a laying down position. It hurt so bad I thought I must be having a heart attack, so I went to the hospital. They gave me an ultrasound of my chest and told me that my heart looked great, and that was it.
Then that old familiar demon came back. And it came back with a vengeance. It quickly got worse until I was waking up with pain and stiffness every morning. Every joint in my body has been affected by this, except maybe the one in my voice box. It’s been in the very top of my spine, as well as the very bottom, and the middle. It likes to be in my jaw, and all my “DIP” joints, and anywhere else that might be considered by some to be unusual. And I experience the chest pain now quite frequently when my other joints hurt, too. I believe it is called costochondritis when your chest joints swell. I also have quite a case of crepitis. My joints crack and snap and pop and make other strange noises quite frequently, and it’s usually painful.
I went back to the doctor after developing a bump on my pinky finger that I figured they could not blame on my (now ex) boyfriend. This time I got different results. Despite my age, the doctor I saw originally seemed to be convinced that it was osteoarthritis that I have, but she tested my rheumatoid factor which turned out to be positive now, at 50. The x-ray of my hand did not show any problems, but my foot showed a bunion deformity.