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jimbourg8
@jimbourg8

Posts: 11
Joined: Oct 25, 2011

Restless Leg Syndrome

Posted by @jimbourg8, May 14, 2016

I started having this burning feeling in certain pressure points in my body. Mostly on the elbows, under forearms mostly on my left side ….mostly worse in the late afternoon and evening. It’s usually burning and/or uncomfortable feeling when I am sitting down on couch or chair. the burning sensation like I said on pressure points of the elbows, legs, or butt when sitting even if only 2 mins or so and seems like I can’t remain still…….upon getting up and moving around it relieves the sensation. Went to neurologist 4 years ago……….he confirmed that it was Restless leg syndrome…………there are different types of RLS but the classic symptoms are a feeling of burning, tingling, and a general sense of unable to relax when quietly sitting or even laying down and relief comes when changing position and/or getting up. Diagnosis is by symptoms….there is not a definitive diagnostic test………all bloodwork etc…. is normal . I now take Gabapentin, and Klonopin to calm the “restless” nerves………..there is no cure for this ( my Neurologist says )……..It’s just something you have to learn to live with and take those medications for it……….It is believed there is a link between low iron (which I had) and and RLS . Now I take more iron (but that does not alleivate the symptoms so far . ( even when iron level becomes normal ) . I was diagnosed with low thyroid 5 years ago and started taking the levothyroxine to put my thyroid back to normal which it IS NOW. But even though I still have the RLS……..there is a possiblity that I had LOW thyroid for years before I was diagnosed with it……..hence I think (my theory) the RLS evolved due to the years of LOW thyroid. This is just my thinking on this. No Dr. Told me of that…..anyways I hope maybe this helps others and they can begin to pinpoint their symptoms and get a diagnoses.
I would love to know others with RLS and how they have dealt with it over the years. It seems to be a tricky act to balance the medications with side effects and still manage the RLS……..appreciate any feedback. Thanks Jim B.

REPLY

Hi. I have RLS. I have had it for over 10 years. I also have fibromyalgia, rheumatoid arthritis and sjogren’s syndrome. I am on several different medications. My iron has never been low. My thyroid is normal. I have been on Klonopin before. Did not work for me. I am now on Trazadone. It is working for me. The best thing is to be able to get some sleep, which is hard when your legs ache and you feel a need to move! If you are still having issues, I would try having a sleep study done. I would also try a different medication if you aren’t getting relief. Many doctors will tell you with RLS or fibromyalgia or other types of diseases for which there is no cure, that you just have to live with it. But you don’t. If that is what your doctor has told you, you need to find another doctor. I have gone through several doctors before I ever even got my diagnosis of fibromyalgia. It was a sleep study that gave me the diagnosis of RLS. Do not give up hope. I also was very low on vitamin D. I take supplements now.l I think it is helpful, too. Hang in there. You can get better relief than it sounds like you’re getting.

I dealt with RLS as well the only treatment that truly helped eliviate & eliminate the symptoms of RLS for me ultimately, was hypnotherapy.

Hi @jimbourg8, @blindeyepug and @AT2008, and thanks for sharing your journeys on Connect. I’m also tagging @lynnkay1956 so she can join the conversation as well.

@alysebrunella

Hi @jimbourg8, @blindeyepug and @AT2008, and thanks for sharing your journeys on Connect. I’m also tagging @lynnkay1956 so she can join the conversation as well.

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Hi, I also have RLS and OA. The feeling in my legs is as you describe. I am unable to relax until I take a Norco (low dose). It takes an hour for it to work before I can fall asleep.

Brenda

Try drinking Tonic Water….my Mayo doctor suggested a “gin and tonic
without the gin”! The quinine in the tonic water WILL take the jitters away
from the restless leg syndrome. I think that the tonic water tastes bitter,
so I mix it with crushed ice and a little fruit juice, such as cherry juice
or orange juice. It is AMAZING how much it helps after drinking a glass
every day. I use regular, not diet, tonic water. Best wishes!

