Restless legs syndrome: Has anybody suffered with... - PMRGCAuk

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Restless legs syndrome

geater16393 profile image
12 Replies

Has anybody suffered with restless legs syndrome along with PMR?

If so how do you deal with it?

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geater16393 profile image
geater16393
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12 Replies
lesley2015 profile image
lesley2015

Yep all the time, it irritates me and my husband! I haven't found anyway to stop it only reminding myself when I do it, to Stop. But then find I am again moving them.

Perhaps someone else has some ideas .......

piglette profile image
piglette

I don't think there is much you can do for restless leg syndrome, PMR or no PMR. A friend goes potty over hers and seems to have tried everything.

magmapearl3 profile image
magmapearl3

I've suffered from Restless Legs Syndrome for many years, long before my diagnosis this year of PMR. Apart from walking around barefoot on a cold floor for a few minutes there's nothing much that's worked for me . It usually strikes in the evening and impacts on my ability to fall asleep. Very frustrating and my sympathies to you as it really doesn't help with relaxation.

1Purplecrow profile image
1Purplecrow

I've struggled with the pain of RLS, restless leg syndrome, since my teen years. I discovered that caffeine and diuretics will cause my sleep to be disrupted about midnight, and for the next 2 hours, I have the irresistible urge to twitch my legs.

After trying medications and sleeping pills, I decided that the only solution it to avoid all caffeine after my morning cuppa. Also, to avoid diuretics unless absolutely necessary to use. After years, I have decided this restless leg business is another type of pain, highly disruptive to restful sleep. Finally identifying this disorder as pain has allowed me to treat it as such.

I get out of bed, make a cup of warm sweet milk, take a Tylenol or aspirin, and wait 45 minutes. This method usually results in return to restful sleep. I have also used warm bath soaks before bed and pressure stockings in bed at times.

Good luck with your search for relief. This is really a miserable disorder, and It's easy to pooh pooh its impact in the light of day.

I haven't found PMR to have any impact on RLS. Even prednisone doesn't help it!

elainecleary profile image
elainecleary

I already had restless leg syndrome and was taking amitriptyline 15mg (alternatively 10mg one night, 20mg the next). When I was diagnosed with PMR, my GP put this up to 25mg. I think I've read that amitriptyline is given with preds to help with sleeping, not that this has worked! Anyway my restless legs seem to be a thing of the past. Hope this is helpful.

polkadotcom profile image
polkadotcom

I also found that amitriptyline helped with mine, as did magnesium. I haven't had it for ages now, seems to be a thing of the past.

Celtic profile image
CelticPMRGCAuk volunteer

I experienced a very brief bout of RLS during my PMR/GCA/steroid days but nothing like as bad as I experienced during my menopause years, so at the time I put it down to some sort of hormone disruption. Anaemia may also cause the symptoms. It can be a very debilitating problem especially when it keeps you awake at night, so I really do sympathise. It is said that avoiding caffeine can help some people, not just the caffeine in coffee but also in chocolate, tea etc. It might be helpful to read the following link from the very reliable Mayo Clinic:

mayoclinic.org/diseases-con...

geater16393 profile image
geater16393 in reply to Celtic

Thanks everyone for your replies about RLS it has been really helpful

meth09 profile image
meth09

I too suffered from RLS but eventually got it under control. See this Johns Hopkins research article for info on four potential solutions. In my case, iron supplementation was the answer. hopkinsmedicine.org/neurolo...

I have had this since being a child , you just have to put up with it . I s there any one else who's parent used to call it growing pains . I still have it at 64 the only way I am growing now it outwards !

30048 profile image
30048

I don't know whether to post this as it is adding another pill to what you ate already taking. However......since my bout with shingles , I have developed nerve pain that continues even after the shingles are in remission. It occurs mostly at night . I was given Gabapenten to take at nighttime. It is also recommended for restless leg. I take 100 milligrams at night as it makes you sleepy.

Please excuse if my words are not correct. I can no longer see what I am writing. My eyes are so bad and I cannot increase the font. Since the upgrades on my Apple products things are dimmer....I ha be to get to the Genius Bar....hard to forget when you can't drive.

Apaininthe profile image
Apaininthe

Oh crikey Yes ! As soon as I sit down it comes - I am at work on my feet all day from 7 am - 6 pm . The only thing that actually gets rid of it for me is to sleep ! Fortunately because I am up at just after 5 each morning my ability to sleep in the armchair is exceptional lol

Strangely though I only get RLS if I put my feet up ( reclining chair ! )

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