Long story short, had rsd since '07 in arm.....next year fall in shower lead to spread to foot. So, around Halloween time imwent to an extravaganza bc was having one of my "good days". Friend wanted to go on haunted hayride. I asked 3 staff members if characters touch you at all!!!!! They said absolutely not!!!! So i got on and they ran a running real chainsaw w cover over blade n chain off up n down my back like 5 times. Needless to say, rsd spread to my back n im back in wheelchair n just in miserable pain. Dr upped my meds temporarily. Also, tiniest little movements are just impossible w my back.....anything that requires lifting something heavier than cell phone cant be done.....very limited movements. Even super baggy tshirts hurt bad n bras are definitely out. Anyone else w back rsd that can share any tips or experiences???? Thanks so much!!! Cant even push self in wheelchair n asking mom every time even need a sip of drink is embarrassing n annoying to her.

I am so sorry to hear about your RSD symptoms. I know just how annoying it is and how helpless it can make you feel. When I was real bad I had a jug of water next to my bed with an extra long straw for drinking. My suggestion is, see if you can find a Scenar practitioner or Cranio Sacral Therapist near you. I have just shared some of my info on the forum so if you click on my name and "find more posts" you can read about my approach to recovery.

Tried cranial sacral therapy n stopped bc i was very noticeable worse after each treatment, so dr told me to stop the treatments. It was so strange that her massaging by head made my arm n foot get worse...weird!!

I have RSD in my back. When it first spread there life was just agony. What helped me the most with my back was desensitization which helped to normalize the sensations on my back. I'm still sensitive but am back in normal clothes and bras. I also went through extensive physical therapy at home (to treat my ankle, upper body, arms, and hands). They key with that was making myself USE everything. Doing the therapy at home meant that everything was stuff I could do on my own every day and nothing was too strenuous (no heavy lifting, weights, or anything of that nature). We took it slow and steady...it took months but gradually I was able to start doing things again. I now walk with a walker and am back to working full time. The key for me was determination and dedication to the therapy...knowing my limits but pushing them enough to keep improving...and the DAILY use of my RSD areas.

I had a great physical therapist who really worked with me to reach my goals. It was a real partnership. Insurance only allows so many visits in a year but after a couple of months my therapist trusted me enough to spread the visits out more...coming once every two weeks instead of twice a week. In her one visit every two weeks she would check my progress, give me new exercises to try, and also show me the progression of those exercises if I felt comfortable going further before the next visit. This way my visits were able to last until the end of the year instead of ending in October. I needed that time and I'm glad we were able to work it out that way. But it would not have been possible if there hadn't been that trust there between the two of us. My daily dedication to the therapy was obvious by the steady progress I made and my determination to keep moving forward.

But knowing my limits was crucial as well. When I had a bad day...I didn't take the day off from exercises but I would revert to the very early ones (which were very basic stretches and movements). This kept me from making the flares worse but also didn't let me fall behind and lose too much ground when I had a bad day. I also started out doing one exercise, then taking an hour or two off, then doing another one, etc so that they were spread out all day long. I had a check list to make sure I did them all every day, twice a day if possible. Gradually as my endurance improved I would do 2 exercises at a time...then three...and so on until I could do an hour of exercise before needing a break.

It is a long process...nothing you will see improvement on overnight...but seeing my progress after a week...after two weeks...after a month...it was incredible. And having that person coming to the house (I couldn't drive, stand, or walk at the start) and monitoring that progress was also motivating.

I'm a very stubborn person and I just dug in my heels and said, "I'm going to do this." And I did. I don't know if any of this will help you...but it helped me a lot with all of my RSD areas including my back. They say RSD is a use it or lose it sort of condition and I think that was a huge key in helping my back. Ease into it and know your limits. I highly recommend the at home physical therapy.

I started out with a great physical therapist and that was pretty lucky. But be aware that if you get someone who is the wrong person for you that you should call and request a different one. My therapist was on vacation for one visit and another one came instead...they were awful. If that had been the person who came in the beginning I think my story would be a very different one. My physical therapist was a great listening and wanted to know as much as I could tell her about my RSD, my pain, my triggers, etc. She pushed me...but just enough to keep moving forward and never seemed frustrated by the slow progress. She understood it would be a long process and there was never pressure to get things done or further along faster than it was going.

Sorry that was so long...but maybe it will help. Take care and good luck. RSD in the back is not an easy thing to deal with.