NOT ONLY LEGS. IS THERE A NAME FOR THIS BODY-WIDE HORRID DISORDER?

HELP ME.(BTW, I suffer from several disorders, including MS.)

MY RLS SYMPTOMS start in the legs in the evenings with the famous 'need to move'. A tingling and internal itching sensation as though my veins need scratching. I dash around the house, as nearly as MS allows me to, I sit down trying to read, knitting, viewing TV, do housework, eat,drink, (heaven help me!).

BUT..... this sensation spreads throughout my mind and body as the evening progresses. I can't do anythng to control ot. It will ease for a while then start up again and here am I once more, in the early hours, trying to get some sleep.

It's agony.

Any fellow sufferers out there?

Some nights I feel suicidal.

9 Replies

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  • hi, Chrisst-ma, we have all been there i think, i certainly have, its hard to cope with at times i know, but i find, if i think to myself," im going to control this, its not going to control me," its not much help i know, but dont let it win, A few i know have rls all over they call it "restless body syndrome" great name for it i think, hang in there Chrissy, i hope you get some rest x

    jean

  • I UNDERSTAND COMPLETELY CHRISSIE, I TO HAVE THOUGHT ABOUT HOW I CANT LIVE WITH THIS ANY LONGER....WHAT HAVE WE DONE TO DESERVE THIS UNBEARABLE ILLNESS...???? I CALL IT AN ILLNESS IN THE HOPE IT MAY BE CURED COMPLETELY....ONE DAY

    R

    EGARDS

    MAGGIE

  • It is officially a disease now, not a syndrome, so you are correct in calling it an illness. syndromes do not cured but diseases do, so we shall see....... and hope!

  • Hi, my mother has RLS and she is 91 years young! she is more upset because she has passed it on to me and I have passed it onto my son and none of us get any peace from it. Just keep taking whatever the doctor gives you and hope for the best and try to keep smiling.

  • It is a family thing with me, too. Both my sisters, both my nieces, and my oldest niece's chldren both have it at the ages of 5 and 8. neither of my parents showed symptoms, but one or the other mjust have been carrying the gene that was passed onto us. they are closer to a cure, since they discovered the gene mutation that matches RLS. So, there is some hope. I hope we see it in our lifetime! I know all the research being done out there, and it is limited, at best.

  • Yes, the famous Restless Body syndrome. You are not as alone as you think you are! :o) There are lots of us where the RLS travels around your body. It can start in one leg, move to both, then get into your arms, back, etc. Any doctor who knows about RLS knows that it affects more than the legs. I will say that the US RLS Foundation tried to change the name to WED-Willis Ekbon Disease-one reason, they thought it would be taken more seriously with that name. It only lends itself to having to explain that Willis was a doctor in the 17th century who first wrote about RLD, although it was not called RLS back then. It ws not called anything escept "torture of the lombs" and he observed RLS in arms and the rest of the body as well. Ekbom is for the Swedish doctor who first named it RLS in the 40's. It is easier to say I have RLS which is a neurological disorder that keeps me from sleeping. You said you have MS. MS patients are 11 times more likely to develop RLS, but RLSer's do not develop MS as a result of RLS. You did not say of you are any meds for it? Lots of meds can aggravate RLS. rlshelp.org I hand out that web site EVERY day, because it has the best RLS info and is kept very updated by the specialist who runs it. Go to the treatment page read about the meds that are used, plus the list of "foods and Drugs to avoid on the same page. also, you can click on patient letters, and there are 15 yrs of emails that Dr. Buchfuhrer has answered for RLSer's all these years. If you are not on meds for RLS, it is time. I have been at that suicidal point, as well as many here and elsewhere. that is when you KNOW you have tov get more help and reach out for support, which is so key to survival of this horrible affliction we SUFFER from.

    So, remember, the more you do to help yourself right now, the better off you are, and we are here every day. :o) Lots of us here have tried all the meds on list and off of it that may help, so we have a lot of experience. I have been in support groups for 15 yrs myself, and manage several, so I know you are not alone, even though it feels that way, when you are going nuts at 2 a.m. and the rest of the house is sleeping.

    My name is Donna. Anything you need.............

  • Thank you---all of you---who have been so supportive. I'm starting to apply some of the suggestions left in posts left on this site and will report back. Last night i tried too many at once, so I need to try a more scientific approach before knowing whether any ideas work FOR ME.

    I cant say how grateful I am to have been made so welcome. Makes all things possible.

    With love

  • Interesting that you mention the itching veins Chrissy-ma; my own description was of having my veins full of Alka-seltzer. For me, a relatively recent sufferer, the suspicion has always been that it was related to drugs(Tamsulosin in particular) taken for prostate problems. Shortly after taking Ropinorole, I get the same side effects as Tamsulosin, nasal congestion, headaches and a wobbley heartbeat. As for changing the name from RLS, fine with me, just don't suggest RBS, that's a differant kind of pain.

  • Try the stockings

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