anyone else with Palidromic arthitis?

[michelvis]

I'm just looking for anyone else out there with palindromic arthritis or Lupus or anything I guess that leaves them in terrible pain daily. I have had this condition for more than 4 years, I guess I have a pretty severe case as my "flare ups" are more frequent than my remission periods, I am just tired of being in a pain that seems like no one can really get. (My husband is great and really tries, he can't really know though) I have been under a lot of stress and that can affect both of my autoimmune diseases, so I have been in pretty bad shape, my pain management Doc suggested i read up on my diseases and see if I can talk to anyone else who has them (or something like them seeing as palidropmic arthritis only effects like 200,000 people in the country). I'm just sick and tired of being sick and and tired. I started having seizures in June and have been yanked off my immunosupressants and sleep aids too, so I'm barely sleeping, drinking ensure because the pain is so intense I can't stand the thought of food in my mouth and I'm being shuffled through all these NSAID's that give me killer headaches and heartburn and stomache aches etc. that aren't doing anything to help my joints. I live in a tiny town too so I'm driving like across the state and back to 3-4 different Dr.'s a month. and being in a car in my condition is no picnic. I'm 35 and feel like an old woman, I have a lot of great things in my life but pain can just kind of blur that out, dim it down you know. Especially after 3months of constant severe, won't go even the tiniest bit away no matter what I do pain. The siezures started on June 3rd, I have not had an even close to to a good day since. And now they seem to be getting even worse, well my teenage daughter did run away, wreck a car without licence and get married in the last 3 weeks. Now i shall reap the rewad of all this stress.... Help? A kind word? anything????

[txsilver]

It is hard to be sick when you are surrounded by healthy people.  So many just do not get it.  We don't look sick so they sometimes have expectations of us that we cannot meet.  Heaven help us if we have a good day followed by a bad one!  
It is terrible when we cannot do what we love to do or what we do to earn a living because of these insidious ailments.  I am likely looking at having to make a career change because of my limitations.
I have found a bright side to all of this.  Because I had to re-evaluate my priorities, I now spend energy on things that matter to me.  Things I do not consider a priority fall by the way side.  The friends who have stuck by me are awesome and I would much rather put energy into these relationships than those that fell away when I became ill.  It may not sound like much, but I believe that in these and other small ways, some of my quality of life has actually gone up!  Given my druthers, I would be healthy again, but I do try to find the bright side where I can.  It helps me survive.
I hope that your seizures are a thing of the past and that they are able to manage your conditions with other drugs.  I know the time it takes to determine if the meds help and what doses and combos to use is beyond painful, but it seems to be par for the course.  Keep us posted on how you are doing!

[michelvis]

Thank you for your understanding words, sometimes I feel like an island here, I'm relatively young and most of my friends are young (and younger) and in great health so they don't really GET it. I hate to be sick and tired and try to avoid bringing it up, no one wants to hear about sufferring. I'm glad I found this group and thank my rheumy and pain doc for telling me to search this stuff out. A support system is invaluable.  
I have been diagnosed for about 2 years, I also have Lupus, diagnosed with that for about 4 years. I went through the long shuffle of steroids and guesses for many years as well so I'd say that I have probably been sufferring from both for 6 or more years. I see a rheumatologist (who is great, the head rheumy in the state) and a pain management specialist and a primary care physician as well. Yes they all know I am having seizures, they took me off the hydroxychloroquinine because of them (and the possibility that it was causing them) but I still had the seizures about 10-12 a week for all of June and July into Aug but I have now been on dilantin for about a month and haven't had any seizures for about 2 weeks, YAY!  So good news on the seizure front but the loss of the hydroxy... it seemed to be working pretty well and I was feeling really good, pratically darting up the stairs (for me that means walking up them like a normal person) and now I am back at the starting line. I am an artist and work with my hands a lot, which stinks, and I own a small gallery/vintage clothing shop on the Oregon Coast so all the long trips around the state to so many docs and the hospitilizations and just plain pooped out days have taken a bite out of my summer business. I'm just uber fed up, then mix in some stress about business and teenagers... Well it could be better. Thank you for your kind words and empathy.
It's nice to know there ARE people who understand.
Michelvis has left the building

[txsilver]

You are among friends who suffer from chronic pain here.  I understand that Palidromic Arthritis is similar to RA and can sometimes become RA.  I have RA and Ankylosing Spondylitis (AS).  Most of us here either have or still do suffer debilitating pain, fatigue, insomnia, limited ranges of motion, etc.  
Stress is a HUGE trigger for flare and it reads that you have enough stress for 3 or 4 people!  I am sorry you are having to go through all of this.  This would be a lot for a healthy person to handle but it must seem overwhelming to you.
How long have you been diagnosed?  Do they know why you are having seizures?  Have they given you any antiseizure medication?  I know that they sometimes treat pain with antiseizure meds (I was on Neurontin for awhile) so maybe you could get a double benefit?
We will help you as much as we can with information, coping techniques and encouragement.  I am glad you found us and look forward to talking to you more.

Sandi