Restless Leg Syndrome

Posted by jimbourg8 @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.

I’m really glad Gaba works for you. Yes it helps me alot especially in the evening while I am watching TV or ready and sitting still. I have to ususaly take 2 , 300 mg tabs to help calm the restless nerves……..doesnt completely go away but …sure does help tolerate it ! It does help with sleep but I still have to take at least a 5 mg ambien to get me to sleep. I also alternate the Ambien with Klonopen to help me sleep . I have to carefully “balance” the intake as side effects of those meds…make one dizzy or balance problems from time to time. Each person has to learn how to regulate their doses as we all respond a bit differenty……….

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@jimbourg8

I’m really glad Gaba works for you. Yes it helps me alot especially in the evening while I am watching TV or ready and sitting still. I have to ususaly take 2 , 300 mg tabs to help calm the restless nerves……..doesnt completely go away but …sure does help tolerate it ! It does help with sleep but I still have to take at least a 5 mg ambien to get me to sleep. I also alternate the Ambien with Klonopen to help me sleep . I have to carefully “balance” the intake as side effects of those meds…make one dizzy or balance problems from time to time. Each person has to learn how to regulate their doses as we all respond a bit differenty……….

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I was tested for restless leg syndrome. My dr asked if I was taking antihistamines ( which I took on and off). For me-every time I took BENADRYL my legs would get ‘restless’ and my muscles would tighten and cramp up. By not taking it I was fine. Odd huh!! Lynn

Liked by cjc56

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@jimbourg8

I’m really glad Gaba works for you. Yes it helps me alot especially in the evening while I am watching TV or ready and sitting still. I have to ususaly take 2 , 300 mg tabs to help calm the restless nerves……..doesnt completely go away but …sure does help tolerate it ! It does help with sleep but I still have to take at least a 5 mg ambien to get me to sleep. I also alternate the Ambien with Klonopen to help me sleep . I have to carefully “balance” the intake as side effects of those meds…make one dizzy or balance problems from time to time. Each person has to learn how to regulate their doses as we all respond a bit differenty……….

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I agree Jim. We all have to take the information we are given and find what works best for us. They actually want me to take 2- 300 mili pills, 3 times per day. The ones at night for my legs and the rest of the dosage to posibly help with some deep brain seizures they think i might be having. Gabapentin was originally created to be a seizure medication.
That is odd, Lynn. I had been taking Tylenol PM to help me sleep at night, and my doctor told me that it has Benadryl in it and not to take it any more for sleep. That could have been making my RLS worse. Good to know, Thanks!

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@vickiekay

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!

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Thats interesting that it would work for you. But I highly doubt it. Is
there any scientific medical evidence in any journal to support this ? I
could try this but my problem is not “jitters”. It’s an actual burning
sensation on my pressure points from sitting in one place or pressure on my
elbows etc…only relieved by moving or getting up and mostly worse in the
evenings. It’s hard to believe it would be more effective than say
gabapentin……..but what the heck , anything is possible I suppose. It’s
worth a try….will comment when I have done this.

James G. Bourgeois

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I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and gabapentin for nerve pain. Neither drug is working any more I’m at the point that I hate going to bed, it also is severe when I sit or lay on couch. Has any one tried stem cell therapy for treatment? Thanks for replies

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@pcka

I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and gabapentin for nerve pain. Neither drug is working any more I’m at the point that I hate going to bed, it also is severe when I sit or lay on couch. Has any one tried stem cell therapy for treatment? Thanks for replies

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Hello @pcka,

Welcome to Connect. Battling restless leg syndrome for 30 years sounds really frustrating, I am sorry to hear that.

