Newly diagnosed - need your ideas!

[UmmB]

Delighted this forum exists. I want to try any ideas you have that have worked for you. Please help. Have a great doctor who supports self-help first.

[Pippins2]

Hi if you look through old posts you will find many examples of self help.The first thing you need to do is to make sure you are not taking any med for other conditions which are known to make RLS much worse examples are antidepressants, antihistamines, anti sickness and over the counter sleep aids Secondly get your Ferrari iron levels checked out ,needs to be at least 50 preferably 70 which is much higher than what a doctor considers normal.Next do you have a family history of RLS.? If so you most likely have Primary RLS which means you have the faulty genes and your RLS will be progressive and unfortunately usually means you will need med for it at some point

[blokie]

After tying various pills and potions what works for me is:-

1x 50mg Tramadol twice a day. One am and one pm.

1x120mg Ginkgo Biloba in morning.

1x Pramipexole before bedtime or mid evening.

Have not had any bad RLS for 6 weeks or disturb nights.

[Pippins2 in reply to blokie]

Glad you are doing well Bloke, that's what I like to hear!

[Hidden]

Magnesium oil seems to help a lot of people, you might try searching for threads on that. I just got an email from my brother who has started drinking 1/2 cup of coconut water (not milk) before bed. Potassium?? He says it helps him. A thread was just posted about going to bed with rather loud but calming music to distract from the jerking which sounds like an interesting way to deal with it. Basic steps- eliminate any nerve stimulants for sure- caffeine, OTC cold meds, anything that will make you jumpy, then like Pippins2 says, check any meds you might be taking for side effects. Cholesterol lowering drugs in particular are notorious for this.

Personally, mine is triggered by lower back issues, so an inversion table and lower back exercises are what fix it for me.

[nightdancer]

There are soooo many tings. My first question to you are you on any meds for ANYTHING? even over the counter meds.........MAny can make RLS worse or cause it.

[alison61-jumpylegs]

Hi UmmB, I'm new here but I've had this for about 15 years, plus I have other problems, and so far I just mentioned it to my GP but didn't ask for any help, from what I'd read till now I didn't think there was any treatment. I've been taking Valerian cos I read online about a US medication that had Valerian as its main constituent, it helps I think but as I say I didn't know about anything else. I'm also already taking a low dose of Pregabalin for something else. What seems to work best at relieving it is to massage the knotted up muscles really hard, I just use body lotion then it doesn't mess up my clothes or bedding, and so long as I work hard enough (having a partner would be a joy for this) it will stop, eventually. But I can get RLS waking me up in the morning, stopping me settling at night, and when I'm watching TV, so I spend a lot of time with my trousers down and the body lotion out! How about you??

[UmmB in reply to alison61-jumpylegs]

Thank you Alison. I really want to stay positive and try things, so your message was great. Try calf raises - do you know what these are? Exercises for calf muscles. I couldn't believe how much they helped. Going to the gym also seems to have an effect and my legs and feet are better on the days I work out. I will try the Valerian - a nice herb! i tried it before for someone else and really liked it. Good luck!!!!

[Hidden]

Hi I have 3 pramipexole tablets about 5pm each day which generally works. I have cut out caffeine which definitely helps. When my legs cramp and get really painful from RLS I take 30-60mg codeine which my GP has prescribed for this. So having less restless evening and nights atm.

Does anybody have any suggestions for travel as this really triggers off my RLS?

[Mum27]

carol1948. I don,t like to speak to soon but i am on 2x0.18mg of pramipexole an d have had on problems for a few weeks now may it continue