NeuroTalk Support Groups - Restless leg syndrome(RLS)

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mrsz	09-04-2014 02:49 PM

Restless leg syndrome(RLS)

I have been diagnosed with small fiber peripheral neuropathy and I take cymbalta which seems to help a bit. I also have RLS which at times is worse than the burning and pain because it really interferes with any kind of ready. Does anyone else have both and did they begin at the same time? I had mild RLS until I was diagnosed with PN now it is so much worse.

Kitt	09-04-2014 03:55 PM

Welcome mrsz. :Wave-Hello:

Someone will be along to help.

pabb	09-05-2014 03:39 AM

Quote:

Originally Posted by mrsz (Post 1094082)

make sure you are not anemic, or even border line. perhaps some magnesium will help.

Susanne C.

09-05-2014 08:13 AM

I have had restless legs since I was a child, it can accompany hereditary neuropathy, (Charcot Marie Tooth- CMT). My neuropathy is pretty far advanced now, at 52, but my symptoms in childhood were clumsiness, inability to run, poor balance. Numbness started in my early 30's and is moving into my thighs. Do you have any idea what caused your neuropathy? Does anyone in your family have it? Are you experiencing muscle weakness?

Mrs.Redman

09-05-2014 02:51 PM

Quote:

Originally Posted by mrsz (Post 1094082)

I have SFN. I use gabapentin for now and it seems to help. My specialist said that Cymbalta can help people whose pain is mostly in their legs. It works for some but not everyone.

I believe there are other medicines out there for restless leg that you should ask your dr.about or the pharmacist, who can give you suggestions to ask your dr.about. Also, have read that low iron can be a cause of restless leg. But, please, don't start taking iron pills until you have your levels checked. Iron can cause bad constipation and it take a very long time for it to build up in your body.

The best advice is to do your homework on SFN, restless leg and talk with your neurologist. You are your own best friend and advocate to feel better.

mrsD	09-05-2014 05:34 PM

SSRI and SNRIs can mke restless legs worse.
This is due to their negative effects on dopamine in
The brain.

Google "SSRI drugs movement disorder" and you will
Find these explanations. Time on the drug is typically 6 months
Or so before the movement problems arise. They start in the
Face and neck and in some patients may cause leg cramps
Or restless legs.

mrsz	09-06-2014 07:04 AM

Quote:

Originally Posted by Susanne C. (Post 1094274)

This sounds like me. I am 55 but was also a clumsy kid. I was diagnosed 1 year ago with SFPN but my initial symptom was muscle weakness. Difficulty with any kind of incline. The restless legs have been there for years but very mild until the neuropathy symptoms kicked in. Feeling like I have socks on. Numbness,burning ,tingling in the feet and now legs. I also have significant joint pain in my knees, hips and low back. I struggle with any stairs. No family history that I know of.

Susanne C.

09-06-2014 08:43 AM

Quote:

Originally Posted by mrsz (Post 1094500)

I think that you should do a little research on CMT. The stairs are a real tip off, as are the childhood symptoms. Many people get a more mild expression of it, settling in so late that it seems like symptoms of aging so it may run in your family without having been obvious. My father drank heavily for the pain and had trouble getting out of chairs even in his 40's, but never said what it was, on the other hand my half-sister wore leg braces since childhood. Not having a family history doesn't rule it out.

I wasn't actually part of their family, so I had no idea until I was 47 and the podiatrist said he couldn't continue to treat me until I went to a neurologist- I had a serious staph infection in my foot with no feeling at all- he didn't even have to numb it to cut away the surrounding tissue.

Because of the specific muscles that atrophy with CMT, stairs are our nemesis. I keep clothes downstairs to limit my trips to once or twice per day, and I crawl up. Even slight hills are very difficult and painful. I still enjoy walking in he woods but it is very flat where we live on the east coast. I use two hiking poles. For stopping and starting destinations where there is any amount of standing like museums or airports we use a wheelchair.

It is progressive and there is no real treatment but there are things you can do to make life easier. I also have arthritis of the spine, hips, and knees, so completely understand.

mrsz	09-06-2014 11:18 AM

Quote:

Originally Posted by Susanne C. (Post 1094510)

I think that you should do a little research on CMT. The stairs are a real tip off, as are the childhood symptoms. Many people get a more mild expression of it, settling in so late that it seems like symptoms of aging so it may run in your family without having been obvious. My father drank heavily for the pain and had trouble getting out of chairs even in his 40's, but never said what it was, on the other hand my half-sister wore leg braces since childhood. Not having a family history doesn't rule it out.

I wasn't actually part of their family, so I had no idea until I was 47 and the podiatrist said he couldn't continue to treat me until I went to a neurologist- I had a serious staph infection in my foot with no feeling at all- he didn't even have to numb it to cut away the surrounding tissue.

Because of the specific muscles that atrophy with CMT, stairs are our nemesis. I keep clothes downstairs to limit my trips to once or twice per day, and I crawl up. Even slight hills are very difficult and painful. I still enjoy walking
in he woods but it is very flat where we live on the east coast. I use two hiking poles. For stopping and starting destinations where there is any amount of standing like museums or airports we use a wheelchair.

It is progressive and there is no real treatment but there are things you can do to make life easier. I also have arthritis of the spine, hips, and knees, so completely understand.

Thank you Suzanne. I am now very curious about CMT and will ask my neurologist about it at my next appointment. I am in CT and purchased a pair if walking poles this winter for a trip to NYC. I had fallen the last time I was in the city.
Do you take ropinerole for your RLS? I feel like I am suddenly on so much medication.

Susanne C.

09-06-2014 11:59 AM

Quote:

Originally Posted by mrsz (Post 1094527)

No, mine is not as bad as it was when I was younger, though I still do a lot of leg bouncing and pacing. It isn't worse at night as it is for many people. I am on Gabapentin and MS Contin ( time release morphine) for the nerve and muscle pain, and Baclofen for the muscle spasms, so am on a fair amount of stuff already. With this combination I am able to function at home, cook, drive a little (the numbness in my leg makes driving more than a few minutes impossible). Every year I am able to do less which is depressing, but at least I have time to plan. Right now I am desperately trying to get the house decluttered before I can't get to it anymore. I have nightmares of something like Hoarders where I am in a wheelchair and my stuff falls on me.

Also, I remember the early ads for the medication for RLS, saying something about increased sex drive. It struck me as a comical but somewhat terrifying side effect. I hope they ironed that one out....

jarrett622

09-08-2014 06:43 PM

I had the RLS years before I was diagnosed with PN. It seems it often goes hand in hand. It's miserable isn't it?

Ultram helps and for times when the Ultram isn't enough I have Mirapex. Normally Mirapex is taken on a schedule and must be titrated going on and weaned off of. But for me I take half a pill of the starting dose and I have relief within a half hour. I know it doesn't work for everyone but it's worth a try.

Gabapentin (generic Neurontin) helped with it when I first started taking it. Then they doubled my dose and I became suicidal. I stopped taking it cold turkey and within about 4 days I felt better again. They won't give me Lyrica because it's a related drug.

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