RLS and insanity!!!!

[giniana]

OK, somebody out there must have restless leg syndrome, and not only HAVE it, but have found something other than Requip and Mirapex to help it.  One glass of white wine sometimes helps, and faster than the drugs, but the effect wears off too soon.  I've had this since my teens and I'm now in my sixties, and it's driving me round the bend!  You know - legs, and sometimes even arms, feel as if there are colonies of ants on the inside, go into spasms, ache, burn, prevent sleep or sitting still.  Puhleeze, somebody, tell me how to make this better!  Oh, and I tried the raisins and wine business and couldn't really tell any difference.
Thanx!
G

[kenzibrook]

It sounds to me like you might have been misdiganosed, I would get a second and third opinion. Have you ever tried lirica, that may help.

[ggreg]

Well, folks, help is on the way!  Go to rls.org, check out their various info departments, which give you a million tips on medications, possible causes, and so on.  Also they have a helpful forum, you can search and then read lots of discussions on RLS stuff you might have questions about.  There are other RLS websites, too...that's just one I know off the top of my head.

The best medicine results come from opiate-derivative drugs, even something as mild as Tylenol-Codeine #3 will do the trick, and they will stop cold your symptoms, let you finally rest, and you can stay on the same dose for years at a time.  Docs are reluctant to prescribe them, which is ridiculous, but it's part of the "drug war" idea, so go to a neurologist, they are usually better informed than most regular docs about what treatments are best.

In the meantime, a couple things work really well to "silence" the awful seizing-up and wiggling pain in your legs.  Wear support hose or diabetic socks at home when you get ready to rest.  Also, stretch the calf muscles and rub them real good when you have an attack.

As for the lumbar spine theory, that's what triggered mine.  But as one poster here as already said, there is also the "familial" kind of RLS, and there are many other things that set off RLS.  No one yet knows what causes it.  But as relates to adjusting the back, you can just go to a massage professional and get your back rubbed down good, and you'll get the same results...which are temporary but helpful.  

And I fully agree with another poster here, that it's an AWFUL condition to have, and in fact I have heard of one person who completely lost it and wound up in an institution, becuz lack of sleep can bring you down real quick.  I remember one time I was trying to get to bed, and I pulled on my knee-high support hose, and I looked and I could SEE clearly the muscle fibers in my calves rippling all over the place, like they were wired to an electrical outlet.  Also, RLS can interfere with driving a car, the jiggling can make it hard to put on the brakes, and sitting too long can really ramp up crazy thinking...not good in a car.

I hope some of this helps you guys, opiate drugs are really THE solution, but maybe some of the other ideas and tips here will help in the meantime.  Also, something like 10 percent of the population has RLS, so you're in good company.

[arachnaphob]

Just curious,  why can't you have spinal manipulation?  I have had 2 lumbar spinal fusions and have developed arachnoiditis, so I can't have manipulation either.  ??? Is this a commonality???

I also get the sensation in my arms sometimes.   Plus I've had intravenous iron in hospital for other reasons and it didn't help at all.

Arach

[Esplanade]

I too have had this for many years, and just recently it has progressed to the entire body.
I mentioned that to my sleep Dr. and he didn't comment, so I don't know if that is common or not.
I don't have it every night, but there are things I find that do aggravate it. Cold medications are the worst, so I stay clear of them.
I can't have manipulation of the spine so that is out.
I have tried calcium supplements along with Magnesium. I am also on Immovaine, when needed. Also Bacloven and Quinine.  I don't take these all together, but some help at times, so I alternative when the hebbie jebbies are getting the best of me.

[DrNoopurMD]

Hi,

Iron supplements have been found useful in management of RLS.
Apart from this non drug musculoskeletal approach has been developed by doctors in UK which has given relief to almost 80% of sufferers.
This therapy is based on the hypothesis that the cause of RLS is somatic dysfunction at the lower lumbar spine and so manipulation of the lower lumbar spine is done.
The results have been excellent. You can discuss this with your treating doctor.

Good luck!

[arachnaphob]

If you find something that cures it, LET ME KNOW.

I have started on Sinemet and I think it has helped a little (could be placebo effect).

I don't think that people can understand how distressing RLS can be. It sounds so innocuous.  I think they should change the name to Legs With Wriggling
Maggots Sensation.  Then people can imagine trying to keep them still under those conditions.

Good Luck

Arach