Hereditary RLS

[Becoming2]

I currently live in Oklahoma. I have had undiagnosed RLS since I was a teenager. I'm now 68. In my case, my symptoms have been mild, and intermittent. My mom had RLS, as well as her sister, my brother, and me. Also, hypothyroidism is double that... my mother, both her sisters (no brothers), my first cousin, my youngest brother and my sister, last born, and me. Note: I am the oldest of 4 children. And, lastly diabetes type 2... me, my mom, and her twin sister, and my brother.

After reading responses to sitting and laying down onset along with getting RLS sensation in your arms as well, that I read having diabetes as well was not uncommon. At last, after going on and on ^^ up there, here is my question.

Do you think there maybe a correlation between hypothyroidism, diabetes 2, and RLS?

[Hidden]

I'm no expert on this but I'd say it's unlikely.

The most common form of genetic hypothyroidism is an autoimmune condition. Similarly, genetic type 2 diabetes is also an autoimmune condition.

Therefore it seems that there may be some correlation between hypothyroidism and diabetes as they may both be autoimmune conditions.

There is very little evidence of RLS being an autoimmune condition.

I see no evidence of any other connection between RLS, hypothyroidism and diabetes.

My personal experience is that neither my parents or any close relative have had hypothyroidism or diabetes and I have moderately severe RLS.

[Joolsg]

Dr Kirsty Andersen of Newcastle speaks at the RLS AGM every year and she recommends her patients lose weight before she considers meds. She says weight loss can reduce RLS.As Diabetes type 2 is usually associated with poor diet and lack of exercise, there could well be a correlation.

However, As hypothyroidism causes weight gain it’s a bit of a vicious circle.

I don’t think there’s a study showing a definitive link between Diabetes, hypothyroidism and RLS but it would appear that losing weight can reverse type 2 diabetes and according to Dr Andersen, reduce RLS completely or its severity.

I’m sure there will be scientific studies on this somewhere but I haven’t been able to find any.

[Hidden in reply to Joolsg]

Well i am definately not overweight, and my RLS is still severe, so i dont understand that statement by Dr Kirsty Andersen . Type 1 diabetes can cause nerve damage and that can result in RLS. I read that as my youngest granddaughter age 7, diagnosed with Type1 age 5. I sooooo hope that it doesnt happen to her. Whether that would be the same for Type2 i have no idea.

[Joolsg in reply to Hidden]

Yes I agree. In fact when Dr Andersen was saying that weight loss helped her patients I looked around the AGM and the vast majority of people listening were slim and we clearly all had severe RLS.

[Hidden in reply to Joolsg]

I can understand people who lose weight maybe while they are doing that, they are not eating food that could be their triggers, hence their RLS would reduce.

[Raven123]

I have read studies by experts in the field who believe the hereditary theory of rls is simply the fact that families tend to consume the same types of food and drink. Some of which would contain large amounts of sodium. Read your labels. Also sodium can be listed as something other than the obvious name “sodium”.

[Hidden in reply to Raven123]

Primary RLS, genetic, thus inherited from a parent. They found genes which relate to that. Altho i would like to see who those experts are and where you read it.

[nightdancer in reply to Raven123]

What experts and where? We need a source. I have been managing RLS groups since 1996, in person and online. I KNOW the EXPERTS at Johns Hopkins, and elsewhere. I have NEVER heard anything but theories, unproven ones, about drinks and food. Family members who live in different countries and on opposite coasts, as well as different generations, can have GENETIC or PRIMARY RLS. The GENES have been discovered, and named, and you can find that on the Johns Hopkins web site, Dr. Buchfuhrer's web site, and the RLS Foundations' web sites for the USA and the UK. If you do not believe them, there is no hope of convincing you. Yes, alcohol and sugar CAN affect some people's symptoms, THAT is SECONDARY RLS, NOT genetic RLS. This I know for a fact. So, if you would care to enlighten us to where you got your information, I certainly would like to SEE it. Like I said there are tons of theories , decades old, on RLS. Genetic RLS is a FACT. If you do not believe the RLS Foundations on this, then I am sorry.

[nightdancer in reply to Raven123]

sciencedaily.com/releases/2... Not sure if this will work, the link, BUT go this web site and put RLS and genetics in the search if this link does work. There is a 10 year long study, completed in 2017, that show 13 "previously unknown genes, etc" The study was done by RLS experts in Germany. Where do you get the sodium thing from? Study and source?

[nightdancer in reply to Raven123]

AND, IF families 'get RLS because they "eat and drink the same things", then why would the WHOLE family NOT have RLS in many cases? One of my fellow admins on my groups, is an expert in genetics, and we do know what we are saying when we say RLS can be genetic and is for about 70% of people who have RLS. In MY family, and NONE of us eat together or live together, me, both my sisters, both my nieces and the oldest one's kids all have RLS and PLMD. BUT, most of the MALE members in our families do NOT have it and my mother lives with me, and she does not have it. And she and I DO eat the same things.

[Bajatom]

Link to studies on reversing type 2 diabetes along with case studies of indivdual success stories. Diet and exercise may be more important than genetics.

drmcdougall.com/health/educ...

[nightdancer]

There is no medical evidence that even suggests that being overweight, Diabetes, and thyroid issues are connected to RLS. Sure, it id good to always lose weight. But, RLS is neurological, and is caused by the neuro receptors being blocked, that would D1 and D3. They uptake dopamine to the brain, via the spinal fluid.

[nightdancer]

You can actually be genetically tested for the RLS genes. The Diabetes Foundation says it is a working theory if "nerve damage from elevated sugars MAY lead to RLS".

[Becoming2]

Thank you all for taking the time to respond. I've not felt the need to reach out to others with RLS most likely because I grew up with RLS present in me and my family. Both my parents have passed. I was their caregiver. My mom died in December 2016 from congestive heart failure. She was 83 and mentally alert until the very end.

It was watching the absolute torture she suffered during the last week of her life from RLS. I don't think anyone could ever convince me, or my husband, that RLS wasn't responsible for hastening my mom's death. There was no relief, no sleep the last 2 weeks until she simply couldn't move her legs.

I apologize for being so morbid, but my husband and I witnessed the unrelenting torture (I wish I could think of another word but I can't) that RLS put on a woman we both loved so much. Since then I have been too frightened of the RLS monster. I need to arm myself with the truth as it is understood. Thank you again for responding to my question.

[Hidden in reply to Becoming2]

I am so sorry to hear of your mother's passing. RLS untreated is like torture, the sleep deprivation can effect our bodies , we need sleep to keep our bodies working in good order.