Originally Posted by bobber (Post 523658)

Thank you for the info,,,tryt zanaflex for the jerks and spasm,,,works great for me,,,,your in my prayers as well,bobber

Originally Posted by ali12 (Post 523560)

Hi Bobber,

So sorry to hear that your RSD has spread so rapidly!:hug: I really hope that things start getting better for you soon and that your RSD doesn't spread any further!!!

I agree with you completely about being careful with surgery and RSD! I haven't had any major surgeries since RSD but the 2 supposidly 'minor' procedures caused a LOT of problems for me!!!

I was diagnosed with RSD just under 2 years ago when I was 12 years old. I developed RSD in my left leg in March 2007 after I fell and sprained my ankle and it took about 5 months to get diagnosed.

When I was initially diagnosed with RSD, my Pain Management Doctor decided to do a Guanethidine Nerve Block on me as he said it could reduce the pain in my foot.

The day after I was diagnosed, I went and had the block. Because of my age, my doctor decided to do the block under general anaesthetic as he said it would be too painful to have it done awake.

As soon as I woke up from the block and was told I was OK to walk after a few hours, I found that my legs weren't working! Everytime I tried to stand or walk, I would fall all over and was very wobbly!!

My doctor said that the problems would probably settle down but they didn't and has the days went by, things got worse and worse. It got to the point where I was wheelchair bound as I had lost all co-ordination in my legs. If I needed to go to the toilet or anywhere, my mum had to literally carry me otherwise I would fall.

After I had the block and the complications started to develop, my mum found an article on the internet stating that you should never inject directly into an RSD limb unless you absolutely have to. We didn't know that at the time so decided to go ahead with the procedure.

When we mentioned it to my doctor, he said that he had never heard that you shouldn't inject into an RSD limb and said he would never do it again to anyone else.

A few months after the block, I fell and the RSD spread to my right arm. I had to have intense PT to try and get that under control somewhat as my arm went into a fist and wouldn't open.

About 4 months after the spread, I developed an ingrown toenail on my RSD leg. We tried to ignore it the best we could but it became really bad and got infected so my doctor told me I had no choice but to get it removed.

I had the toenail removed a few days later and my dr did a ring block into the toe as it was supposed to reduce the pain. With the ingrown toenail removal though, I developed severe myoclonic spasms and my leg just bounced around in the air uncontrolably. My doctor couldn't believe how bad it was and in a desperate attempt to get rid of the spasms, tried lots of muscle relaxants with little relief.

My Doctor has told me and my mum that I have the most 'on edge' nerves he has ever seen and says that I should never have any surgery unless I absolutely have to (eg, for life saving treatment) as it will only make my RSD worse.

I hope you don't have to have surgery on your hip as I agree with you, I would never have surgery unless I absolutely had to, especially given the circumstances. Just wondering when you had your surgery, did your doctor do a block before and after? I read somewhere that a block before and after surgery could help with the risk of spread - though it isn't guaranteed to. I've also read somewhere that a Ketamine infusion/epidural could help so that might be something to look into if you haven't already.

Take care of yourself and thanks for posting this and making people aware of the dangers and risks involved! I am keeping you in my thoughts and prayers and hope you get some much-needed relief real soon!!:hug:

Alison.

Originally Posted by bobber (Post 523879)

You have a nice blog,,,alot of work,,some good sound advice and encouraging words,,,,im used to being active playing sports,i love to compete,due to this and thehip prob,,,im at a loss, my hope is in God,,,and ive got to find a groove to get into so that i quit wigging out,,,,time will tell,,im glad you have good support,,keep the letters running ,,its always nice to here from people with up lifting attitudes,,,,,,,,,bobber

Originally Posted by llrn7470 (Post 523448)

Couldn't help but reply to your post.
I developed RSD post-op knee surgery in October. I have since returned to work (thank god for that), but it's been a rough road.
I use a TENS unit while working (I am an ICU nurse with access to a LOT of drugs, thus cannot take anything stronger or that will pop a drug screen.)
BE CAREFUL...regardless of the type of electrose I use, the RSD part of my leg develops patches of bleeding blisters-something between a burn and a rash-that is scarring my leg. Ironically, when electrode are placed above my RSD area and used-no problem. My pain doc says not to use it as my skin will break down and likely exacerbate my RSD, but I can't work without it and am waiting for "blessing" from my employer to take yet another leave for a spinal cord stimulator. (Already more than have been cleared to get one, but told that there is no guarantee that my job will be there once it's healed.)
Road test the TENS-it does give me some level of relief, but at a cost.