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Darlia
@darlia

Posts: 132
Joined: Jul 21, 2017

Is this RLS (restless leg syndrome)

Posted by @darlia, Oct 14, 2017

I have been a member of Mayo Connect in other groups too. I am trying to find out if the symptoms I have in my muscles is connected to anything I already have been diagnosed with.
Also, would it be a Rheumatologist or Orthopedic Dr. That I need for this? I asked the Rheumo and they said it’s nothing that they handle. But I would think they would because it feels like muscles.
At night while relaxing, my legs get restless, want to tense up, like on rubber bands. Then my right arm, just my forearm starts to feel the same. Then it makes me put my hand into a “claw” as it intensifies.
Any clues anyone?
@darlia

REPLY

Hi Darlia (@darlia), Kanaaz (@kanaazpereira) and other Connect members have posted some helpful information in another discussion – RLS and antidepressents and maybe able to answer your question. Here is the link to the discussion: https://connect.mayoclinic.org/discussion/rls-and-antidepressants/bookmark/?ajax_hook=action&_wpnonce=679f69321f.

I’m tagging some of the Connect members who have discussed the restless leg syndrome (RLS) in hopes that they may be able to provide more information: @emilyanne @gailfaith @ridgerunner @peggyj4411 @rabbit10 @pattitoo @wljs @lknightb @ptfitzy are you able to what type of doctor that she needs to see?

Darlia, if it’s in the realm of possibility for you, the Mayo Clinic is a really good place to seek help with their teams of specialists at each location and their team approach to helping patients. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Two other web pages with information that is informative for RLS but you may have already seen:

Restless Leg Sydrome Foundation: https://www.rls.org/understanding-rls/symptoms-diagnosis
Mayo Clinic page on Restless Leg Syndrom: https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/basics/symptoms/con-20031101

Hoping you can get your answers soon…

John

@darlia, gaitfaith here. For years I have had RLS, but when it started our local newspaper had a column by a Dr. Gott, MD who suggested putting a bar of soap under your bottom sheet. Yes, I know it sounds nuts, and it doesn’t work for everyone. But it did for me, I remember they said that Dial soap doesn’t seem to work, but no one mentioned other brands. I always thought is was simply mind over matter or Psychosomatic, but one day I work up as my legs were all over the place. I wonderred where the bar of soap was as I didn’t feel it under the sheet. It had slid off the mattress and was now below the mattress caught by the fitted sheet. Haven’t had a problem since I returned it to its place under the bottom sheet, but now if I see the soap getting near the edge, I return it to at least a foot from the edge.! It doesn’t HAVE to be under your legs. Just under the bottom sheet. I think if it were under m legs, it would annoy me! I have no idea what brand of soap I have as it has been the same bar for years! Maybe 30+ years as I forget when I started, but we moved from the house where I started it back in 1986. Same bar of soap! An interesting fact:…… I have no problems with RLS when staying at a hotel, hospital, etc, when there is no soap under the sheet !!!!!! But there I am only there for a few nights at a time.

My, what an easy fix to try, I do remember hearing about this and seems most wonder
what brand of soap, plain Ivory, a deodorant or non deodorant — I am going to give
this a go. Did you unwrap your bar of soap?
Thanks for this reminder, I was not having RLS when I first heard about the soap remedy.
Thank you for sharing!
Pat

@pattitoo

My, what an easy fix to try, I do remember hearing about this and seems most wonder
what brand of soap, plain Ivory, a deodorant or non deodorant — I am going to give
this a go. Did you unwrap your bar of soap?
Thanks for this reminder, I was not having RLS when I first heard about the soap remedy.
Thank you for sharing!
Pat

Jump to this post

@pattitoo , gailfaith here Hi. As best as I can remember, most brands of soap will work, as the first one I tried worked) . But others say Dial will not. I have no idea what brand I have had all these years. But the sopa is only about a half bar size now due to its rubbing against the sheets. Seeing I am 81 now, that bar will probably last me the rest of my life. I would start with Ivory, and go from there. The bar is wrapped, therefore with time it does get smaller but that takes years. If you find a brand that works for you, you may want to tell which works for you here on Connect! Hopefully you will find one that works for you. It seems it will not work for many. Good luck.

@pattitoo, gail faith here again with a correction…….the soap is UNwrapped. Maybe you figured that out, because if it was still wrapped, it wouldn’t get smaller! Sorry.

