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

Thank you so much for taking the time to post this encouraging reply. It certainly does help to hear about your experiences, and I especially appreciated the story about the three people laughing at the diagnosis of restless legs. I’ve had that happen too, just as I have with the diagnosis of fibromyalgia. So many people, and ones who I would think have enough knowledge to not react this way have made statements indicating that they think this is a made-up condition or diagnosis. I’m glad you set those people straight and educated them. When suffering from lack of sleep it’s sometimes difficult to not be frustrated at lack of understanding of others. I was also interested to hear about your mom also having restless legs as well as you and your sisters. I am an only child, and I believe my father had them also, but there was no firm diagnosis of RLS years ago. He passed away from a heart condition when I was 28 so I’ve been inable to ask him questions about his symptoms. Ultimately though what matters is what works for us to get relief. You’re the second or third person who have mentioned vitamin D, and I am glad of the reminder so that I will ask my doctor about that also. The iron connection & taking more iron hasn’t seemed to give me much relief….interesting that she (the doctor) hasn’t suggested Vitamin D.

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@suecreader I think the MDs tend to look at drug company information and the drug companies don't make any money on Vit D.

Taking the vitamin D3 worked immediately once I found the right dose. In fact for anyone thinking of trying the D, I suggest starting at 5000 IU or MG capsules, (I can't remember how those capsules are measured) and if it works, you know you have found the missing link. If it doesn't work, you will know this is not the missing link for you. And if the 5000 works, the next night take just 4000 and see if that works. If yes, take 3000 the next night. You can always add more if you reach the point where it isn't working but it worked before. And if you want to try a higher dose, I think it is probably wise to check with and have it monitored by your MD as Vit D is not a water based vitamin and excessive amounts are not excreted.

Just as an aside, I did NOT have low Vit D before I added all of this and I don't have high Vit D now so I don't understand how the body is using it but it does work for me.

I tried iron tablets and also added red meat to my diet. That didn't help me at all.

Good luck to all you RLS sufferers and may 2019 bring a cure without any side effects.

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Thanks for dosage advice – I wouldn't have thought to start at that amount and work down. Makes more sense than trying to work up. I never remember which vitamins and minerals are not healthy if taken in too high amounts, so that information is nice to know. Thanks for saving me the time in doing the research about that also. While i tell myself, and others, to not compare what works for me with others, and vice versa, it is always nice to have validation in the form of another person with a similar experience – in this case with the iron supplements. I've told my doctor this, but she still wants my iron checked every month. At least I'll always know if I'm anemic or not with that safeguard. Thank you again.

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@degarden_girl

@suecreader I think the MDs tend to look at drug company information and the drug companies don't make any money on Vit D.

Taking the vitamin D3 worked immediately once I found the right dose. In fact for anyone thinking of trying the D, I suggest starting at 5000 IU or MG capsules, (I can't remember how those capsules are measured) and if it works, you know you have found the missing link. If it doesn't work, you will know this is not the missing link for you. And if the 5000 works, the next night take just 4000 and see if that works. If yes, take 3000 the next night. You can always add more if you reach the point where it isn't working but it worked before. And if you want to try a higher dose, I think it is probably wise to check with and have it monitored by your MD as Vit D is not a water based vitamin and excessive amounts are not excreted.

Just as an aside, I did NOT have low Vit D before I added all of this and I don't have high Vit D now so I don't understand how the body is using it but it does work for me.

I tried iron tablets and also added red meat to my diet. That didn't help me at all.

Good luck to all you RLS sufferers and may 2019 bring a cure without any side effects.

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I just wanted to say that I have tried vit D, 5000 mg, at night when the torture starts, and it has been working! My concern is about overdoing the dosage, but I like your idea of scaling back. Do you have experience with R-ALA? Some people here are saying it is also helpful. I am wondering if this syndrome always progresses. That is a depressing thought.

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julchilds: I am not sure what R-ALA is? I thought I had tried everything but I had not heard about the Vitamin D before this space to share ideas, so I’m encouraged by that. I’m not sure about RLS ALWAYS getting worse as time goes by-it just has for me.

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@julchilds @suecreader I have not tried R-ALA and from my very brief internet review, it seems to be an antioxidant. However, since there is some indication it helps with peripheral neuropathy, I wouldn't dismiss this out of hand. But, and this is a big BUT, there are some serious possible side effects from taking this supplement. My approach has always been to proceed with the least invasive or harmful approach and always proceed with caution. Since R-ALA is a "supplement", it isn't medically vetted by the FDA. Julchilds, I am so happy that you are experiencing some relief from RLS with VitD3. Tell your MD as possibly your experience will be used to help others.

