Anyone here have or heard of a connec... - Restless Legs Syn...

Restless Legs Syndrome

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Anyone here have or heard of a connection between RLS & peripheral neuropathy?

Kazamie
Kazamie

I have had severe RLS since about the ago of 9, and have been on medication(s) for years. The past few months, I have also developed peripheral neuropathy when I go to bed. I have read that there could be a correlation between the 2, andcwas wondering if anyone else has this issue.

11 Replies
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Hi Kazamie

I have also read that there is some association between neuropathy and RLS. I've not read much, but it seems someone with neuropathy is more likely to suffer RLS, NOT the other way round.

e.g.

jnnp.bmj.com/content/72/4/5...

As this article discusses, it could be that someone with RLS could be suffering from "subclinical" neuropathy, i.e. they aren't aware of symptoms or dismiss them so the neuropathy isn't diagnosed.

However, further, as this article also states, RLS associated with neuropathy tends to occur at a later age. This suggests that as your RLS started at the age of 9 then it is not due to your neuropathy.

Nor, would it seem that your neuropathy follows from your RLS. The two may be entirely separate beasts!

There are many types/causes of neuropathy and it would appear that they're not all associated with RLS.

The actual word "neuropathy" seems to be similar in its connotations to the word "jaundice". Jaundice is not a health condition, it's a collection of signs and symptoms that always appear together and which can be caused by quite a few different health conditions.

I ramble, but an interesting point here is that a collection of symptoms that always appear together, (but aren't an actual health condition in themselves), are called a "syndrome". Restless legs is called a syndrome, which therefore suggests that RLS is not a condition in itself, but indicates some underlying condition.

In which case neuropathy could be one of those underlying conditions.

Personally, I believe I suffer from "primary" or "idiopathic" RLS, with no underlying condition in which case it might be better to say I have Willis Eckbom "Disease". rather than RLS.

I do have what I would call neuropathy, but it is specifically due to spinal degeneration, particularly in my lumbar spine and I have all sorts of pains, numbness, buzzings, burnings and tremors in my legs. My RLS (which I should really call WED) precedes this, so I think for me, there is no connection.

Sorry, a long winded answer, in summary I too have developed neuropathy, like you, but my RLS (WED) significantly precedes it so I think them unconnected. I suspect yours is too.

There are though, cases of "secondary" RLS which may be a consequence of neuropathy.

Kazamie
Kazamie in reply to Manerva

I also have disc degeneration in my lumbar region. My 1st surgery was about 9 years ago. Sort of odd how RLS, back degeneration, neuropathy have happened to the both of us....

Abookwriter2
Abookwriter2 in reply to Manerva

So if RLS is a symptom (I believe so), then why does the pharmaceutical industry try and make it a ‘condition?’ I recently started gabapentin for a worsening of RLS suddenly and now have been treating it myself with ‘The Absolute Cure’ rlcure.com. Having success most nights and skipping the 100 mg of gabapentin most nights.

Manerva
Manerva in reply to Abookwriter2

HI

Just to clarify, RLS i.e. Restless Legs "Syndrome" is not a symptom (singular). A "Syndrome" is a set of symptoms (plural) which always occur together i.e. the Creepy feeling (1) the urge to move (2) the coming on at rest (3) etc are ALL part of the set of symptoms called RLS.

Syndromes can occur as a result of an underlying condition e.g. like jaundice, that can be caused by liver sclerosis, hepatitis, gall stones etc etc.

However in "idiopathic" RLS no underlying condition which leads to the syndrome has been discovered. Idiopathic means "no known cause".

So primary RLS could be said to be symptoms of an actual condition which in this case is known as Willis Eckbom Disease WED.

I do think drug companies are exploitive and their products overexpensive, not unlike other industries, however I don't think they are inventing conditions. Drugs aren't always aimed at "curing" a condition. Sometimes drugs are aimed simply at treating symptoms. E.g. painkillers. So drug companies don't have to invent conditions. It isn't even necessary.

And if RLS is an "invented condition", I don't think it's drug companies that invented it.

You might also consider that the drugs used for RLS symptoms were originally produced for other conditions e.g. dopamine agonists for Parkinson's disease, Gabapentin for eplilepsy.

