Outside of heat...the best things for me have been the TENS unit, physical therapy, and desensitization (which I did on my own). The TENS unit is one of the few things that makes any really noticeable impact on my pain levels up to this point...bringing my pain level from a 9-10 down to a 6-7...to start at least. The more I do, the higher the pain level gets until it is back up to 9-10 regardless of the TENS. But the pain relief I got from the TENS allowed me to really do the physical therapy and has been the difference between me being able to do the exercises and not being able to do them (especially in the beginning).

Physical therapy was a very very slow process. For my hands...the best things were actually making myself constantly move my hands throughout the day despite the pain. As much as possible I tried to do things which require precision in movement...like cross stitching and working on puzzles. I was SO frustrated in the beginning because I could not stitch hardly at all and I couldn't hold the fabric or get the stupid needle to go where I needed it to go. But I kept doing it everyday and slowly it got better. It's still not like it was....but I can usually stitch for up to 30 minutes at a time before I need to rest my hands. Puzzles were something my physical therapist recommended and when I wasn't making much progress with the stitching the puzzles were a good alternative. She said that the precision you need to put the pieces in place is actually good exercise for your hands. Typing was another things I tried to do as much as I could stand...staying active online and communicating on here and other forums and keeping in touch with friends were all good activities for that. But when the pain was too bad to do any of those activities I would at the very least flex my hands....making fists and then opening my hands and spreading my fingers. I still do this if I have a bad flare in my hands...I know I have to keep them moving or risk losing the function in them so I just make myself do it regardless of the pain.

Desensitization was very important for me too. When the pain spread to my entire upper body I really could not stand anything at all touching my skin. I couldn't even lay on my back or lean back on the couch or anything because I was so sensitive. But I slowly started to make myself do these things. Just a little bit at a time at first. I would lean back on the couch with my eye on the clock and do it for a minute. Then the next week up it to 3 minutes...and so on. Then I started trying to wear more normal clothes. Here I started with looser clothes and gradually worked my way up to more normal fitting clothes...with my crowning achievement being my ability to finally wear a bra again. This doesn't make the pain go away...but you get used to the sensation and develop a new sense of what normal is that makes it easier to deal with.

A lot of these are things that you need to start small with and then work your way up. Sometimes physical therapists just don't understand and will start you off with too much too fast. By doing my exercises daily I was able to gradually add more and more (whether it was time or difficulty or weight) which kept the progress moving forward without big setbacks. This was helpful for me mentally too because I could tell I was making progress when I could stand for a minute instead of the 30 seconds the week before or I could lean back on the couch for 5 minutes instead of 1...those sort of things were measurable and it helped me keep my mind in the right place and helped motivate me.

I had the blocks done...not only did they not help but I experienced spread after the last one.

I am a new member and this is my first post. I am going through a difficult time after becoming inflicted with this dreaded disease October of 2011. My background is unique as I am a pediatric physical therapist who has treated CRPS (RSD) for over 12 years at a very prominent children's hospial. I have also been exposed to all types of pain as I am a leukemia and Bone Marrow Transplant Survivor. I now suffer from Chronic Graft versus Host Disease which presents another complex overall pain distibution. Adding my orthopedic issues (bilateral ACL reconstructions, having my wrist (radius) grafted to my thumb after crushing the bone in a basketball injury, separated shoulder, etc ), I believe I have more empathy for my patients and fellow pain suffers than most.

I look forward to building relationships with those in this group and hope I can learn from and help others with my experience. To directly respond to your post, you are not alone. I have been perscribed a cream with a mix of gabab, keta, clon, and lido and it has helped a little with the constricted blood vessels that keeps my right hand freezing in temperature. The burning pain, increased sensitivity, vasovagal response, and decreased function has not improved to this point.

Remember: If the saying "what doesn't kill you makes you stronger" holds water, then everyone in this forum are bad *******.

