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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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Hi, @pcka, @dizzydaisy, @sheeb @barbarn @lknightb @vickiekay -- just wanted to check in and see how things are going with the restless legs syndrome? Have you found anything else lately that is helping you?
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1 Reaction@dizzydaisy- you have had so much! and so has @sheeb, with kidney disease - I feel guilty even complaining about RLS.. I did read about the clinical trial for RLS that you mentioned, @lisalucier, however to participate it sounds like a trip to Rochester to be diagnosed. Right now, between the little tens unit, gabapentin, requip and tramadol or oxycodone, I'm hangin' in there. Not sure, at 80 years of age that it is worth a trip to MN. BUT, in a recent issue of AARP magazine there is mention of a device to treat pain - it's an electrical stimulator also - one you put around the calf (near the knee), or I think in another issue they also mentioned a headset , both by Quell. I just Googled Quell and got more information about it. It's kinda pricey - $250 - but cheaper than a trip to Rochester (for me, anyway). Might be worth checking out...
You are right, @barbarn -- @dizzydaisy and @sheeb have both had so much to deal with. My thoughts are with you both.
Glad your have found some things, @barbarn, that are helping you with your medications and tens unit.
Have you gotten to read any study data in AARP or elsewhere about this other electrical muscle stimulator device you are considering, @barbarn?
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1 Reactionnope - only the couple paragraphs in AARP (different issues) magazine and the Quell website - no actual studies.
interesting tho' - going thru some of my other notes - there is a place on the leg, outer side, just below the knee, called the Zu San Li point, to massage and meditate. Massaging that area is supposed to bring great positive effects. it appears that is about the same location for the Quell device to be placed. Wonder if there is a connection? rich nerve supply?
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2 ReactionsI am 73 YO female with RLS. My Mom had it and several of my sisters have it. Three of us have found doses of 1000 to 4000 IUs of Vitamin D have been very helpful in controlling RLS symptoms. Certain medications exacerbate the problem, such as Benadryl or other such meds, Ambien and other sleep meds. Gabapentin does help but that med comes with its own set of side effects. For me, 4000 IU's of Vitamin D saved my mental health.
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2 ReactionsI'll try that!!! thank you.
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1 ReactionHave tingling, burning in legs and general aches every day. Very difficult at night when trying to sleep. Have read this blog and several recommendations of gabapentin. I have been on this for a year for trigeminal neuralgia. Will try tonic water and vitamin D, which I am deficient in. Crossing my fingers that this will help.
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1 ReactionHi Dolly715,
If you haven't already, I think it would be best for you to see a specialist for a diagnosis of RLS as the "general aches" isn't something I have experienced with RLS. I think trying Vit D at 1000 and as high as 4000 units is likely safe and you should have an immediate result with RLS. I suggest taking it at bedtime. (The RLS symptoms are, in my experience, the compulsion to move your legs, sweeping up and down.) However, if overall, the Vit D doesn't help you to feel better, please see your primary and possibly get a referral to a specialist to determine the source of your discomfort.
I wish you well and hope you find the Vit D relieves your symptoms.
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1 ReactionThank you for your answer and will post if Vit D is helpful. I have chondromalacia patella and going through phys therapy to no avail. Seeing orthopedist next week. Have told phys therapist about leg burning and tingling ;he did not believe it was related. Also had Doppler test for poor circulation; don’t have results yet. Hopefully, will have some direction soon.
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