muscle spasms are out of control
 

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.

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.

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

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

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

Marinol
 

Mike
Does that make you feel like your smoking pot?

Debbie

More like you've been smoking pot.

Pot
 

Too bad- I hate pot!!

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

Are you where medical marijuana is legal??
 

Wendy - First of all, Marinol (dronabinol) is perfectly legal throughout the US, and in 1999 was transferred down a notch from a Schedule II drug, such as Oxycontin, to Schedule III, so it can be refillable, etc. You can access a copy of its U.S. prescribing information sheet directly through an FDA site at http://www.accessdata.fda.gov/drugsa...025s026lbl.pdf

In addition to its use as an anti-nausea drug, it's also approved as an appetite supplement for HIV patients. Munchies, go figure.

In terms of other side effects, the big thing I've noticed is that if I take anything beyond the minimally required therapeutic dose, and you sort if have to learn this by trial and error, there will be minor thought/judgment distortions. Nothing wild mind you, but it's easy to slip into seeing some new all important connection between various phenomena and then have an urgent and ultimately embarrassing need to communicate that to too many people via email. At least it is for me. It's hard to explain, but I can just tell when my orientation is a little off, for want of a better word, and then the key is just to acknowledge that what you are experiencing is a little buzz, nothing more or less. And so long as you keep that in mind, it's not a problem. (The technical terms for that kind of a discordant experience include depersonalization and mood alteration.) It is however a reminder not take the second pill if only one will do. Which is why I suppose there are a lot a warnings about prescribing this to children. Using it responsibly requires judgment on the patient's part, again because there's some degree of titration involved.

That said, it's amazingly non-toxic. I am quite frankly surprised to see reports that 3 -10 % of people taking it reported GI disturbances, where I spent much of the late Sixties and early Seventies surrounded by pot and pot-heads, and don't recall anyone every mentioning those sort of complaints, any I have certainly never experienced it with Marinol. More importantly, a good friend of mine buys her medicinal pot through a large AIDS clinic in SF, where much of it comes in the form of baked goods; if these baked good are not routinely causing people gastric distress - and they do not - it's hard to think that the active incrediant in Marinol, Dronabinol (an exact copy of the naturally occuring delta-9-THC molecule) is the culprit. Perhaps some people are sensitive to the medium of gelatin, glycerin, and sesame oil. Don't know.

And considering that the maximum recommended dose is 20 mg./day, that statement in the FDA sheet that "Significant CNS symptoms in antiemetic [used or tending to prevent or check vomiting] studies followed oral doses of 0.4 mg/kg (28 mg/70 kg) of MARINOL Capsules," sounded about right, if by that they were referring to memory impairment, depersonalization, mood alteration, etc. But seriously, how scary can it be if they're running human experiments at ten times that level:

An abstinence syndrome has been reported after the abrupt discontinuation of dronabinol in volunteers receiving dosages of 210 mg/day for 12 to 16 consecutive days. Within 12 hours after discontinuation, these volunteers manifested symptoms such as irritability, insomnia, and restlessness. By approximately 24 hours post-dronabinol discontinuation, withdrawal symptoms intensified to include “hot flashes”, sweating, rhinorrhea, loose stools, hiccoughs and anorexia.

As in what did they expect? And I laughed when I read that the "estimated lethal human dose of intravenous dronabinol is 30 mg/kg (2100 mg/ 70 kg)." At 5 mg./capsules and 60 capsules per bottle, that works out to 7 bottles, or a 3 & 1/2 month supply at the maximum recommended dose! (I defy anyone to imagine surviving a single iv injection of a 3 & 1/2 mo. supply of any prescription med of a CRPS patient.)

Corinne - I too live in a state where medical marijuana is readily available: at something over 800 storefront locations in LA alone, most of which are happy to refer you to a doctor who, for a small fee, will give you the necessary paper work for whatever is causing you concern. As a result, the legitimate pain management physicians - the ones who are dealing with hideously painful conditions that require the use of powerful opioids and the resulting DEA scrutiny - don't need to have someone wondering why they've entered the carnival show. So if they are happier prescribing Marinol while periodically performing random screens for medications not on the patient's list, I'm happy to play by those rules in exchange for top flight quality care.

Mike

small bump
 

Corrected my last.

Here's a current article on medical marijuana and patients with chronic pain/RSD:

http://www.uccsscribe.com/news/the-d...sers-1.2231398

Hi there,

I've been having spasms in my left side under my rib cage for the past couple of years, its a pain that waxes and wains , sometimes sharp and stabbing, sometimes intense deep throbbing. Actually we finally just narrowed it down to my colon in the past couple of months after many diagnostic tests.

I also experience many muscle spasms in my chest, it almost feels like I'm having a heart attack when those come on as I can't move or breath from the intense grabbing sharpness of the pain just under my breast bone. The spasms are all on the left side of my body where my RSD typically likes to run a muck. My doctor prescribed a common calcium channel antagonist called dicetel for my bowels. It supposed to help relax the colon muscles (good for an irritable bowel) but I just started it so I need to give it a bit of time.

I tried a few of the THC derived pain meds and didn't like the way they made me feel, spaced out and not with it, nor could I determine that they had any specific effectiveness on the random spasms roaming my body.

For what it's worth I find that the spasms are more rampant when my stress levels are increased or if I'm not paying attention to a good diet and healthy life style.

Warm wishes.

MsL