I added drug/pill identifier links and interaction checker links in the TOS forum stickys- so you might wan to make sure you got the right kind of med by checking with those.

I just added them to ours here.

Hi Lisa, I have the same spasm of my hands and feet and it IS horrible

I am now on Baclofan and Clonazepam which help heaps the dystonia heaps. I have whole body clonic spasms and have my baclofan through my intrathecal pump and it has been a godsend.
I also visit a hand therapist who ever so gently coaxes my hands out of the claw effect!
Wishing you luck

My hubby is on baclofen as well - We also (kids and I ) gently massage his hands when they cramp up and stretch them as well - Of course softly and if he needs to stop we do. Usually as long as he keeps them moving in some sort of fashion (nothing strenous) he does ok for the rest of the day. Do you have anyone who could help you out and do something like that?

Lisa
have you talked to a neurologist about botox?

even though I had some sort of odd reaction to the botox when I had it... it helped me a lot. My neuro teaches about it's use. He has told me about people coming in with "claw" hands and so forth who are cured after botox injections. He has used botox for RSD a couple times. He has known of it's use in other RSD patients with great success for severe cramps, spasms and I think it's called dystonia?? where you can't open your hand? or muscles?

I think my reaction was caused by the way it is injected - with a needle that is electrified, similar to an EMG. It is used to find the EXACT center of a spasm to inject the medication into. I had an EMG in my leg and foot the first time I had RSD (when it was in my foot) and I could barely walk for 2 months.. the pain the EMG caused, and the SEVERE spasms it caused were the same type of pain as what happened from the botox - but no spasms this time because of the botox.

However -- after the botox... I no longer had the absolutely horrible muscle spasms in my arm, shoulder and upper back that made me cry, double over and see white. They were like getting hit with a cattle prod - I have been stung by a cattle prod and hit an electric fence (used to work with horses and be on a farm) and it was that same electric feeling. Botox cured that. Before the botox, I could not open my arm up hardly past 45 degrees. Now I have a lot more movement... but it's not 100%. It takes away your strength...I could not lift a pop can for weeks with that arm that was treated.. but after it was a lot better (your strength comes back). My reaction was WAY off the charts in pain - even for RSDers. So, don't let that stop you. It WAS worth it. I am considering having it done again, this time under my arm, in the arm pit area.... to see if it will free up the spasms there that a year of therapy and exercises have been unable to break free.

It can take a while - 6 weeks or more for the maximum effect of the botox to take effect. I don't think I realized how much it helped me for 3 months due to the reaction I had to the needle itself.

Ask your doctor about it. If you need to.... PM me and I can give you my neuro's name for your doctors to call if they need info on this.

When I looked into it last summer, there was quite a bit of info out there on botox and RSD. I imagine there is more now.

You will probably run into posts I have made on the old board, or other boards about my experience. I was pretty miserable!! No, I was in agony... especially the first 3 weeks. BUT... it helped SO MUCH!!! I would not be considering it again if it did not. Thinking of putting myself through that again -- it would have to have helped!! other that massage therapy, I think it has been the single most helpful thing I have done or medication I have taken. Also realize, I do not take regular pain medication (because I drive to work every day). If I had been on some sort of pain med, this would have been a lot easier. They tried putting me on duragesic to help me out, but I was to sleepy on it to drive to work safely, so I just had to stick it out.

My insurance covered the vial of botox (something like $1400) but not the doctor's fee for injecting it... which was about $300 due to the special equipment needed.

Also, have you tried massage therapy by a really good massage therapist? Mine does WONDERS for my spasms !! Look for one that is licensed to do cranial sacral therapy---- they have the most training. The doctor I saw at Cleveland Clinic said they are finding out more and more what great things massage therapy can do for RSD. I started massage therapy right after both my injuries that resulted in RSD.... and am convinced it is one reason I was able to continue to work after each one... and have not had nearly the problems some do. It hurts a LOT to start with, but like desensitization, it gets better. My massage therapist lets people come for partial hours if they only want a small part of their body worked on. So if you just wanted your hand worked on, she would work on you for 20 minutes 3 times a week... but it would equal one hours worth. Much less expensive that way. She likes to start with 3 times a week, then down to 2, to once a week.. to every other week.

Hey Lisa

I also have the clawing. I have botox for it and take a lot of muscle relaxers (I am on baclofen, diazipam and triphenydriyl). I also have splints which I wear at night to try and stretch the spasms out every day....

I must admit, for me, botox is brilliant. Well.. ok it' hasn't got my hands working properly - but I have alot of other disease issues which would stop that anyway.. I have generalised dystonia along with the full body RSD and the botox does calm the spasms down - I used to have such severe spasms in my thumbs that they would dislocate the joints and now... well.. they are abit better! yay....

I can identify so much with what you are saying, and I know how dreadful it is, and how dreadful the pain is with it. It feels like your joints are going to die if they twist even the tiniest bit more and like you are just going to... I don't know what...

Sending you loads of pain free hugs and I really hope that the pain drs start taking you seriously. The other thing I thought of was hot wax - this was something the physios used to do to try and calm down the spasms - they place your hands into warm wax and then peel it off. Stretching is something that is really important with RSD/ dystonic spasms otherwise the joints set like that.. (that's happened to my feet and ankles) and it's NOT good.. I know that stretching is agony - but even once a day is better than nothing!

