Exhausted and restless legs syndrome.

[angel-delight]

Hi, I posted yesterday about how exhausted I was feeling but forgot to mention that every evening about 8:30pm I start with the restless legs syndrome. My mum use to have this and always had to go to bed. I try putting my legs up but I just can't keep them still. I was wondering if I am lacking in salt or if it is just bad circulation? I do have a problem swollen legs but the swelling has come down a lot, especially first thing in the morning.

Could this be another thing that is related to RA or Diabetes? I was told by Rhumey and my GP that the swelling in my legs was caused by the steroids and also now that I have retired I am not as active.

I would appreciate hearing from anyone who has the same, it is driving me crazy every night..

Take care,

Sue xx

[Smiler53]

Hi Angle-delight,

I have suffered with chronic restless leg syndrome for more years than I'd like to remember. To such an extent that it affects the rest of my body and at one point very and it at it worst hardly any sleep for 3 months. I would walk round the house most of the night as there was no way I could stay still. My arms and legs would jerk out with such force and sometimes my whole body would jump.

I went to see two neurologists. The first was a horrible man in whom I had no faith at all, so was sent up to UCL in London when I had a fantastic chap. I had lots of tests and MRI 's muscle and nerve tests. I was scared that I had motor neurone, Parkinson's or MS. Thankfully these were ruled out and confirmed that it was chronic restless sydrome. My doctor had already started me on Ropinarol (which is used for Parkinson's Diesase) 1 mg at night. Over time I had to have this increased and now on the top limit I'm allowed. I held on to the last minute to go on top dose which is 4 mg. I have worked it out now to suit my needs 1mg at 11 am, 1mg at 3pm and 2 mg around 8.30 - 9.00 pm. I still get the odd twitch when at rest in my in leg, arm, head but like it was before and you will know if you have forgotten to take your mess as you will feel your legs begin to crawl like you are covered in ants etc. i would forgo any other tablets but them - that's how bad the condition is for me. I would rather be in pain than have the RLS symptoms.

There is another drug (can't remember name at mo) similar to Ropinarol that can be used. Which if anything changes in my condition I would consider asking for, because without medication my life wouldn't be liveable. For anyone who doesn't have it, they would have know idea how this makes you feel. At times it can be painful if you can't get up and walk about. As it sometimes makes your entire legs up screw up like cramp.

Hope this helps. Good luck.

Barb

Ps don't let them fob you off with nothing!

[Smiler53 in reply to Smiler53]

Opps couple of typos 9th line 2nd para s/b But nothing like before. Line 11 same para s/b meds not mess. Sorry should have proof read b4 hitting send. X

[Hidden]

Here are a few tips for restless legs angel.

webmd.boots.com/sleep-disor...

I used to have this, and was told lack of iron could be the cause. My iron count is excellent now, and I no longer have RSL. Worth a try upping your folic acid, or maybe ferrous sulphate tablets, but check with your GP first. I now take a vitamin B complex which contains folic, and all the other 'B' vits, including B12.

[angel-delight in reply to Hidden]

Hi, thank you for your reply. I am not taking folic acid I have read that vitamin B12 is good for RSL and that a lack of iron could be the cause. I will check with my GP when I get back. Thanks again.

Sue

[Livingston]

You could try asking your GP to check your ferritin level - it's a measure of the amount of iron your body has stored. Low ferritin can cause RLS.

[angel-delight in reply to Livingston]

Thank you Livingston, I will do when I get back home.

Sue

[beeckey]

Hi Angel i also have RLS i am on primapexel wrong spelling.I started on a lower dose but now i am on the highest i could not sleep with out them it is scary if they stopped working.My iron level is fine

[angel-delight in reply to beeckey]

Hi Beecky, I get the restless leg syndrome before I go to bed, about 8:30pm and my legs feel better once I am in bed. I wish I could stay up longer at night with my family and watch a movie or a program with them but I know I won't get any relief until I am in bed. I will have to check with my GP when I get back home.

Thanks for letting me know how you are and that your iron test is OK.

Take care, Sue x

[burtonbradstock]

Hello the restless legs issue is normally a signal to say that my body is sick and tired of hurting and will not let me rest. I try and think calm thoughts but really I'm going mad inside which results in me doing the night crawling and sometimes I only manage about a hours sleep when I nod off on the sofa. A very strange thing is RA but we must battle on !

[oldtimer]

My husband has had, not just restless legs, but it affects his whole body. Keeps him awake all night up and down, walking about, with the jerking of the muscles. makes him impossible to sleep with when he gets it.

The only thing he has found that works is, surprisingly, a hot water bottle. I can't understand it all, and it's not just a placebo effect as it has now worked for several years and not worn off. It's daft - but worth a try!!!

[Rubylane25]

I am not sure if what your Mom had was RLS. Most of us the last thing we can do is go to bed thus why some call it night walkers disease. Yours tho could possibly be tho. It is such a hard feeling to describe but I just used to call it jumpy legs until I found out about RLS. As soon as evening rolled around and I felt restful my legs would get this feeling where I had to get moving or try rubbing them or often sat in the tub for hours as water seemed to help. It is simply like you want to rest but they don't. I get it all over my body, back, arms and legs. The only way they diagnose it is to rule out everything else. Most are on some form of dopamine for it ie: Mirapex, requip, Sinnemet, etc. The pills do help immensley but for some the drugs cause a lot of negative side effects. I sure hope you don't have it. Best to visit a neurologist to find out. Good luck and high hopes that it isn't RLS.

[64notout]

Hi Sue, sorry to hear about your restless legs. I used to suffer with this until I started taking Vit. D due to low blood levels. It may not work for you but perhaps worth a try.

Best wishes, Pat

[angel-delight in reply to 64notout]

Thanks Pat, I am already taking vitamin D with calcium for several years, not sure it could be that.

I am starting to believe it is RA or meds in general causing the problem, I will check with my GP when I get back.

Sue