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..

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.

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

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.

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.

Hi, I am new to this site. I've been diagnose with CRPS for 4 years, but I think I've had it longer. It's primary focus is my right hand, but it really starts in my right eye and ends at the bottom of my right foot. So, I have tried a few 'fashion statements' for helping this disorder, too, and I appreciate this question. There are so many good ideas posted already. But, I haven't seen this one: I often wear a large scarf, like pashmini, or cotton, depending on the weather. I can't tolerate even a breeze on my arm, so I will take the scarf, use it as a shawl, and drape it over my arm, when I need extra protection, or my arm is cold. I can also 'loop' the shawl around so that I can prop my arm when it gets really tired. I have found this to be very helpful.
The other ideas mentioned are ones I use, too: TENS unit, adhesive heat pads, hot water bottles, capri yoga pants, shirts with sleeves that are not too tight or too loose, and I also layer my clothing because I can't regulate my heat, either. It is very important to move, too little or too much moving brings on more pain. I dress so I can move.
Thank you for all the good ideas that I've read.

Hi! I recently found "dreamweight cotton" shirts at Express (buy one get one half off right now). they are super-soft cotton shirts that are really flowy. My RSD is in my chest, so they are great because the material is so soft that if it touches my skin, i don't want to cry quite as badly...but it doens't touch much because they move away from your body. they are great! they come in tank tops and short-sleeves. I bought 4 tops and will be going back for more soon because I love them so much!

Also, grandpa's garden inc. is a great company that sells hand/foot mitts (stick in micro and then put right on hands/feet. They also sell these great shawls that you put in the micro as well! Feels great when my whole body is cold, especially putting it into bed a few minutes before i get in...it's long...goes from my neck to my waist when I lay on it.

Hope this helps!

Hi from another (single) mom in pain.
First off I think its best to be as honest as age-appropriately possible with your child(ren). It's so important for them to realize this problem has nothing to do with them. Thank goodness they are there to remind us of what's important and to put a smile on our face!
Now... to what helps me! I guess I'm different from most everyone else w/ RSD, but the only thing that really helps me (besides meds) are ice packs.
I put them on my lower back (most likely the source of my RSD),and what ever area is flaring up at the time. I usually have 3 on me at all times (shoulders, legs, even feet!). Heat only helps when I'm having mega-back spasms! Unfortunately, it's harder too keep ice packs frozen in the real world than it is to keep heating pads/ hotpads hot.
I have found bed rest, massage,whirlpools & stretching to be helpful.
Also, as strange as it may seem, sometime I ask my son to tickle my feet or arms when they hurt badly. The change in external stimuli really helps (one dr. thinks this is why ice helps me!).I think you're quite smart in getting as much info early on & finding out what works for you.

Just be careful about the constant use of ice. After my shoulder surgery, the only thing that would help my arm was ice packs and I used them constantly at home and while at work, round the clock becuase they were the only thing that gave me relief. From back injury rehab therapy I know that when you ice something, the cold impulses and pain impulses compete with each other when traveling to the brain up the spinal cord -so ice decreases the amt of pain felt. I thought the same applied with my pain after shoulder surgery.
I don't know if that was what triggered my CRPS or if it made it worse than it would have been without constant icing. Since then I've read that it can exacerbate CRPS or cause it. I've found that info in several places including Dr Hooshman who specializes in CRPS. I've pasted what he said and the source of the quote here.

Excerpt: Abstract. Complex regional pain syndrome (CRPS) is usually caused by a minor injury, and requires proper evaluation and multi-disciplinary treatment addressing the multifaceted pathological processes that evolve during its chronic course. Patient’s age, the nature of pathology, and mode of therapy influence the outcome of treatment. If at all possible, surgery, ice and cast applications should be avoided. There is a desperate need for research in proper management of CRPS.
http://www.rsdrx.com/Spread%20of%20CRPS.pdf