Hi! I'm glad to have found this site, seems like there is a lot of support and information here. I'm about to be 44. I'm single and have a 23 year old daughter who has flown the coop and is about to get married. I've always been pretty healthy and very active. When my daughter left home I thought, "this is kinda cool, more time and freedom!" Bike rides and photography trips!! Ha! That was about the time I started battling my body. Both of my parents passed away in their 50s due to cancer... honestly, that's what I thought would get me eventually... but this thing is totally out of left field.
I've had blistering, cracked and peeling hands (and less so on my feet) off and on for going on 8 years. Dermatologist has been useless. Then 2 years ago, my right ankle swelled up without injury or explanation. Urgent care doc said I sprained it and said to rest it and see my GP if it doesn't get better. 2 Weeks later I saw my GP who said (again) that I must have sprained it without knowing it. (Now I know I'm not a spring chicken but I would have known if I had done something to injure it in that manner) She gave me an elastic brace and said to see her again in a month. A month later she was stumped and sent me to an orthopedic doctor. He at least acknowledged that I didn't necessarily injure it, but put me in a walking boot for 4 weeks. Four weeks later he put me in the boot for another 3 weeks. Then he finally did an MRI, which showed everything intact but several large pockets of fluid were in the ankle and he didn't know why. He then put me in a lace up brace and we tried Meloxicam and vicodin for the times that it was unbearable. All this started in early September 2011, in June of 2012 I had surgery on the ankle to clean up inflamed tissue. Doc expected that this would solve the problem and I'd be good as new. Wishful thinking!! Never did get better. We tried cortisone shots. Cortisone was like a miracle drug, the ankle felt awesome and even my hands cleared up!! BUT...for me the effects only lasted for 2 weeks and I was back to limping around and peeling hands. Then in February of this year (2013) my left knee (yes, now I'm a mess - right ankle and left knee) swelled up on me without any real cause. I noticed that it felt swollen in the car on the way to my grandmother's house...she had just passed away and I needed to go through the house. I was in dire pain with the knee that weekend. I got in to see the ortho doc that next week. I think he was sick of me by this time. LOL He said that the cartilage under my knee cap was shot and gave me a cortisone shot and told me not to bend it with weight and suggested that my cycling days might be over. Oh hell no!! Cortisone once again was a miracle drug...knee, ankle and hands felt great! I could walk again... for all of 2 weeks. This was about the time I started fighting my GP to send me to a rheumatologist after doing some research on a possible link between the crap on my hands and the problems I was having with my joints. She did a rh test that came back negative. She refused to send me to a rh doctor due to the negative test. Said that she would look like a fool if she referred me and told me to lose weight and I'd get better (I wish I was kidding). I changed my GP and sent her a nasty email telling her exactly why. The new GP apparently has an obsession with diabetes. No rh referral, but I definitely don't have diabetes and even my cholesterol is not too bad. I waited in pain until the next time I could have another shot. I started having some pain and swelling in my left elbow, not too bad, at least I don't need my elbow to walk. When I could no longer bear it I called the doc and he had me see an associate orthopedic doc. The new doc (who I nick named Dr. McDreamy) suggested we drain it right off the bat. What a concept!!! He drained it and the fluid was cloudy. Yuck!! But the photographer in me took photos!! Thought it might be gout even tho I had tested negative previously. After draining he shot it with cortisone. The next day I was feeling great!! Until... until I got a call from the ER saying they needed to see me since they found bacteria in my fluid (no gout crystals tho). They wanted to make sure I wasn't sick and thought they might drain more and possibly surgery to clean out infection. Luckily, there was too little fluid left to attempt another drain and they would wait for labs to come back before deciding on surgery. Since I wasn't running a fever or anything they sent me home. I did manage to avoid the surgery as well. I went home, felt great all around for almost a month. I was even able to shoot a wedding! Then the ankle flared back up again and so did the crap on my hands. I could barely walk, I was beyond frustrated! So the Friday night leading into the long Labor Day weekend (the 2 year mark of the start of all my joint problems) I took myself to the ER. I was hoping to get them to drain the ankle and shoot it again... it seemed to have helped the knee. I just wanted to be functional that weekend. I was hoping to salvage my photography day trip the next day, but it wasn't to be. The ER doctor remembered me from my previous visit the month before. He was a godsend!! I explained my frustrations and he actually listened. He put in a referral to a rheumatologist, even though "they don't like ER docs to do that" Finally after all my fighting... I got my referral!!! Yay!!! They took some blood and got another xray of the ankle. He gave me some more pain meds and upped my meloxicam dosage but no action on the ankle. I was so frustrated by the lack of relief I was in tears (poor doc! he felt so bad) ... but the ER doc didn't want to blow the smoke off the smoking gun before I saw the rh. The next morning I had my first appointment scheduled with the rh doc for 3 weeks later. The upped dose of meloxicam did seem to help more and the ankle did seem to back off to a more tolerable pain level.
Had my first RH appointment on Sept. 20th. He asked me to tell him everything since the beginning... really??? He's gonna listen??? What a concept!!! When I was done... he was just floored that this was the first I'd seen a RH doc. He went over all of my (numerous) previous tests and told me that what I had was definitely a seronegative form of inflammatory arthritis... called it a close cousin to Psoriatic Arthritis. I felt so vindicated!! Doing my own research I thought that it might be PsA and kept begging my docs to listen. I'll be taking my second dose of methotrexate tomorrow... I'm praying that this stuff works well. I was scared to death of the possible side effects... but since I haven't noticed any yet, I'm hopeful that I won't. I'm a little frustrated that it's gonna take a while before I see any results. I'm starting to have a little knee pain again and my hands are flaring really bad right now and are a ripped up mess. But, still... I'm glad that I can finally stop fighting for a diagnosis and start fighting the disease.
Sorry about the book here... just needed to vent a bit, I guess. While friends and family see me struggle at times... I don't think they really understand. I have really had so few short periods of real relief in the past 2 years and it's frustrating to deal with. I want my life back!! I want to go back to doing century rides on my bike and hiking in Joshua Tree with my camera and quite frankly... I want to be able to clean my house without having to sit down every 10 minutes. And I'm just now realizing that just because I now have a new doctor and meds... that this is probably going to be a life long battle. At least the new doc said I could keep cycling!! :)