Hi Tina. Sorry to hear you are having so much trouble with the doctors. I live in Indiana and I have been to at least 12 in the last 18 months and most of them do not know about RSD so I feel your pain (sorry for the pun). Anyway, I got so frustrated I made the six hour trip to see a specialist at the Cleveland Clinic. It was an excellent move on my part because I finally got to see a doctor who has been treating RSD for years. It made a big difference just to walk in and not have to explain to yet another doctor what it is I am dealing with. However, the distance makes it hard to have continuous medical care so it is a trade-off.

I too developed RSD from the the transposition of my ulnar nerve, but only in my left arm. It started up right after the first surgery and (stupid me) I had a second surgery in that same arm in the hopes of easing the terrible pain. I did not know at the time of the second surgery that I had RSD. That became much more apparent two weeks after the second surgery.

I struggle with meds and what works and what doesn't. I swear it depends on the day - sometimes my meds help, sometimes PT, sometimes heat and sometimes none of the above. I do know that for me when I am miserable I take my $3.00 scrub brush and scrub a glass cutting board on the kitchen counter. I swear, something about the compression and the routine of going back and forth (just like you were bent over scubbing the floor) helps to reset my sympathetic system just enough that I can get some relief. I tend to do this for about two minutes, and depending on the day, sometimes 4-5 times. You might be able to take a little scrub brush with you to work and scrub on the counter, curb or anywhere you can. I learned this from a hand surgeon. It is particularly helpful for those with ulnar nerve involvement.

As for the blocks, I chickened out and did not do them. From what I have read, it seems three blocks is the magic number - it will either help or not, without doing harm. I think if it doesn't help, then the pain is not SMP (sympathetically maintained pain) but is considered SIP (sympathetically independent pain). This is what I have been told from several doctors. So even if you don't feel you have benefitted from the blocks, it does give you and your doctor some valuable information.

Good luck and I am hoping you have better days.

I really appreciate hearing from someone who has had the same thing done to their arm that I have and I hope and pray for your recovery. IF this doctors helps as much as it sound like he might, then I will be happy to give you his information and maybe you can drive to Louisville to see him. If you want I can send it too you now, just let me know. Don't know if it is any closer. We have family in Cleveland, so I know about the drive there, very long and boring.

I had the second block yesterday, I can not talk very well, my throat is extremely sore and I have some pain going down my throat and up into my jaw and ear. But my arm is NOT having the burning or the throbbing from my shoulder down into my fingers. Last weak it lasted about 2 days. I hope this one lasts longer, but my throat really hurts. The doctor told me that it probably would.

I do the scrub brush things also. It does seem to help releave some of the tighness, which I think plays a big part in pressing on the nerve and I also try to use heat, but that sometimes just irritates it more. Sometimes putting an ice pack on the back of my neck helps. It does not touch my shoulder or arm but the cooling affect not only helps loosen up my mucles but it also helps releive some of the headaches that I get.

I seen the doctor on Friday and he said we are going to do a total of 4 blocks. I go back to see him on Oct 3. I start physical therapy back up tomorrow and hopefully with the blocks and the PT then maybe if will be even better. The doctor who actually performed the block said the PT with the blocks is crucial. So, we will see what happens.

I will keep you all posted.

BTW, we are in Louisville and I am one of the people without electricity from the Hurricane IKE. Never thought we would have a Hurrican in Kentucky. They are telling us it will probably be 2 weeks before we have power back. So, I can only get on the computer at work.

Take care and I will post again soon.

Tina, I sure hope you find help with this new doctor. I would really appreciate your feedback and his name if you think he is good. I am so pleased to hear the good news about this second block you just had done. I think you have a really good shot at getting some pain relief. You are under a lot of stress right now this the loss of power so I can't imagine how you are dealing with having a block on top of the other problems.

I am scheduled to consult with a pain doctor (anesthesiologist) at IU Med Center in Indianapolis (I live close to Indy) next Tuesday, so I will let everyone know how that appointment goes. I saw a neurologist at IU Med Center about six weeks ago and he thinks I should still try the stellate ganglion block; that is how I got referred to the pain management group. I have had RSD for almost two years so I don't know if I can even get any help from a block at this point. How long has it been for you since you got RSD to when you had the block. Is it a full three years?

Oh, and you mention the headaches. Oh yes, I have those too along with the deep pressure in my arm and around the ulnar nerve that radiates from my collarbone, into my shoulder and down to my pinkie. It is miserable. I sure hope the block lasts a long time for you and that you get permanent relief. That would be so exciting.

Please let us know how you are feeling. Good luck with the clean-up after the storm. We had high winds in Indy but not too much damage. Going without power like that is so rough. Thank goodness it isn't cold. Gosh, I would die without my TV to distract me at night. Nights are the worst for me. I don't sleep well and I use TV as to distract me so I don't bug my husband with my pain and insomnia. I am hoping things get resolved for you quickly,

Coffeebean

Hi Lisa,

I saw your post and wanted to say I am glad you have an appointment with IU Pain Management Clinic. And especially with an Anesthesiologist. Please let us all know how it goes.

And weren't those winds something else? I was keeping an eye on my pool the whole time but eventually just turned the pump off and let everything fly and land where it wanted to. But no damage was done.

Hang in there and again, let us all know what the pain doc(s) had to say.

Kathi

Kathi, weren't those winds terrible? We have so many sticks down in our yard I can't believe it. I sure hope you didn't get any in your pool. But I can't complain because we have power. I would just be miserable without it.

How are you doing? I have been miserable with pain in my arm and neck this week. I think it was from doing too much last week when I helped my daughter. I just got back from the pharmacy and I am amazed how restricted the mobility is in my neck. I don't know if it is from my arm or neck issues, but it sure hurts and I feel like I am 120 years old! Too funny.

Oh, I just read an article that addressed the issue of cutting out caffeine to reduce pain. It makes me feel so guilty because I was enjoying a McDonald's coffee while I was reading it. I think I am going to set a target and try to wean off of the caffeine. I wonder if it might help with the pain issues. I really love my coffee, I think it may be my only "fun" thing anymore, so it will be a struggle for me. But I can always start back up if it doesn't help. It really is a major comfort food/drink for me.

Coffeebean (I'll have to come up with a new name - maybe Decafinator

Hi Lisa,

Nope, no major damage. But I did have a lot of sticks and leaves and a few big branches lying around. One small log ended up in my pool. Overall, not too bad. I feel sorry for the ones without power; I know over in Ohio all the generators have been bought up in certain areas. The same thing happened when the tornado earlier this spring came too close for comfort. The addition just two minutes from me was without power for days on end and people couldn't find enough generators.

Anyway, your neck pain COULD be contributing to the arm pain. Especially, since there is an issue with C5/C6 which can refer pain to your arms. I know what the NS suggested but maybe you could talk with a pain doc first. I think I would go so far as to talk to Dr. N. again. I really would. Only because I know he is good.

You make me laugh about the caffeine. But it is true. When I reduced it to almost nill, the neuropathic pain really lightened up. But hey, with all the stress I have had the last two months I started drinking iced tea again and too much of it. But I was only drinking it to stay alert enough to deal with all these contractors coming and going while working on my kitchen and pool. I am telling you I had to watch them like a hawk! So, no naps for me. Anyway, I will get back to where I was pretty soon here.