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Restless Leg Syndrome
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.
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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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1 ReactionRight now I’m ready to throw the gin into the tonic!
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1 Reaction@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
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1 ReactionI have been using a foam roller before bed. I roll out all my leg muscles, and my back. It really helps!
I have been rolling out my leg muscles with a hard foam roller before bed. It works!
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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2 ReactionsHi, @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?
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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3 ReactionsHi, @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?
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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