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.

Amanda Burnett | @amandaa | Jul 17, 2022

In reply to @rjjb "How do you cope with RLS? I've had it for more than 30 years, and there..." + (show)

Hi @rjjb, I moved your post to the RLS discussion that you posted to before. I did this so you can connect with all the people suffering with the same problem.
What medicines have you tried already and what was the duration you were on them?

rjjb | @rjjb | Jul 17, 2022

I've been taking Pramipexole for about two years.
It does help ease the RLS, but is no cure.

cmd | @cmd | Jul 18, 2022

In reply to @nataliem "Have you tried putting Vicks on your legs? Sounds crazy, but it works. I read this..." + (show)

Can also try magnesium.

brandysparks | @brandysparks | Jul 19, 2022

My cherished PCP advised me that my arm aches were Restless Leg Syndrome - but in my arms! It really feels like a highly unpleasant, unrelenting "pulling" sensation - like your limbs have a rubber band inside whose tension can't be released or relieved.

He mentioned some medications, but cautioned of some rare but serious side effects that kept me away from even considering them. However, he did advise that quinine can be most helpful, but that it cannot be prescribed, by law. BUT, that trying tonic water - which contains quinine - might be worth trying. I did try it for a bit, and it seemed to help, but then the effect - for me - wained.

But every once in a while I have the tonic water - actually quite refreshing, and can come in a no calorie version. I also wonder whether not drinking enough water could contribute to this, but haven't asked specifically. Of course, not drinking enough water leads to numerous other issues, so I need to consume more as a rule anyway - but seems I can't get enough of my iced tea to start with, so that's my default beverage!

Hope this might help some folks.

mcd123 | @mcd123 | Oct 24, 2022

Is this the area to discuss RLS?

Colleen Young, Connect Director | @colleenyoung | Oct 24, 2022

In reply to @mcd123 "Is this the area to discuss RLS?" + (show)

@mcd123, you will find discussions about restless leg syndrome in the Brain & Nervous System group as well as in the Sleep Health group. To get you connected with others, I moved your message to this existing discussion:
- Restless Leg Syndrome https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/

Is this a new development for you MCD? Do your legs' restlessness disturb your sleep?

dersh | @dersh | Nov 21, 2022

In reply to @pcka "I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and..." + (show)

In terms of your pain, have your looked into Kratom? I am actually getting off of Hydromophone as it has become totally ineffective for my pain anymore, at its height the morphine was covering maybe 20-25% of the pain. Kratom covers for me 70% and is far safer than opioids. Its fairly inexpensive, doesn't have a high, isn't an opioid, is a close relative to the coffee plant and works when literally nothing works for my pain and I have tried Gabapentin, Pregabalin, Lyrica, Tylonal 3s, Codeine Contin, Amitriptyline, Cannabis.

Damn I just noticed im replying to a comment from 2017, hopefully you havent been in utter pain this entire time!

dersh | @dersh | Nov 21, 2022

Im just going to start off saying sorry but I havent read all the 26 pages of replies.

In terms of your thyroid, id say thats a good possibility it could be causing your restless legs @jimbourg8. Years ago I had low and enlarged thyroid, what solved that for me was Nascent Iodine. But there is also the possibility that one of your meds could be causing the restless legs so I would keep that in mind.

Back when I was taking Seroquel it used to give me the rankest restless legs about 15 minutes after I took it, was a real nightmare to take along with many other psychiatric meds. I learned about a drug induced inner restlessness state called Akathisia where I would feel like I need to be sitting as soon as I was moving, and as soon as I was moving I felt like I needed to sit down in perpetuity. It was terrible and very similar to restless legs syndrome but your entire body and mind.

My father is a retired physician so if there was any better drug to treat motor restlessness id probably know about it, anyway the drug they would always give people at the psych ward for restless legs was Benztropine Mesyl (cogentin) so id suggest asking your psychiatrist about that one sometime as its typically a medication they deal with.

vegastrong | @vegastrong | Dec 22, 2022

In reply to @vickiekay "Try drinking Tonic Water....my Mayo doctor suggested a "gin and tonicwithout the gin"! The quinine in..." + (show)

I have RLS and it’s mostly every night. I’ve had 6 back surgeries and permanent nerve damage. I was wondering if this was the reason. But thinking about it, this condition started being more permanent as I started aging. I’m now 64. My Dr. Once told me about tonic water, but I hate the taste and I don’t drink. So I found Quinine on Amazon. I put a few drops into my water cup that I drink during the night and it seems to help most of the time. I must have tried just about everything else and this seems to be about the best yet. If you do it on a regular basis, it seems to have help for me about 80 % of the time. I also take a potassium tablet every so often when I need an extra push. I drink lots of water during the course of a day, and the combo of both help.

mooooother | @mooooother | Dec 23, 2022

I have had RLS for over 25 years. The only thing that helps me is sleep which is hard for me to come by since I have fibromyalgia. I do take very low dose Seroquel "off label" for sleep. If I sleep I can keep the RLS at bay.
I also tried Neurotin for pain and sleep and it did not work for me.