Am I the only one who didn’t know RLS is seen as an autoimmune disorder?
If you click on the list of all of the autoimmune diseases, RLS is one of them.
Any thoughts?
RLS on the Autoimmune Registry - Restless Legs Syn...
RLS on the Autoimmune Registry
41 Replies
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This will be interesting. Usually auto immune diseases are where the body is attacking itself in some way and I have never considered RLS like that. I always thought it was faulty dopamine receptors in the brain. However, I don't think the research is advanced enough yet to state what the definitive cause or causes are, and so I think it's a little early to classify it as auto immune.
I am hopeful that future research will show the cause. But that needs it to be taken seriously and money to be spent!
in reply to Joolsg
I guess it's a possibility. I've read too that RLS is due to a lack of receptor sites rather than a lack of dopamine. What's causing this loss? It could be similar to some kinds of diabetes which may be caused by a similar fault with insulin receptor sites due to Auto-immunity.
However, even if it were found to be so, in itself, it doesn't immediately offer any new treatment for RLS
alps779 in reply to
RLS used to keep me up most of the night by torture. This treatment has all but eliminated my symptoms. My doctor prescribed Gabapentin at bedtime. I started taking 600mg Gaba before lunch and again at dinner as well as at bedtime. Problem now controlled. It could work for me because my RLS may be exacerbated by diabetes
Nope you are not alone in that - first I heard of it.
I wonder if it is because of the study into Coeliac disease?
ncbi.nlm.nih.gov/pubmed/204...
in reply to
From what I’m learning, if a person has one autoimmune disease, it predisposes you to others as well. It sounds like if we don’t get the inflammation under control, the body will attack another area-which will give us another autoimmune disease.
Unfortunately, it seems other autoimmune diseases are understood (like coeliac disease) but RLS must be complex to understand.
Anyway, I’m getting my hands on as much info on autoimmune diseases as I can.
alps779 in reply to
My second auto immune nearly killed me. Auto Immune Hepatitis!! I was close to death before my PP would allow me to see a live specialist
Its been around for a few years, saying that RLS is a autoimmune disease, but no hard evidence to show it was,.
There is an association in RLS with Lou Gehrig's disease, which MAY be auto-immune.
May I ask what source you got this info from? I am just curious because my mother-in-law passed away in 1984 after battling Lou Gehrig’s disease (ALS) for 7 years. Would be interesting topic for me just personally. Thank you so much.
Not that one, this one!
in reply to debk8484
I’m finding lists of autoimmune diseases in books from the library about anti inflammatory diets-
in reply to Parminter
My dad died from ALS, he also had 2 other autoimmune diseases along with RLS.
debk8484 in reply to
So sorry to hear your dad had ALS. It is one of the worse ones out there, especially for the caregiver watching someone you love get worse & worse no matter how much you do. Such a slow motion helpless feeling. You are such a trooper PreciousSleep.
It is here, too, and mentioned in many other articles.
However, nobody is noting the difference between familial RLS and late-onset RLS.
This is my first time writing on this Forum. I have RLS & 2 neurologists stated it is a “neurological” condition (diagnosed in 2014). Yes, it does have autoimmune-related correlation as well. There are still neurologists out there that apparently are not updated. It has taken many years before this syndrome was finally categorized as “neurological”. And there is still a lot unknown about RLS & its exact cause. That’s why neurologists still do not have a lot of info to share with patients yet. Ive gone to 2 reputable neurologists—-at UCSF & now I am at Stanford. They both state it is “neurologic” condition.
There are 4 criteria that helps doctors determine if a person likely has RLS, on top of listening to a patient’s symptoms. It can then “still” be hard to diagnose. A sleep study can provide additional input as well (if your insurance pays). No test can absolutely diagnose RLS. Many people end up with theirs getting worse as they reach middle age & older, (while others get better since childhood, early adult onset, etc.). I had mine since a child but never thought about asking anybody what it was. I thought everybody felt this miserable!!! Or that I was just nervous!
I am now 56 with unfortunately worsened, severe RLS that carries into the daytime. I did not go into REM sleep during several sleep studies, nor had any movements when asleep. We may do a sleep study AGAIN to see what happens WHEN I DO GO INTO REM SLEEP.
I DID end up REQUIRING A Bi-pap then a C-PAP machine for SLEEP APNEA. Sleep Apnea can affect RLS — even significantly.
I also have PLMT (Painful Legs & Moving Toes Syndrome)....a fairly rare syndrome that not too many neurologists have seen. I happened to show a video to a neurologist of this debilitating condition; he immediately printed out an article & has seen a few patients every few years. It is becoming more known, as it had been misdiagnosed frequently in the past, as neurologists hadn’t seen the “combined symptoms” as such.
