I know there is no answer for this one but maybe someone can think of something i can try- I have lost all the tissue and stuff around my elbow so they get very painful and I cant put them on a hard surface= Now my knees are going=they are getting stiffer by the day and soon I wont be able to walk. Any ideas to keep my knees flexible, I already swim and do aqua aerobics but with each day it gets harder to do and more painful after- I don't know what to do or how to live knowing I wont be walking soon,,,,,I have been thru all the txs including ketamine infusion...

Thanks for any suggestions

Debbie

Debbie,
I'm sorry to hear this! Also, I am very sorry I don't have an answer for you and I sure wish I did! I know you tried HBOT, it is a major aid for me but has to be on going. Diet, water exercise, HBOT, suppliments, meds and meditation are my routine. I really wish I had the answer.
I'll keep you in my prayers.
Blessings,
Di

I am sorry to say that you will have to keep moving them(knees). Talk to your PM doc and tell him/her what's going on. I am so sorry you are having to deal with this pain. Epsom Salt baths help me.


Dew

Hi debbie
glucosamine may help,and keep aqua jogging,,,we have to keep moving,,God answers all prayers,,keep praying,,and I will send up a special one for you 2nite,,,,,,,,,,,bobber

Hi Debbie. Sorry to hear that your knees are not doing so well. I have had problems with my left knee for 12 years now...ever since I got cleated and bad knees just run in my family anyway. My RSD started in my left knee and I feel the grinding and it pops at least once a day...but like everyone has said, you have to keep them moving. One of my surgeries had me in a straight leg brace for 6 weeks, so my knee healed straight and OMG was is ever painful to regain my range of motion...and I still don't have it completely back. I go to PT 3 times a week for my RSD and we work it and my hip out. They are very careful with me and help to sooth the tight muscles before and afterwards. Maybe some light PT would be good for you. I also take a lot of warm baths, they seem to help loosen my muscles, tendons and what not. Also, my mother swears by fish oil (the capsuls), she says that it helps with her arthitis, I ain't tried it, but like all people, I trust my mama Other than that I am not sure what to suggest, other than exercise bikes, it's a fluid, non-impact, flexible workout for your knees. I know that I can feel the "grinding" in my knee when I'm on it...but I also know that it is helping to keep it flexible. Hope any of this helps and that you have as painfree of a day as possible.

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