Whether you take drugs or not for RLS or not really depends on 3 things -

1) Is the RLS due to an underlying condition

2) Whether a RLS sufferer chooses the convenience and/or effectiveness of taking a drug rather than possibly less effective, more time consuming, more limiting. complicated, possibly more expensive (in the UK) involving lifestyle changes etc. is a personal choice.

3) How severe the RLS is and it's my belief that in very severe RLS anything less than a potent drug will not be effective.

I don't really think that anyone wants to take drugs, the benefits must outweigh the costs.

I have idiopathic RLS (WED) and I don't think I would have managed at times without the drugs I've taken for it. I have so far, not succumbed to taking opiates, but I don't think badly of anyone who does. I also don’t think badly of anyone who wants to try any remedy they think might be effective for their symptoms, no matter how whacky it might sound.

I do think badly of people or organisations that sell "cures" for any life changing syndrome that have little evidence of effectiveness and promote their "cure" by exploiting people's vulnerability. Far worse than any drug company that do have to demonstrate effectiveness to the licensing authorities.

The main problem with the web site you refer to is as well as contradicting most of what's currently been discovered about RLS for which I have read many scientific studies is that although it claims there is evidence for RLS being a "warning signal" (that sound dangerous doesn't it?) of inflammation it gives absolutely no reference to any of this evidence, so does this "evidence" exist? Where is this "evidence". who published it, who carried out the necessary research.

The lesser problems with it are the claim that they're not trying to sell anything. I think you might find that people are genuinely NOT trying to sell you anything, don't have to say that.

Then the dubious testimonies from some (dubious) MDs, e.g. Dr Dr. William S. Eidelman apparently an expert in nicotine addiction Lost his license to practice

I think it's clear what my choice is. If you've chosen to follow this "RLcure" and it's working for you, that's great. I have no criticism of that.

A lot of people on here with RLS also have peripheral neuropathy. i am one of them. I have the neuropathy because of my MS.

Yes, I have both familial RLS ( my Mum & sister too ) which Ist noticed but very rarely & mildly as a child & which got worse when I was around 50. I then developed peripheral neuropathy some years later ( numbness & weakness ) proved on Neve conduction studies, a type called C I D P & my RLS became very much worse & very severe. It is possible to be a member of both groups. You do not have to be exclusively one or the other but you can also have RLS solely as a result of peripheral neuropathy. It is a bugger!

Most probably, because something is attacking the nerves, and which nerves ar most ulnerable depend on your genes. What's attacking them could be a virus, heavy metal poisoning or most likely something in your blood which gets there because it's in your diet. The most likely culprit is sugar, but milk and dairy products could also be contributing as well as gluten and less likely nightshades (aubergines, tomatoes, potatoes etc). Also can be artificial food preservative esp sorbates (E202 affects me) Many have found relief by cutting out sugar (+ cakes, biscuits, fruit juices etc) or following a paleo or FODMAP diet. I follow loosely to the Wahls Protocol which was developed by MS sufferer Terry Wahls (look on youtube or Ted for "minding your mitochondria". It will probably help if you make sure that you are eating enough of some often overlooked foods to help build up the myelin on the nerves. The ones often overlooked are leafy green veg, omega 3 oil and iodine (from seaweed or kelp supplements).

Kazamie
Kazamie in reply to Eryl

I will definately check this out! Thanks!

For quite a while I thought the leg pain I had was associated with RLS but following a nerve conduction test I found that I had Small Fibre Neuropathy which is a type of peripheral neuropathy. I am 71 and up to 67 or so I was fit as a fiddle. Now unfortunately some of the strings are out of tune!

Hi Kazamie. So many people here have to battle both monsters. I’m a 30 year diabetic & I have agonizing neuropathy. It’s magnified because I also have CRPS & spinal compression. I am on month 5 of withdrawal from the evil drug Mirapex. around six weeks into it my neuropathy started spreading even more. when I get on the Internet I have to use the microphone feature, my fingers feel like they have been shattered by a sledge hammer. I wish there was a magic pill so none of us had to endure a magic pill to stop everyone’s suffering.

When I was first diagnosed with painful RLS about 8 years ago the Neurologist told me my peripheral neuropathy (caused by chemotherapy) exacerbated the RLS symptoms, but was not the cause. The cause is unknown but in my case inherited.

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