In addition to severe RLS, and PLMT Syndrome, I have ACQUIRED TORSION DYSTONIA (a neurological movement disorder). Dystonia is the 3rd most common movement disorder, but most have never heard of it (just in case you wanted to look it up). Yet most everyone has heard of Parkinson’s (a very commonly known movement disorder). I actually don’t know if all 3 conditions may be correlated or not?!? Hmmm.
It seems my RLS worsened to severe status around the same time I got the other 2 disabling movement conditions.
I personally recommend everyone see a neurologist. And go to another one if your current neuro does not take your RLS seriously & follow it up with a FULL IRON PANEL & FERRITIN BLOOD WORK.
Many doctors still don’t realize RLS was changed to being a “neurological” condition. I will definitely read the other articles. I understood from a UCSF Movement Disorder Specialist that a FULL IRON PANEL & FERRITIN (blood work) is VITAL in getting checked, as it can affect RLS. ALSO... if you can get a SLEEP STUDY done to check for SLEEP APNEA — that can affect RLS as well. So in this respect, I can see RLS being in the autoimmune-related category also. But the medical industry changed it to a neurological condition.
I finally have a Rheumatologist (in addition to an Endocrinologist). The Rheumy is testing me intensively & thoroughly, including “Raynaud's Syndrome” (it’s definitive), & for possible “Sjogren’s Syndrome” (ongoing/pending). She is basically trying to rule out TONS of autoimmune & rheumatology-related conditions.... especially since I have a multitude of orthopedic and neurological issues — regardless of my severe RLS.
Hope this helps “someone” out there. Looking forward to reading the articles from all of you. Thanks for taking the time to read all of this. Hang in there everybody! Fondly, Deb
in reply to debk8484
This is the first article I read that started my looking into all this. Instead of focusing on meds to make our lives bearable (which seem to always stop working, and add fuel to our misery cycle) it focuses on what our bodies are doing to give us this awful disease.
There are lots of links attached to this article as well.
nightdancer in reply to
not the best place to start with, but will not get into it here. We have dealt with the guy who runs that web site before, doing things that were not exactly legal.
that moving toe thing is that where the foot goes right to the side pointing inwards and your big toe goes right up more or less touching the top of your foot? only asking because it happens to me lots of time thankfully my joints on my big toes are back to front otherwise in sure it'd be blumming painful lol
Very interesting. I didn't know about this but can see no reason why it shouldn't be correct. Yes, there's a theory about dopamine receptors and another about iron transport and all manifest neurologically but all that means in the autoimmine field is that different things are attacked by our own immune systems but why not?
RLS seems to be several different conditions with the same outcome and demonstrated too by the variable response to treatment.
Apart from a few, often autoimmune conditions come on as life goes on and can get worse with time which I think fits with ongoing destruction. There isn't just one type of overactive thyroid for example. This too runs in my family but we don't have the more common antibodies often found.
I'm pleased to know that researchers are thinking out of the box as it opens up the possibility of more research and hopefully more options.
If the autoimmune people get hold of this as well as the neurologists who knows where it might lead.
in reply to
I’m reading everything I can get my hands on about autoimmune diseases. And yes, autoimmune diseases can attack the nervous system.
I’m surprised at how many of my books list RLS.
The best explanation I've read is that rls is caused by myelin damage to the nerves which causes them to be over sensitive and to false trigger. The damage is caused by permanently raised levels of insulin in the blood which is required to deal with modern, Western, high carb diets. That's why it's classed as an auto immune disease. The answer is to reduce sugar and refined carbohydrate intake drastically ( the body only requires 20g of carbohydrate per day). Also the nutrient content of the food needs to be raised, either by eating more nutritious food, or with supplements. The nutrients required include omega 3 fatty acids, vit b12, vit b1, calcium, magnesium, calcium and iodine
I stumbled upon this solution as I had taken most of the supplements and then realised that my rls attacks always followed soon after consuming a sweet food. I have been free of rls for over 12 months now apart from times when I've let the diet slip
There can be other triggers, but it would be easier to spot those if the low carb/high nutrient diet was followed and that potential cause was removed from the puzzle. (mine is sorbate food preservative which I've avoided for many years)
Taking many supplements can be expensive, so although it's more trouble, it's cheaper to cut out the processed food and ready meals which are high in refined sugars and starches, and cook from scratch, including a lot of leafy green vegetables (especially things like nutritious kale), beets, peppers, oily fish, grass fed meat and seaweed, if you can get it (otherwise a kelp supplement). Basically a diet more in line with The Wahls Protocol developed by Terry Wahls.
they just list it as an autoimmune disease, but there is no explanation as to why they categorize it as such. I would be interested in knowing the theory behind that.
in reply to RLSgirl
The books I’m reading do try and explain it...”Typically, a disease is considered autoimmune when it meets the criteria of Witebsky’s postulates. Created by Ernst Witebsky in 1957, the 4 postulates include direct evidence of the presence of antibodies, indirect evidence from animal studies, circumstantial clinical evidence, and the presence of genetics that are similar to other autoimmune diseases.”
