permanent????

[walkinmyshoes]

Is RLS permanent or not.? I look after hubby with vascular dementia and I cannot cope with no sleep. Had 3 hours last night, I'm wrecked.

[Hidden]

It is permanent, no cure for it. Just medication to control it... Are you taking any meds for it at the moment...?

[walkinmyshoes]

No it's only just started last few weeks, not been to Doc's about it yet but reading all the information on RSL it doesn't seem to be anything else.

Driving me nuts!!!!

[Hidden]

hi, not that it helps but you have my sympathy, a cure hasnt been found yet, so we have to deal with it the best we can, as Elisse said there are meds to control it, now you need to go see your doctor, and i hope hes helpfull for you, best wishes

[magggzzz]

Really feel for you. I look after my hubby too and you really need to be always at your best. Carers aren't allowed to get sick themselves. Since you said it's only just started I was wondering if you could be anaemic. That can bring on RLS where it's never been before. It would be worth going to your GP and asking for a blood count. Also ask them to check your ferritin. People with RLS need to keep their ferritin (iron storage compound) higher than normal.

Here's hoping you get a sympathetic Doc.

[Hidden]

As long as you meet the 4 criteria needed to say you have RLS. do you have it everynight..? Some people just have mild symptoms, where it keeps them awake some nights. As magggzzz has said, get your doctor to do a ferritin level test first. If it is below 75, then you MIGHT benefit from a course of iron pills. Does anyone else in your family suffer from RLS that you know of...? It can be inherited from a family member as in a parent. I tried the iron pills instructed by my doctor and it didnt help my RLS and my level never got to a reasonable place. It doesnt always mean having a low ferritin level and taking iron will make any difference. But its worth getting it done and if need be take iron to see if it helps with the symptoms.

[walkinmyshoes]

Hi. Not sure about a family connection as my parents died young 30+ years ago.

Had some bloods done 2 weeks ago for yearly MOT, nurse said a bit anaemic but Doc said OK. Another bad night last night. The link with RA is interesting as I have osteo arthritis in toes and it starts off there then legs feel very heavy before they 'kick off' big time.

Booked in Doc's wednesday, I'll get him to check the iron levels again.

thanks for all replies

[nightdancer]

Ask for a FERRITIN level, not an iron level. Ferritin shows how your ody stores iron, and that is what they need to know, not a regular iron serum test, FYI in case you did not know. :o) I hope this site is letting us posts again! testing!

[nightdancer in reply to nightdancer]

typos-shows how your BODY stores iron. :o)

[walkinmyshoes]

Hi, been to Doc's- he's never heard of ferritin level tests for RLS which he agrees it is. After he checked my recent blood test results he said my haemaglobin levels were low so he agreed to the ferritin test and iron test. Cannot do them for 2 weeks.

He prescribed Diazepam 2mg once a day at night.

Anyone any comments on Diazepam for RLS?

Thanks

[nightdancer in reply to walkinmyshoes]

That will help calm you, the diazepam. Why wait 2 wks to do a blood test, an how could he not have heard of a Ferritin test??? Your doctor does not know much about RLS at all is what that tells me,. I am glad you got Valium out of him at least. Caregivers, and I know what Ib am talking about, are on a schedule to burn themselves out. I took care of my father for years who was bipolar, had Parkinson's and Alzheimer's. Am now taking care of my Mom who just had triple bypass surgery at the age of 84 (her not me). lol I am 56. So, I DO know how you feel, RLS is progressive. BUT, "walkinmyshoes", You did say that the RLS started a few weeks ago only? have you ever had it before and it went quiet? usually if RLS starts "suddenly" like you described, it could be a new med you are on (not Diazepam), but have you tried any new over the counter new meds, like an allergy med or an over the counter sleep med? LOTS of them can have an ingredient in them that will drive your legs bonkers-Diphenhydamine (main ingredient in Benedryl) also, other prescriprion classes of meds can exacerbate RLS. rlshelp.org has the ultimate list of meds to be treated with, PLUS "Foods and Drugs to AVOID". That list is almost more important than drugs to treat RLS with. You are in the UK? I know people can buy codieine over the counter in the UK. have you tried that. Strong pain killers can help treat RLS. that is what I use for mine (I am in the USA, so need prescriptions) But,m the fact that you said it only started a few wks ago, tells me we MIGHT be able to help you figure something out. stay hopeful! :o) Ferritin and iron may nor be the answer, but it sure needs to be looked at, since some people with RLS are helped with iron. BUT< if your RLs just started, I doubt it is iron anyway, in my humble opinion, as that would be a more "gradual " start of RLS if it waslow Ferrtin causing it.

[walkinmyshoes in reply to nightdancer]

Doctor was not even aware that RLS gives you unpleasant feelings in your legs, he just thought it was moving them about a lot!!!!! Locum Doctor, our surgry is shutting down so we seem to be getting a lot of numptys in.

Two weeks for bloods is because there is no nurse there now and we've got a temporary one in who only does 1 day a week.

You know where I'm at re caring nightdancer, hubby had severe stroke nearly 6 years ago and he has vascular dementia now. I've done 24/7 all this time and think my bodies giving up on me. Actually slept last night!!!! Bliss......

[Hidden]

two weeks to do a blood test !!! wow and i thought my doctor was bad

[Steve-O2]

Permanent in the sense that yep, once it's yours, you've got it.

Episodes can vary between a few minutes and several hours depending on the trigger and underlying circumstances (rest level, stress, drugs in play, etc) but usually once the trigger has subsided, it will kinda hide out until the next one sets it off again.

For me personally this means learning which drugs trigger it and avoiding them and it stays pretty much dormant, as I have no known internally triggering causes. For those where the RLS is either spontaneous or unknown cause, the word "insanity" can only be accurate.

My best advice is every time it happens, write down what was consumed in the hours preceding it, what the situation was (high stress etc) and look for patterns in that. When you find something that suppresses it (even somewhat), make note of that too.

If you are like me and find that only drugs trigger it, avoid using them at all but if you must, find a way to work them into your diet immediately upon waking up so that it can do it's thing and be gone by the time bedtime rolls around.