WHERE AND WHO CAN I SEE , WITH THE KNOWLEDGE OF RLS ????

RLS for nearly 30yrs and had appointment with pain clinic a few days ago. WHAT A WASTE OF TIME. Told that because I've had the problem for so long It's evidently not life treating, because I'm still here. " Yes " I have had it for a long time, but now I feel like I'm cracking up . Nobody seems to know anything about RLS and who cares because i feel the Medical Profession certainly don't. I have not slept much the last 3 nights . In fact I'm up most of the night every night. My life is a living nightmare, I'm sick of taking tablets . There must be someone out there that can help?????

4 Replies

oldestnewest
  • Hi sleepless and welcome...i think the medical profession can really only help up to a point.it an illness without a cure so all they can do is prescribe pills to help ease the symptoms and keep trying different ones till they maybe find something that will work. There must be many people out there that this works well for. But some of us it unfortunately doesn't. I'd suggest having a look through this site and seeing if anything we do might help you. Talk to us and I hope you find some companionship and support. We all understand how frustrating this thing is x

  • hi Sleepless, what a dreadful experience, do we only get treaetd now on our NHS if it's 'life-threatening' ? What about life-controlling? I've read some very distressing stories on this site from people whose live are completely controlled by this condition not to mention life-changing. I read a post yesterday, here, where someone else was desperate and asking for an authority to be referred to. Somebody replied with details of the top guy, if someone else can reply or give you that info it might be helpful. You can also scroll through the recent posts to find it. Good luck and I hope you find some relief.

  • Hope the previous answers helped. The question someone posted 'Can anyone recommend an RLS specialist my doctor could talk to as he admits that Med School spent a half hour slot covering RLS.!!!' has a few responses which may be useful. I'm in the UK. When RLS became a problem for me, I saw my GP and asked to be referred to a RLS expert. He asked me to find someone as he didn't know any. Eventually I found Professor Chaudhuri and told my GP there was no one in our local area with RLS knowledge so he arranged for me to see him. (Had to be approved by a board for NHS funding to go outside local area but there's the option of seeing him privately). It is very tough finding RLS experts so asking your GP for a referral to see a Neurology consultant might be a good first step if you haven't done so already. Best of luck

  • What is it with most of our GP's? I have had the same response from my doctor, totally useless! they have a computer in front of them and just the reply ' I don't know but I will try to find out for you' would be a much more positive action.

    I'm afraid my opinion of GP's in general is very low, I'm sure there are good ones out there but I know a lot of folks that self medicate because of the lack of interest that their own doctors show

    sorry I know this site isn't for dissing doctors, just letting off a bit of steam

    grrr

    Marie

You may also like...