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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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Elder
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I have been on Baclofen 20mg four times a day for several years. I too tried to come off of it... that was a big mistake as the cramping and spasms got worse.
It does make me sleepy and the dreams I have are very weird. But the Baclofen works. I hope it works for your daughter... just keep an eye on her. ![]() Abbie
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My avatar pic is my beautiful niece Ashley! . Rest in Peace 3/8/90 ~~ 4/2/12
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"Thanks for this!" says: | SandyS (12-04-2011) |
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Debbie |
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#3 | |||
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Elder
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I take 20mg four times a day. I've been at this level for a few years.
I too had the twangs and insomnia... I found if I ate something light when I take the baclofen this lessened and is now gone. (now it makes me sleepy and weird dreams) I won't go a day now without the Baclofen... the muscle cramps, spasms, and just plain ole muscle wasting is not fun. I wish you the best. ![]() Abbie
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My avatar pic is my beautiful niece Ashley! . Rest in Peace 3/8/90 ~~ 4/2/12
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"Thanks for this!" says: | SandyS (12-04-2011) |
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Grand Magnate
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I'm on the same dose of Baclofen that Abbie is on - for back spasms.
Being on this med has made a good difference, but I still get breakthru, even if I simply stand at the sink doing dishes. So far tho, Baclofen has worked better than anything else I've tried. Adding a low dose of klonopin or xanax seems to help when the breakthru's come. I hope your daughter will get some relief! Rae ![]() |
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"Thanks for this!" says: | SandyS (12-04-2011) |
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Grand Magnate
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I was wondering if anyone else has noticed short-term memory issues while on Baclofen? I vaguely recall reading that someone mentioned this awhile back. This is something I've noticed, but not certain it's because of this med, as I had started a few new meds at the same time.
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#6 | |||
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Senior Member
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Quote:
But once I was no longer working I went on it, where my neurologist advised me that it was the best drug available for CNS spasms and keeping my short-term memory in tip top shape was no longer at the top of my list. That said even though my shrink put me on neuro-protective drugs (Namenda and Razadyne) as soon as I was diagnosed - 4 months into this - eventually the neurocognitive ravages of CRPS overcame whatever barriers we had erected, on account of which the effects of Baclofen became a drop in the bucket, as my memory (along with what few organizations skills I had) got progressively worse over time, while my Baclofen dose remained constant, at 50 mg/day. See, Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73, Epub 2010 Mar 19, online text @ http://www.rsds.org/pdfsall/Libon_Neuropsychol_2010.pdf: http://www.ncbi.nlm.nih.gov/pubmed/20298641 But take heart, at least according to that study, a CRPS/RSD patient has a 35% chance of having no cognitive impairment, a 42% chance of losing only some of her/his "executive functions" (largely organizational skills), and only a 23% chance of having a decline in memory and executive functioning: "group 3" for some reason comes as a bundled package. As measured by before and after psychological testing (administered by the same clinical psychologist) I just happened to draw the short straw. Odds are, you'll be luckier. Mike
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I have learned that to be with those I like is enough. - Walt Whitman |
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#7 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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Mike,
Is CRPS known to have an effect on adrenal hormones (particularly pregnenolone)? I ask because pregnenolone, in recent years, has been touted for improving/restoring cognitive function, though no credible studies have yet supported this claim. I would not recommend/suggest anyone try it without being deficient in the hormone, and without having their doctors' blessings. I've been taking it because I am deficient, and have my doctor's ok, and it has measurably improved my short-term memory and cognitive function. (Test scores before/after improved 20-25%). Just a "FWIW".... Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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"Thanks for this!" says: | fmichael (12-04-2011) |
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Grand Magnate
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