Understanding RLS

I have suffered with RLS for over 40 years, I have had years with no problem at all and then years of absolute torment. I know that in my case it is hereditary ( my uncle took his life because of it) my father suffered and so does my son. At the moment life is rough but my question is ' why can it sometimes manifest itself in just one leg or one arm' surely if it is a lack of certain hormones etc we would feel it all over!

Doesn't make any sense at all.

Thankfully it is beginning to be more recognised but my GP still makes me feel like a whining idiot and looks across the desk at me with disdain and disbelief.

Thanks to all on this site, just the knowledge that we are not alone helps loads.

Marie

8 Replies

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  • Thankyou, just knowing that there are folks out there to talk too helps a great deal. As someone on this site has said RLS is not a very good name for such a destructive and life changing ailment, it sounds so pathetic to others and many times their expression is one of disbelief that the small bother of RLS can get me down so much...

  • My RLS, just happens in usually my right leg mostly. Something i have yet to know why.. and not sure anyone knows the answer to that one. Sometimes, i get it in one arm, not that often thank goodness as i would rather get it in my leg or legs than an arm, cause that sensation for me is worse.

    I am sorry to hear of your Uncle, thats awful, i am guessing he didnt get any help from his doctor. Having a doctor who doesnt take you seriously is what it seems alot go through, thankfully i have a good doctor who does understand... Is there another doctor at your surgery that you could see...

  • Thank you for your reply, I used to get it badly in my legs but it has now migrated to my arms sometimes one sometimes both for me too it is far worse than having it in my legs, doesn't make sense.

    My uncle lived in Switzerland and died many years ago he would of been at his worse in the 1970's so I guess it's safe to say that he got no help at all from doctors.

    I have a good neurologist but my GP is pretty inactive, I had been on mirapexin for 6 years 0.18mg 6 times a day but it was stopped with no prior notice or explanation, it wasn't untill I went to my GP to find out what was going on that he told me that it was black listed, "why" I asked, "cost" was his reply.

    6 years and stopped with no gradual reduction! my son told me later it was like having a raving lunatic/mad axe woman in the house.

    So back to the neurologist who's words for the powers that be was b...ards! that at least made me laugh but we are back on the trial and error now.

    I must change my GP I feel so tired most days that I don't get round to doing sensible stuff like that

    I do appreciate this site, many thanks again

  • That is very common for RLS to "travel" around. It can start in one leg, go to the other go to your arms, and on the bad days/nights you do feel it all over sometimes. so sorry to hear about your uncle. There IS help to be had, it is just hard to find it sometimes. I know in the UK it is harder to switch doctors, etc, but that would be the first thing I would do is find a doctor who does not give you the "eyeroll". ( I am in the US) I have had RLS since I was 14, both my sisters have it, both my nieces have it and my oldest niece's kids who are 5 and 7. so, it is a family affair here. One of my parents must have had the gene and passed it down to us. neither of them had active RLS, but the gene can be passive. rlshelp.org , the treatment page is a great source of med info and expertise by an RLS expert who is also a medical advisor for support groups, etc. AND, on the treatment page is the list of "Drugs and Foods to Avoid" which is extremely important Many drugs that are prescriptions as well as "over the counter" meds can trigger RLS or make it worse. In one way we are lucky, the ones who have family members who have it, too, because there are a lot of people who get no support from their families and friends. so, at least we have that. ;) Glad you found us, lots of esperience in this group, and very helpful people that I am glad to call my friends. I am a member here, but do run online support groups, and have since 1997. And, some of my long time UK members in those groups are here, too. :)

    So, do not be afraid to ask anything. But,on your original question, there is no explanaton why that happens on one side or the other. It just does. There are no experts who have an answer for that either, sadly. And, there can be other resaons for RLS besides dopamine issues. For. example,me and many others cannot take the dopamine meds, either because of the side effects, or they just do not work for a lot us. So, in research coming up, a few experts have said that :"maybe we need to look past the dopamine connection" because it is obviously not the answer for everyone. It is all trial and error, and there are other meds to try, too. Most of the meds listed on rlshelp.org are available in the UK, so it is very helpful and you can email the doctor there from the treatment page or the home page of the site. he answers every email, and has since 1996. :)

  • Thank you for some very helpful information, we all find out the hard way what helps and what triggers RLS, I can remember being on holiday in California I bought an over the counter pain killer/ sleep aid within an hour I was climbing the walls, not a happy memory of Mono Lake that next day.

    I am not of a scientific mind but if the research were put in I imagine because we know certain meds can set it off it would be easy to get to what the problem is?

    Til i got onto this site I had no idea how many other sufferers there were out there, so hopefully numbers are starting to make a difference.

    Again many thanks

    marie

  • I've had rls for 8 yrs now , had it threw my pregnancy and never went when I had my child ?? when I was growing up I had really bad pains in my legs , in my knee caps as well , I'm sure it's a hormone thing too , but my docs are useless , they always get the book out and look it up , being a single mum and working , I'm so tired at times too , I'm on gapbetine sometimes it works , so times not x

  • Hi Betty, some GP's are useless it often makes me wonder why they do what they do, many moons ago I printed some information off from the internet and gave it to my doctor thinking it would help he immediately pushed it back across the desk with ridicule, not interested at all and clearly thinking that I was making a fuss about nothing.

    I have to change my doctor and thankfully it's not such a complicated process in the UK as it used to be, but after a night of next to no sleep I can never work up the energy to go through the process.

    Thanks for your reply

    Marie

  • "Leave me alone", that's what my poor family have to suffer often!

    It's so hard for those around you to not be able to help even my dogs who are always slammed up against me or on my lap look on in apprehension if it gets really bad.

    i cannot imagine having it in my back, sounds really awful.

    Hopefully one day in the not too distant future there may be some relief!

    We just have to keep shouting louder and bothering the doctors more, something I'm not very good at...

    marie

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