[suebear6]

Any suggestions for total body burning (face, head, legs, arms) and every muscle in body cramping? Not a fan of drugs. Maxed out on steroids from nerve blocks that didn't help. massage & heat are good but not helping enough. The second you stop massaging the muscle just cramps again. TENS & estim just electrocute me and make it worse.
Anyone tried craniofacial or hyperbaric or ANYTHING that calms it?
Just found this group so haven't read through too much yet.

THANKS!!!!

Sue

[daniella]

Hi welcome and sorry about your pain. I researched HBOT cause I was going to do it but did not end up just cause I felt it was not going to do much but everyone is different. Do you take baths? I find them helpful and some find epsom salt baths helpful. I also take magnesium supplements which I guess is supposed to help with cramping and have started taking more omega 3 and my pain doctor suggested vitamin c. In terms of meds I don't take any as needed but was on for awhile neurontin etc and klonopin I tried to help relax the muscles etc. Have you looked into meds like that? What about pool therapy? Are you under the care of a specialist for rsd?
Sorry I can't offer more. Hope you get relief

[catra121]

The best things for me for the wide spread burning pain and spasms is taking a hot bath (usually with epsom salts) and then using an electric heating pad. If the pain is too wide spread for a heating pad them maybe an electric blanket or mattress pad would be something to try? Also...maybe an infared heater (I think that's what it's called). I've heard this helps some people get that deep heat without it heating up the room or anything.

Also...maybe heated clothing of some kind? I have been wearing Columbia Omni Heat clothing and it seems to help a little bit. Nothing takes it all away though and the clothes don't help at all with the spasms.

Sorry I can't be more help as I haven't had any experience with any other therapies for the spasms and am not taking much in the way of meds these days after I ended up with seratonin syndrome last year from them. I know how miserable it is to have this happen and am just happy the spasms are not all the time or I would probably go completely insane.

Oh...what about lidocaine cream/patches or anti inflammatory cream/gel? I have Lidoderm Patches and Voltaren Gel that I use in combination with the heat sometimes and it seems like the combo helps the pain more than either one alone. Hasn't made the spasms any better but does help with the burning pain.

[dshue]

Sorry to read of your issues.

I went through the same thing, with my arms, legs, back, and face all cathcing fire as if covered in gasoline and then sparked with a match, which occurred four months after my initial trauma.

But I have found a drug which works for me. I take 300mg of Mexiletine 3x daily, and it does keep my burning under control.

I also take the supplement Acetyl L-Carnitine, 500 mg daily.

Hope this helps.