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.

@suecreader

Amen to that @susan2018! I quickly learned as my restless legs progressed that alcohol not only started them, but it worsened through the night. You mention wine, but for me, it is any kind of alcohol. It used to be that I couldn't drink any after 6:00, and over the past years, the time has become earlier and earlier so that now, if I drink alcohol at all, it can only be one beer or one glass of wine before 3:00 p.m. I do miss the occasional glass of wine at dinner, but the after-effects are not worth it. The same is true with any product containing caffeine – chocolate, Bufferin, or coffee. As for SSRIs, they worsened my symptoms as do Ativan, Compazine, Klonapin, etc. My Sleep Center doctor suggested I use only Wellbutrin for treatment of depression since studies have shown that SSRIs especially aggravate restless legs. So, you are right about the SSRIs too . . . I was taking Celexa and when I switched to Wellbutrin, it worked even better for me than Celexa.

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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!

Liked by barbarn

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@suecreader

@suscros68 – have your RLS symptoms become worse as the years progress? Mine have. . . and I sincerely hope they've reached a plateau by now. I've had symptoms beginning with slightly aggravating and occasional to nightly and much more intense. I used to take Requip, but it stopped working and I had to start increasing to larger doses which then had side effects that made it difficult to function the next day. Now, I'm taking Neupro, a transdermal patch that is 'in the same family' as Requip, and so far I'm up to 3 mg and that dosage seems to work for me. I'm sensitive to many medications as well, and I was told by a fibromyalgia doctor at Mayo that it is common for people with fibro to have many sensitivities. I only mention fibro in case you might have that diagnosis or condition also.

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@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.

Liked by Lisa Lucier, barbarn

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@susan2018

In case it might help someone, there are two things that I have discovered activate my RLS : wine at dinner, probably any alcohol, as well as SSRI medications. Even when avoiding these, I occasionally still experience symptoms in the evening, particularly when fatigued and relaxing in a recliner chair, but they are much less intense and more tolerable.

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@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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@suecreader

Sorry @barbarn – I realized that I hadn't responded to one of your last posts. I may not be "much younger" than you since I am 67 . . . . I can't remember if I mentioned that my RLS have always kind of been there but mild at first, but they have been increasing severe for the past 20 years or so. I do believe, and my Sleep Center doctor confirmed it, that 'any pain below the waist aggravates RLS." So you are right about that . . . now that my surgery is done, and I'm feeling better physically, and the pain is minimized in the lumbar area (although now the doctors think I may have some bone-on-bone in my hip area . . . so this is 'another level of pain' that might need to be addressed). It could also be sciatica. I don't know if fibro contributes to RLS – I do think that lack of sleep can make people more exhausted, and with fibro it does complicate the whole healing process. Thanks for your good wishes . . . . I hope so with the Neupro too. Like you mentioned earlier . . . I am hoping if not, I can switch between Neupro and Requip since the latter worked for nine years but then stopped, pretty abruptly.

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@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.

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@suecreader

@suscros68 – have your RLS symptoms become worse as the years progress? Mine have. . . and I sincerely hope they've reached a plateau by now. I've had symptoms beginning with slightly aggravating and occasional to nightly and much more intense. I used to take Requip, but it stopped working and I had to start increasing to larger doses which then had side effects that made it difficult to function the next day. Now, I'm taking Neupro, a transdermal patch that is 'in the same family' as Requip, and so far I'm up to 3 mg and that dosage seems to work for me. I'm sensitive to many medications as well, and I was told by a fibromyalgia doctor at Mayo that it is common for people with fibro to have many sensitivities. I only mention fibro in case you might have that diagnosis or condition also.

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@suecreader – stupid question – but where is the patch located on your body?

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@degarden_girl

@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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@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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@barbarn

@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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@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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@susan2018

@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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@degarden_girl sounds good have to try it

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@susan2018

@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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@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!

