SO IN NEED OF HELP!!!!!

[hurting_harry]

First I am a 34yo male who has been "diagnosed" with palindromic rheumitism. I am on a list of meds such as indomethicin, tramadol, prednisone, and oxycodone. For what is almost 3 years now I have been dealing with muscle and joints pains, mostly muscle. I get a great deal of swelling to my left hand, wrist, forarm, ankle and foot. I do not swell on the right but I do "cripple" up from time to time for a few seconds on the right side. Curling up of fingers and at its most servere my entire right side. I have had a lyme test and all the arthritis tests through blood work that I think is possible and nothing comes up. Rheumatoid factor is always fine. At times I sneeze and want to cry becouse the pain it sends throught my body is so intense. I have had xrays to my left hand and arm since I was lucky enough to be swollen at the time of my visits and nothing shows up. No cracks no breaks and yes ....no arthritis. I guess what I am getting at is that like I said, I am a young man (34) with a great wife and a fantastic son. Yet i feel asthough I am 70 waiting to die. 3 years of taking all different kinds of anti-inflamitories, muscle relaxers, and pain killers and I haven't even seen an MRI? Is there something wrong with this picture? Am I crazy to think that maybe some other test might be in order? I still work a 40+ hour week thanks to the good people I am employed by. My job is not that demanding. But if it were, I would seriously be in trouble. I miss my son's baseball and football games at times becouse I'm to swollen, sore and tired to go. That shouldn't be at 34. I am not overweight. 6'2" 200lbs. I DO smoke and have been working on quitting. I have gone from 2 packs a day to maybe 5-10 cigs a day. So I have cut my smoking greatly. I eat healthy. I use to be energetic enough to play some basketball, baseball, and winter hockey. So I'm not out of shape. My questions now that you have gotten to know me is what do I do? Is there anyone who has had these symptoms who can point me in the right direction. I am at the point of depression and that just isn't me. SOMEONE PLEASE HELP!!!!!!!!!!!!

[michelvis]

I sooooo know what you are talking about, I'm a 35 yr old female who has had the same basic symptom and treatment regimen as you. It feels great to NOT be alone here. I see a couple of specialists and have also been diagnosed with palindromic arthritis after YEARS of being pushed from "Lupus" to "Drug seeker" in medical files. I know what you mean by literally CRIPPLING pain sometimes shooting up my bones from every joint like steel spikes being driven into and up my bones, where all of the sudden, out of nowhwere I will just scream because the pain is so rapid and sharp, from nowhere. I have had the xrays, I have had about a million blood draws. SOOOO much steroids that I have lost ligaments in my feet. It has effected my life, I am bed bound frequently, can't run and play with my kids, had to quit bartending because my hands wouldn't hold up, nor my feet, my shoulders, ankles, hips, wrists, even my jaw from smiling at customers. I am an artist so of course my ability to paint has been curbed, what I really miss is the ability to hold a pen and write a letter without having to stop and shake or cry every couple of sentences. It *****! The reason you most likel6y haven't had an MRI is that most palindromic patients (of which I'm told there are less than 200,000 in the entire country) do not have any bone loss or damage. I know it feels like there should be (and by all the cracking and clicking and popping I have now I find it hard to believe) I have had a couple MRI's and they are pretty much average for my age except for the presence of cysts between my joints during flare ups. And they still call them "flare ups" even though like you, I have pretty much constant symtoms in one area or another. Pretty much constant and intense pain that seems like nobody understands. I've yhad this going on for about 4 years, as an added bonus my joints like to dislocate, yours too? I see a couple of specialists, my rheumatologist (spelling?) and a pain management specialist as well as my primary care guy (who kicks ***, I love him). I get a lot of encouragement, good advice, and empathy from my pain management Dr. She is about the BEST thing I have come across for the depression (also NOT me!) as she usually sees seniors and is very gentle and kind, and like I said EMPATHETIC which is soooo relieving after hospital visits and ****** Dr.'s who think I WANT to take pain meds for fun, when the reality is that I dream of not needing them, I dream of  straight months without having to see a Dr. That is omething I have found extreemly depressing, the reaction to my pain management from Dr.'s nurses, receptionists, pharmacists, my old boss, some of my old friends, you name it. (I live in a very tiny town where your business is everyones) Looking at me like a junky when I want to scream I"M IN SO MUCH PAIN ALL THE TIME they don't see me cry myself to sleep (when I can sleep through the gripping pain) and awake. They don't see me drink ensure because I can't eat because the pain has made me so sick to my stomach that the thought of food in my mouth makes me gag.
Anyway, enough ranting, my pain Doc suggested I look into my disorder, which is why I'm here on this site, and, as most things she says I should do, I feel a little bit better. Your disease is RARE (super double rare really, rarer than most rare ones) it is also "idiopathic" which is a sweet way of saying no one knows about it really, and it most likely isn't going to get better anytime soon (most cases get worse with only about 10% -15% of people getting better, and the more severe, the less likely remission is). My advice get a good Dr. one that listens and finds you fascinating, get a referral to a good rhematologist (one that finds you fascinating) and get another referral to the head of physical medicine and rehabilitation (otherwise known as your "pain management specialist")Stay away from "Pain Clinics" if possible (they are just the federal government in disguise trying to prove that all narcotics will be abused and that chronic pain is just another word for junky) go to support meetings if you can find them (yes EVERYONE there will be 30+ yrs older than you) because support from other chronic pain sufferers really can help. And do whatever will make you smile! I opened a galllery and now collect and sell other peoples artwork seeing as it is increasingly hard for me to do mine (although I charge obscene prices for what I do finish now, YAY!) and write me back because I DO KNOW what you are going through!

[hurting_harry]

Thank you. The site you suggested if very informative. I must confess though. After all the reading I have done I feel even more confused as to why I haven't been given any other test such as an MRI or anything else. Especially when most Palendromic  patients only have their symptoms sparaticly. Where mine are pretty close to constant. But I do thank you very much for the reply.

[Shaley Girl]

Oh man I am so sorry to hear of the pain you are in.  Having RA myself I understand.  Though I personally don't have any answers (I still have uncontrolled pain myself) I wanted to let you know about this great site      palindromicrheumatism.org      that I came across prior to being Dx'd with RA.  It is full of info on PR and has a forum with great people.

Take care