[debbiehub]

Now that my RSD has spread from my feet to my arm/hand I just dont know what to do- My hand feels like its swelling and getting the lovely temp changes! My arm is becoming useless- I keep searching the web for something to try other then pain killers and I come up with nothing- I wonder if anyone is getting anywhere with stem cell but I cant find anything. Since I have already done the ketamine and Hyperbaric I feel that there is no hope- I am definately going downhill physically and mentally and feeling hopeless- I still work PT and dont know what we would do if I couldnt work anymore- We would not be able to pay our bills and this is a constant stress....
Thanks for listening

Debbie

[Imahotep]

I wish I could help but all I can do is wish you luck and say hang in there.

There is work going on in all phases of this disease even if progress has been slow.

It's always so bleak when we feel bad but there have always been good days coming again for me. I hope you have lots of good days soon.

[Jomar]

I'm still trying to learn a lot of this RSD stuff.

Do you mean you can't actually use your arm - as in muscle use/movement?
or you can't use it much because of the pain and swelling?

All I can suggest is try to not worry/stress about things you can't control - from what i have read stress is a big factor with many pain/symptoms syndromes.
I know it's hard to do that though.
Sometimes I do a intense worry about things and then I decide I can't control it -then just let it go and cross that bridge when it comes.

Deep breathing, relaxation, visualization- trying to reduce the tension- I know you have probably heard that all before - but we can all use the reminders.

Typing it just reminded me to do it also, I've been slacking on my stretches and home therapy too. {RSI/TOS}

[dreambeliever128]

Mine did just the opposite of yours. Mine started in my right arm and hand and later I got it in my right foot up to my knee.

It takes a combination of things I believe to help with the RSD. PT is great but do make sure that the Physical Therapist know a lot about the RSD. Don't let them make you do strenious things such as lifting weights, therabands and such. I had one PT'er to try that on me and I dropped him really quick. I found this great husband and wife that had practiced in Holland and they believed in massage therapy and myofasical release more then anything. They worked on me for over a year and did helped me a lot with my RSD and Fibro.

Also, a lot of people don't get triggerpoint injections but they help. They are shots that are made up of lidocaine or ketamine. I had good luck with blocks which some people don't.

Like Jo says. Relaxation, Meditation and prayer. My Dr. taught me how to do the relaxation, meditation and prayed with me often. It took me a long time to where I could do them due to the pain but I got there.

Don't give up Debbie, because you can and will get better.

Ada

[JOAN_M]

hi debbie,
you spoke of pain killers, and by that i assume you mean narcotics, but you did not speak of meds such as neurontin and i find that is my saving grace for the vibrating zapping swelling and pain. it is where i start as far as rsd control. that goes hand in hand with elevating the area in question, using heat, not over doing, and relaxation techniques. i do not like pt and so do my own exercises at home since i find others do not understand rsd and push me too hard and make things worse. i also prefer ibuprofen to narcotics. i find it helps the swelling and pain, whereas the narcotics just make me tired and loopy ... mostly, with rsd, i have found through the years that what works for one does not always work for another so i wish you the best in your efforts and share what works ... you never know who you may help.
joan

[fmichael]

Dear Debbie -

First of all, I am the most enthusiastic supporter of meditation you'll likely come across, and can wax on at length about such options as Mindfulness Based Stress Reduction [http://www.umassmed.edu/cfm/srp/index.aspx] or my teacher, Shinzen Young and some of his materials on working with pain [http://shinzen.org/].

That said, it's my sense that you are looking for some medical options and that's what I will address.

I just came across one of the most helpful pieces I have seen in a long time on the RSDSA Medical Achieves Page, an article entitled "Pharmacologic Therapies for Complex Regional Pain Syndrome," written by Sean Mackey, MD, PhD, and Steven Feinberg, MD, MPH, Current Pain and Headache Reports 2007, 11:38–43. I have downloaded and attached a copy of the piece.

Please pay special attention to the discussion of Bisphosphonates. I have been on infusions of Zometa off and on for the last year and a half and it has reduced my pain levels by anywhere between 40 and 50%. The only downside if that in people who undergo major dental work while on the drug, e.g. root canal, it can lead to some jaw necrosis. It's worth checking out in any event, even if you have to get a "pre-clearance" from your dentist. I will warn you though that I was told that I was lucky to get insurance approval of the stuff, which is usually used to prevent the uptake of bone tissue into the blood stream of multiple myeloma patients, where a monthly infusion retails out at over $800.00, of course that's peanuts compared to what is currently being charged for low-dose thalidomide, another option mentioned in the article.

Another area mentioned in the article is the use of anti-inflammatory agents. Although not specifically mentioned in the piece, one class of drugs under that heading that has attracted some attention of late are the so called "Anti-Tumor Necrosis Factor" drugs. Please see that attached "Successful Treatment of CRPS 1 with Anti-TNF." That said, I am advised that this stuff retails at roughly $1,500.00/month and it's almost impossible to get insurance coverage for it.

In addition to the therapies that are mentioned in the attached piece, there has also been some relatively decent developments with Prialt (Ziconotide). Usually, this is administered as an almost last resort implantable pump for people with intractable pain - it's one of the deadliest naturally occurring toxins on the planet - but one very exciting recent case note by Michael Stanton Hicks, MD, one of the leading RSD docs in the country, demonstrated that a teenage girl with horrible RSD was put into almost complete remission using an infusion dose that was roughly three times the highest recommended dosage. Once again the article appears on the RSDSA Medical Achieves page [http://www.rsds.org/2/library/articl...ve/index.html], almost at the bottom of the page, under the heading of "Treatments," listed alphabetically by author. Regretfully, the file is too large to attach here. I urge you to give it a look.

I hope this is helpful. Rest assured that you are far from having exhausted all of the options out there.

Mike

[debbiehub]

Thanks so much for all of your wonderful suggestions- I really needed a boost and as usual you were all there. I am definatley going to read those article and investigate every ave. I was going to participate in the thelidimide study but my PM doc at the time, told me people were having bad side effect and he felt it wasnt ethical to subject his patients to it.\

Again- Thanks soooo much -You guys are the best!

Debbie

[fmichael]

I wanted the share this as well. Jon Kabat-Zinn, "Mindfulness-Based Interventions in Context: Past, Present, and Future," Clin Psychol
Sci Prac 10: 144–156, 2003.

[moonstar]

hi deb---linda here---so sorry you are not doing well..i know how bad the stress aggravates our condition.. have been thinking of you and am trying my best to make it to the group next month..i had to go for my overnight sleep test this month..and forgot about group..so much going on to try to keep track of what tests they want from me and what dr ordered the tests...my brain keeps going around in circles--and not getting anywhere---hope tonight gets better for you and am wishing you all the best--linda

[WickedGood]

Hop in my boat and be miserable with me!!! I sure could use the company and what better company. We need to destress big time. In fact I think we are going on another ride!! Lets get ready!!!

Chin Up!!! Mark