[wswells]

Hi all, I have had RSD for 24 years. I thought I had experienced almost everthing from the RSD. Well surprise surprise I have'nt. I have had muscle spasms, but not like these. I feel like something new is going on in my body. I noticed about a week ago that the spasms were different, at first they would wake me up in excruciating pain in my feet, to a point I had to get out of the bed and walk with my cane until the spasm would settle down,then they started to happen anytime I'm having them everwhere even in my stomach you can see them just in hard balls squeezing. I have meds from Dr. from a long time ago that I still take, they are not working. I'm in so much pain from these on top of the other pains that go with RSD, i feel like I'm going crazy. Please help me with any ideas to get rid of these.I would really appreciate it. Thank you so much in advance. Wendy.

[daniella]

Hi I am sorry for all you are going through. What med are you on for the muscle spasm? I think my pain doc rx zanaflex and my neuro klonopin though my spasms seem different then what you are going through. Can you make an apt with your doc since they have changed? To help to take the edge off do baths help? Maybe with some epsom? I am sorry I wish I had more to offer. I hope you feel better.

[Momlovetobake]

I know exactly what your going through hun...i really hope they can find something to calm things a bit for you .

[Kakimbo]

Hi Wendy.

I, too suffer from horrible spasms. Mine are in my calves and butt. My PM gave me Baclofen 10mg. I take up to 40 mg. per day. Make me really sleepy, but hey, that can't be that bad! Hope it works.

Kim

[fmichael]

I take 50 mg./day of Baclofen although some people are on far higher doses with implantable pumps, something we share with the MS community.

However, my secret weapon is Marinol, which comes in 5 mg. gel caps. It's an off-label use for a synthetic version of one of 9 naturally occurring THC molecules in cannabis: its approved use is in combating nausea, and improving appetite, especially after chemotherapy. For particularly bad spasms I am prescribed 2 at a time. It takes about 40 minutes to become effective, although I have heard that it may be possible to smoke them in a glass pipe, for immediate relief. But even having to wait 40 minutes or so, it’s the most effective medicine I have ever had for these CNS induced spasms. Of course, Marinol cannot be used while driving, etc. The good news is that, if I take it in the evening, I am completely clearheaded by morning.

Mike

[debbiehub]

Mike
Does that make you feel like your smoking pot?

Debbie

[fmichael]

More like you've been smoking pot.

[debbiehub]

Too bad- I hate pot!!

[wswells]

Originally Posted by fmichael

I take 50 mg./day of Baclofen although some people are on far higher doses with implantable pumps, something we share with the MS community.

However, my secret weapon is Marinol, which comes in 5 mg. gel caps. It's an off-label use for a synthetic version of one of 9 naturally occurring THC molecules in cannabis: its approved use is in combating nausea, and improving appetite, especially after chemotherapy. For particularly bad spasms I am prescribed 2 at a time. It takes about 40 minutes to become effective, although I have heard that it may be possible to smoke them in a glass pipe, for immediate relief. But even having to wait 40 minutes or so, it’s the most effective medicine I have ever had for these CNS induced spasms. Of course, Marinol cannot be used while driving, etc. The good news is that, if I take it in the evening, I am completely clearheaded by morning.

Mike

Dear Mike, Years ago the Dr. gave me Baclofen and after 2 months it was effecting my liver , so I had to go off of it. So what is this Marinol ,I'm very curious, is it legal? Do you ask your Dr. for an rx, or is this considered a natural medication? I don't care if it feels like you smoked pot if it works . Thank you so much for this info. I will look into it . Thanks again Your friend Wendy

[corinne89]

Hi,
I wanted to stick in my 2 cents.. I live in a state where using medical marijuana is legal for spastic conditions. It works better than any muscle relaxant (which I also still use). It doesn't take enough to get "stoned" to work. As a matter of fact, if too much is used, some people will spasm more. 14 states have legalized it for certain conditions and 14 more have legislation ongoing. It's definitely worth looking into. Be sure to let your pain clinic know so there is no conflict if you are drug tested. The Supreme Court has said that no doctor can be disciplined for discussing and making a recommendation that the benefits may outweigh the risks for a qualifying patient. <--This wording is what they should put into your chart and get a copy for yourself to carry. Americans for Safe Access will have the data for your state. Take care,
Corinne