Liked by pattitoo, julchilds

@AT2008

I dealt with RLS as well the only treatment that truly helped eliviate & eliminate the symptoms of RLS for me ultimately, was hypnotherapy.

Jump to this post

Hello, I’m interested to understand how hypnotherapy could help RLS ?
Exactly how does this work for you and hypnotherapy in general to address
medical issues ?

Hot baths, ice packs sometimes, but gabapentin works the best on nerve
pain, esp nuopathy, and non narcotic.

@briansr

Hot baths, ice packs sometimes, but gabapentin works the best on nerve
pain, esp nuopathy, and non narcotic.

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Blanket statements like these show bias, what works best for you is great but there is allot of harm done to those that cannot take or are not helped by neurotin

Liked by blindeyepug

@AT2008

I dealt with RLS as well the only treatment that truly helped eliviate & eliminate the symptoms of RLS for me ultimately, was hypnotherapy.

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I literally can not be hypnotized. Many, many people can not and, thus, will not find any relief from such a “cure”. I would save my money.

Just to let you know, I had a VERY bad experience with neurotin. It gave me suicidal thoughts. I would be sure someone could watch me for a few weeks and immediately report to my doctor any changes in behavior. Also, there are many other things to try. I would not recommend using that medication!

Liked by julchilds

@blindeyepug

Just to let you know, I had a VERY bad experience with neurotin. It gave me suicidal thoughts. I would be sure someone could watch me for a few weeks and immediately report to my doctor any changes in behavior. Also, there are many other things to try. I would not recommend using that medication!

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Well, everybody responds differently on any given medication. I have been using them for 4 years 600 – 900 mg/ per day with no adverse effects.

@blindeyepug

Just to let you know, I had a VERY bad experience with neurotin. It gave me suicidal thoughts. I would be sure someone could watch me for a few weeks and immediately report to my doctor any changes in behavior. Also, there are many other things to try. I would not recommend using that medication!

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Very true – everyone does respond differently to medications. I am very glad it is working for you. Because of my experience, it just is something I would never recommend.

@briansr

Hot baths, ice packs sometimes, but gabapentin works the best on nerve
pain, esp nuopathy, and non narcotic.

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I can agree with you completely on this………..gabapentin works for me in 1 to 2 hours after taking a 600 mg dose and I can really feel the difference…..the RLS does not completely dissapear but there is a marked difference and tolerance for the RLS…….of course this is only short acting for a few hours……..but there IS some relief…..which I am thankful for.

I have lived with RLS for many years. Everyone is different in the way and intensity that they experience their symptoms and mine varies from episode to episode as well. I have avoided medication by using different coping skills. A warm bath before bed or at a time if possible that the symptoms start. Really good stretching of the hips and lower back for 10 or fifteen minutes. Sometimes s hot water bottle on the small of the back. A deep massage of legs or arms ( if that is where it is being experienced). Sometimes a combo of exercises and then cool packs. Try as many physical options as possible. Hope you get relief as RLS is extremely disruptive to relaxation and sleep.

Liked by cjc56

@briansr

Hot baths, ice packs sometimes, but gabapentin works the best on nerve
pain, esp nuopathy, and non narcotic.

Jump to this post

I am getting great relief with Gabapentin. I have been on it for 3 to 4 weeks now. I feel like i have died and gone to heaven. I didn’t think i would ever know what it was like to sleep through the night and go from waking up anywhere from 6 to a dozen or more times a night to waking up once or even none at all. I had several nights each week that i wasn’t able to get to sleep until 4 or 5 in the morning. Getting up 4 to 6 times to stretch out my legs to try to get some releif, I tried elevating them, the heating pad, walking, a lot of days, nothing worked. I take 2- 300 mil capsules about 2 1/2 hrs before i go to bed. I am almost 60, and for the first time in my life, i feel like when i wake up in the morning, i am rested. I have never felt that before. I have suffered from restless legs, as far back as High School, never knowing what it was.

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