cramp?

[walkinmyshoes]

Hi, does anyone get bad cramps in their lower leg muscles with RLS.

Happens when I stretch my legs out in bed mainly. Is it part of RLS or something else?

Had blood tests on Tuesday for ferritin and serum iron, not got the ressults yet.

[Doversoul]

Yep - and it's either in the thigh, calf, foot or toes - I drink Schweppes Tonic Water - daily, especially in the evening and the Quinneen helps to reduce the episodes, but is unable to prevent cramp occuring. I have taken Quineen - prescribed - in the 70 & 80's but as I have a gout condition - I take Allopurinol, and therefore Quineen isn't available to me as the two tabs shouldn't be taken together.

[walkinmyshoes]

Thanks, I'll get some tonic water, quite like it anyway. Had bad cramp 2 days ago and the calf muscle is still really sore.

[beardedtwitch]

Yes but since drinking 1 glass of Shweppes Tonic Water daily I get very few, after checking various tonic waters I found that Shweppes has the most quinine in it so do use this make. Seeing the doc on Monday as my ferritin result was low and hope to have some plan to raise it.

[walkinmyshoes in reply to beardedtwitch]

hi, how low was your feritin level please, let me know what the doc suggests/ prescribes for it

[Hidden]

I never get the cramping but I am one of many unique sufferers of RLS.

I have added crystal light to the Shweppes Tonic Water...Man's alive,

I do not know how anyone drinks that stuff straight up. It reminds me

of baking soda in water...ugh.. haha.

[Hidden]

I suffered agonising cramps in my calf mainly right side, but this stopped once I started Pramipexole, My calf would be sore for days after.

I am on a high dose of Pramipexole, have tried to cut down , no good, I am taking 5 x 0.088 tabs per day.

I have also been diagnosed with folic acid anaemia, and take 5mg of folic acid prescribed by the doctor.

I started RLS in April very suddenly and severely after taking Amytriptilene, not sure if that is the reason.

I also have to take Tramadol, or I get break through symptoms.

I also use Magnesium oil for aching legs, and it really helps.

I am now being tested for RA.

I hope this helps, Cazx

[thedragon]

yep...I get cramp a lot from just trying to stretch out the rls. I just walk about till it eases

[Hidden]

@ cazbaz, lots of us have good results with tramadol, i wish i could take it, but it literal makes me so ill, im also taking a course of iron at the moment, third one so far, but my ferritin levels just wont go up, and the iron doesnt seen to help either, I took amytriptilene a few years ago, with horrid results, my rls went crazy, never again will i take it. im on a high dose of mirapexin at the moment and im also trying to cut it down, but having a really bad time in the process, i hope you have better luck than me, the only time i really get cramp is first thing in the morning, some mornings it wakes me and i have to jump out of bed and rub my calfs, what a way to wake upi !!

[Hidden]

Lucky for me, i dont get cramp. I know many people take magnesium for cramp.

Cazbaz, i know that after taking amytriptilene some people say thats when their RLS started.

When trying to cut down on the dopamine agonists, you will go through a bad time with the RLS. The dopamine agonists are one of the hardest med. to cut down or stop even when weaning off them, as soon as your body has a drop from the dopamine, your RLS will let you know about it...

[walkinmyshoes]

Hi again, just had phone call from doc's, there is a prescription for iron tablets for me but doc also wants to see me this afternoon.

Been telling them for about a year there was something wrong with my legs!!!!!!

[SusieL]

I get cramp easily but only when i stretch and point my toes. Someone told me once that if you stretch from your HEEL and keep your foot at right angles to your leg (as though you are standing) you wont get cramp...It works well for me although I do forget sometimes when half asleep. Its worth giving it a try though.

[thedragon]

We used to get the rugby boys to bite their top lip....there is supposed to be a pressure point to ease cramp...I always forget to try it myself though!

[walkinmyshoes]

Just back from Doc's. He's sending me to a neurologist and he's given me ferrous fumarate 210mg twice day and quine sulphate 200mg, one a night.

Ferritin level was 13 which he said was ok, on the low side but ok.

Anyone know why he's sending me to a neurologist?

[Hidden in reply to walkinmyshoes]

I guess he is sending you to see a neurologist if he doesnt know how to treat RLS. Did you not ask him...?

Ferritin levels for RLSers should read 75 or above, 13 is ok for anyone who hasnt got RLS.

[walkinmyshoes in reply to Hidden]

He( Doc) said he doesn't want to prescribe any drugs, anything other than iron and quine which are not specific, until he knows what is causing the RLS.

I have no idea what a neurologist has to do with RLS.

[nightdancer in reply to walkinmyshoes]

well, your ferritin is low, VERY low, so that could be the cause of your rLS. n that case, takinng iron supplements by mouth can take months to get your feritin level up. hey consider 12-21 "normal", but as Elisse said, that is low for a person for an RLSer. extremely LOW. and, cramps are not part of RLS at all. Lots of people call leg cramps RLS, le cramps are muscular and RLS is neurological. magnesium is better and safer in most cases than Quinine. In the US, they will not use it for anything except malaria, because of herat issues and quite severe heart damage caused by Quinine. And, that is what the FDA (Food and Drug Adminstration in US) has mandated, and suggested worldwide. magnesium has no such issues, and maybe you should ask your doc about that , just as a suggestion. (hint-you will know if you taken too much magnesium of you end up in the bathroom all day! It is a great natural laxative LOL) So, just throwing ideas at you, but I can say for SURE that cramps are not part of RLS.

