Dear Al,

I couldn't lie down on my head either - for months. It was the asbolute pits. I am fairly sure it was because I had a series of trigger point injections in my shoulder, upper back, neck and the back of head just after my diagnosis that caused my RSD to spread. Who knows? Maybe the RSD was going to spread anyway. To sleep I had to position pillows so that I could lay on the side of my face (and of course take tons of meds). At one point I was up to 100 mcgs of Fentanyl, but most of the time I was on 75 mcgs.

Ketamine is administered by most docs in lounge chairs. I would think that something could be arranged....if one doc says he can't work with you NEVER EVER give up. Call someone else. After about 12 ketamine infusions with Dr. Getson in NJ, he did an occipital block which helped enormously. I still have trouble with the back of my head, but it's not nearly as bad as it was before I started the ketamine. I also find that a heating pad and Voltaren gel help.

Neurostimulation is invasive. Perhaps there are other alternatives that you could try first?

I am truly sorry for your husband's pain. Please let me know if I can answer any questions for you.

The best of luck to you...XOXOX Sandy

Hi For the med ? have you tried zanaflex? I tried that and though for me it did not help I thought I would suggest it. Some anxiety meds help relax muscles and why I tried klonopin with my neurologist but have not felt any different either. We are all different though.
Al what other procedures and meds has your husband tried? I remember right when I got dx I was suggested a scs before I tried less invasive treatments. I then later found out one should go through stages from less to more invasive.

My PM doc would not give me soma. He said it is not for long term use....I have not found anything that works well for muslce relaxing

Deb

Soma works GREAT for me, in fact, I had a three level, 360 degree cervical fusion and my neurosurgeon said Soma was the only drug that he had ever found that truly gave relief from muscle spasms........and I found that to be so true. Now to the problem. I am also on a slow release Morphine and an Immediate Relief Morphine for breakthrough pain. These medications together provide me with adequate "pain" control ..... HOWEVER..... since I have recovered from my surgery & am no longer seeing the neurosurgeon, I can not find a physician that will write a prescription for Soma. I am so confused as to why the physicians will write for MORPHINE ---- but Soma is too "habit forming"! What do they think Morphine is??? IF you can find a physician that will write it for you, Soma 350, One Four Times Daily works like a charm for me. I can not praise it enough. It is also priced fairly reasonable if that is an issue. I also have taken Flexeril & Baclofen ...... Soma is SO MUCH BETTER. BUT, it will take you a few weeks to level out on Soma. At first you will be sleepy & groggy until you get used to it, but if you will bear with it, and if it works for you like it does for me - you will not have to live with the heating pad OR the muscle spasms. I wish you the best.....but I fear you will have the same problem I have in finding a physician to continue writing the Soma. GOOD LUCK!

Hi PopPop, So sorry for your shoulder issues. My first sign of RSD was frozen shoulder following breast surgery and another tumor in arm pit. I wasn't diagnosed with RSD, but was sent to physical therapy to get range of motion back. Very painful, taking pain meds before therapy and it took a year of therapy, and I also did massage therapy prior to physical therapy. I did have spasms and was put on neurotin for nerve pain. I also practiced stretching exercises at home every day. One tool was a styrofoam cylinder 6 inches round by 4 ft. would lay on it and move from side to side for stretching between shoulder blades. Also used those thin rubber bands about4 inches wide to do stretching.
About 6 months into physical therapy and massagae therapy, my Rehab Dr. sent me to Orthopedic Surgeon, who wanted to operate and break things open to speed things along-I said no thank you and after another 6 months, had nearly full range and was in 'remission' (Didn't know I had RSD for 4 years)
The therapist told me it might go over to the other shoulder. Had remission for a year plus, then it did go into opposite shoulder. More therapy and another remission. While water skiing my hand nerves pulled and was misdiagnosed, then diagnosed with RSD -therapy, but only got 50% usage of hand. Now have full body and internal, but mobile except partial one hand. I still stretch every day and exercise and hope my mobility continues.
I have not had Soma so can't comment on it. Something that helped me besides heating pad, was those bean sacks that you put in microwave and heat up.
It's been 15 years now and I use vicodin and lorazepam. Lorazepam is an anti-anxiety med and it relaxes me and rarely have spasms. Also use 2 high blood pressure meds, seroquel xr for sleep and cymbalta for anti-depressant and nerve pain.
Have you ever used the machine that warms up wax and is used for hands and feet. Could you use it on shoulder and arm. When it cools, it peels of easily.
I still love massage therapy,even use it on myself during a sinus infection to release the swollen sinus and swollen lymph glands.
Hope this helps a little. I did take 3200 mg of neurotin when I was having electric shocks, jerks, spasms. It did stop the symptoms. Didn't like the weight gain and sleepiness, and gradually went off. For the most part, don't have the symptoms any longer.
Take care, loretta

I don't have any personal experience with Soma but I have a friend you was on it for years for back spasms. He had a back surgery done with great success and did not need it anymore and it was a huge problem for him to get off. In all fairness he was on other meds. but the doctor who helped him get off everything and he remains off everything to this day which now it must be 4 years, said it was the soma that gave him such a problem and he was on that god awful Fentenyl patch and they still said it was the soma. Again, who knows I also remember him saying it was the only thing that worked for the spasms so I do know it works. I would just be careful.

Gabbycakes

I am new to this group.. My pain management Doc has tried me on all manner of medication..We finally came up with Tizanadine as the best muscle relaxer for me..Taken at bed time....one or two seem to help with the spasms and still allow me to function when I have to get up in the night.
Good luck!!

How frustrating for you when you know what works and are unable to have it prescribed. Unfortunately Texas is one of a handfull of states that won't allow internet sales of Soma (there are many online US pharmacies that provide this service with an online consult for certain classes of drugs, muscle relaxers included). This may be why the doc's in Texas are tough on Soma. Good luck and keep searching because sooner or later you will find a compassionate doctor.