Hello WelllovedMom...

I too send you my hope and new friendship...If I had some pixy dust and a pretty wand..I would be swining and tossing that crud everywhere for my friends here and myself..Our lives are so inter twind thru our RSD... It is special in that we all can relate to eachother thru our pain and experiences..I don't have a magic answer, my RSD started in my rt. knee..almost 3 yrs. now...but I do know we ahve the support and concern of eachother..we help and encourage eachother from here to the moon and back...I can say the one very beautiful thing I have aquired due to my RSD illness..is having the opportunity to meet such wonderful, now friends here on our RSD forum.. I welcome you..and know that we care about you deeply!!

Hugz, (gentle ones)- Kathy

Thank you all so much for your kind words, ideas, and support!

Loretta & Keep Smilin, you both seem to especially have similar pain issues & complexity of situation. I initially injured my right knee back in 1983 (hyper-extended it in a snow accident) and then finally Kaiser did orthoscopic surgery in 1985, but immediately afterward, I had nerve damage with the loss of feeling/pins & needles/daggers, burning, and such. The doc told me that "oops, sometimes when we pop the leg out during surgery, we can over stretch the nerve. Sorry. You'll learn to live with it. It will take some years, but you'll learn to tune the discomfort out of your mind." The worst part was that the surgery wasn't successful, as there was so much damage, and they had to go BACK and re-operate the following spring of 1986.

As I have a somewhat lengthy history, I try to keep postings brief (never managing to), but a bit more info/history: I have been through a seven page spreadsheet of meds (pain meds, anti-depressants, & such). I started the spreadsheet, as I am sensitive to meds and if it has a side effect, I'll most likely experience it. Not world stopping, I just have to weigh the benefit/yucky side effects and see if it is worth it.

I was fortunate enough to have one of the early TENS back in the late '80s (my very first pain therapy), and have sense tried bio-feedback (still a fan, it does work... well at least it helps), acupuncture, acupressure (I have a Pointer Plus device, which sometimes helps), never was offered PT through Kaiser (had to pay for my own acupuncture too). We have a hot-tub, which can be helpful, but getting in and out is a bit tricky.

OH! Did I forget to mention that I also am blessed with migraines? I’ve had them since I was around 5 years old, and have worked up to getting Botox shots to help with the muscle spasms in my upper neck and across my head that trigger migraines. I'm game for whatever may work. I just don't want to go back to being a zoned-out zombie, who is searching for words (some meds had that lovely side effect of word soup-where your words come out in the wrong order, and you can't think of the correct word.) I even had a family member think that I had gotten heavily into the wine one holiday, which was REALLY embarrassing. I don't mix meds and alcohol, and no one in my extended family ever really understood what RSD was, and why the heck I'm on disability. I LOOK normal. (I use this now when I get snippy with strangers shopping or something of the sort and I start to make a judgment. I'm pretty quick to remind myself that maybe they have some horrible event they have to get to quickly, or their life is even more challenging than mine.)

I’ve also had surgery on my right shoulder for “impingement” but I’m worse now than before the surgery. I think that it’s just that RSDers shouldn’t have their bodies messed with, we risk setting off new flairs, which I wasn’t aware of when I had the shoulder done.

As for my doctors, unfortunately (and fortunately), I have Kaiser medical- an HMO, and am on Medicare (at the ripe old age of 42). My co-pays are outrageous ($150 per spinal block, $50 for Botox). It may not sound like much, but I really need to go back more frequently, but can’t afford it, so the treatments are not terribly effective, as I’m not really able to get them often enough to avoid the rebound/flairs.

Loretta, I have to ask you about Fibro. Both my primary doc and neurologist have said they think that I may also have Fibro, but that there isn’t any test for it (they have done MRIs and ruled out MS, and blood tests and ruled out Lyme disease, along with thyroid issues). My primary doc says there is no way of knowing for sure, and that the only treatment is meds and “know your limits” which I somewhat do, and take meds (I’m on Lyrica for nerve pain). It drives me CRAZY, as I want to know if this is something that has developed (I do have the pain points bi-laterally, and get SO exhausted that there is no way to describe the horrible unbearable exhaustion.) I asked for a referral to a specialist to re-examine me and see if this is now something I am dealing with, but my doc says there isn’t anyone to send me to and it wouldn’t matter anyway. I would be happy to better understand what is going on with my body. That is how I have stayed sane, and delt with everything so far is learning and working with each hit as they have come.
Any ideas as to who could diagnose fibro? (What type of specialist?)

I too find joy in music. I joined our church choir, and make jewelry (was starting to get ready to try to sell some but had to put it on hold for a bit, but no matter, I can still create when I’m feeling up to it.) I had worked with the Chronic Pain program at Kaiser, which was wonderful the first time (they reviewed all my medical history, meds, then worked with me to tailor meds to my needs. My arthritis was so bad that they felt PT would only make me worse, so they skipped that. The dumb thing is they kick you out of their program after 2 years, so even though this is a lifelong issue that occasionally needs fine-tuning, I have nowhere to go. I did re-enter the program several years ago, as I was desperate, but they were… MEAN!!! (I feel silly saying this but I just have to!) They actually asked me what I wanted them to do for me, since I’d already done the program, and then pointed out that they had nothing else to offer me. I left feeling stupid, and like a waste of everyone’s time (I mean in the BAD way, like a waste of space) and vowed never to put myself in that position again. Of course it cuts off the ONLY RSD treatment Kaiser has to offer, other than my 10 year old program, but I will not subject myself to self-righteous cruel idiots again.

Ugh! That was ugly. Sorry about that. All better now. Anyway, I truly appreciate EVERYONE who was kind enough to respond, I do go back and reevaluate if there are some ideas that maybe I should be trying that I’m missing. Right now I’d have to say that anything that would help with sleep would be good (wasn’t able to last night) and that I want to feel well enough to walk.

Anyone here with knee issues try Yoga? I keep hearing “you should try it” and I keep cringing inside every time as I think of the arthritis pain, and the possible RSD flair. Any feedback again, greatly appreciated. Thanks all, and sorry I ended up rambling on so much.