@gailfaith

@darlia, gaitfaith here. For years I have had RLS, but when it started our local newspaper had a column by a Dr. Gott, MD who suggested putting a bar of soap under your bottom sheet. Yes, I know it sounds nuts, and it doesn’t work for everyone. But it did for me, I remember they said that Dial soap doesn’t seem to work, but no one mentioned other brands. I always thought is was simply mind over matter or Psychosomatic, but one day I work up as my legs were all over the place. I wonderred where the bar of soap was as I didn’t feel it under the sheet. It had slid off the mattress and was now below the mattress caught by the fitted sheet. Haven’t had a problem since I returned it to its place under the bottom sheet, but now if I see the soap getting near the edge, I return it to at least a foot from the edge.! It doesn’t HAVE to be under your legs. Just under the bottom sheet. I think if it were under m legs, it would annoy me! I have no idea what brand of soap I have as it has been the same bar for years! Maybe 30+ years as I forget when I started, but we moved from the house where I started it back in 1986. Same bar of soap! An interesting fact:…… I have no problems with RLS when staying at a hotel, hospital, etc, when there is no soap under the sheet !!!!!! But there I am only there for a few nights at a time.

Jump to this post

I’ve heard the same about putting a bar of soap under the sheets at a support group round table at one of the MN Neuropathy Association meetings. The person that said it worked for them said they used Ivory bar soap but thought any white bar soap would work. Just wished it worked to help with numbness ☺

@gailfaith

@pattitoo, gail faith here again with a correction…….the soap is UNwrapped. Maybe you figured that out, because if it was still wrapped, it wouldn’t get smaller! Sorry.

Jump to this post

Thank you for the update on the wrapper. Glad it is still working for you.
( I am wondering why I can not say signed in? )

@gailfaith

@pattitoo, gail faith here again with a correction…….the soap is UNwrapped. Maybe you figured that out, because if it was still wrapped, it wouldn’t get smaller! Sorry.

Jump to this post

Hello @pattitoo, which web browser program are you using to view Connect? Internet Explorer, Google Chrome, FireFox, or do you have a Mac? Generally it’s not a good idea to stay signed on to a website but I can understand why people do it. You can have the web browser program remember your password so that you just have to click the login to Connect and it will populate the username and password field.

John

@johnbishop

Hi Darlia (@darlia), Kanaaz (@kanaazpereira) and other Connect members have posted some helpful information in another discussion – RLS and antidepressents and maybe able to answer your question. Here is the link to the discussion: https://connect.mayoclinic.org/discussion/rls-and-antidepressants/bookmark/?ajax_hook=action&_wpnonce=679f69321f.

I’m tagging some of the Connect members who have discussed the restless leg syndrome (RLS) in hopes that they may be able to provide more information: @emilyanne @gailfaith @ridgerunner @peggyj4411 @rabbit10 @pattitoo @wljs @lknightb @ptfitzy are you able to what type of doctor that she needs to see?

Darlia, if it’s in the realm of possibility for you, the Mayo Clinic is a really good place to seek help with their teams of specialists at each location and their team approach to helping patients. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Two other web pages with information that is informative for RLS but you may have already seen:

Restless Leg Sydrome Foundation: https://www.rls.org/understanding-rls/symptoms-diagnosis
Mayo Clinic page on Restless Leg Syndrom: https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/basics/symptoms/con-20031101

Hoping you can get your answers soon…

John

Jump to this post

I also suffer from RLS. I have found a natural essential oil cream that works great and I also take ropinerole. It is frustrating that it only happens at night.

I am interested to know f anyone has tried the non -THC marijuana that is being sold as a natural non medical product for all of the horrible pain etc that is associated with so many of the autoimmune disorders.

If any of this is not allowed I understand

Have you had your iron level checked? I have had similar symptoms in my left leg and increase Iron has helped

Anything new with restless leg syndrome

@tweedy66

Anything new with restless leg syndrome

Jump to this post

Hi, @tweedy66 – I've merged your post on restless leg syndrome here where others like @darlia @mswanda @harliegirl @gailfaith @johnbishop and others are discussing this syndrome.

Have you been diagnosed with restless leg syndrome, @tweedy66? If so, what treatment are you receiving currently?

Hi…..yes, I was put on requip back when it was first available around 2005. This past summer though I experienced augmentation. Presently on ropinerole 6mg, lyrica 150mg and zolpidem 5 mg. Working ok but looking forward to an appt at Mass General with a Dr Winklemen who is one of the few specialists, at least one of the closest to Vermont. Made the appt this past August and first available appt I could get is in March!! Thanks for your post and look forward to keeping in touch!! Sue

Hello @tweedy66, I would like to add my welcome to Connect along with @lisalucier and other members. I'm glad you have an appointment lined up with a specialist. I know it can take months from my experience trying to see a neurologist for diagnosing my small fiber peripheral neuropathy. I'm hoping you will come back and give us an update after your appointment in March.

Have you ever had a sleep study done? The reason I ask is that a lot of people have sleep apnea and don't know they have it. It can detect a lot of sleep related disorders including RLS.

Mayo Clinic – Polysomnography (sleep study)
https://www.mayoclinic.org/tests-procedures/polysomnography/about/pac-20394877

John

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