[beardedtwitch]

I have just found a Clinical Review in the British Medical Journal published 24th May 2012 titled 'RESTLESS LEG SYNDROM' and the fourth summary point states 'Screen all affected patients for iron store status; consider iron supplementation if serum ferritin is below112pmol/L. (50ugL) so I am showing my Doc this on Monday. Look on bmj.com/content/344/bmj.e3056

[nightdancer in reply to beardedtwitch]

THANK YOU!!!

[Hidden]

iteresting read, thats for putting it on beardedwitch

[Hidden]

thanks even arghh, must check my spelling more...

[beardedtwitch]

Hi wakinmyshoes and as promised I report on what my Doctor said. My ferritin level is 30 which is classed on the low side so I showed him the BMJ publication about levels and he was very interested in it and has put me on Iron tablets with a review in 3 months to see if I am above 50. He had 2 student doctors with him and so we had a discussion about RLS OF COURSE WITH THE PROVISO THAT CARE MUST BE TAKEN WITH INFORMATION FROM THE INTERNET. It was a stroke of luck that they were there as soon they will start in general practice with a much better understanding of our problem and maybe spread the word!

[walkinmyshoes in reply to beardedtwitch]

Good that you could have a decent discussion with professionals about it.

My doc said 13 was ok!!!!!!( ferritin level)

Not taking the quinine he prescribed after reading the info pack, just drinking tonic water. Seems to be helping a bit although still sleeping poorly, up at 3.30am again last night till 6am.

Take care

[Hidden in reply to walkinmyshoes]

i think now they reccomend levels to be 70 for rls patients

[Hidden in reply to beardedtwitch]

hope the iron does help you , it didnt help me

[Hidden in reply to beardedtwitch]

I hope the iron helps, but do be aware that it doesnt work for everyone, it in fact helps very few people. The level used to be 50, but has recently changed to 75. Take Vit.C with the iron, it helps to absorb the iron..

Great that you and your doctor with the two students present had a discussion on RLS. Also as long as the website's you look at for info are good websites then you should be ok when doing research... The ones to stay away from are the ones which claim they have the "cure" for RLS. those just want you to pay money for something which as we know there isnt a "cure" for RLS. It just lines their pockets with your money, or our money if we buy whatever they are selling....

Again good luck with the iron, it can take many months for the ferritin level to move up.....if at all. So keep us informed of your progress....

[beardedtwitch]

Thanks for the good wishes and it does seem that recommended ferritin levels are all over the place: still a bit of a black art!

[stevemyring]

Yes I defo get really bad cramps in lower legs and feet, when I stretch in bed is worse

[beardedtwitch]

Thanks Elisse and I will take vitamin C as you suggest. Reading the Infomation leaflet with the iron tablets it seems that if you have food anywhere near taking iron then the absorbtion rate is not so good and when it's 3 tablets spread over a day that's a problem!

[glamourcat]

I am a middle aged woman and have had RLS since I was a teenager. I have always woken up with an ache in my calf, every single day. There is a constant knot in my calf and when worked and massaged it actually goes into a spasm. I have been diagnosed with RLS by my doctor who said to take paracetamol for the pain and aches. But I can finally sleep at night now due to taking Clonmazepam which helps you to sleep and stops you wanting to constantly move your legs. But I really wish I could get rid of the constant ache in my calf. Has anyone else experienced this problem?

[nightdancer]

I need to jump in here. RLS is considered a neurological problem with a classification of sleep related movement disorder. That is why your doctor would send you to a neurologist. If your doctor says something or sends you to another doctor or specialist and you don't understand why, you need to at least know WHY before you leave the office? Yes? Ask questions all the time. As far as finding info on the internet, yes, we all have to be careful. There are all kinds of claims for cures for RLS, which need to be avoided at all costs. There is no cure. I NEED to add that cramps, or charlie horse muscle contactions where your muscles actually tighten up are not related to RLS. You also have to be careful of info you get from some doctors, since some will actually not admit that they do not know about treating RLS. We have witnessed that many times on this site alone. At least you read the leaflet with the Quinine. It has been pulled from the market in the US; the FDA has only approved that for use in malaria ONLY. IT has several bad side effects like heart valve damage that was proven on a big study that lasted over 10 yrs and they followed patients and the consequences of taking too much Quinine.

Please do some reading up on RLS. Tonic water may help cramps, but it will not help RLS Magnesium can actually help both. Knowledge is power, and makes you feel like you are more in control. It works for me.

[Jonkil]

Strange thing is that when I was getting a bad episode I had to try and give myself cramp in my legs which was very painful needless to say it did not work but I had to try it lol