I don't suppose that the "synergist" injections to the knee would be helpful. It sounds like they would, but I know that they are primarily for arthritis. I am so sorry for what you are going through, and know that, effort-wise, you are much abler than me and that you have my great admiration. Caring For You - billie

Debbie, Hi I am so sorry about your knee. It a terrible problem absolutely nothing helps mine but rest, my gel and epsom salt baths and my cane. thats it. Mine can be dangerous and give out so be very careful. Love you Deb. take care cz

Debbie -

I too am so sorry you are going through this.

A silly question, but I have to ask, do you have a good rheumatologist in the picture? I only ask because they may have a little something extra in their bag of tricks.

Mike

PS And thinking about the Dept. of Rheumatology in general, just found this one:

"HLA-B62 and HLA-DQ8 are associated with Complex Regional Pain Syndrome with fixed dystonia," de Rooij AM, Florencia Gosso M, Haasnoot GW, Marinus J, Verduijn W, Claas FH, van den Maagdenberg AM, van Hilten JJ, Pain 2009 Sep; 145(1-2):82-5. Epub 2009 Jun 11.

Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.

Complex Regional Pain Syndrome (CRPS) is clinically characterized by pain in combination with sensory, autonomic, and motor symptoms that may include weakness, tremor, myoclonus and dystonia of the affected limb(s). The syndrome is multifactorial in origin and mostly attributed to tissue injury. There is some evidence that the human leukocyte antigen (HLA) system plays a role in the pathophysiology of CRPS, but previous studies lacked power. Here we performed the most extensive study investigating the contribution of HLA alleles (i.e. HLA-A, HLA-B, HLA-DRB1, and HLA-DQB1) in 150 CRPS patients who also had fixed dystonia. HLA-B62 (OR=2.05 [95% CI 1.41-2.99], P=0.0005) and HLA-DQ8 (OR=1.75 [95% CI 1.20-2.57], P=0.005) were found significantly associated with CRPS and dystonia. The association remained significant after correction (HLA-B62 P(corrected) [P(c)] = 0.02 and HLA-DQ8 P(c)=0.04). The involvement of HLA-B62 and HLA-DQ8 in CRPS with dystonia may indicate that these HLA loci are implicated in the susceptibility or expression of the disease.

PMID: 19523767 [PubMed - in process]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Thanks for all your suggestions! I will keep it moving in the water. I do take fish oil...This whole thing just stinks! Feel like I am in a nightmare and can't get out!!- as I am sure you all do too!

Deb

Hi Deb,
I'm so sorry about your knee problems. I know how scary that must be.
I had frozen shouldler (RSD) after an operation. Like you said, PAIN to get motion back. Then went to other shoulder-more therapy (torture) Then my hand, wrong diagnosis and didn't get started with therapy soon enough, so have permanent partial paralysis. I know now how important it is to keep moving. Something I did on my own before physical therapy was to have massage therapy. I had an hour just before the pt. I really believe it helped me get my range of motion in moth shoulders completely back. I'm so grateful. I have half paralysis in left hand. But I deal with full body now. When my toes started curling up, my Dr. had me to dailey exercises in the pool to get range of motion back. IT WORKED I'm so grateful. toes touch the ground now. You can also do this in the bathtub or foot bath It was the swimming though that really helped me get my toes straightened out.
I have not used this, but am going to have some made up. It's compounding pharmacy mix up lidocaine, ketamine, and a couple other ingredients. When I find the receipe, I'll post it. My Dr. said he would order it for my joints
Please don't give up. I know a lot of us are afraid of losing our mobility,
but the longer we can keep it the better. Michael J Fox with Parkinsons Disease just wrote a book, "Always Looking Up" I'm going to get it. It's about his coming to terms with this disabiling disorder. He hid it for a long time.
But now is trying to help find a cure and just help others with it to learn how to accept it and make the best of it.
That's the part that is hardest for me, I've really had set back and am in so much pain, but trying to keep mobile and positive. Take care of yourself, your friend, loretta soft hugs