Good luck to all,

Mike

wow, it sounds like you really do push yourself. I do something with my hands everyday, except on really really bad days, but not things throughout the day because I am still in school, and I know I need to stay there as long as possible.
How old are you and how long have you had rsd? ( sorry if u have stated this before).

I am 28...I was 25 when I first got RSD. It started in my ankle and then in February 2011 it started to spread to my upper body and within a few months it affected everything between my waist and my neck including both my arms and hands.

Do you keep your arm immobilized or protected while you are in school? If not...then you are probably getting a fair amount of use and exercise just getting through the day. If you are...then I would say you might want to try doing a few exercises as you sit in class (if you can...I know in the beginning it hurt so bad I couldn't see straight and I imagine you need to actually be able to pay attention in class right?). Or maybe during your lunch hour...even if it's just making the fist and spreading the fingers.

It's a really hard thing to balance the exercise and the rest...only you can know for sure what is the right amount to push yourself. If doing things while in school isn't possible then that's okay...just make sure to do what you can when you are home. It will all be slow progress especially in the beginning anyway. As you improve and can do more things then you can re-evaluate whether you can do stuff while you are at school. Summer is coming up too in a few months...do you have summers off? You will have more freedom to develop a routine for your days.

Just do what you can to keep moving. Some days it won't be possible...I know when I have bad days I revert back to the old exercises from back in the beginning. Just don't let yourself be frustrated by things like this. I like to think of it like I have my regular routine and my flare routine. My boyfriend likes to say that it's a good thing I am so stubborn...because otherwise it would be a lot harder to push myself. I "think" he means this as a compliment...but maybe that will give you an idea of how I approach it.

When I first started I made a checklist of the exercises that my physical therapist gave me and when I first started my goal was at least one check mark a day for each one...then two. This helped me get into the routine of doing these things each day and at the end of the day I could go over what I did and didn't do. The harder exercises (as they were added by the physical therapist) I might do every other day at first and work my way up to the daily schedule. I don't do the checklist anymore but it's habit now to go through my exercises during the day.

Has anybody heard of or tried tDCS? Transcranial Direct Currant stimulation? Just read about it when googling RSDS. I have an undiagnosed neurological condition and sympathize with you all. Thought I would share this info.

Glad you found Neuro talk. You will indeed get responses to your quesitons here. Alot of folks have experience with RSD, and the device you mentioned. Keep posting, and they will give all the information they can. I have cervial issues, and stop by to say hello. You found the right forum, so I expect you will be hearing from people soon. There is lots of support here emotionally as well. Feel free to explore this whole site, and talk to anyone you want. There is also a private message place. Welcome again mom, hope to see you around these boards. ginnie

YES! Check out the following link:

http://neurotalk.psychcentral.com/thread160980.html

This is where those of us on this forum who have been using the device post about our progress and how things are going. Please feel free to ask any of us any questions that you have. The thread is long and starts off with ballerina's journey and then there's information posted from others who have tried following her example. I have been using the device for a little over 4 weeks now and I am very happy with the progress and I recommend it to everyone I can.

Once you have posted enough you will be able to send/receive PMs and feel free to contact any of us that way as well. But by posting on the thread you can reach all of us at once and of course then others can benefit from your questions and the things you find out and are able to share. Welcome!

