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.

Interested in more discussions like this? Go to the Sleep Health Support Group.

@barbarn

@susan2018 – maybe I should try to omit the bedtime gabapentin… Agreed – sleeping a few hours straight makes a huge difference.

Jump to this post

What you’re going through sounds miserable. I did try both Mirapex and Requip and they did help, for a time, until they led to augmentation, making the RLS worse. Best wishes to you and hoping your physician sorts it all out.

REPLY
@barbarn

@lioness and @rensacb – thanks for your response – hope dr can help tomorrow. Times I need to drive husband 80 miles to dr and find I am too sleepy to do it! Either way – too much Mirapex or lack of good night's sleep from RLS – too sleepy to drive!!!

Jump to this post

@barbarn just take onene when you have to drive

REPLY
@rensacb

I do have the problem with drowsiness into the afternoon. I took requip for the first 10 years or so and then it just quit working. The mirapex does the job. My RLS is so bad that side effect is ok with me.

Jump to this post

@rensacb: I had the very same thing happen to me with Requip……isn’t it strange that after all that time it would stop being effective? Disappointing too as it worked well all that time. I stopped because I was needing to increase dosage every two weeks & would get sick & vomit, have a blasting headache, & be dizzy to the point passing out with each increase. By the time the side effects started to abate, it was time to increase the dosage again – and round and round it went. That’s when Mayo switched me to gabapentin which has proven to be somewhat effective but not entirely. Right now I am taking Neupro which is a transdermal patch, and so far it’s working pretty well. Problem is it’s quite expensive. It too is a Parkinson’s/RLS drug. Like @babarn above, I keep wondering if I can switch back to Requip some day or if it will forever be something that doesn’t work.

REPLY
@barbarn

@lioness and @rensacb – thanks for your response – hope dr can help tomorrow. Times I need to drive husband 80 miles to dr and find I am too sleepy to do it! Either way – too much Mirapex or lack of good night's sleep from RLS – too sleepy to drive!!!

Jump to this post

@barbarn: isn’t it miserable to be so tired & try to drive? Becomes easy to just drop to sleep, and that’s kind of scary. Good luck with future trips, and I hope you can sleep at least a few hours straight so you can get enough rest to drive.

REPLY
@lioness

@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

Jump to this post

Hi; I've also used a spoonful of mustard that will immediately relief any cramps in your legs or hands..I've tried it and it worked for me.

REPLY

Im looking for some type healing from drop foot along with the neuropathy. There was an ad in the paper to cure neuropathy but they wouldn't take Aetna insurance.. so I didn't pursue it.

REPLY
@bburleson1

Hi; I've also used a spoonful of mustard that will immediately relief any cramps in your legs or hands..I've tried it and it worked for me.

Jump to this post

@bburleson1 Yes I agree a friend use to carry mustard packets when she would go out It's good for superficial burns also I burned my hand on hot coffee The waitress put mustard on it took the sting out

REPLY
@bburleson1

Im looking for some type healing from drop foot along with the neuropathy. There was an ad in the paper to cure neuropathy but they wouldn't take Aetna insurance.. so I didn't pursue it.

Jump to this post

Hi, @bburleson1 – for the foot drop along with the neuropathy, you might post your question here where there are lots of members dealing with neuropathy https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

REPLY
@cjc56

I am getting great relief with Gabapentin. I have been on it for 3 to 4 weeks now. I feel like i have died and gone to heaven. I didn’t think i would ever know what it was like to sleep through the night and go from waking up anywhere from 6 to a dozen or more times a night to waking up once or even none at all. I had several nights each week that i wasn’t able to get to sleep until 4 or 5 in the morning. Getting up 4 to 6 times to stretch out my legs to try to get some releif, I tried elevating them, the heating pad, walking, a lot of days, nothing worked. I take 2- 300 mil capsules about 2 1/2 hrs before i go to bed. I am almost 60, and for the first time in my life, i feel like when i wake up in the morning, i am rested. I have never felt that before. I have suffered from restless legs, as far back as High School, never knowing what it was.

Jump to this post

I think you are right on to suspect harmones. Example, Study the"Brain Barrier". Magnesium jel helps at night when rubbed into the lower leg. But, when magnesium accumulates in the brain barrier and does not dissipate fast enough, it can aggeravate RLS. My RLS started after I had weakness and was hospitalized from Hypercalciumia (From the hypothalmas.) I had taken 2 years of flomac for osteopenia and it affected the gland. Like wise I have a low Vit D and am on a 6 month boost. I hear a ferrin test is needed for over 76, since this has been associated with RLS. I had a negative brain scan with no tumor. But I have real leg jerks and intention hand motion., more thalmus.

REPLY

Regarding RLS: I have it my sisters have it and my mother had it and I believe there is an inherited tendency to develop this condition. There is also a similar condition called Periodic Involuntary Limb Movement or PILM when the limb moves in a fast jerking motion. My experience with RLS was that it was a compulsion to move the legs in a sweeping motion. PILM was totally involuntary and nothing slow or sweeping in the movement.

I found taking Vit D3 starting at 4000 IUs stopped the RLS and I am now down to 1000 IUs. The PILM was a reaction to Benadryl and Ambien. I can now take a nibble of Ambien when needed but I cannot take Benadryl at all.

I have also had great misery from muscle spasms in the legs through the night, especially excruciating spasms along the shin bone. I started drinking more water and taking magnesium at bedtime and after about a week, the muscle spasms totally abated.

I hope these are possible resolutions to your issues. We are all different but who knows what will work until we try it.

REPLY
Please sign in or register to post a reply.