Loads of Love

Frogga
xxxxxx

PS tayla - I get whole body jerks and spasms too. They SUCK!

Botox?? I never would have imagined that something like that might help - Thanks so much for the information on it - This is something we're going to have to look into.

Thank you Frogga. Others have mentioned the hot wax to me also. But that scares me. I'm SO sensitive to temp changes, that at PT they were AMAZED that I could tell the difference with only one degree of change. They would do that with me with the water. They would check the swelling of my hands by filling a container with water and having me insert my hand into it and measuring how much water came out a spout. If that water was not a precise temperature, it was PAINFUL to me. They figured out the temp it had to be, and started getting the containers ready before I got there, cuz it had to be exact. So the wax scares me. Anything not "room temperature" is painful. Which is probably why my pain doc keeps blaming "the weather" on all my issues.

Which reminds me. We've been pretty okay weather wise the past couple of days...and now we're supposed to have a big storm over the weekend. YECK!

So...can I borrow a 2 x 4 to smack my pain doc upside the head on monday????

Thank you so much.

Hi Lisa,

I know the feeling you are talking about with your hands.

I didn't forget that you are stilll working and that does not help the situaton.

My hands hurt badly also, but my doctor listens to me.
I told him the pain is intolerable and I could not use my hands to do ..... and give your doc a list of what you are unable to do in the evenings.
Write it down if you think you'll forget all of this.
At the time this hit me, I could not lift a glass of water. It sat on the table
with a straw in it. I still have to do that on some days. Moving a finger hurts so bad - all the way up my arm. I know what you go through.
I use disposable soapy wash cloths and disposable cloths without soap because I cannot wring out a regular one.
I tried Botox and it did work well to relieve spasms.
I take a muscle relaxer but it doesn't help the hand spasms or arm spasm, they mostly help me to relax and sleep.

Lastly, I have had to switch pharmacies several times (4) because they have never been paid for 4 years and won't continue to service me.
I get different shaped pills all the time and I don't notice the difference.
Maybe because I burn and hurt all the time anyway, but still get a little relief from the strong meds I do take.
The burn comes through the lidoderm patches but if I take them off, I want to cut my arms off, so back on they go.
I am finding that nothing helps me to the extent I can do things anymore. My family can't believe how much I've deteriorated in a year.
Someday you may have to face the fact that working with RSD is causing you to get worse. Others believe working will help your pain and help you to keep going. Only you can decide which is true for you.
I am sorry you have to go through this too. I wish we both were in that small % of people who get better.
One thing that helps me when I feel soooo bad is to count my blessings and think of positive things. Then I take my meds and go to sleep. True story!
{{HUGS}} HOPE

I haven't tried either one. At PT they used to do manual manipulation on me, and it FELT really good. That's the part I LOVED about PT But as for massage therapy outside of that...no, I haven't. I'll have to give that a think, cuz I know it DOES feel like it needs massaging, and when I press on it for a while, the spasms feel a tad better. It would give me a feeling of being pampered, too, I'm sure.

As for botox...nobody has ever suggested that, but I will bring it up to my pain doc on Monday and see if that's something they use.'

Thank you for the suggestions.

As for pain meds...I work, and drive 50 miles each way. I am on the duragesic (75 mcg/hr) plus percocet 3x's day, and I'm not "high" or unable to drive at all. That's in addition to the effexor, topomax, thyroid meds, provigil as needed to keep me awake, and something else that I always forget LOL! If you have a GOOD pain doctor, they medicate you just enough to treat the pain, but not SO much that you feel "out of it." I've found that out - I've BEEN over medicated before and I hate that feeling. If that's how I was, I wouldn't be working. If you were to look at me, you wouldn't know I was on medication. Nobody can tell just by looking at me or talking to me. So if you need it, just start out at a very low dose and work up. That's what my pain doc does...always. He always starts at the lowest dose, for like 7 days, then ups it a little for 7 days, they up a little more for 7 days. I see him every month. By the 4th week, when I see him again, I'm at the dose he wanted me at...but I CAN stop at a dose that I felt okay at, without going to the max, if I want, and if I get relief, before then. That's a good way to find relief without being out of it.

Just a thought for ya ifit every comes down to that...k?

Yes, I do have my SO....and it DOES feel better with a massage. I've asked him to do it...but for some reason he just can't do it RIGHT. He never could give a good massage! LOL! I told him to only use his thumb...to put the rest of his fingers on the BACK of my hand and keep them still while he massages the inside of my hand with his thumb. But for SOME REASON, he just can't keep the rest of his fingers still! I wonder if he can walk and chew gum at the same time? LOL!

Okay...that was mean...LOL! I love him to pieces and he IS wonderful to me. He truly is. He tries. He does everything he possibly can for me. But I CANNOT have him touching my hands like that. If he moves those fingers on the back of my hand, it hurts. It makes things WORSE.

Sometimes I will use the knuckles of my OPPOSITE hand to massage myself. When I'm driving, I can massage my right hand on the gear shift of my car, but my left hand I have nothing to massage it on. It's getting harder and harder to drive, too. I've been putting my hands thru the steering wheel, driving with my wrists...but now the spasms are moving into my wrists, and on my right side they are going into my muscle up by my elbow. Not all the time, there, but throughout the day about 4-5 times. So it's getting harder and harder. And I don't like it. It's getting more difficult, which means it's getting harder to go to work. That's not good