I just found this site and am not sure quite how to maneuver through it. I had RSD in my right hand 8 years ago after falling and fracturing my wrist in 4 places. After 1 year of aggressive physical therapy it went into remission. At the time I thought it was simply awful but I managed to pull through it as it didn't hinder my daily life aside from the pain and inconvenience of therapy 3 times a week. 2 years ago I had a surgery to remove an artificial joint in my big right toe. I had a donor bone put in and was in a cast for 3 months. Well...BOOM...it came back with a vengeance. My right foot and leg up to my knee is in full throttle now. I cannot walk...much...and have pretty much been in bed for 2 years. I've had plenty of blocks of all kinds, therapy, spinal cord stimulator that had to come out after 2 weeks due to an infection, and plenty of hard meds.
Fortunately, my family is pretty much on board with me. For those who are not, I simply ask them to take the challenge: I will provide all necessary supplies: sandpaper, a hammer and some ice cubes. I ask them to scrub their skin until it's raw, give it a good hammering then plunge in a bucket of ice cubes. Funny, I haven't had anyone who opts to see what that might feel like for them. For me, it is unrelenting 24/7 hell. I'm not exactly sure how I am living because most of my life seems a blur. I know that The Lord has his hand on my life but at times I do find myself in despair. None of the traditional meds work for me. I just tried acupuncture and that didn't work either. My pain Dr. Has done pretty much everything there is out there so I'm not sure where else to go with this...he has me on the strongest med regime there is which marginally helps but not enough to keep me on my feet. If anyone out there have found something that works, let me know!

Hi Riosue,

I am also new to NeuroTalk and finding my way around too. I am so sorry to read that CRPS came back. That must have been unbelievable. Your being in a cast for months sounds familiar as I was in a cast then air cast boot for months. There is question that the immobilization caused or contributed to getting CRPS. CRPS rules my life too. Started in right foot from tendon surgery in 2007. Wasn't formally diagnosed until 2011, which was too late for nerve blocks to help. Considered stimulator but found lots of bad stories connecting with folks and decided against it. Mirrored to left foot and hands too. Also diagnosed with Erythromelalgia and Small Nerve Fiber Polyneuropathy and everything is basically in hot frostbite 24/7. Nice big diagnoses names for me but no cause found so pain management is the name of the game. So happy to hear you have support from family, I do as well and they have gotten me through. I LOVE your suggested way of dealing with folks who don't get it! May I use it as as a way to deal with mine? Not many but a few. Showing pictures of my feet grosses them out and then they get it.

Have you considered Calmare, scrambler therapy? You may have researched it and decided against? I had it and am happy to share information if you'd like it. It did work for me until Erythromelalgia struck. I would be very interested in learning which meds you are on. I've tried lots of them and current regime softens the pain a bit so I can function.

You have landed in a great site! The RSD group has lots of members, who I have found to be very supportive and understanding. Other forums may be of interest to you as well.

I hope you are having as good a day as you are able! Write anytime!

Deb

Yes, and welcome to the group. HUGS

I had very similar experiences from my family, and people over the years though I have had this beast for 25 years. A family member actually told me the same, that I caused my RSD! I already had RSD in one limb from surgery 25 years ago, then I had surgery in another limb about 8-9 years ago and RSD immediately spread - got into- the new surgery site full blown. My __ blamed me for it, and I was, and have been, living alone since I was 18. So I was alone, and had no support except a sister who understood.

I have found that no one can possibly get what we have if they don't have it, but that there are kind and loving people who won't think you are faking and will take you seriously. Don't let anyone ever make you feel like you are faking it. IT IS the most real thing ever, it seems unreal but it is every bit as real and nasty as you think. That being said, there are people who get some relief, help, reduced pain, and new things are happening in RSD like Ketamine (not so new) etc. SO there is always hope.

Try and find a few people that are kind and caring, and focus on doing all you can do to manage the RSD best as you can. We are not alone, we are part of a rare club (the tougher than tough, the warriors, the survivors) and we are here for eachother. I do believe management of RSD will get better and better and that there is a lot more awareness than 10 or 20 yrs ago. A LOT.

Hang in there, and don't waste too much energy trying to convince others how real it is, save your energy for you, and find a few good people to connect with. Online is a huge help. I found that the men in my life, believe it or not, were way more understanding than even my friends and family. I mean boyfriends, male friends. Odd hah? And my friends are awesome people, they just have no clue what I deal with on any given day.

HUGS and hang in there, and keep reaching out, you have to get the feelings out in my opinion, in a safe place helps too. HERE. I used to and still do scream and yell and cry and then I get myself together and find something to laugh about, enjoy, etc. RSD does not own me...:-) It aint easy, but we are the strong, and we will survive.