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@degarden_girl

@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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@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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@barbarn

@suecreader – stupid question – but where is the patch located on your body?

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@barbarn – not a stupid question at all . . . it's one I would have asked too. Actually in with the box of patches, the company has included a picture/outline of the human form: front, back, and side views, complete with shadowed areas where the patches can be placed. They are to be rotated every day, and there is a total of about 16 different points where they can be put. I write a number on the area where i am placing a patch that night so I can keep track, otherwise I would forget. It makes it much easier to remember and manage. I hope that makes sense – I don't think I explained it every well.

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@barbarn

@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.

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@babarn – again, you're right about the piriformis muscle. That has given me fits in the past, and it still does. Actually I'm having an injection to try to determine if the primary residual pain I'm still having after lumbar surgery is more in the hip or the piriformis muscle. That pesky area, when inflamed, takes forever to settle down again it seems. I used to do yoga and loved it since it helped me stay flexible and some of the poses did stretch out that muscle. However the lumbar surgery has made my spine rigid enough due to the hardware there that I can no longer twist. My physical therapist gave me exercises to strength the muscles around that area, and I think it helps. Sometimes sitting on a too-soft chair will make it start to ache ("it" being the hip or the piriformis, I'm not sure which) and those effects can hang around for several days. The Sleep Center doctor also said any pain or trauma below the waist can make RLS more intense.

Liked by barbarn

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@susan2018

@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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@susan2018 I don't know if higher doses of Vit D3 will work for everyone with RLS, but it is such a benign supplement it seems worth a try. It seems to be recognized that up to 5000 IU is perfectly safe. I know people take much more than that but since it is not a water soluble vitamin and thus the excess is not excreted, it is best to first try the lower doses. If you are on medication and get break-through RLS, try the D3 in addition to your medication, and if it helps, you know you are on the right track.

One of my sisters had RLS and also had a low Vit D on a blood test so her MD had her get an injection. The RLS stopped and she mentioned it to the PA when she had a return visit and the PA told her it was because of the Vit D. So, now she takes 1000 IU each night and RLS has not returned. So, I too have RLS and started taking 1000 IUs of Vit D. It didn't do the trick so I began to increase the dose by 500 IUs a night. I got to 4000 IUs and that took care of it and has done so for a number of years now. And then another sister developed RLS and she went right to the 4000 IU and that took care of it. Our mother had severe RLS which would keep her pacing all night. She ended up on Gabapentin and another script which was a great help. I wish I had known about the Vit D back then as it certainly would have been worth trying.

Just as an aside, my Vit D was in the normal range both before and after I began taking the higher dose of D.

There is so much that medical science doesn't know about so many situations and very few MD's look at anecdotal reports and instead go to the medications recommended by the drug companies. Maybe Vit D won't help but maybe it will and what a benign resolution to this horrible syndrome. If my RLS returns, I will up the Vit D, but will discuss with my MD before exceeding the 5000 IU recognized safe limit. I know some people take 4 X that without adverse effects but I would want my MD checking my blood for a build up. I found the kind of rubbery capsules to be a better choice for me as I guess they might dissolve more quickly.

I wish you good luck in your search for relief from this horrible syndrome.

Liked by barbarn, suecreader

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@degarden_girl: Thanks again for this info — the last couple of nights I've started having some breakthrough symptoms even though I'm still using 3 mg of Neupro per night. So far, I've only been taking it about 2 1/2 months — darn! Tonight – I'll add more Vit D.

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@suecreader

@degarden_girl: Thanks again for this info — the last couple of nights I've started having some breakthrough symptoms even though I'm still using 3 mg of Neupro per night. So far, I've only been taking it about 2 1/2 months — darn! Tonight – I'll add more Vit D.

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@suecreader I do hope you have some success with the D. I'm finding the effectiveness of the D hasn't worn out so maybe you just want to up your D to the 4 or 5,000 IU range and see if you have some wonderful results. Don't hold back, you have nothing to lose but your RLS!

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