We have a lot of conversations here on Connect about Stem Cell therapy, but most are centered around joints or Bone Marrow Transplant for treating hematological diseases. However, as a result, I have done my own research in to what Mayo Clinic is doing with Stem Cells. The following information is what I found out regarding a consultation service number Mayo Clinic has as it pertains to Stem Cell therapies:

Regenerative Medicine Consult Service Process

Transplant Call-in Center
844-276-2003

What to expect when you call the number:

– An employee will answer and ask the nature of why you are calling
– Say you are interested to stem cells for osteoarthritis or whichever joint ails you
– The employee will funnel your call to the appropriate coordinators from there
– For joint issues, you will be transferred to PMR (Physical Medicine & Rehabilitation)
– Appointment coordinators will ask more specific questions (inclusion and exclusion criteria)
– If you meet the criteria:
– You will be asked to send in your records and a doctor will look at it in a case-by-case basis

Important Notes to be Aware of:
– PMR is a busy practice, so wait times may exist but answers will be given
– If a treatment exists in the clinic for a diagnosis (i.e. Leukemia) stem cells are not offered
– Price is out of pocket
– Types of stem cell treatments offered are Bone marrow aspirate concentrate (BMAC) injections and Platelet rich plasma (PRP) injections. You can find more specific information on these types of injections here, http://mayocl.in/2AUIoAn.

If you’d like, you can feel free to call the number above and ask them the specific questions you have and they will be much better suited to answer your questions than I ever could be. If you don’t mind me asking as my own knowledge is limited about restless leg syndrome, are Parkinson’s pills regularly prescribed for this condition? If it is not too personal, are you also battling Parkinson’s?

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@vickiekay

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!

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Right now I’m ready to throw the gin into the tonic!

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@pcka

I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and gabapentin for nerve pain. Neither drug is working any more I’m at the point that I hate going to bed, it also is severe when I sit or lay on couch. Has any one tried stem cell therapy for treatment? Thanks for replies

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@pcka

Welcome to Connect. I don’t have a diagnosis of restless leg, but I’ve always acted out my dreams, and my wife was about to kick me out of our bed. Twelve years ago, I started taking Klonopin for anxiety, and it has helped that, but another effect has been to stop my legs from kicking out at night. I may or may not still need it for anxiety, but my wife, though she thinks I’m on too many meds, is against me stopping Klonopin, and the doctor concurs. Just an observation. I can’t imagine living with the syndrome for 30 years. As with any chronic medical condition, it surely must be wearing.

I’m glad you found the group, and I hope that you find something that will give you relief.

Jim

REPLY
@vickiekay

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!

Jump to this post

I have been using a foam roller before bed. I roll out all my leg muscles, and my back. It really helps!

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I have been rolling out my leg muscles with a hard foam roller before bed. It works!

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Just two quick ideas….I have some good results with 1) Alka Seltzer Gold – available from Amazon – it resets the pH level in the body; and 2) Tonic water with quinine to help the restless legs. I like to add a little fruit juice to sweeten the sour taste. Both of these seem to help with the shakey quivers that I get due to RD and CRPS. Best wishes…

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@julchilds

I have been rolling out my leg muscles with a hard foam roller before bed. It works!

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Hi, @julchilds — welcome to Mayo Clinic Connect. Thanks for the tip about using a hard foam roller to roll out your leg muscles before bed.

What has been your history with restless leg syndrome? Is this something you've had for quite some time?

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@julchilds

I have been rolling out my leg muscles with a hard foam roller before bed. It works!

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I think I’ve always had restless legs. I am also a terrible sleeper,very restless, easily awakened and not so easy to fall back asleep, (although I fall asleep heavily as soon as it gets dark). I realized recently how well I slept if I rolled out my legs, and back, sometime before bed. Drugs are not an option for me, I have a delicate balance going on here, so I was happy to discover this. I hope it keeps working.

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@pcka

I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and gabapentin for nerve pain. Neither drug is working any more I’m at the point that I hate going to bed, it also is severe when I sit or lay on couch. Has any one tried stem cell therapy for treatment? Thanks for replies

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Hi, @pcka — just wanted to touch base and see how you are doing and how it's going with the restless legs syndrome? You'd mentioned your gabapentin and Parkinson's pills weren't working for this and sounded like you were interested in STEM cell therapy.

Wondering if you did try the stem cells?

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I have it too. I take requip and sometime tramadol. If the legs get really bad I have to get on my exercise bike for at least 10 minutes. This really seems to help. The bike was the best thing I ever bought to help relieve the symptoms of this horrible syndrome.

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