What works for me

[Lindy14]

I was diagnosed with RLS over 10 years ago. I'd been to a session at work to learn about relaxing from the feet to the head. It was indeed, relaxing. Afterwards I used it at home. I experienced a funny sensation running up my legs and they started to move around out of control.

As I have epilepsy I wondered if it was a fit coming on. I was worried because I had a driving licence as my fits had only occurred while I was asleep. I went to my GP who promptly referred me to a neurologist, as he said that he did not have much knowledge about, yes you've guessed it, RLS.

This behaviour continued until I went for my appointment. I told the neurologist about my concerns and she tried to reassure me that it may not be epilepsy.

As we were talking, I felt the sensation starting and told her it was starting. Sure enough, my legs started going 20 to the dozen, and I tried to stop it. She told me to let my body move without interference and she also felt my legs after which she announced that it was indeed RLS. For once it was the first time I felt good about having a diagnosis.

Afterwards she prescribed some medication.

The medication only worked for a short period of time, but one night I noticed that my legs were not covered by the bedclothes AND, I was not experiencing any sensation or cycling.

The next night I left my legs uncovered and the same thing happed again. It didn't continue every night, and now only occurs when I don't take my Pramipexole at least 3-4 hours before going to bed with my legs uncovered. This I looked on line to see if there was anything that could help me keep my legs cold and sure enough I found a mattress topper that can be set either warm or cool/cold, bought one and have used it every night. The RLS only occurred if I don't take the medication at the right time and it is preceded by my legs getting warm.

I have tried going to bed taking my medication but with my legs uncovered and I don't get any RLS sessions. If I take my medication, but don't keep my legs cool they start kicking around.

This attention to temperature was a blessing. Unfortunetally the mattress topper I bought is no longer made. I was made by a firm called Climsom and the reason I liked it was because I could set the temperature and it would go all night.

Sorry about being so long-winded, I thought some people might appreciate how I got to where I am. I did try several alternatives e.g. a mat that Wicks away the heat, but this only worked for an hour.

Lindy14

[FLAME43]

not long winded, concise, and i thank you for sharing that, as with this terrible affliction, we will try whatever is workings for others in the hope it will work for us. Bless you

[Allyp69]

Thanks for sharing your experience with RLS. I have never been prescribed medication for my RLS and after reading about augmentation, side effects etc I will not take anything. If only we knew what caused it?? I know iron levels are mentioned here a lot and I've tried that...but as I don't suffer every evening I think it's far more complicated....I just know that tiredness, stress, alcohol, caffeine and sugary drinks make mine worse. Copper bracelets, Valerian herbal tablets and listening to music help...but don't cure it.

[WendyBea in reply to Allyp69]

Hi All of the things you mention certainly do aggravate RLS, and a "quieter" lifestyle is certainly advisable, if it is possible, as even "good" stress (excitement) can be an issue. As for not taking medications, if that works for you, stick with it. Those of us who have multiple episodes of RLS per day, usually couldn't carry on without some form of medication on top of lifestyle changes. I'm certainly grateful to be retired. I couldn't manage full-time work because of severe lack of sleep and some side-effects of medication. (In fact, I just dozed off momentarily in the middle of typing this!)

[Alex2308]

Cold is a good remedy. I sleep with AC on 365 days a year.