Hereditary?: Hi I've had RLS since I... - Restless Legs Syn...

Restless Legs Syndrome

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Hereditary?

Windyowl profile image
21 Replies

Hi

I've had RLS since I was a teenager some 30 years ago, I'm finding this group very reassuring to know that I'm not alone. I do now take magnesium when it's particularly bad. My 22 year old daughter also has it, worse than me, is there a hereditary link?

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Windyowl profile image
Windyowl
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21 Replies

Not all cases of RLS are inherited. Secondary RLS, as a consequence of something else, can be caused by such things as pregnancy, anaemia, some drugs etc.

Low iron levels are associated with RLS.

Some cases of primary or "idiopathic" RLS may be genetically determined ( hence inherited). It's not a simple inheritance however like eye or hair colour as there are several genes involved, so presumably how many of these are inherited influences it.

The fact that both you and your daughter have it, in your case, means it's inherited. Females tend to be more affected.

There is a chance her offspring may develop RLS, but it's not a 100% certainty.

It is very common, a lot of people might not even realise they have it, especially if it's mild.

Windyowl profile image
Windyowl in reply to

Thankyou

Windyowl profile image
Windyowl in reply to

My daughter did have to take vitamin D and is now on folic acid, not pregnant I've been assured :) I will keep following the group as there have been some helpful comments posted by everyone.

Pippins2 profile image
Pippins2

Hi the experts say there's a genetic link in around 70 %of cases. The genetic type is known as Primary RLS. My grandmother, mother, myself and my daughter all have RLS. My mothers brothers and my own brother are unaffected x

Madlegs1 profile image
Madlegs1

There is also a possibility that "Nurture" may be a bigger effect than many think.

For example, if a family are triggering rls by drinking ,say, fizzy drinks- then, while it might be claimed to be hereditary, it would actually be environmental.

Only by keeping intake diaries, can we truly determine rls causes, be they triggers, neuropathy or deficiencies in the body, such as iron.

🤓

Windyowl profile image
Windyowl in reply to Madlegs1

Thank you, really helpful comments. neither of us have fizzy drinks, sets of my IBS and she's a very healthy eater.

Madlegs1 profile image
Madlegs1 in reply to Windyowl

Fizzy drinks was just an example.

Triggers involve many items. My worst one is raising agent in biscuits/ cookies.

AhabHick profile image
AhabHick in reply to Windyowl

I find fast food, jar food and canned foods affect me espeically condiments like may and ketchup where xanthan gum and other stabilizers and thickners are added.

I had tried creative cooking with xanathan gum to make thick diet sauces and noticed it triggered me.

Parminter profile image
Parminter

Yes, in familial RLS. The scientists have found at least 19 gene loci which are associated with the condition.

Non-familial RLS is associated with pregnancy and kidney failure, among others.

You clearly have familial RLS, and if you ask close relatives you will find more.

Sara_2611 profile image
Sara_2611

Hi Windyowl. Not that I know of I've had it since I was in my 40s . Theres nobody in my immediate family who suffer with it - so I dont think so. Unless there are family members somewhere in history that I dont know has it -!!???

But as far as I know I dont know. Hope you manage to find an answer to your query

in reply to Sara_2611

Sara, i am not saying you do have Primary RLS, BUT a parent who had/has the gene doesnt always have to show RLS symptoms, but would/could still pass the gene down to their children. If for sure yours isnt Primary, then it will be Secondary RLS, an underlying condition . Mine is Primary RLS, inherited from my father, he didnt have a clue he had it, i knew its what i had because of my father sitting on the side of his bed at night and thumping his legs, so it was stopping him sleeping, altho his was mild, my parents ended up in separate beds. My brother has it, BUT both my adult children have shown no RLS symptoms and none of their children, my grandchildren have shown any RLS symptoms as of yet.

Sara_2611 profile image
Sara_2611 in reply to

Hi There Elisse2 . Yes I know that lol

I'm wondering whether it is primary RLS because I was living away from home. when it started up. When I was with a partner my continual kicking out made him sleep in another room

I really dont know to be fair I was just clutching at straws because its a condition Ive never had over my childhood days & growing up/teenage years. -It started up in my 30s

in reply to Sara_2611

Its not easy sometmes to work out which you have, unless you have taken a med around the time it started which would have triggered it off, Or any of the other underlying conditions that point to Secondary RLS.

Tubbygranny profile image
Tubbygranny

I believe it may be in some families. My mother had them for as long as I can remember - we called them ‘fidgets’ - my sister gets them though not as bad as mine and one of my daughters struggles with them too.

lbrosa profile image
lbrosa

My Dad had RLS severely for several years and did not take any medication for it...he seemed to outgrow it when he reached his 90's! Both of our sons have RLS to a lesser degree than I do...but my husband also has it to a lesser degree and he seems to be the only one in his family to have it at all...so who knows. All of our iron levels are above 100. When I was younger (I am now 75) I only had RLS symptoms when I was pregnant and occasionally when riding long distances in a cramped space! During my 60's the RLS seemed to rear its ugly head more frequently and more severely and that is when I asked the Dr for help and was given Ropinirole ... it was like heaven for about one month and then continually got much worse and the Drs. kept increasing the dose and the RLS kept getting more and more severe. Then Dr. gave me Pramipexole and it did very similar except I did not even enjoy a whole month of relief. But I went on for 3-4 years being told by various Drs. that the ailment was just progressing as I aged. It was not until I did some extensive research and read about "Augmentation" that a light went off and I realized that the meds were actually making the RLS worse.

Windyowl profile image
Windyowl in reply to lbrosa

Ibrosa my dad has it too, he is 86 now and he blames his on working so many years on his feet. I'll tell him he only has 4 years to go till they might pass 😃

DicCarlson profile image
DicCarlson

I had "growing pains" as a child (under 10) and was also treated for iron deficient amenia. Nothing more 'till my 60's! Then a head injury (concussion) started sleep difficulties which progressed into full-blown severe RLS. Iron supplementation was the key - and severe symptoms went away within a month. Still plenty of sleep issues and occasional RLS. I believe many people are "on the edge" and food triggers, stress, brain dysfunction, etc send you over the edge into RLS land.

kelirock profile image
kelirock

Hello

Seems there is a hereditary link. My mother suffered from RSL, I have it and my daughter is now starting to develop symptoms.

Brica profile image
Brica

I have had RLS since childhood off and on, but has become progressively worse since my 30’s. Have been on most meds used to treat RLS with some success, but positive results usually stopped being effective after a few months. Meds were changed and increased with no relief and at times worse. I would have no symptoms for years, but later it became worse. Last year, I am 82, it became unbearable; I began looking online and found more and more information, i.e. RLS Foundation and Johns Hopkins. Health Unlocked has been soo helpful and supportive. I am now being treated by a Neurologist who knows how to help. I have been taking iron supplementation with excellent results. I see him every 4 months and have iron levels monitored regularly as well. My iron is now 154 and ferritin 174. I found this Neurologist through the Foundation; am so grateful because most Doctors are not always aware of the recent treatments for RLS. I hope you fine relief soon; stay in touch.

Brica

Ozxy profile image
Ozxy

I think so as my brother and my daughter had it

Sara_2611 profile image
Sara_2611

youre in a great group- hope you feel comfortably -we support each other through this site. I dont think its hereridatary as far as I know -I thought maybe it was -Dont think there is any medical evidence of it

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