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Restless legs
uschi66 posted:
Hi I suffer from restless leg syndrome, almost every evening when I go to bed. It's awfully uncomfortable and annoying. My fibro consultant says there is nothing that can be done... Anyone with similar issues? Any advice highly welcome! Am on gabapentin, SSRIs and beta blockers for tachycardia.
dakotaspirit1957 responded:
Hi Hun... I did a little research for you on RLS... I found some sites that might help you find things that might help you sleep better... I hope you can find something...

The first one is the RLS organization... They have some pretty good info... I hope this all helps... I have Parkinson's Disease and my legs rarely stop moving... My psychiatrist recently put me on tegretol for manic depression... And about 3 weeks into taking it I noticed that when I was sitting my legs weren't moving a lot... Which before you couldn't stop them... They constantly moved and jerked... And kicked people lol... After it's 6th week my right side is almost totally still... at least my leg is... My arm and hand still trembles and jerks but not as bad as before... And it more shakes now then tremors and jerks... My left side remains the same tho... And laying down in bed I still have activity in both legs... That hasn't slowed down...

I understand the uncomfortable feelings and pain of what you go thru every night... Mine might be a bit complicated with the Parkinson's and MS and the RSD when it flares... But proactive legs are the same no matter why... And getting rest is just a pain...

I try to use a lot of relaxation techniques... soft music... concentrating on a certain part of it... the drums... the vocals... the instrumentals... And/or meditation and imagery... Taking myself to my favorite spots... Where the pain doesn't exist... Where a hug doesn't hurt and people can hold and touch me without pain... Where I am safe from negativity... And even if I feel a tremor thru it I am still OK and at peace... Somewhere I can watch the soft rain making ripples in the ponds water... Leaning in the arms of the man I love... Feeling all the inner love, peace, and contentment only happiness can give you...

I don't know if I have made any sense here... My brain is a bit foggy this morning... And my pain just don't want to listen to my pain killers yet lol... Sorry if I rambled...

Take care... love... Jan/Dakota
foreversore responded:
I have RLS and my doctor has me take 1 mg of generic Klonopin at bedtime. It couldn't hurt to ask your doctor if this is an option for you. It does help me most nights but on stormy, rainy nights the RLS breaks through the Klonopin to one degree or another. I hope they can find a solution that works for you as I know how uncomfortable and disrupting RLS can be.
SilverDove7 replied to foreversore's response:
I take requip for my restless legs and it does real well.

uschi66 replied to dakotaspirit1957's response:
Thank you so much Jan, you're a star - that's fantastic information! what you wrote makes total sense, you have found great ways and means to manage -I can totally relate to them hope you are having a good day today. Despite all , the glass is always (of at least most of the time, lol;) half full and I manage to at least try to enjoy every day - what else to do?
uschi66 replied to foreversore's response:
Dear foreversore Thanks so much for your help , I'll look up klonopin and will check with my GP
booch007 responded:
All suggestions look good. Renexa and Klonopin are what I know too.....but I also use a heat pak to my back and it seems to settle the nerves that eminate from the spine there and stop me from all the movement.

I rub my legs at the ankle level over and over and over. It is so amazing to watch. Usually when in the recliner I have this after a long day. I can't help I turn on the *famous* heat pad and put it to my lower back and (maybe I am just conditioned at this point) The muscle relax and the back settles in and the twisting gets better.....

Just a non medical thought to try.......Good luck, Nancy B
jillylin responded:
I am not sure what medications you can have in the USA but my doctor prescribed Ropinerole for me. I took it for four or so months and it really helped. I wasn't allowed to stay on it for some reason but so far the RLS is still now managable without the medication.
Jilly in the UK
uschi66 replied to jillylin's response:
Hi jilly thanks for your advice - I live in ireland, so sort of next door will check with my GP ASAP. Would you know if fibro sufferers are entitled to any sort of disability benefit I the uk? Here we are trying to get better recognition from the stat at the moment. Best wishes
LeanneEsteves responded:
I get the same thing here and there right before i go to bed,its like i just cant get my legs comfortable,i toss and turn,i know for sure what your going through
foreversore replied to booch007's response:
Nancy, mine seems to start with my feet rubbing together then it moves up to my ankles and then the twitching and jerking start. I may try your heating pad suggestion too. I know for sure I have lumbar discs pressing on nerve roots so maybe heat in that area will help
booch007 replied to foreversore's response:
That is how it is with me...the legs to the ankles are needing to rub together....I just swish and swish away...but I stop it at that level with the heating pad. I don't take meds for it.

I just see that I am beginning this pattern and get the heating pad to settle me down.

Funny (not) that we all have a bit of eachothers things....

I find this disease so amazing in the sensations and sactions my body presents and trying to figure cause and effect so I can fix it.

Like burning toes all of a sudden while driving....I wiggled the calf muscle waiting at a light and held the break with the is so silly to even try to explain to a doctor..

Goos luck, Nancy B (Hope my trick helps)
uschi66 replied to booch007's response:
Hi nancy b, thanks for sharing you 'trick' and experience. We all experiment with what may help and it's sooo individual, but again we all seem to experience quite the same. Trying g to figure out what caused fibro in a person is quite a challenge - there's a good article on wiki, just google Wikipedia fibromyalgia. This article explains quite detailed the how's, what's and possible whys. But the again, we all gave our own story... Good luck

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