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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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@suecreader, yes! I switched to Wellbutrin also. Even though I have a history of anxiety more than depression and I understand Wellbutrin wouldn’t normally be the med of choice for that, I seem to be doing OK on it. As for alcohol, I joke that I should have my happy hour at 11 a.m. rather than 5 p.m. i know what you mean about after effects not being worth it. I ask myself that everytime I enjoy a glass of wine. I’m not sure about the effect of caffeine for me. I do drink coffee, usually only before 2p.m. I don’t know if I could bear the experiment of going without to see if it would make a difference. I did try Requip but it stopped working and after a time made my RLS much,much worse. Recently I saw a sleep medicine doctor for insomnia and he prescribed one to two 100 mg tabs of Gabapentin for RLS at bedtime. I’ve been taking one and am sleeping pretty much through the night for the first time in years. Best to you!
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1 Reaction@suscros68 @susan2018 @suecreader What a wonderful group of people on this discussion. I am learning so much about how other "chemicals" (caffeine, alcohol) affect the RLS. Thank you all for sharing your RLS struggles. Right now the Vit D3 has totally controlled the RLS but yes, this seems to be an age related issue and I expect as time goes on, the D3 might not do the job and I will have to move to "real drugs" to control it. Years ago (2010) I was put on Requip and other drugs usually prescribed for Parkinson's disease and those drugs made me so ill that I preferred the RLS! And that says a lot! But it looks like there are new meds now available that weren't available then.
BTW, I have found if I don't want to have wine with dinner, I enjoy tonic with a squeeze of lime in a pretty stemmed glass. It seems to fill the "something to sip on" desire.
Good luck to all of you ladies. You certainly have gone through a lot and I am learning from your experiences. I hope you find the perfect resolution that works for you to control RLS. It is a horrible syndrome.
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2 Reactions@susan2018 - yup - sadly no wine, or any other alcoholic beverage for that matter, for dinner. And - curious about the recliner - I have noticed that also. Yesterday after an hour in the dentist (reclining) chair, pain and RLS were AWFUL!!!
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1 Reaction@suecreader - one other thing that seems to be involved with hip pain is the piriformis muscle. In reading/studying all this information piriformis keeps popping up and I do think it helps to stretch it - I'm sure if you 'google' it you'll find some stretches you can do.
@suecreader - stupid question - but where is the patch located on your body?
@degarden_girl I don’t know why I hadn’t thought of tonic and lime (without the gin!) A perfect glass and perfect clear ice cubes add to the happy hour vibe. Although I’ve heard about low iron I hadnt heard about VitD.
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2 Reactions@barbarn I’m glad to know that others experience the recliner effect. Relaxation of muscles? Changes in circulation? I wonder. A friend once told me it would happen to him when he took his young child on his lap to read storybooks. I wonder what kind of chair they would sit in? Or was it the increased warmth of the child’s body and its affect on circulation, muscle relaxation and.....?
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1 Reaction@degarden_girl sounds good have to try it
@susan2018 Oh good! I'm so glad you're finding something (several things) that work. It's a process isn't it? In the meantime, discovering lifestyle changes that are needed can be frustrating and result in some sleepless nights. It's good you discovered Wellbutrin too I think. As I look back, I'm so glad I learned that about the anti-depressant at Mayo during my first visit there. I have anxiety (which in seems has also become more pronounced as I get older), but haven't had to take anything for that since starting Wellbutrin. My doctor who treats the depression has me check in every three months, and about six months ago, she suggested adding B12 in amounts of 1,000-3,000 mg. That has also helped my anxiety which is more situational than a daily or constant issue. I forgot to mention that I limit my coffee intake to just mornings also - and two cups is about my limit before I start getting a headache. Restless legs so far manifest earlier in the day than they used to, but so far, haven't started in the mornings yet. I too take Gabapentin at 4:00 to keep the RLS from starting, and I stopped an additional 600 mg at 9:00 since it had stopped being effective. I still need the 4:00 p.m. dose though. Best to you too - and here's too more nights of good and healthy sleep!
@degarden_girl - what a good idea to drink tonic with a squeeze of lime. That would have enough sparkle and taste to feel like a 'real' drink. Sometimes having wine or a mixed drink occurs more often during a social occasion for me, so holding a glass and having something to sip on would make it much more comfortable. Especially since I don't drink caffeine in the evening hours either. I too tried some of the Parkinson's drugs, and they had adverse effects for me. For some reason, Requip started off that way, but eventually the side effects lessened to the point that they were more bearable than not getting enough sleep. I was sorry when they stopped working.
You're right about this being a wonderful group of people - t hank you for your positive attitude and comments. It is important to feel encouraged and supported I think. So many people don't how debilitating (at least it feels that way to me) RLS can be.
Take care.
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