first post here

[mylegsnme]

My 1st post - legs bad today - probably because I am very tired Looking to chat with others who understand and may be able to help

[Neil46]

First of all welcome to the site. You will indeed find fellow sufferers who have experience and knowledge and who can help you.

You say you have bad legs. Can you expand on this please? Have you been diagnosed with Restless Legs Syndrome? Have you seen your doctor? And.. are you in UK or elsewhere?

There - that's a start!

Neil

[mylegsnme in reply to Neil46]

Thanks Neil yes I have RLS (had it about 33 years) Am in UK -taking pramiprexole and Gabapentin but when bad like tonight take codeine as well Would be interested to know ..if anyone tried botox for RLS ??

[Madlegs1 in reply to mylegsnme]

Hi- what is your dose of those meds and how long have you been on them.

Keeping a food diary may pinpoint any triggers that can give rise to rls.

Two sites worth looking at are

rls-uk.org

rlshelp.org

You will pick up a lot of information from them - and reading back on this one.

Cheers.

[mylegsnme in reply to Madlegs1]

Thanks.............. I joined rls-uk.org a few months ago I'm not sure the strength of pramiprexole but take 2 of them Gabapentin - 600 mg codeine 15-30 mg

[Hidden in reply to mylegsnme]

Please look on the Pramipexole packaging and let us know the strength.

[Hidden in reply to mylegsnme]

Interesting question. Have no answer but worth researching. burmag

[Hidden]

Welcome! You've come to the right place.

Can you give us some more info. regarding your situation? The more info. we have the better equipped we will be to help.

[Hidden]

Hi mylegsnme. You've come to the right place.. I'm fairly new and get as much help here as I do from doctors plus often get tips about pain relief that help and that the doctors don't know. Take care, burmag

[mylegsnme in reply to Hidden]

Thanks what do you do for pain relief?

[Hidden in reply to mylegsnme]

Hi mylegsnme, To answer your ? re pain meds, nothing except OTC Aleve (Naprosyn) right now..I'm working on finding one I can take-have med probs that rule many pain meds out for me. I do things like put on compression stockings when I wake up with pain, get up, walk around, sometimes get in a hot shower, use magnesium spray and watch my diet with foods like sugar, white flour. Usually, I wake up in the early morning hours, end up staying up several hours, sometimes doing housework, til it's light outside, my legs feel better, and I'm very sleepy. Then I go back to bed to try to catch a few hours sleep. I have it better than many of you because I'm retired, and live alone so my schedule is my own. I also take Xanax for the anxiety I get when I have pain. I'm also trying to raise my ferritin level. This is all new to me but I do feel that there can be more that one cause which is why I'm building up what I call my 'bag of tricks' of things to do and hope one of them works on a given day. But I'm planning to talk with my docs (have several visits coming up) because I need something for pain. I tried pramixepole and had an allergic reaction. Not anxious to get on anything that could poss cause augmentation. I wish I had a better answer that would benefit you also, but right now still searching. Will share anything I learn that might be helpful. Take care, burmag (Burma)

[Hidden in reply to Hidden]

mylegsnme. Wanted to add something to my above post. When I wake up with rls pain and know I have to get up, before I do I put on my knee high compression stockings(not new, a little stretched out and less constricting than a brand new pair-just buy over the counter, no need to spend a fortune. )Anyway the pressure from the stockings lessens my pain when I get up and start moving around. I keep them on my nightstand so I can put them on in the dark before standing up. Wierd, but a big help for me. After I've been up for a while I can take them off and my legs continue to feel better. Take care, burmag

[Hidden]

Hi and welcome, you've hit the jackpot getting here, lots of info, help and support.

[Nj_s]

My RLS is severe and have had it all my life. Heredity. Any time I get tired, my body relaxes, or if I have been really stressed it is literally unbearable. Mine has also moved into my arms. I get it during the day and have to get up and walk; I walk my horse around her pen 20 min or so and that helps for about an hour. Laying in a tub of hot water helps temperarily. I have taken up to 6mg of Requip (Ropinerole) before and am working with 4mg. now, along with 300mg of Neurotin (Gabapentin) 3x day. The meds control it pretty well but it takes a while to get used to the Gabapentin. I want to try the laser surgery as I have sciatica issues and also have neuropathy. This is a living nightmare and I WISH DOCTORS COULD, OR WOULD, do SOMETHING to help us rather than just halfway treat the symptoms with more and more serious meds. These two meds are the only ones that help mine. There are others you can try but I always had to come back to the Requip. Quality of life is pretty horrible with this condition. If you learn anything new, I would greatly appreciate it if you would let me know!

P.S. I'm going to add this because it IS a solution that helps mine along with my meds. I purchased a small pipe that holds two puffs, or "hits" of marijuana. It takes 2 puffs and my legs ease up.

[Hidden in reply to Nj_s]

I wonder are you augmenting? You are on too high of a dose of Ropinerole and that could be making things worse:

rls-uk.org/augmentation-reb...

+1 on the cannabis very effective and I like to use it when I can get it works for the RLS, pain and insomnia great stuff.