"Butt pain!"

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"Butt pain!"

Postby susanp » Wed Oct 30, 2013 9:29 am

Hi everyone!
I haven't posted for a while because I was doing pretty well. I have a thoracic syrinx from t5 to t10 or l1 (depending on the MRI) and 2.5 mm wide. I also have a very unstable si joint. I recently went to physical therapist for pain in my left buttock. Something she did during the evaluation or treatment caused my syrinx to reflare. I saw my neurologist who thought the syrinx was probably damaged, so she upped my meds and put me on a 14 day regimen of steroids. Nothing has helped. I have a combination of burning pain and what feels like a swarm of bees stinging from my waist down. I can deal with most of the pain but the worst part is I cannot sit without being in extreme pain. The only way I can sit is to sit on ice packs. I now take 800 mg of neurontin 4 times a day, 30 mg of opana er 2 times a day, 60 mg of cymbalta once daily, 10 mg of baclofen 3 times daily (for spastic left leg), Percocet 5/325 3 to 4 times daily. None of the medication makes the sitting any easier. Does anyone else have the same problem and does anyone have any suggestions? I just want to be able to sit without severe pain.
I also have interstitial cystitis and cervical dystonia. The ic is in remission right now (thank you Lord) and I get Botox injections in my neck and shoulders every 3 months for the dystonia which seems to help.
Any responses/suggestions would be greatly appreciated!
Posts: 17
Joined: Sat Aug 21, 2010 11:09 am

Re: "Butt pain!"

Postby tennesseewalker » Wed Nov 06, 2013 8:13 am

Hi Susan. Google RSD (also now called CRPS). Reflex Sympathetic Dystrophy, and Complex Regional Pain Syndrome, respectively. See if your symptoms match.

I have it and nothing helped at all for three years. Then I got my spinal cord stimulator, and ahhhhhhh. It's miraculous for me.

I described it as burning, stinging (like alcohol on a fresh cut), and FREEZING.

My syrinx extends from C1 to the bottom of T7.

I hope this helps.
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Joined: Fri Jun 08, 2007 3:47 pm
Location: Orlando, FL

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