[Linmarie]

Hi everyone,
I haven't posted in some time on here as it still is a problem for me to sit for any length of time. I miss this forum. You all have helped me so much in the 6 years that I have had RSD. My biggest pain right now is my SI joint and the muscles spasming around it. I have tried coritisone/marcane injections into the SI joint, trigger point injections into the surrounding muscles, PT, massage, chiro, kinesio tape, lidoderm patchs, flector patchs, TENS, stretches, etc. My pain doc thinks there are several things going on in the area concerning the joint and the muscles. The pain radiates from the SI joint up to the lower back and down to the top of the hamstring (which burns like crazy and affects my ability to sit more that the SI joint pain). On my last visit he said there was nothing more that he could do for me except try experimental procedures. I'm very afraid of the nerve ablation as I have read many stories of the failures. (Have any of you tried it and if so, what did it do for you? He said he has had success with them.) The only other option he can try on me is botox injections into the muscles. I am thinking that I have to try this. Have any of you had any experience with botox? Has it helped the muscle spasms and the pain?
Any help or advice is greatly appreciated.
Linmarie

[ali12]

Hi Linmarie,

It's good to hear from you. I have missed your posts and wondered how you had been doing. Sorry to hear about everything that you are going through right now!

I have RSD in my left leg and both arms and my Pain Management Doctor, Physical Therapists suggested trying Botox in my left leg as I have a pretty severe case of Dystonia on top of the RSD that doesn't really respond to any treatments.

My leg has been rotated out to the side in eversion for over 2 years now and I have been having intense PT and tried lots of different medications and splinting but nothing has worked so that was why the Botox was suggested.

I had an appointment with my Neuro a few weeks ago to discuss the Botox and he said that he doesn't think it is worth taking the risk in my case. I had a nerve block when I was diagnosed with RSD and that left me in a wheelchair for 13 months and later had an ingrown toenail removed which caused really bad Myoclonic Spasms so my Neuro kinda thinks that the Botox could cause even more problems and I have been adviced to stay away from any procedures like that if at all possible.

We are still looking into the Botox but at the moment, we don't want to try it. My PT's are trying to book me in for some intense PT and then if that doesn't work, we will probably go down the Botox route.

I have spoken to a few people that have had Botox and like everything with RSD, everyone responds differently. Some people had great results from it whilst others didn't.

I wish you the best of luck with whatever you decide to do and sincerely hope that it will help you! Please just weigh up the pro's and con's before deciding to go ahead with anything - no one can force you into doing anything you dont want to - YOU know your body better than anyone else!

Take care and I hope you feel better soon!

Alison

[Linmarie]

Hi Alison,
Good to hear from you. Sorry about your condition. I hope the PT helps with your leg. Have you tried massage therapy? It really helped me. I used to go once a week but quit because of the cost. I really should go back. I'm getting the botox since there doesn't seem to be anything else to try now. Right now I am trying to find some botox since the medical center charges $1100 and my doc said I should be able to get it for less at a pharmacy. Unfortunately, none of the pharmacies around here will order it for me (with the RX).
How did the nerve block leave you in a wheelchair? My SI problem first appeared after a nerve block. The first two times it happened, trigger points and chiros were able to calm it down. This time, it took too long to get a trigger point and by then the muscle kept spasming. What type of pain does the dysonia cause?
I really hope you can get something that helps soon. I will keep you informed on my experience with botox. I might be able to get the injection next week. Waiting for the doc's office to call back.
Take care & I hope you have a good day.
Linmarie

[ali12]

Originally Posted by Linmarie

Hi Alison,
Good to hear from you. Sorry about your condition. I hope the PT helps with your leg. Have you tried massage therapy? It really helped me. I used to go once a week but quit because of the cost. I really should go back. I'm getting the botox since there doesn't seem to be anything else to try now. Right now I am trying to find some botox since the medical center charges $1100 and my doc said I should be able to get it for less at a pharmacy. Unfortunately, none of the pharmacies around here will order it for me (with the RX).
How did the nerve block leave you in a wheelchair? My SI problem first appeared after a nerve block. The first two times it happened, trigger points and chiros were able to calm it down. This time, it took too long to get a trigger point and by then the muscle kept spasming. What type of pain does the dysonia cause?
I really hope you can get something that helps soon. I will keep you informed on my experience with botox. I might be able to get the injection next week. Waiting for the doc's office to call back.
Take care & I hope you have a good day.
Linmarie

Hi Linmarie,

Thank you for your kind words. I really hope that the Botox helps you and you will be in my thoughts and prayers - please keep me updated as to how you respond as we are still looking into the Botox if nothing else helps.

I'm not sure why the nerve block caused me to develop such horrible complications but my Pain Management Doctor believes that I have the most 'wound up' nerves he has ever seen.

When my Doctor did the block, he injected directly into my RSD limb and I think it somehow caused even more nerve damage. My Doctor didn't know at the time that you should never inject into an RSD limb, it was only after I had the block and the complications developed that my mum found an article on the internet saying never to inject into an RSD limb unless you absolutely have to and by that time, it was too late. I really wish we had looked into the block beforehand but my doctor told me that it could take my pain away so I guess when someone tells you that, you are going to try it.

The Dystonia causes lots of muscle pains. I get lots of muscle tension and tightening and often experience severe cramp that can last for ages. It is really frustrating and makes me jump a lot when it is really bad.

Take care and Good Luck with the Botox - I hope and pray it helps you!