I was told the test would be uncomfortable. The test triggered a weeks long flare for me. I could barely drive home after it, and I had it done an hour away. I cried and literally screamed in pain while having it done and cried all the way home. Had I known I wouldn't have had it done. I never should have agreed to it, and I never should have believed them that it would be a little uncomfortable and gone alone to have it done. It also triggered spread of the diseased into my hip and lower back. I've learned that "a little pinch" and "mild discomfort" generally mean "you'll want to punch me in the face" and never to believe doctors about that sort of thing.

Oh my goodness...that's exactly how I reacted to the test and I have no clue how I drove home through my tears :(

Yes, it definitely can hurt. Some people are fine with it and others not so much. I also think it has to do with who is giving the test. I will not do it again because it did hurt.

My EMG/NCS's were also very painful but, in the end, I was glad that the tests performed confirmed the nerves that were damaged during surgery. With that information my doctors have been able to create the best possible treatment plan.

My best advice prior to this test and/or any type of injections is to find a way to relax yourself before hand and quickly afterwards. I used music, graded motor imagery and mindful breathing to help get control of pain afterwards.

I would be ok with it ifit hurt during the tests and a bit afterwards.....regardless of the pain level. However since the emg (going on 4 weeks) I have shoulder pain that I had never had that is thr same burning squeezing pain I feel in my wrist. And since the eeg I have swelling in my wrist that I hadn't had before.....it's the last effects that scare me.

Lidocaine patches are not narcotic. You should at least try them!

I think I've had 3 EMGs and nerve conduction tests since developing RSD The last few were because of WC docs. My treating physician advised strongly against but we worked out a plan so I could go ahead and not jeapordize my benefits.

I arranged to have a stellate ganglion block if I had too bad of a flare for the last one. The tech stopped it after a few minutes because she realized what it was doing--she wasn't a fan of torture... I immediately put a Lidocaine Patch on and used them for about a week. I made sure I was driven there because I 1)knew it wouldn't be safe to drive home, and 2)so I could take break through pain meds. It took me 4 or 5 days to get back to normal, which I count myself lucky for.

You will have accidents that cause flares if you have RSD long term. You'll be rear ended, or slip and fall, etc. You need to have a plan when those things happen to avoid spread. Everyone reacts differently to " life savers" and you'll need to experiment. See if a tens unit helps you, try massage, etc. BTW, make sleep a priority. Check out the "Life Savers" sticky for lots of ideas!

It's crazy for you not to have any meds. If I were newly diagnosed I would start with low dose naltrexone to see if it worked for me. http://painsandiego.com/tag/rsd/
Along with the aforementioned Lidocaine patches. Then I'd try some of the nerve meds and/or antidepressants. Then perhaps try Ketamine cream. And so on... This is not an illness you should try and white knuckle it through. Being stoic and refusing meds (or having an idiot doc that doesn't know what to prescribe you) is not giving your body any chance at relief--which you need!

As horrible as RSD is, the more you can contain it, the easier your life will be. Make a habit of researching all procedures and tests before consenting. We DO NOT respond all the same, and docs will swear up and down that such and such can't cause a reaction, when you'll find it does to some RSD patients And that's not to say you can avoid every potential flare, but you should know the risks and be prepared.

P.S. I'm pretty much pain free in warm ocean water, and warm pools aren't quite the same, but still offer some relief. If you have access to either, see how you respond.

I am post post surgical and newly diagnosed. I think the drs are still trying to devise a strategy. I go tomorrow to see what the plan is. I love warm water but live in frozen pa...short of living in a tub or moving I don't have much chance to be in warm water. It however is very very soothing,

One thing you can do is anytime your doctors suggest a test or medication - come here to this forum and do a search for what ever it is that they want to do or try. If you see lots of posts of people having bad reactions, then you can think about talking to your doctor about other options.

:grouphug:

Unless you went undiagnosed for a long time, then it's urgent that you start an aggressive treatment plan for the best chance at remission.

And for RSD/CRPS your docs must be experienced enough to know what to do during your first appointment. IT SHOULD BE TREATED AS URGENTLY AS IF YOU HAD CANCER, IMO.

I'm sorry, but I've just watched too many people over the years see that first year slip away, and they've subsequently regretted that they'll never know if missing that first year window could have changed their life.

And, if you get relief from the tub and that's you're only access, than make it a part of your routine every day. (But you also might want to check your local YMCA, Easter Seals pool, etc.)

Hannajane,

Please please listen to LIT LOVE. They are absolutely 100% correct. When I was newly diagnosed I was in a similar boat as you - I was post-surgical, went through a bunch of tests, couldn't walk, etc.

Everything I read and knew intuitively said to throw the kitchen sink at it, NOW. But I could not get any traction with the medical community for PT, OT, counseling, or any treatment modality whatsoever beyond nerve blocks and a revolving menu of drugs.

I'm fully recovered from RSD now. I took a big risk and went solo - no more doctors. I felt that was the only choice I had. I'm NOT saying it's the right one for everyone. It would have been much easier to have a doctor to support me but it wasn't in the cards.

Here is a complete list of things I did during my recovery process in the hopes that some of them may help you: http://neurotalk.psychcentral.com/thread205597.html

This has not been proven, but I believe that the primary cause of spread is excessive free radical damage. Poor bloodflow caused by inflammation results in further damage to the effected area, plus a diminished ability of the cells to remove free radicals generated during their normal metabolic process. The original area of damage then produces an excess of free radicals that are free to travel throughout the body and become trapped in small capillaries (typically in other limbs.)

If I were you, I'd look hard at DMSO and NAC. Both are potent free radical scavengers. The Dutch treatment concept is simple: eliminate free radicals at the source using DMSO. Free radicals that make it out of the injury site are eliminated by NAC. "DMSO for the site and NAC for the spread."

Here is a link to some supporting Dutch research on DMSO and NAC:

1) 2002 DMSO/NAC study http://www.rsds.org/pdfsall/treatmen...ee-radical.pdf

Mirror therapy was another key to my recovery in getting range of motion back and retraining the guarding impulse. I did mirror therapy for 10 minutes on the hour at least 5x a day.

2) http://rheumatology.oxfordjournals.o....full.pdf+html

Obviously take my non-physician's advice with a grain of salt - but I'm only here to help, since I couldn't find anyone who'd actually recovered from this thing when I first got diagnosed. :)

But again - LIT LOVE is 100% right - taking action NOW is crucial.