i got rsd in left fingers up to shoulder and into right shoulder... i havent ever had any pain relieve.. my doc says he can no longer help me since the blocks dont work for me..can anyone give me any ideas? im so despertly hurting all the time.. have tens unit and it makes it burn more.. heat is too much.. and cold is even worse... im slowly starting to lose the right arm as well.. im really starting to get scared..

I've had RSD for 9 years.

I use pain meds and my Goldilocks method (jenough use of my effected limb to thwart atrophy, while not using it at all when my pain level starts elevating).

Lidocaine Patches are pure heaven for me in an emergency, but the catch is if you use them too often, they stop working. I never use them unless my base line pain hits a 7-8 level for me. I always use them for car trips more than 15 miles or so, and always flying! My right hand is the center for my pain, but for the last 3 years or so I've started slapping a patch on any part of my body I have the beginnings of new, serious, and unusual pain with and it seems to calm potentially new areas down.

Hyperbaric Therapy worked well for swelling I didn't even realize I had (swelling was hiding how extensive my atrophy is) but it is too expensive for me to keep up right now. I did 25 sessions @ $175 a pop. It actually got rid of the pain in my ankle that I had for years that was like a light case of RSD compared to my hand. If you can afford it, I would try it. If it had really seriously decreased the pain level in my hand I would have mortgaged my soul for more treatment...

As for Aquatic Therapy, I have a dilema, our local pool is far enough of a drive to increase my pain that unless I move (a serious consideration), my Goldilocks method says it's a wash. I will say I get SERIOUS relief from warm ocean water, like I'm a normal human again relief. Has anyone else experienced this???

I bought a used Mercedes, to replace, well actually another really old Mercedes that still worked perfectly (my son's luck) because the vibrations from the older car (that no one else could feel, of course) increased my pain base line signifigantly more the newer (also used ) model. I discovered this while my brother drove me in his car. I have to say hands free locks, and the big ignition key help as well. These seem like such small things...

The last of my oddball tips is I've had major, shall I say, plumbing problems from my pain meds. Nothing prescribed worked for very long, and some caused fun, new problems. After starting to eat 1-2 organic apples a day the, cough, problem is gonzo!

Dr. Macnamara at Mayo in Rochester has said a few this as in options to me about my RSD in my left foot. I also have had nerve blocks. They only last a few months for me. Hope that helps.

Funny...LOL I'm the same way..

This is a great question that all of us, even those of us who have lived with this illness for years, will benefit from reading the responses of others. Thank you for asking! As a mom, wife, friend, and Dr. Doolittle to two rescue dogs and four cats, here's my list:

1. Flannel nightgowns year-round, Lanz for winter and Macy's light-weight for summer.

2. Flannel pillowcases, sheets and duvet covers for down pillows and comforters, year-round.

3. Honeywell tower fans, one for each side of the bedroom, year-round, to help with temperature adjustment when you have flares.

4. Born shoes, available from Shoeline.com. Their cushioned sole has the best shock absorption for foot/leg RSD and their shoes last for YEARS.

5. Jeans bought one size too large so that the legs do not aggravate the skin. I have the tailor simply take in the waist. They look cute and are skin-friendly.

6. Forever 21 long-sleeved cardigan sweaters from Forever21.com or stores. They are soft, adorable, and a bargain @ $24. Even on the days you feel the worst, you will have something happy and RSD-friendly to wear.

7. Make-up bag with handles large enough to hold all medications to keep on nightstand. Allows access to meds without leaving bed when walking is difficult and ensures you will not forget to take a required dose. Also makes it easy to take meds if leaving the house for an extended period of time.

8. Tiny purse only big enough for cell phone, keys, credit card, & money to put inside larger purse that holds additional items. Anytime you leave your car, only carry tiny purse to minimize stress on RSD impacted extremity. Leave the larger purse inside the car with the additional items inside available if you need them. This will make an impact on your pain level.

9. Bath & Body Works sleep socks. They're double thickness with non-skid soles, guaranteed to sooth our RSD skin. Look for them during the holiday season.

10. Simply Shabby Chic blanket from Target. Simply the softest blanket ever made for anyone with RSD. Comes in white, pink or sage green.

Those are my Top Ten after seven years of living with RSD. I hope these help and look forward to reading the hints from others.

There are lots of suggestions here on everything from nutrition and supplements to different infusions and implants. things that work for some people may not help others as much and it's a lot of information to consider.

I needed someone I could talk with about treatment options and evaluating them. when I got the advice to see a pain psychologist I was offended, hurt and confused about why my dr would send me. mine helps me deal with my fear and pain. I talk with him about treatment options and although he can't provide medical advice,when I hear about anything, he helps me talk through whether i can be comfortable trying treatment ideas. he also helps me keep track of patterns (good days/bad days and what may help or hurt) we come up with plans for how to get through things like short outings.

I hope this helps and that some of the suggestions here work very well for you!

Has anyone mentioned chocolate? Chocolate, lots of chocolate! Lisa

Thanks for your suggestions. mine is in my arm, but the med advice helps. good luck and warm wishes!

there are pain pumps, spinal cord stimulators (controversial) and other options that another pain management dr can discuss with you. If there's another pm dr in your area, he/she may really be able to help.

are you essentially without spread? did you have scs or pain pump? Thanks!!