Alcohol and exercise makes no difference to me

[Wendy1]

I have RLS and take Ropinorole p.m. Sometimes this helps a little, sometimes I pace the floor at night because my legs and feet are 'kicking off', friends cannot believe it when they see my legs, feet and toes twitching. Having researched quite a bit, i know that insomnia can sometimes be linked to RLS. I have always had a problem sleeping so this makes sense. Also I am frequently anaemic so the ferrutin levels affecting RLS makes sense too (I regularly take prescribed iron supplements) I am told that drinking alcohol can affect RLS - it makes no difference to me although I only ever drink a couple of glasses of wine or rum and coca cola. Exercise makes no difference either - I can play sports, swim, hike miles or other sports and I still suffer terribly that night.

RLS seems to be totally indiscriminate. We need more expertise in the UK in this area. The neurologist I was sent to see did not seem to have an in-depth knowledge of RLS and I had to research it myself. I have tried so many non-medical so-called cures, but was forced to surrender to Ropinorole in the end and, luckily, at the moment it is easing the level of symptoms most of the time. I know from comments posted that this will not last but as I always say to my daughters, "It could be worse", at least I have legs!

[Hidden]

I have never been fit to understand my RLS and have had it my whole life. Alcohol while 80% of the time making it worse can sometimes be taken with no effect as far as I can tell.

I have looked at diet, exercise, stress and every other factor that I think can be looked at and still can find no rhyme nor reason to it.

It could be worse I have it up my back and arms too and long for the days it was just in my legs!

[Wendy1 in reply to Hidden]

Bless you. I hope my RLS stays in my feet and legs! Wish I could help people like you who suffer so badly. My daughters say my epitaph should be "It could be worse", but when I hear how people like you suffer, I think it COULD be worse.

Keep smiling though.

[Hidden in reply to Wendy1]

lol - I keep telling myself it could be worse and it did get worse as I developed ME and that means I haven't the ability to pace when the legs are bad. I have lost count of the amount of nights I had to roll about the floor as I was too exhausted to walk ( I used to walk up and down the stairs on my tip-toes to ease the legs).

I would gladly give every penny I have and my home to get rid of this, every other medical complaint I have is exacerbated by the RLS and at times life gets very difficult.

BUT at the moment the body is quiet and I am enjoying that. It is such a terrible condition and people that don't have it think its nothing big.

Make sure you keep your Iron levels up and my GP also advised to avoid aspartame - although I've never noticed any difference with it.

There is good support and advice here you are not alone!

Are you on any drugs that could make it worse - antidepressants are notoriously hard on people with RLS.

I like this site for help:

rlshelp.org.

and there is another site:

rls-uk.org

one of the guys on here is a moderator on it.

Good luck.

[debchau]

I too have tried exercising which made it worse. Alcohol usually makes it better for me. Ropinirole is my saviour right now been on it for 5 years stronger doses every 6 months to a year. Not happy taking it waiting for the Neupro patch to get back a normal life.

[Wendy1]

Bless you! Ropinirole does not get rid of my symptoms, only lessens it at times (not always)

I have started taking Magnesium supplements and actually my RLS has definitely improved. Fingers crossed! I am now also keeping a chart which I devised, so that I can look back after about 3 months to see if there are any definite triggers or things which lessen symptoms. I will let you all know!