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.

@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 I also have had restless leg for over 30 yr and I also take parkinson med< Pramipexol 2 mg every evening. The Pramipexol helped when I first started it and still helps some but not as much as it did in the beginning. Some nights I have RLS so bad that I want to scream and the only relief I can get is to walk but as soon as I sit, it starts again. When my feet and legs are already on fire from neuropathy and the RLS sits in, I just want to die, its bad, really bad.

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I have no signs of Parkinson , but when you read the med information on THE PRAMIPEXOLE, it states that Pramipexole is also given for RLS. Also, I always thought it had something to do with the nerves but my PCP said no, it comes from brain. Mine started when I was early 20's but I didn't know what it was and it has gotten worse with age, I just turned a young 70 yr old.

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@zailey

I have no signs of Parkinson , but when you read the med information on THE PRAMIPEXOLE, it states that Pramipexole is also given for RLS. Also, I always thought it had something to do with the nerves but my PCP said no, it comes from brain. Mine started when I was early 20's but I didn't know what it was and it has gotten worse with age, I just turned a young 70 yr old.

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@zalley, @pcka,and all…
Well, hello, fellow RLS folks. I've had RLS for many years with a lot of discomfort, pain, burning, constant movement, poor sleep, etc. I saw an advertisement on tv for some drug for RLS, and thought it sounded a lot like my life. Never rec'd diagnosis until I had an overnight sleep apnea test at Mayo Clinic Jacksonville a couple years ago. I rec'd a definitive diagnosis, as well as severe obstructive sleep apnea.

The doctor at Mayo sleep put me on Vitron-C, over-the-counter iron plus C. My Iron level was extremely low at that time. The doc almost started me on iron infusions, but began the OTC first. It's slow to improve, but I am finally seeing a rise in the ferrous level. It's still low normal, but going in the right direction.

After taking the iron supplement for several weeks, I began to see improvements, from a higher energy level, clearer thinking, more pleasant outlook, and yes, my legs calmed and slowed down at night with reduction in pain and discomfort. I thought this was miraculous. Iron has only recently, last few years, been associated with RLS and it does make a difference.

I also am taking Requip, 1 mg nightly before bed. Wow! That was a miracle. Requip gave my legs new life, helped me in so many ways day and night. I noticed within a few days of starting to take this med, I walked more easily, could life my legs and feet, legs didn't feel like 1000 lbs tree trunks, don't keep moving all the time, much less burning and other yucky stuff. What an amazing difference.

I contacted my neurologist who agreed this might actually indicate some of my symptoms are Parkinson's related. I was tested fully for MS and Parkinsons, but both were determined negative. Apparently, I don't have Parkinson's, but do have Parkinsonism symptoms that are helped by treating the dopamine in my brain with requip. I'm in love with that drug! And, since taking iron and requip, I no longer take Lyrica, Lamictal, Gabapantin, or other pain and nerve/brain medications. I'm a different and far better person today thanks to these changes. Gabapantin and Lyrica did help me some, but I'm better now w/o them and with requip.

I also take Medical Marijuana, a 1:1 CBD:Thc tincture at night, 1 dropper, for relief from insomnia, anxiety, RLS, fibro pain, arthritis pain all over my body, cervical and lumbar vertebrae pain, and I use a bi-pap nightly. This regime is very good for me. I've tweeked it at times and will as needed, but I sleep all night now, with potty breaks of course-I'm 74 years old. I don't have seizures anymore. I feel so much better in general now, almost as tho my body is finally, finally synchronized. I feel almost, not quite, almost as tho I'm working on all cylinders for the first time in so many years, 50-60.

What a change I see in me. And, I like me better In fact, I like the world better! Fewer chemicals in this body, walking and 'exercising' in a warm therapy pool 2X weekly when I'm able, walking inside at Mayo between the buildings when I'm there and I pray at the mall again after I'm over the recent sinus surgery and can be in public. I have lots of things going on in this body, including sarcoid and vasculitis and an auto-immune system that's confused, so infections are a serious issue for me. But, I do hope to get walking again, just must be inside in controlled temps.

So, there you go. There is hope for those of us with RLS and it can be a real bugger of a condition. I'm here to tell you there is hope. I found the correct doctors, at Mayo, who are on top of the latest and diagnosed my conditions, got the diagnosis and proper treatment and I'm an improved model.

Blessings to you. I hope you will find the doctors who can and will take an interest in finding out what's happening and get you going in the right direction. It's then up to you, to us, to be proactive about our health. We must continue to push and ask and research the best sources and then fight our battles. It's only when you become your best fighter, supporter and take on the challenge that you will see improvement.
elizabeth

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