As to whether RLS always gets worse??? I have found it is totally controlled with VitD3 and if it does get worse, I will try increasing the D3 before trying something else. I have been dealing with this for 8 or 10 years and it is controlled by D3 without getting worse or needing more D3.

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@julchilds

I just wanted to say that I have tried vit D, 5000 mg, at night when the torture starts, and it has been working! My concern is about overdoing the dosage, but I like your idea of scaling back. Do you have experience with R-ALA? Some people here are saying it is also helpful. I am wondering if this syndrome always progresses. That is a depressing thought.

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@julchilds I think the 5000 mg per day is the recognized totally safe amount to take per day. I know there are people who take 20,000 mgs per day without side effects but I don't recommend that without medical supervision. And if I need to up my dosage, I will simply get monitored while increasing it to assure I'm not going over the safe edge. And I tried tablets and found them not as effective as those kind of rubbery capsules.

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@degarden_girl

@julchilds @suecreader I have not tried R-ALA and from my very brief internet review, it seems to be an antioxidant. However, since there is some indication it helps with peripheral neuropathy, I wouldn't dismiss this out of hand. But, and this is a big BUT, there are some serious possible side effects from taking this supplement. My approach has always been to proceed with the least invasive or harmful approach and always proceed with caution. Since R-ALA is a "supplement", it isn't medically vetted by the FDA. Julchilds, I am so happy that you are experiencing some relief from RLS with VitD3. Tell your MD as possibly your experience will be used to help others.

As to whether RLS always gets worse??? I have found it is totally controlled with VitD3 and if it does get worse, I will try increasing the D3 before trying something else. I have been dealing with this for 8 or 10 years and it is controlled by D3 without getting worse or needing more D3.

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Thank you for that info! I am greatly encouraged to hear about how controllable it is with D3, and I will tell my doctor and everyone else.

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@julchilds Another affirmation for Vit D 3 along with magnesium and potassium .

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@degarden_girl

@suecreader Hmmm, interesting as I was told I had "growing pains" when I was young. And Sue, I think your RLS is far worse than mine. My Mom had RLS and her symptoms were far worse than mine or what any of my sisters are experiencing (but we all started on the higher doses of Vit D when the RLS presented its ugly head). I am 74 and the actual RLS thing probably started about 8 to 10 years ago and the PILM more recently. The PILM isn't a problem if I don't take Benedryl or the PM drugs or more than a nibble of Ambien. Interestingly, I also have some "restless finger syndrome" in which one finger will start to move or maybe that is part of the PILM symptoms. The finger movement is just kind of interesting, not a sleep problem but I am sure it is connected.

I hope the Neupro continues to work for you and that the side effects become minimal. I think as more and more people speak up about their experiences with RLS, medical science will find a cure. But for so long, it has been minimized as unimportant. I remember three male friends laughing about restless legs and I want to tell you, I educated them on the seriousness of the condition. They were laughing at the name as it certainly doesn't convey how unpleasant and life altering the condition is to those of us who have it.

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@degarden_girl I have been reading some of these posts despite not having RLS, but you just reminded me of something. I too had problems with my legs at night when I was a child and my mother always said it was "growing pains". Thankfully I do not have that problem now, I just have trouble finding a comfortable position to fall asleep.

It sounds as if a lot of people have hit on Vitamin D as an aid to this. As one of my doctors has expressed, sometimes patients do figure out solutions that are not endorsed by doctors, but do seem to work. I'm glad many of you are getting relief from Vit D. Of course any new supplement should be run by your doctor, just to make sure it won't interfere with anything else.
JK

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@suecreader

I tried Neupro which is a transdermal patch. It does have some side effects like headaches, dizziness, and some nausea, symptoms that became milder after 1-2 weeks. It’s a rather expensive drug, even with insurance, but I’ve slept all night long more nights than not for the first time in 10 years. I was only getting 1 – 2 hours of sleep per night. Again, everyone is different, but it’s worth a try. I was at the point where I would do anything to get some sleep. I wasn’t able to drive since I would drop to sleep involuntarily, and I was unable to stay the night away from home at all Since I would need to walk almost all night long, and sometimes I even would run through the house, as crazy as it sounds, to try to get rid of the symptoms since they intensified through the night

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@suecreader That's great that you have found some relief. I know how miserable it is to not be able to get enough sleep, although my problem is not from RLS.
JK

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@suecreader

Interesting Lynn! This happens to me too when I take Benadryl…..many people don’t believe that it isn’t helpful for me since it makes them drowsy. I think it might go back to the fact that we are all so different, and some of us are sensitive to certain drugs and others are not. This is what makes dealing with RLS so confusing and complex, at least for me.

