RLS and the age at which it affects people

[Daragh]

A few weeks ago I put a poll on the forum asking people when their RLS first appeared, not when they were diagnosed but when they first felt its symptoms. This was purely because I have a theory that it affects people much younger than is regularly cited in medical journals etc; I developed it when I was a teenager. RLS is regularly referenced as being an illness which affects 'older women'. However, this fails to take account of the fact that many of these 'older women' and men will have lived with the condition for many, many years before being diagnosed.

Interestingly, of the fifty people who responded, almost one third first developed symptoms between the ages of 11-20. In total, over HALF of those who responded developed symptoms before the age of 30. So, the evidence of this small sample indicates that RLS may in fact appear much earlier than is widely thought. If you have not answered the poll, please do. The more responses we have, the more accurate a picture we can develop. Please encourage other forum users to respond. We could be on to something which has previously been unrecognised...

Daragh, Chair RLS-UK

[Hidden]

i dont think my son answered that question, but his also started in his teens, 19-20 as far as i remember, i will have to check up with him

[nightdancer]

Maybe you should to write to that doctor who states that "most people who contract RLS are elderly ladies". grr I am having a hard time commenting, but your post with this exact information would be extremely helpful. Please see my "Ekbom Syndrome" question I put up, though, first, if you decide to comment on her answer to that poor woman.

[Hidden]

It definately appears in most people when they are quite young, nightdancer has ,members in her group that have children who are suffering with RLS..

Although many have symptoms when they are young, sometimes those symptoms are fairly mild for most and its only as we get older those symptoms can get worse. Although that is not always the norm. Also i agree that many do not go to their doctors for many years before they get diagnosed, that can be for many reasons. They dont think their doctor will take them serious, they think there isnt anything that can be done, they dont realise that what they have is a medical condition. Sometimes its only when they are on the internet they come across the condition and realise that they do indeed have RLS.

[Hidden]

i was 8 years old when it first started in my arms quite badly then went on to my legs by time i was 12 now really bad , i didnt go to dr's when younger mother thought the bruises on my arms and legs we're normal child thing knocking into things half the bruises we're from me thumping myself to get rid of the feelings i got not knowing why.... gggrr

[beardedtwitch]

Mine started when I was in my mid 60's after a very stressful divorce.

[Rish]

Sorry cant of seen that one but mine started when I was 19 .

[eileen49]

I was 46

[steve57]

As far as I can remember I was 19, but that was 36 years ago and I didn't know that it was rls until many years later. I hadn't heard of the condition at the time and I think it is very possible that I had it earlier but it was 19 before it started affecting my life.

[jan_ET in reply to steve57]

i was about 9

[Cobourg]

Sorry I missed this poll. I was about 14 when it started, by the time I got to 16 it was very bad, nothing has changed since then. I am now 63.

[Daragh]

Thanks all for your comments. The poll is still active. Just click on polls in the menu at the top of this page and you will find it on the right-hand side of the page you are brought to.

[spot88]

Hi, never heard of restless leg until a month ago when I was diagnosed by my doc after I did not sleep for a week - I thought the pain and continuous leg movement was something to do with arthritis so never bothered the doctor. I am 67 but have had the symtoms since I was 38

[Elmstreet]

My RLS got to daily symptoms at about 35, but I am sure I had it when I was a teenager, but it was more tolerable and I had more resilience, so it went unnoticed. Now I am 49 it is not tolerable and I have no resilience, sigh!

[TheDancer]

I was diagnosed in my late teens but had been suffering for years by the time I actually decided to see a doctor. However in those days I would suffer in short spells followed by quite long remissions, but since I got older it has become a permanent illness.

[Avosyl]

I wasnt diagnosed until about my late 40's early 50's but did suffer from around 16-17. Add to that is the fact that as a child of about 8 i was having problems i was told were growing pains. On investigating and gathering info to take to my doc to try and push for help i found out that in America they had done a lot of research which found that the strain that runs in families is in fact what i was suffering from at that age. So although i was only recently in effect diagnosed i have had this since about 8yr old.

[sue1406]

Mine and my daughters started very young 2-3 years old. My mother always was told it was growing pains by her mother when she suffered with it as a child so we always thought the same until recently. My mother still suffered until she died at 80

[LotteM]

Someone found this old poll and this it popped up again. I haven’t replied before. My earliest rls-symptoms as I remember were between 25-30y of age. I wasn’t diagnosed (well, that is self-diagnosed) until the age of 54. For you stats: I am a woman.

[Arkangel]

All my life