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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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Fellow sufferers of RLS - everytime I sit down to relax my one leg goes crazy with pain and/or movement!!! Fortunately/unfortunately all my problems at this time seem to be localized on one side. I bought a little tens unit one day while shopping at Target - "impulse buying" at the extreme! But it's one purchase I LOVE!!! Made by Icy Hot,It has adhesive pads so you can place wherever you think you need the relief, but I have found that closer to spine is best for me. (It comes with decent instructions). It is battery operated, runs on CR2032 batteries. i do turn it on before I place it on my back as it's a little difficult to find and start with 'old' fingers. There are + or - buttons to push, I have found it necessary to push the + button several times to get it to where I can feel the electrical current. If you want less current push the - button, but for me I want all the current it has!! More drs need to know about this! I went to the Amazon site today and was amazed at how many different tens units there are for sale! And you can read the reviews there! And shop for the best prices!! I do take prescription meds, but when all else has failed, this little unit has saved me!!!
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1 Reaction@dizzydaisy what study on RLS is Mayo doing?
I read about it on Mayo website, I think??? I live in MO and Mizzu is recruiting for a study. I haven’t went too far on reading more yet. I have an old Tens (with all the wires and it’s annoying to wear around. I’ve have seen the one your talking about. I may have to invest in one now. I have very good relief with the Lidicaine patches. I buy the small ones and put them where it’s needed. I may have 6 on my butt, hips, tailbone, leg, neck!!! Any where it hurts!!
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2 ReactionsHi, @barbarn -- here is one currently enrolling Mayo Clinic study on RLS: https://mayocl.in/2KiIPWO
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2 ReactionsYou go girl! My gin is already in the tonic!!! Amazingly enough, it didn’t do much!
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3 ReactionsI am curious...how does your RLS act? My RLS spells are off and on. It used to be only at night, but now, I usually have a spell in am and one in pm. The spells can last 30 min to 3 hours. I can feel the sensation start and grap the oxy & requip. I also have bad SI joint problems that causes a severe burning sensation. When that starts so does RL. Also have 5 cervical fusions and 4 lumbar fusions. Has anybody out there considered medical marijuana? Not legal in MO., but I would try it if I could. Any of you have pain stimulators? That’s probably a different group.
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2 Reactions@dizzydaisy Oh, to be able to have an alcoholic beverage now and then, particularly wine with dinner. I really miss that. I'm not sure if us post-transplants patients cannot drink due to fear it will cause liver damage, even when our problem was not alcohol, or if it's not good with immunosuppressants. I don't see my transplant doctor again until December, I will have to ask him then, even though I know it won't change anything. The nurse who is currently the go-between is not that useful unfortunately.
JK
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1 ReactionOH my! You have had a LOT done to your spine!!! Just wanted to tell you - medical marijuana is available in Colorado. It might be worth trying. It has been helpful with children that are epileptic, so it certainly might help you, given that it all your problems probably originate in your spine. Do you have a dr that you could talk to about using marijuana?
Guess I could relocate!! I love the mountains. My Mom’s busy friend from grade school lives in Oregon...she said she’d take me in...something to consider.......
I’m at stage 3B kidney disease and I have restless leg syndrome. Anyone else have that?