In need of your help!: Hi, i'm new to... - Restless Legs Syn...

Restless Legs Syndrome

21,389 members15,058 posts

In need of your help!

SweetRuby profile image
12 Replies

Hi, i'm new to this forum, and so pleased to read that some people are experiencing exactly the same as me. I have spent what seems forever googling for self help techniques on relieving my symptoms, all of which have failed. My most result one is Magnesium Oil (found on the Holland and Barrett website), its been said that the muscles lack in it, hence the restlessness.. so I shall keep you posted on that.

However, I am at a loss until finding a more indefinite option; I am currently not medicated for it, though I am beginning to get to the end of my tether. I use Codeine Phosphate to sleep, and I'm pretty sure I am now reliant on those, which is not a good thing. I've done my research and there are some medications out there available, so I am going to visit my GP today all being well, but are there any recommendations? As I sit here I can feel it in my arms, legs, should, feet -- its the most crippling condition, and I have had it for over 5 years now.

Written by
SweetRuby profile image
SweetRuby
To view profiles and participate in discussions please or .
Read more about...
12 Replies
beady3 profile image
beady3

Morning sweet ruby sorry you are having probs with rls yes it's a B with a capital,well I have had rls for 47 yrs and yes it stops you doing so much,I have had lots of medication and theoneI find the best is Tramodol you will not get augmentation with that ,I use magnesium salts in the bath ,this site is great and all wiling to help each other, lets know how you get on at the docs but be prepaired as they do not know much about rls X

blueeyes5262 profile image
blueeyes5262

Tramodol..works for me

Mopsy1950 profile image
Mopsy1950

Hi sweetRuby, I think most of us have been down the magnesium track ,that's a long time to put up with those problems ,that's the best thing you can do get to your doctor it might be completely different to RLS hopefully something easier to fix good luck lets know how you get on

RLS is not anything to do with our muscles, RLS is neurological. So, it not our muscles that makes us restless.

All medications we become dependant on, codeine is a medication and some people find they get relief from taking it.

I will not recommend a medication as we all react differently to meds. So, what might work for me might not work for you, Its all trial and error, and you might find you will be trying a few meds before one suits you.

Two websites to look at which gives meds available for RLS. rls-uk.org and rlshelp.org

Lindy14 profile image
Lindy14

Hi Sweet Ruby,

I'm sorry you're having these problems like the rest of us. Like Elisse said, we all react differently to the medications available, and as the neurologist i've seen said, it is all a matter of trial and error as to what works for you.

Something that does give some relief in addition to medication for me is a mat that I put on the bed and switch on when I go to bed to keep my thighs cool. This means the difference between getting through the night without having to take any extra medication, or dosing myself up and waking up feeling like a zombie. The one I use is electrically operated so it works all night, where I found the one's that operate without electricity lose the cooling effect in just a couple of hours. Then it's back to square one. I found the one I use online and if I am going anywhere I take it with me.

Let us know how you get on at the doctors and DON'T take any nonsense! My GP said that she didn't know much about RLS and said all she could offer were Anti-Parkinson medicines. She sent me away telling me to find my own solutions. When I had tried all I could I went back and luckily she had retired. The GP I saw admitted he didn't know much about RLS and promptly referred me to the neurologist. The neurologist was helpful and I felt she was empathic regarding the effects of this condition on my life.

If your GP acts like the first one I saw, you can explain that you've already been down the self-help road.

Lindy14

in reply to Lindy14

What is name of the electrically operated mat, it sounds like it might be what I am looking for because I over heat and discard the bedclothes

bedith6 profile image
bedith6

Hello Sweet Ruby. I have suffered with RLS for 60 yrs and I think I've tried every medication out there. I did find the Neupro patches very good until I developed a nasty skin rash through using them. Now I rely on Tramadol and Temazapam for sleeping. I also use an electric hand massager (quite a hefty expensive one) and I find this really soothes my legs. Hope any of this helps. Good Luck with your G.P.

SweetRuby profile image
SweetRuby

Thank you so much for your responses so far, I've unfortunately not been able to get into the GP today, but I have one Tuesday. I have been trying to put up with and try home therapies without taking more medication, hence the length of time unmedicated, however it's effecting my quality of life now, and I need something to be sorted. I too am reluctant to go on Medication treated for Parkinson's, but I feel only the correct consultant will be able to make that decision. I don't even know if there are any tests available they could do?

Pippins2 profile image
Pippins2 in reply to SweetRuby

There are alternative medications to the Parkinsonism meds (known as the Dopamine Agonists or DAs) In fact many of the experts are now moving away from them as a first line treatment preferring the painkillers or anticonvulsant. There is no test for RLS but there's a diagnostic criteria.The doctor goes by how you describe your symptoms. The absolute must have is the URGE to move,an urge that cannot be ignored. The only useful blood test is Ferrartin ron which needs to be over 50 preferably 70 which is much higher than for a non sufferer.Make sure you are not taking any meds which are known to make RLS worse,they include antidepressants, antihistamines ,anti sickness and over the counter sleep aids .

Beckonwood profile image
Beckonwood

I just finished reading others responses to Sweet Ruby, I have to say I have tried several different kind of medications over the past fifty years. I recently tried Horizant and was on it for about two months and just stopped taking it the other day because right after taking it I found the creepy sensations in my hands and arms which lasted for about an hour. Last night I didn't take it and had no symptoms at all. I do take Percocet 5mg and cut it in half. I take a half around 7:30 then another half around 9:30 and if needed another half around 10:00 or so. Usually that will work. I was on Mirapex prior to the Horizant was on the Mirapex for about ten or twelve years. it worked good for some time, but then found I was taking more pills not knowing about the augmentation until I got on this website. It was hell getting off but am glad I did. Its strange a cure or something that really works isn't developed or found yet, sure would be nice. So it looks like we all must keep on plodding on. I used to be nervous and jerky now I am no longer nervous.

cumoneileen profile image
cumoneileen

I have tried magnesium on it's own it doesn't work for me, although I take it as a supplement. If you have RLS you will have to see a GP. and get medication.

I have had RLS for 50 years it got worse as I got older. I take ropinirole and a codine tablet to get some sleep. Good luck. Keep trying until you find something that works for you. By the way it's a neurological problem.

HI SweetRuby, I was sold some magnesium oil spray by a health food shop, not Holland & Barretts this time but I do go there too. I'm undecided about it, it can make my legs sore from massaging it in, I believe it's more the massage that helps the actual symptoms and I prefer just using body lotion for that and getting really deep into the muscles that are knotted up. I use the spray tho cos I keep hoping that something will actually stop this thing happening in the first place, but so far I don't think it's any less of a nuisance. I'm hoping to find other suggestions on this site of things I can try. My GP already has enough to do but I will ask for help if nothing else works. How are you finding the magnesium oil??

You may also like...

your help needed again.

I need your help Buprenorphine & opioids.

Desperate need for help with RLS

tried Mirapex and added Gabapentin. The Mirapex had some terrible side effects for me and the...

Help desperately needed !

night had been the norm until lately but now for some reason its worsened. I have been taking...

Stopped prameprexole and need help

bit so she can try to sleep. What we wanted was some advise as to wether to go back on them and...