A family curse!: Hello all. I am new to... - Restless Legs Syn...

Restless Legs Syndrome

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A family curse!

9 Replies

Hello all.

I am new to this site but not new to Restless Legs Syndrome. Unfortunately it has passed down the generations which a Consultant Neurologist found interesting.

How far back it goes is unknown but my paternal Grandmother suffered from it, also her son (my father), his sister, my cousin, myself and now my daughter has developed mild symptoms. Does anyone else have a similar history?

9 Replies
Jelbea profile image
Jelbea

Hi Avallon. Welcome to the site. There are two types of RLS - one of which is inherited. I am surprised that the Consultant Neurologist found this "interesting" as he should already know this. My mother suffered, I have it and both my daughter and son have it. I wish I had passed on something nicer! You will see on the site that this is the case. I was first aware of it at 14 years of age and am now late seventies. The other type can be triggered by various things - pregnancy, low ferritin (iron) stores in the brain, kidney disease, etc.

Did your neurologist suggest a treatment for you?

Others will come on the site and give you comments as well.

in reply to Jelbea

Thanks for that. I should have explained that the Neurologist did know about the inherited strain of Rls. He recommended Gabapentin which my excellent GP immediately prescribed and to increase Ropinirole as necessary. I'm researching my family history and often wonder if Roger, born 1660 , experienced the then unnamed Rls and passed it on over the centuries.

Joolsg profile image
Joolsg in reply to

Don’t just increase the Ropinirole ‘as needed’ because that is more likely to cause augmentation. The top RLS experts now recommend keeping the dose as low as possible. If it stops working- switch meds. As others have advised, read about augmentation.

Idiopathic RLS is known as Willis Eckbom Disease, partly named after Sir Thomas Willis who wrote about it in 1672. So it's been around a while.

As regards your Ropinirole, I hope your doctors made you aware of the long term consequences of taking a dopamine agonist, i.e. loss of efficacy, augmentation and Impulse Control Disorder. Increasing the dose of Ropinirole will increase the risk of augmentation.

If you increase it and find symptoms getting worse then you will.probably be suffering augmentation.

Eryl profile image
Eryl

I believe that rls in itself is not hereditary, but people's sensitivities are hereditary, dietary habits tend to be passed down through the family, and inflammatory diets are one of the causes of rls.

in reply to Eryl

Sorry Eryl i have to disagree, RLS is hereditary for SOME of us.

in reply to Eryl

You are right in a sense, it depends on what you mean by RLS and what you mean by sensitivity. Restless Legs in the broad sense is a syndrome not a condition.

Idiopathic RLS or Willis Eckbom Disease (WED) however is a condition.

So not all RLS is hereditary but WED does run in families, Additionally, specific chromosomes involved in it have been identified.

However, like other conditions e.g. schizophrenia or suicidal tendency, the "expression" of RLS would seem to require both the hereditary "predisposition" and a "trigger". (Sometimes called the diathesis and stress model).

The RLS syndrome can also occur without the hereditary factor i.e. secondary RLS.

There can be many stressors or triggers and these could include dietary stressors, or other inflammatory conditions of the gut. (There is some association between Crohns disease, ulcerative colitis, IBD and RLS).

However overall, it's a matter of probability, the more closer family members you have with WED the greater the probability is that you will get it. It isn't however a 100% certainty.

DicCarlson profile image
DicCarlson

Well everything is hereditary! The man whose father died of a heart attack at age 55, and is looking at that train coming down his track, well you INTERVENE to prevent the heart attack! It's not a foregone conclusion that you will die at an early age from heart disease. I just started reading the book "Why Isn't My Brain Working?", Datis Kharrazian - fascinating connections from diet - supplements - neurotransmitters - hormones - gut/brain axis - etc.

Everyone's RLS has a cause and it isn't always simple and it isn't set in stone.

ESRDRLS profile image
ESRDRLS

I am 58. Have suffered off and on until I started dialysis for kidney failure. Now no breaks. My father now deceased suffered all his life with parents that told him it was growing pains and the military told him it was nerves so he decided to suffer in silence after that he was a very proud man and did not even tell me about his rls til I was in my 30s being afraid it was in his head so he might put it in mine. I so wished he had told me sooner. My mother now also deceased developed rls the last few years of her life. So no you are not alone. It can be hereditary but that is as far back as I know about in my family although I do suspect my grandma on my others side may have had it and possibly her mother also but I can not be sure of that part.

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