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@lynnkay1956 and @suecreader LOVE to hear that someone else gets the opposite effect that Benedryl is supposed to impart! It "wires" me!!! Certainly cannot take it for "sleep"! I was taking Requip for the RLS, but as with you, had to start increasing the amount. So my dr switched me to Mirapex – which I thought would be the answer!!! For 10 days I had no leg movement! But then it began again, and am now increasing the Mirapex dosage! All the while I am taking gabapentin, and Tramadol, tho' only in the late afternoon and at bedtime. As with you, no alcohol or caffeine after 2 or 3 pm. Thinking of asking my dr about Neupro? Also thinking – what if … one could alternate Requip and Mirapex? …daily? weekly? monthly? Just a thought! I also have pain from spinal stenosis and/or neuropathy, so when you add the jumping around from RLS or PILM it becomes TERRIBLE!!! You dread evenings and night and would do almost anything (or take anything!) to get a decent few hours sleep! The Mirapex makes me sleepy, so it is wonderful to take at bedtime – however that effect lasts into the next day and I am afraid to drive or do anything that requires my full attention. What to do…

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@barbarn

@lynnkay1956 and @suecreader LOVE to hear that someone else gets the opposite effect that Benedryl is supposed to impart! It "wires" me!!! Certainly cannot take it for "sleep"! I was taking Requip for the RLS, but as with you, had to start increasing the amount. So my dr switched me to Mirapex – which I thought would be the answer!!! For 10 days I had no leg movement! But then it began again, and am now increasing the Mirapex dosage! All the while I am taking gabapentin, and Tramadol, tho' only in the late afternoon and at bedtime. As with you, no alcohol or caffeine after 2 or 3 pm. Thinking of asking my dr about Neupro? Also thinking – what if … one could alternate Requip and Mirapex? …daily? weekly? monthly? Just a thought! I also have pain from spinal stenosis and/or neuropathy, so when you add the jumping around from RLS or PILM it becomes TERRIBLE!!! You dread evenings and night and would do almost anything (or take anything!) to get a decent few hours sleep! The Mirapex makes me sleepy, so it is wonderful to take at bedtime – however that effect lasts into the next day and I am afraid to drive or do anything that requires my full attention. What to do…

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@suecreader I was prescribed gabapentin as part of my pain relief regime but also noted that it is also used to treat restless leg syndrome. Maybe you could ask about this?

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@barbarn

@lynnkay1956 and @suecreader LOVE to hear that someone else gets the opposite effect that Benedryl is supposed to impart! It "wires" me!!! Certainly cannot take it for "sleep"! I was taking Requip for the RLS, but as with you, had to start increasing the amount. So my dr switched me to Mirapex – which I thought would be the answer!!! For 10 days I had no leg movement! But then it began again, and am now increasing the Mirapex dosage! All the while I am taking gabapentin, and Tramadol, tho' only in the late afternoon and at bedtime. As with you, no alcohol or caffeine after 2 or 3 pm. Thinking of asking my dr about Neupro? Also thinking – what if … one could alternate Requip and Mirapex? …daily? weekly? monthly? Just a thought! I also have pain from spinal stenosis and/or neuropathy, so when you add the jumping around from RLS or PILM it becomes TERRIBLE!!! You dread evenings and night and would do almost anything (or take anything!) to get a decent few hours sleep! The Mirapex makes me sleepy, so it is wonderful to take at bedtime – however that effect lasts into the next day and I am afraid to drive or do anything that requires my full attention. What to do…

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@barbarn Hi I'm jumping in hear about Mirapex maybe the Dr can give you a different dosage ,since it helps you I know I'm an advocate of pickle juice but there are times when I need to take Mirapex my dosage is 0.25 I only take it when I need it.

Liked by barbarn

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@lioness

@barbarn Hi I'm jumping in hear about Mirapex maybe the Dr can give you a different dosage ,since it helps you I know I'm an advocate of pickle juice but there are times when I need to take Mirapex my dosage is 0.25 I only take it when I need it.

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@lioness – I've been cutting the 0.25 Mirapex tablets in half – (easy to lose them as they are so small before cutting!) – take 1/2 tab about 5pm – plus a tramadol and 100 mg gabapentin – hoping that will get me thru the evening. Then at bedtime I take another 1/2 Mirapex and gabapentin – hoping to get thru the night! Tell me again about the pickle juice – sweet or dill? bb

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@barbarn

@lioness – I've been cutting the 0.25 Mirapex tablets in half – (easy to lose them as they are so small before cutting!) – take 1/2 tab about 5pm – plus a tramadol and 100 mg gabapentin – hoping that will get me thru the evening. Then at bedtime I take another 1/2 Mirapex and gabapentin – hoping to get thru the night! Tell me again about the pickle juice – sweet or dill? bb

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@barbarn It's dill pickle juice as soon as they start I drink a couple of swallows Keep it around all the time hope you feel better new year,new you

Liked by barbarn

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