Relief from RLS?

[MumofSam]

Just found this on an American forum, and since s/he wants to spread the word, I'm sure s/he won't mind me re-posting it here. Has anyone tried this before, or does anyone fancy giving it a go to see if it works?

"try my fetal stretch. I have been suffering with severe restless legs syndrome for 35 years. A month ago, I accidently found a method to eliminate the symptoms for approximatel 24 hours. I call it the fetal stretch and it has changed my life. When i feel the symptoms resuming, i simply lay on my side, get into a very tight fetal position, really stretching the back and legs, hold for 2 minutes, release, and symptoms disappear for about 24 hours.

I blelieve it is the stretching of the back that is doing something.

I am now on a mission to tell as many people as possible. Ionly wish i had discoveed this many years ago. So many years of suffering!"

[nightdancer]

Lots of people do yoga type exercises along with the stretching. it has helped me for DECADES. of course, along with my meds.

[Hidden]

I've tried similar to that, although not holding for that long will limited effect, will try it for longer.

[Gerry2020]

I just came back from a Pain Seminar. They are now calling RLS "Small Fiber Neuropathy".......Small Muscle Fibers in the Legs are the Fibers that are affected.

Your MD can test to see which Fibers are affected,Large or Small....

[MumofSam in reply to Gerry2020]

Sorry Gerry, but I'd have to completely disagree. My RLS bears no resemblance to small fibre neuropathy whatsoever. This makes me wonder if two conditions are getting confused, or if there are two distinct forms of RLS, one with pain and one with the itching, "creepy crawly" sensation, which is the one I have. Or indeed if the pain version isn't RLS at all, but something else. As Booklover says below, RLS is characterised by the overwhelming need to move your legs due to the sensations experienced and is pretty much the defining factor of RLS. Without this, it isn't RLS.

[Windwalker in reply to MumofSam]

MumofSam,

I totallo agree with you. The sensation is so strong that if I resisted i would simply go Insane. I have 3 brothers who also have the same symptoms and my mother had 9 sisters who all had the very same thing. It is a genetic condition. if you check your DNA you'll find you had ancestors who were Eastern European Jews. You may not know it but the genetic trait comes from a mutation about 2000 years ago. One person with the trait has been present in 5 isolated populations and over time (300 to 400 years) they all became distantly related and the trait was inherited by every single person in the isolated group.

In the U.S. it is Cajuns and Appalachian plateau dwellers whose families have been in the swamps of Louisiana and or on the plateau since the white people first came here to the U.S

French Canadians, Icelandic people are not very easy to associate with anyone except themselves and intermarried several hundred years and most all have RLS.

Jews whose families came from Eastern Europe almost to a person has the trait, unless they were adopted from a non Jewish source, as some have done to keep the genetic diseases out of their children.

I have two of the 5 inherited groups in my background, Appalachian and Jewish ancestry gives me a double whammy and i suffer greatly from the classic symptoms.

Hope this helps with the understanding of who does and who doesn't have RLS.

Windwalker

[Hidden in reply to Windwalker]

There are definitely no Eastern European Jews as far back as I can check in my ancestry. It's quite likely that the genetic problem causing RLS has arisen more than once in different parts of the world.

[Windwalker in reply to Hidden]

Ptilium,

The diaspora was the main cause of the spread. Genealogists trace families back just so far but the genetic

analysis will show a genetic connection for the traditional RLS sufferer.

Some things that are just as bad, are the secondary symptoms to injury and other diseases. The genetic test is cheap to run and is very revealing to most people who have thought they were of one ancestry and the test shows another. Adoption, infidelity, out of wedlock birth, and lately artificial insemination, can alter what you traditionally thought.

You are you and it really does not matter what your ancestors were. Just something to amuse yourself, because you cannot ever change it.

[MumofSam in reply to Windwalker]

Gosh, that's fascinating Windwalker. As far as I'm aware I have no Jewish ancestry, but I guess if you're talking as far back in time as you mention then it's possible. I definitely have the inherited, primary, version of RLS. However, I don't know of anyone in my family who also suffers. Having said that, all my grandparents are now dead so I have no way of checking, but my parents and my brother and sister don't suffer. I thought at one time my son did, but I don't think he really does but I'll keep a watch on him as he grows up - he's only 12 at the moment.

[Windwalker in reply to MumofSam]

MumofSam,

The number of jews who lived two thousand years ago were sufficient to have multiplied into Hundreds of millions if they had all stuck with their religion and they had been a welcomed group in each of the countries they spread into when the diaspora started two thousand years ago.

Nobody in my family has practiced the traditional Jewish Religion for 200 years and the knowledge that we were mixed with Jewish people was lost until a genealogist traced us back to where we were in 1656 when we left England. One of my great-great grandmothers was a German Jew.

My son did the test for your ancestry called ''23 and me'',

and the test showed mostly Northern European with traces of other genes, one being Ashkenazi Jew. He already knew it,

but it confirmed where the RLS came from.

My Neurologist is a specialist on this disease and he first told me where to look for the inheritance and I fitted into two of the characteristics, Jewish and Appalachian.

Windwalker

[MumofSam in reply to Windwalker]

You've got me fascinated now! However, I don't think it's so easy or cheap to get your DNA analysed here in the UK? Mind you, as you said, you are who you are and nothing can change that, so knowing your ancestry, whilst intriguing, won't alter the fact you have RSL.

[Hidden]

Hi Gerry, thanks for your posting which I read with much interest.

I have small fibre neuropathy (SFN) it's comes under the umbrella condition of peripheral neuropathy (PN)

I've also had 24/7 RLS, not the genetic version but brought on as a side effect of taking Digoxin (a commonly prescribed heart drug)

There are similarities between them, but the main difference is with RLS there is an involuntary and overwhelming urge to move your legs but NOT with SFN.

I believe it is that overwhelming urge to move the legs (or arms etc) that brings about a diagnosis of the nightmare that is RLS.

It will be interesting to see where this "new" name for RLS will lead us.

Treatments for SFN are mostly opiates plus Gabapentin (or similar), no dopamine agonists to my knowledge.

I wonder if the opiate path will become more commonly prescribed for RLS now rather than the DA's ??

Again, thanks for your post, I'm going to do some research on this now

[Gerry2020]

Yes-The current Treatment For SFN is Tramadol and Lyrica...

[Bajatom]

Interesting. I go to bed around 10:30 pm and wake up within 1-3 hours with those tingling creepy crawly RLS symptoms. So as not to wake my wife, I get up, stretch calves, and try to sleep on the sofa. I am tall and sofa is short so I must fold into a fetal position to fit on the sofa. Invariably when I get in this position the symptoms subside for several hours. Tonight I will consciously do some fetal position stretches more intensely.

[MumofSam in reply to Bajatom]

Do you get the sensations in your calves then? Mine is in my thighs. It's interesting that you find the foetal position works so well for you. I shall definitely try it myself.

[Hidden]

I've contended for years that lower back issues are a definite cause of RLS at least in some people. I can generally do lower back exercises in the middle of the night and get back to sleep. May try that fetal stretch- that would be so much better than hauling out of bed to get in the floor! And my inversion table is absolutely vital equipment for me; I use it later in the evening to stretch out my lower back.

[Pippins2]

Ok my RLS is raging so I am going to try the fetal strerch here goes!

[MumofSam]

Did work Pippins2?

[Shon48]

I'm going to give this foetal stretch a shot tonight . Mine is always at night in bed , very annoying . I have peripheral neuropathy in my feet due to damage from chemotherapy . Hope this works

[MumofSam]

Good luck Shon48. Let me know how you got on.