Last year I was dx d with crps II after rib resection. My rsd is right hand arm breast neck and right upper back. This January I had a multi level thoracic laminectomies to remove a tumor. My pain, almost 3 months later is through the roof. I can't touch the skin in the middle of my back, firm pressure is tolerable but the slightest touch sends me through the roof. My back burns from the middle down my back and rear. My right leg and foot intermittently burns. I am super stiff and have a hard time initiating walking. My hips are killing me. I have a hard time bending as well. I hate going to bed because I can't sleep and I feel like I'm getting worse everyday. My surgery was extensive to what I was told, I went without pain meds twice for over an hour and admitted to icu for pain control. I'm wondering if this thing spread or I'm week from surgery? I thought I'd be getting better instead of worse just like my first surgery. I haven't noticed any swelling or color changes like my arm and hand. My ankle is but I only notice because my sock line is always there. My right foot feels colder but to touch seems the same. I have no help here and I'm about to lose my insurance unless I return to work. Bad situation. Any ideas? Anyone have rsd in their back? Thanks.

I have RSD in my back...whole upper body in fact between my waist and neck (including both hands and arms) and this was all spread that happened after I got a lumbar sympathetic block (to treat the RSD in my ankle...go figure). So it is definitely possible that surgery could cause spread. The RSD in my spread areas feels the same as in my ankle (allydonia, burning pain, etc) and is triggered by the same things as my ankle. But some of the other symptoms were a little different than what I experienced in my ankle (where the RSD first started). My foot tends to turn dark red/purple...but my upper body just gets slightly red like a slight sunburn (wasn't outside at all to get one and was certainly always covered up so wouldn't get burned in that whole area anyway). I also haven't had as severe or as often the temp changes...but I think part of that is because I have been treating it properly from the start (no ice, desensitization, etc) where as with my ankle they had me immobilizing and using ice from the beginning until I got the dx of RSD 6 months later. So even though it FEELS the same in a lot of ways...some of the symptoms have presented a little differently in my spread areas.

So...it is possible that this is spread of your CRPS. Have the doctors been able to give you any help at all...do they have any theories or are they stumped? Couple of things that I would recommend.

1. Keep moving. I know it hurts and is hard but the more you give in to not moving, the worse the pain will get, then you will move even less, and the pain will get even worse, and so on. With your feet and legs, even things as simple as heel and toe raises while sitting or drawing the alphabet with your foot or toe crunches while you are sitting can be a good place to start to just keep yourself moving. The more you immobilize, the worse some of the other symptoms will get.

2. For sensitivity to touch...try to do some desensitization. I would take something like cotton balls or light fabric or whatever and rub it on my RSD areas. It will hurt...ALOT...but over time you will notice that you have less and less severe reactions to it and the sensations with start to normalize. It's hard with the back...I had my boyfriend help sometimes and a lot of the time it was me trying to wear more normal clothes. First I could only wear a normal shirt for 5 minutes...then it was 10...then 20, etc until I was to the point I am now where I can't wear tight things but I can wear regular clothing most of the time.

3. Warm baths with epsom salts can be really great. They help me a lot and I have started to do them twice a day and its amazing how much a difference that can make in helping to soothe the pain when not a lot of other things do. It doesn't go away but it does take the edge off. And when you have it in your back that can be a pretty difficult place to get relief.

4. I highly recommend trying out tDCS. For about $300 investment you can try this treatment at home...it is not invasive and has no real side effects. I have only been using it for about 3 weeks now and I have already noticed some improvements in the pain and function. There is a long thread on here about it...definitely check it out.

If you have any other questions...this is a great place to ask them. EVen if you just need to vent...everyone here understands and is very supportive. Take care and good luck.

I can't even thank you enough for sharing. Like the beginning of when I was first diagnosed my mind is getting the best of me right now and I feel crazy. I'll look into your suggestion for sure. As far as docs, I can't see my regular doc because if she knew how bad I was she would refuse to let me go back to work in 3 weeks, I had to beg her last time. I see the neurosurgeon next week but the only I can get from them is physical therapy which I'll take. I had stellate blocks in my neck that didn't take and there isn't much help where I live. I do move as I lost the use of my hand the first time by guarding it and experienced the hell getting it to move again when I discovered I HAD to use it. Desynthesying, no way. I worked up to wearing a bra and can tolerate firm pressure but forget purposely trying to brush against my skin. I noticed I have a sunburn appearance too but played it off and it's interesting to me that you mentioned the same. I know I'm in a grieving process right now. Pain pills help but I'm not supposed to work on them so I've been trying not to take them, then I do and beat myself up for it. Vicious cycle. I believe I'm fighting myself in hopes the old me will return and to afraid to give in to the idea this is going to stick around. I function with the original rsd sight and learned ways to help it, but I have no idea how I'm going to fake it at work this time. Then all the worries, what if s of if I lose my benefits, job? That scares the hell out me. I'm so sad. I was a backpacker, I ran, I took care of people for a living and love it and now? Fighting not to become a burden to my husband. Fighting not to lose all of me. Thank you again I'll check the link.

I was/am a very active person too. The past year has been a nightmare for me being stuck in a wheelchair for most of it and unable to leave the house one my own for the rest of it. I finally have some freedom back now with the walker and have been able to improve my endurance and strength enough to go out for stretches of time.

I'm not sure where you work (big company, small, etc)...but you do have a permanent disability. Have you considered asking for accommodations for your disability? You would qualify under the ADA I think (unless your employer is very very small) and one thing that has been considered a reasonable accommodation is unpaid leave unless they can show that it would cause the business undue hardship to grant it. At the very least, they are legally obligated to engage with you in an active discussion about what sorts of accommodations they might be able to make. Maybe there would be some adjustments they could make to the work environment or the WAY you do your job that could make it easier for you (like additional breaks or whatever). Not knowing what you do it's hard to come up with something more specific to your situation...but there are lots of things that you are entitled to under the ADA that lots of people don't know much about. But you have to ask for the accommodations...at least start the dialogue...and that may provide you some relief in stress and worry about your insurance and stuff. Unpaid leave wouldn't help financially...but it would protect your job and your benefits while you undergo necessary treatment so you can focus on your health. We all know how stress can make things even worse for us so even taking that one burden off your mind could be really good for you.

I dont have back rsd. But wanted to say that I am sorry for the pain you are going through. It definitley sounds like your meds aren't doing it for you.

Thank you both. I work in a hospital as a respiratory therapist. My job is physically and mentally challenging and they have a specific list of job duties I must be capable of performing. (including 12+ hour shifts) I'm scared to go to hr because it will raise flags and I don't want to be seen as a liability at risk of losing my job. I would be able to find another job here. I'm quite uninformed about my rights and not sure who to talk to. I was out 9 months dealing first surgery, went back for a few before the tumor was removed. Now I'm coming up to the 3rd month mark of being off and my insurance, which is now 100% coverage, is being threatened if I don't return. I got away with avoiding certain things last time, ie chest compressions and intubating, but now I barely move without extreme pain let alone sleep. As far as meds go, if I took Percocet on a regular basis it would help but how can I work on narcotics? neurotin made me hallucinate, cymbalta was ok, but no real changes, ldn put me in muscle contractions, nerve blocks didn't take haha. I don't know I'm so stressed. Bottom line, I will return to work and do the best I can until challenged by my behavior. Top priority will be perfect care to my patients which will mean slowing down so I'm able to think appropriately and not miss something that can be the difference between life and death. Do either of you what type of attorney can give info regarding work rights? I'm really not ready to give in to the idea of fighting for disability.