-The Everything guide to the Autoimmune Diet
nightdancer in reply to
The registry web site ONLY uses things from ONE web site to determine what THEY think is autoimmune or not. They give zero evidence as I have explained in other replies.
The autoimmune registry provides no evidence to support their inclusion of RLS on their list. None of the three references they provide state that RLS is an autoimmune disease. It is possible that some with autoimmune diseases might develop RLS as a secondary condition. But they provide no evidence that primary RLS is an autoimmune disease.
in reply to rls_optimist
Do they support the inclusion of the others on the list?
I agree with rls optimist the registry does not show any evidence to support their claim
in reply to Pippins2
I guess the question was, has anyone heard or seen anything saying RLS is an autoimmune disorder. There are 2 autoimmune registries as well as autoimmune books that I am currently reading that that list it as one. I’m not trying to prove anything, or back up any data. Just asking this group if anyone else knows more.
rls_optimist in reply to
I have never seen RLS refered to as an autoimmune disease, in all the many research papers I've read about RLS. I'm glad that a group of people have put together that autoimmune disorders website. But for me, ther are some red flags regarding the veracity of their data:
1. They do not provide any information for how they decide which conditions to include in their list.
2. None of the principals, staff, or medical consultants have any expertise in the field of autoimmune disorders. Most of the staff and principals come from the software or biopharma marketing world. (Nothing wrong with software: I'm a bioinformaticist myself. But I know what my limits are.)
3. Again, they provide no supporting evidence for RLS being an autoimmune disorder on the RLS page. (I did not check the pages for other conditions. If they don't provide evidence for those conditions either, then that's an even bigger red flag. That would call their entire site into serious question.)
The Restless Legs Syndrome Foundation, which is backed by considerable medical expertise, lists RLS as a neurological disorder, and does not refer to it as an autoimmune disorder.
Thanks SO much for posting this. I clearly have RLS and PLMD and now that I'm in my 50s I am having other auto-immune type symptoms as well. Makes so much sense. I registered!
Thank you for your post re autoimmune registry. I do have an autoimmune disorder related to my thyroid and I also have obstructive sleep apnea and use a CPAP machine. I think it may all be related, as others have suggested. I eat a terrible diet, very high in carbs, lots of sweets. I also have metabolic syndrome, or pre-diabetes as some call it. I know I need to change my diet. For those of you have significantly reduced carbs, how did you do it? I start to do it, then my cravings start, and I eat something sweet. I must stop this destructive lifestyle, I know that. Cathy
in reply to KickininAz
Yes, I think you are right. Hard to change diet, but I’ve tried 10 years of trying everything else with miserable results. I’m trying, and pray it will help.
I'll be darned! I have two other Autoimmune disorders. I wonder why I'm getting so many auto immune problems?
It tells you right off the bat, that this registry does VERY little research. They only go by things published on pubmed, and they will list anything that has "no known cause" and is REFERRED to 3 times on that web site as being thought to be autoimmune, then they list it. This makes for a very unofficial list of autoimmune diseases. Not the best reference for this to be really honest. Officially, RLS is a neurologically based movement disorder that is a sleep disorder. Anything else is conjecture at this point.
Also, the registry goes by ANY small mention of a possibility of being autoimmune, most of the time in very small studies of 30 people or less on the average. Just being mentioned in a paper does not make it so, so it is a THEORY at this point, and and has been for at least a decade with no big results.
in reply to nightdancer
I’m not out to prove a THEORY. I asked if anyone else has heard of RLS being an autoimmune disorder. Again, I am reading 2 autoimmune books currently, and they both list it as one. I then went to the internet to see what I would find, and 2 different registries came up. Referencing it as a reliable source wasn’t the intention. Asking if others have knowledge of it being seen as autoimmune was.
This could explain why some people not all get relief with low dose naltrexone which is very useful for autoimmune problems.
The LDN works by briefly blocking the endorphin receptors of the body, usually at night for a few hours. In response the body results in a reactive increase in the production of endorphins, which should result in a reduction of painful symptoms and an increased sense of wellbeing. A lack of endorphins is linked to RLS.
Increased levels of endorphins should be expected to stimulate the immune system, promoting an increase in the number of T lymphocytes. This effect was observed in Dr Bihari's research. This increase in T-cell numbers apparently restores a more normal balance of the T-cells such that the effects of the disease process are significantly reduced.
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