RLS isn't so serious that it's life-threatening- wanna bet?

2 people out of 4 in my family have rls. 2 now have high blood pressure,

One is borderline diabetic. We are all physically active. 3 of us eat healthy,

Adam eats like a horse any and every food known to mankind. He is not the

one with medical problems. I developed high blood pressure and I think

that depression is coming on. I often think that if life is like this for the rest

of my life and it will keep getting worse, then why be alive? I'm not going to

ever feel good again with those medicines. I just read about people gaining

a lot of weight and people being sick on medicines and that people get relief

for a little while, then they have augmentations. People are on pumps for

this and taking after surgery medicines on a daily basis. It seems like life

is only about finding some relief and mostly getting some sleep at night.

As I read back, people were standing up propped against a bed, or people

walk around the whole night or people feel like harming themselves and some

do it actually. Doctors don't know much about it. There is no funding for it.

Excuse me for getting a little down in the dumps for this. I don't find a lot

of hope on here. It works out if you can stay at home and sleep but what

about just a few of us who have to go to work very early the next morning for

the entire day? We can't be sitting in a tub or pacing all night. I am sorry for

ranting and raving but if anyone knows of some good relief that lasts other

than being put into a coma - then tell me. How am I supposed to work like

this when working is my only choice? I am sick of no sleep. Why can't

a doctor, employer or scientist not help this many people?

16 Replies

  • Wish i knew the answer hun, even the experts are at a loss, more research is needed, we all agree with that, but not a lot funding goes to this condition, like other conditions where they get a bigger slice of the funding. All we can do regarding the meds available is to try them and hope we get the relief and sleep our bodies crave. You are feeling so down because of the lack of sleep, sleep deprivation can lead to depression plus other health issues, could be why you have high blood pressure. You need to try the meds to find that relief, the first med might not work or agree with you, so then you try another til you find one for you... its trial and error unfortunately. Most of us have gone down the trial and error route. No medication we use seems to be forever, we have to keep changing them. Please stay strong, if you get the right med to take and get some sleep, you will feel better all round... I think alot of us can relate to the...why be alive... I have had those thoughts too, when i couldnt find a med to suit me. Just know, we are here for you....Having a rant and moan to those who understand can help, thats why support groups are very important.

  • I have to tell you that the low dose of morphine I have in my infusion pump, only 96 microgram, does not send me in to a coma. I have quite a normal life now, and so do a lot of other people with RLS and different kind of medicines.

    But they are not here, they are happy with their situation and do not need to turn to us for advices, comfort and help. One problem with forums like this is that you only see the unhappy ones here, but on the other side it is here you can get support when your thoughts are dark.

  • I agree with Elisse and Swedish. Jaynielynne you must try to be positive. It is very hard and we have probably all had dark thoughts at one time or another. I am currently doing OK on my meds but that's not to say I don't go through periods where it gets really bad again. At those times people on here have helped me by listening and suggesting and you too will get the same help. There will be something to suit you and give you relief. I don't know whether you are in the UK or not but my advice would be to do some printouts from this forum, and also the rls.org website, and take them to your doctor. Ask for some help to get some sleep at least until you find a med that suits you. It doesn't have to be forever so you won't get addicted and a few good nights will help you get your thoughts and feelings straight. As Elisse said, the very worse thing is sleep deprivation because that affects you whole mind and body. Good luck x

  • I think that you are not being fair to yourself today. I noticed that you had some

    posts about having the flu. That can make things a million times worse. Take

    the days off that you need. Did you get some medicine?

  • It's not all bad news on here but we do tend to rant a bit when things get us down. I do have to go to work too and it's very hard sometimes. Do try the meds as suggested I have been on pramipexole for sometime and as long as I take it at the right time I get a reasonable night although I have to lie on the floor in the evening to watch tv. The pressure seems to help.

    I do hope you find a way to manage your rls.

  • Morning Janynelynne, we all understand how you feel. I have often thought about driving into the river at the bottom of our road, when having being up all night pacing the floors. Un fortunately none of the doctors want to listen, just fill you full of Pramepexole and other drugs, but they do give relief. At the end of the day its like having a headache, people dont hesitate about taking paracetemol, so try the medication and see what relief you can get. I have walked so much over the years, my son got me a pedometer, he worked it out that I did the equivalent of 15 marathons a year, we all accept that RLS is unbearable if left un treated, but we all really need to try and make our docs listen. Hang in there Jimeka

  • I know how you feel... i have justnhad bloods taken that.my sugar levels are abnormal so have fasting bloods next week. I am being treated for depression also. But took myself off of ametriptyline cus it made problem thousand times worse. I take sleeping pills when the doctor will give them.to.me which is about 2 weeks every six months. Im knackered all the time. Im off.work sick at the moment because of depression, no sleep, feeling anxious all the time and a banging headache that hasnt shifted for weeks and im sure the whole lot is linked. My iron.levels are at 5 when they should be between 50 and 240 bit we are working on that. When i go to tje doctor and tell her i want to go to sleep i always end up crying and feel a total prick. Id happy with sleeping pills for thenrest of my.life because even un natural sleep is better than no sleep. I.made the.mistake once at about 3.30 am of getting in.my car and driving to tesco because i was going out of my mind walking up and down the sitting room and once i got on the dual carraigeway it escalated and how i never crashed my car that night i dont know but know ill never get in a car again with it.

  • I still have the flu and I'm tired even though I slept all week so far.

    I am taking a narcotic because I went into the emergency room with

    being so sick and my legs wouldn't stop moving. A Chaplin came in

    and asked if he could pray for me. I started crying because I was so

    sick and not sleeping. That's how I ended up getting valium and codine.

    I wanted sleep and they were all worried about me talking to a councillor.

    I am going to follow up with my regular doctor on Friday. I am off of work

    for another week with this. The flu is really bad.

  • RLS at its worse...! Flu knocks you for six, i know when i have had the flu all i wanted to do is sleep. Your body sort of shuts down trying to recover. I know meds for RLS was not on your agenda, but pleased to hear the hospital gave you some thing to quiet your legs and for you to get that much needed sleep. The last bout of flu i had a few years ago, i was off work for three weeks, you start to feel better, but it leaves you with no energy. So, be in a rush to return to work. Feel better soon. :)

  • I' sure you mean't to write" don't be in a rush to return to work", the opposite would be a disaster!,

  • Yes, of course i did.. After 3 yrs i am sure everyone else knew what i meant too.

  • I apologize if I offended, I just came across it for the 1st time.

  • I would not recommend what I'm having now that I have the after effect of side effects but I have been able to sleep lately. Eating at night is a must not for me and eating wheat and dairy. I have Clonazepan in case I see its going to be a bad night but in the holidays I avoid it. Pregavalin has helped but has nasty side effects. Neupro can help but also has had horrible side effects, luckily I'm hardy using any now. Take care.

  • Thank you everyone. It took me this long to say that I am over the flu.

    I had the aches and pains last and I felt like it went away and the next

    day I felt the symptoms again. I was so tired that I dragged myself to work.

    Now my rls is still bad but I am going to try Lyrica, Prefavalin? I just won't

    eat much. My immediate need is for more sleep.

  • Did you read the article I posted about primary rls and folate earlier this evening? Could this be something that would help u?

  • Unfortunately it has never been considered worthy of research like cancer and heart desease, simply because you cannot die of it; I says this because it in itself does not cause death, but it sure makes you feel you want to end it all. It is a relentless tortuous disease which can only be managed at best, because no cure exists , yet! I really feel for you, but maybe something on this forum will work for you, even if it's just getting the support from other sufferers. Keep reading what others have tried, and most of all, don't give up.

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