I have two questions for you beautiful people, I'd love to know if anyone can shed any insight on this.

Lately an occasional cramping in my thigh muscle in my RSD leg has turned into a constant cramp, with the whole thigh area always rock hard and my muscles contracting/jerking quickly over and over again. I don't know if it would be called a spasm or contraction or jerk.

I liken it to a pregnant belly when the baby moves: If I put our tv remote on my leg, it gets jolted around and often gets knocked off my leg by the severity of my thigh muscle jerk- just like when you're pregnant and put the remote on your belly and the baby kicks so hard the remote gets pushed up.

Often my leg will come right off the lounge or bed when it spasms. This happens multiple times each day (this laptop has been bumped up about 6 or 7 times while I've been writing this message!) and through the night, and although the jerks don't hurt intensely, it's not nice and the cramping and rigidity hurts.

I also get the same muscle jerking in my right foot, with my foot either pointing down suddenly or jerking to the side. It seems to be the muscles on the top of my foot that are constricting.

Is there a name for this type of jerk/spasm/contraction and what my thigh muscle is like now? Would this come under the heading of dystonia or not because there's no twisting of the limb?

Does anyone know of a good treatment option for this symptom? Is this where botox can come into play?

My other question is about body temperature. I've never had an issue with this. I've always needed to keep my RSD affected limbs warmer than the rest of me, but lately my body temperature regulator has been way out.

When the rest of my family are cold, I'm sweating and feeling like I'm in an oven. When I'm freezing cold all over and want the heater on, my husband is turning the air conditioning on because everyone else is hot! (As we have 6 people in our household, I'm usually outvoted and have to get a blanket!)

This is normal for an RSDer, right? That probably seems a dumb question as I've had my RSD for nearly 9 years, but this is all new stuff I've never dealt with in this way before!

If any of you would be able to share your experiences with (or knowledge about) these symptoms, I'd appreciate it.

x Kate

I know what you are talking about. The same thing has started to happen to me. I told my PM dr. about it and he gave me Requip the same thing they give to Parkenson patients and RLS..restless leg syndrome. It has help quite a bit. It doesn't make it go away, but at least now I can sleep on the bed without thrashing around. I don't really know what ppl call it. I just tell the dr. that it is like a cramp that has started but doesn't get to being an actual cramp, and that my legs jerk around and off the bed. It ususally happens when I'm resting. This does sound like what you are experiencing. It is part of the rsd according to my dr.
I know others with more knowledge will be one to help you more than I have.

Hugs
Mary

Dear Kate -

I remember when severe cramping cut in on me one night for the first time, and both legs were as rigid as stone, a condition controlled now just with oral Baclofen (50 mg./day). But what you are describing sounds more complicated by an order of magnitude. Please check out my PM.

Mike

Hi Kate,
I don't have the muscle contrations but I do have the temperature problem. I believe they call it thermal regulation and my neuorologist told me it is a symptom RSD. A lot of RSD patients have excess sweating. I am just like you cold when everyone else is hot and hot when everyone else is cold. I haven't found any remedy for it same as you I spend most of my time under a blanket. Hang in there.
hopeful

Thanks guys.

I'm already on the tablet form of Baclofen, 50mg a day. I've been on that dose for nearly the whole nine years I've had RSD, changing the amounts every now and then to check it's still helping, or going off it for my pregnancies. Maybe it's time to up the dose. I'm still waiting for an appt with my pain dr, so hopefully he can shed some light on this. xx

I work in a nursing home and almost all the MS patients have a baclophen pump. I think once your up to about 80mgs they will suggest a pump but I don't know how complicated that surgery would be or if it would make your RSD worse but it something to think about....

Deb

Hi... I too suffer with these spasms, but not in thighs, they occur to the legs, which wakes me up with horrible pain during mid nights. But coming to your case, it’s quite different. Please go and ask for doctor's advice on this issue. Take care of your health. Thanks for sharing.

Is that med a muscle relaxer? I would call and make an apt with your treating doctor since you have new symptoms. I take sometime for my tight calves/legs zanaflex that is suppose to help muscles relax and sleep. Right now I am not sure if it helps sometimes I think yes and sometimes no. As for botox that would be a no for me. Everyone is different but I have read you never inject the rsd area and for me a finger hurts so a needle oh my. Does your doctor deal with rsd a lot?

Yeah, the baclofen is a muscle relaxer. It works well for my arm and hand symptoms but doesn't do much for my leg or foot. I'm seeing my GP on Thursday so hopefully we can find a way to deal with this. Thanks for your replies.

I use Flexeril for spasms and after a period of about 2 weeks, it has done wonders for the spasms. I've had RSD for 7 years and still struggle every day with the temperature regulation. I am miserable most of the time when I am in a room with others controlling the air conditioning / heating. I have tried many things for the temperature problem. I have found that Klonopin 1 mg BID works great, after you build up a level in your body. Believe me, it makes all of the difference in the world. I don't know why or how (and probably the docs don't either), but this has helped me immensely. I was on Baclofen for a while also, but found Flexeril helps just as well & is much less expensive. However, the Flexeril level must be kept constant in your body or you are wasting time.
Good Luck,