Does anyone else with whom you have a... - Restless Legs Syn...

Restless Legs Syndrome

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Does anyone else with whom you have a genetic link suffer from RLS?

Daragh profile imageDaragh124 Voters

Please select all that apply:

15 Replies
magggzzz profile image
magggzzz

I really hope that the first option stays at 0%

in reply tomagggzzz

:D

Daragh profile image
Daragh in reply to

I know option one may appear an unusual choice but there are cultures where marriage sometimes takes place between people who have a genetic link, so I needed to recognise this.

SusieL profile image
SusieL

I agree with magggzzz..... but I dont want ANYONE else to suffer with rls. The high percentage of mother is quite interesting however!

nightdancer profile image
nightdancer

Neither of my parents showed or show any symptoms, but both my sisters, my two nieces, and one of my nieces has 2 kids (5 and 8) with RLS and PLMD. So, I figure my parents carried the gene or genes that are connected to RLS, and passed them onto us. One can have the gene, but not have RLS. That is primary RLS. Secondary RLS is caused by a number of underlying conditions, which when addressed, some people can lessen their RLS by leaps and bounds. When we find the one factor, and I believe it is the genes, then we will figure out how to treat this insidious disease. Many specialists think that people with RLS have had the gene "activated" either by surgery or an accident or injury or the wrong kind of medication, and that it is passed down from the parent or grandparent. Also, it is almost universal, that during a sleep study a person with RLS will also show "excitability" of the spinal chord fluid. That is something else to watch. my RLS started when I broke my back, so that all seems to fit for me, anyway.

magggzzz profile image
magggzzz in reply tonightdancer

What exactly do you mean by "excitability" of the spinal chord fluid? I've not heard of this before.

My mum has RLS and apparently her mum too but neither to the extent I have it. They both however had/have rheumatoid arthritis and I don't. However what you said makes it more complicated genetically. it seems to be neither dominant nor recessive. It must be some kind of activation, like you said but I just can't think, in my case anyway, what that could be. I've had it as long as I can remember and I had no traumatic episodes or injury or medication as a child. When I was very young I didn't like to eat (unlike now sadly) and I had my appendix out when I was 13. I suppose that could have been it. I'll never know though

bodicea profile image
bodicea

The more we can find out about this condition the better we can understand and hopefully find a way of dealing with it, if not eliminating it altogether. Its a truly disruptive condition and it is not understood and often undermined by the medical profession.

magggzzz profile image
magggzzz in reply tobodicea

I must be very lucky with my doctors. They've been nothing but supportive and none of them has ever questioned the disruption this insidious condition can cause.

nightdancer profile image
nightdancer

My team of doctors is awesome, but so many people are not that lucky, or are working hard at finding a good doctor or doctors. It took me 10 yrs to find all the right ones. A simple medication like an antidepressant can trigger RLS, like SSRI's and tricyclic classes of anti-d's. It does not have to be a huge trauma that sets it off. And, if you google "excitability of spinal fluid in sleep studies" you will find all kinds of stuff. For some reason, all people, in all of the small and large studies all show that. Of course, that is something that is still being studied. But, as far as the genetic part of it, they discovered the first RLS gene when they were studying a huge family that all had RLS back in 2007.

Donna

I had a huge trauma when i was 6 years old, involving me having a really bad accident and spent years in and out of hosptial having major operations until i was 18 years old....It was in my teens that i first started getting some indication of RLS, altho not knowing what it was. It wasnt until i retired 5 years ago that it really reared up and my nights from then on became a nightmare.

My father also had RLS, altho not as bad as i have, and he wouldnt have know what he had. I also have a brother who suffers with it aswell. My eldest brother died when he was 56, he didnt complain about his legs, but who knows if he lived longer whether he would also have had RLS rear its head.

For my brother and myself, altho ours is from our father, neither of us really got the symptoms badly until both of us retired..

riaz profile image
riaz

I have suffered with RLS since school days. Having suffered with back pain for most of my adult life finally it was found that I had scoliosis of spine. It is interesting to see comments about spinal fluid as the only treatment which helps me is Tramadol which also causes excessive sweating. So far other treatments suggested by doctors have had no effects.

peterk profile image
peterk in reply toriaz

Hello Riaz. I was on tramadol for about eight years at the highest dose- long release preparation. It certainly helped me but stopped working altogether. I am now worse but on a different pain medication. Nothing else has helped or has had serious side affects.

harecatcher profile image
harecatcher

As per vote my link is my mother who has slightly different RLS symptoms to me

Her father, my grandad, had it also

Also my brother has it too

wibblewobble profile image
wibblewobble

I started with 'twitchy legs' at a very young age, my Mother thought it was rheumatism/growing pains and used to treat my legs with radium B which gave a warmness to my legs and eventually stopped my legs from having 'toothache'. I went on with little or no symptoms for quite a few years until I was pregnant for the first time , then my 'twitchy legs' came back, I found out in later life that my Father had what he called 'twitchy legs' and also speaking to family members I have since found out that they also suffer from 'twitchy legs' I have since spoken to my cousins (on my Fathers side) and they also suffer from 'twitchy legs', Sometimes I cannot sleep due to my 'twitchy legs' and now jerk all over the place they have changed from being 'twitchy' to having a mind of their own. I am currently on Mirapexin and have been for a number of years, however, I am about to change to Clonazepam (which I have been on before but didn't allow me to sleep) as the Mirapexin doesn't appear to be working as well as it had been.

niabxxx profile image
niabxxx

I have four daughters and I've passed it along to two of them. I don't remember anyone in my family having RLS so I'm not sure where mine came from. Who knows great-grandfather, grandfather, because I didn't know my grandfather's very well they may have had it.

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