The joys !!!!

Hi , I've had rls for about 25 years now and found the past 2 it had gone into my arms, has anyone found this has happened to them.. I do notice too that it is worse when it's my time of the month , whether this is cause I don't sleep so starts my rls off I don't know . Have any other females noticed this ??

Some nights I could seriously hack my legs off!!! So frustrating . Also it seems to be bad when the weather heats up, and summer is on it's way 😩

22 Replies

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  • Hi yes you do get it in your arm too .i have had rls since a child and tho dont get it much in my arms as much now .but just as bad as in the legs when you do get it.

  • I have noticed it's mainly when it's my time of month.. I have found I don't have as much ( with it been winter ) but do get an attack at least once a month and there's no stopping it 😒

  • I agree with Raffs to give the Gentle Iron a chance before the Neupro. The dopamine agonists and opiates are dead last in terms of RLS treatments. They are the final act of a desperate man. And a lot of people on here are desperate so if it comes to that so be it. The Gentle Iron is a type of iron called ferrous bisglycinate and it is best taken on an empty stomach right when your attack is in full swing. Each capsule is 25mg if you buy the Solgar brand (check out Amazon) and if you're like me and several others on here you will get relief within one hour of taking it. It should last the whole night but has to be repeated with each attack. Even if it doesn't provide immediate relief some people are helped by taking it every day and getting their iron stores way up there. You might even be able to switch out the iron with the Gabapentin if you take it every day. If you like the iron after a few times you must discuss with your doctor. Since your iron stores are "spot on" that tells me you do not have hemochromatosis or some other iron overload disorder. As long as you do not have an iron disease then taking one 25mg capsule of ferrous bisglycinate will not harm you but still discuss with your longer if you intend to try long term. There is almost as much iron in children's chewable vitamins so I feel that 25mg is a very benign dose. And we absorb at most about 40% of that iron, so 10mg. When people go for iron infusions they get 1000mg and every bit of it enters the bloodstream.

  • Thank you for your knowledge.. very helpful.. I am having a bad time at the mo cause this would be my time of the month ( I have a coil so don't bleed ) and it does get pretty intense..

    I try not to take the gabapentin every day unless it's this time ... it has helped a touch but not a cure as we all know .. I will look into the gentle iron

  • I've had it since childhood. In my legs only and with only mild pain until 20's pain started ramping up and the RLS is now in my torso and arms as well. I long for the days of just my legs. It can be so bad that I am flailing and jerking all over like some haphazard epileptic fit.

    Have you ruled out all exacerbating factors - diet, alcohol, drugs that make things worse. What about drug treatments - are you taking anything?

    It is bad in the legs and soul destroying when all over!

    Hope you get relief.

  • Hi , at the moment I'm taking gabapentin and if I feel an attack early enough these do help , but still do get a big attack at least once a month and nothing helps .. the programme last night just made me sad..but at least I'm not alone..what do you take ???

    Also like you I've had this as a child but nothing like I do now ..

  • I'm wondering if there is an Iron link here. If you get it worse at that time of the month I wonder if you have a heavy periods causing even more Iron loss.

    Take a look in the search function here for Gentle Iron and I think look for threads with the likes of Madlegs1 and Joolsg - damn I can't think of the others, (so offence at my omissions), any way those two reprobates will get you to the right threads on Iron.

    At the minute I take the Neupro patch 2 mg and Targinact 40/20mg and Gentle Iron. I avoid gluten and dairy, (although do slip), caffeine, sweeteners, processed foods and alcohol - still I spend many sleepless nights in agony! But that said I am better now than I had been and that is down to the info I gained here.

    Good luck.

  • My iron is spot on ( was one of the things my doctor 1st said .. I find if I do certain things I can in away keep on top of it , in a fashion

  • I would still check out the threads about gentle Iron, we can have adequate blood iron levels but not brain stores. Our stores deplete at night hence the onset or worsening of RLS, and the iron is needed so the brain can use the Dopamine.

  • Ohh I never knew this , thanks for the information I will look into it... just had my third night of no sleep 😴 not a good few days

  • My pleasure, I've learned so much here its great.

    That lack of sleep is a real bugger. I couldn't sleep last night even though my body was reasonable anyway felt exhausted and ready to sleep at 6am, got into bed and the RLS started!!! It's like it was waiting for me!

    Hope you get sleep soon.

  • This is me too.. if I drop straight off I find I'm ok , but woo betide I'm still awake 10 mins in... so frustrating .. well thank god it's Friday and lie in day ( if my legs allow me , cause sometimes it's still like it in a morning

  • Yes, I get it in the arms too. In fact I get it more one side than the other - left leg and left arm. Arm is not so bad but I am constantly aware of it at a low level.

  • I have had RLS all my life and noticed it in my arms and hands about two years ago.

    On occasional also get it surging through my torso and mostly at night.

    So sadly, yes you can get it in your arms.

  • 😒

  • I have it in legs and arms its a nightmare

  • I had it so bad a few years ago that it wasn't only in my legs and arms but also in my lower jaw. I just couldn't stop it from moving, I thank god that those days are in the distant past and I found the Neupro patch.

  • What's the neupro patch ??

  • Hi... The Neupro patch is a patch not unlike a nicotine patch that delivers Rotigotine, a parkinsons drug, over a period of 24 hours through the skin. It doesn't work for everyone but for me it was like a RLS switch was turned off in my body. I have been using the patch for nearly four years and I am almost "normal" with just the occasional break through RLS.

    Please note that not many GP's know of its existence.

  • I need to speak to my doctor about this , thanks

  • Yes, my legs, arms, and back. I am well passed my periods. I take two gabapentin 200 mg with tramadol three times a day.. This seems to work well for me. But if felled by forgetting to take my pills, I find walking helps until the pills start to work. RLS is a menace, I feel my body has been possessed by creepy crawleys, I totally dread the feeling. I WOULD RATHER HAVE A TOOTH PULLED !

  • I had this last night... ended up back down stairs until the tablet kicked in.. feel like a zombie now 😩 I could seriously chop my legs off sometimes

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