Barry Perrin

[Chelseaman]

Have suffered RLS all my life (60) day and night. take Mirapexin for it, it seems to be getting worse with age.

[Chelseaman]

Has anyone got any suggestions please ??

[Hidden]

Hi, RLS, can get worse with age. How long have you been on the Mirapexin and what dose are you taking, is it still working for you or has it stopped working...?? Giving us more info would be helpful to help you...

[Chelseaman in reply to Hidden]

I must have been on the Mirapexin for about 4 years or so, before that I took nothing, just suffered it. I think that it is still working for me, although it does make you wonder sometimes. I get it so severe that I can hardly move with it.

[Hidden]

If the Mirapexin, isnt working as well as it should, or has been, then you might need a change of meds. Mirapexin can cause augmentation, which means it starts to work against the RLS the symptoms start early in the day and it doesnt help as much at night. Alot of us have RLS severely, and without meds we wouldnt function., altho it seems most of the meds, dont seem to work 100% of the time. Hot baths can help, if your legs like heat. At night i use a fan blowing all night at the bottom of my bed to keep my feet cool, i have a heat pad which i use sometimes, it helps with the pain i get with my RLS and can calm the RLS if i just get twinges. For more info on RLS, regarding any food, drink or other medication which may make RLS worse go to this website rlshelp.org it is a USA based site, but most of it applies to all of us.

[baccib]

Ive been on the patch Neuropa now for about a month and its definitely working better than the Requp, Less side effects in the morning. Discovering how long my iron and B12 was important as Im no on iron therapy forever a day.

AND TOP OF ALL THAT...its almost 1a.m. and I cant sleep LOL ggggrrr

[Hidden]

The only thing that gets better with age is wine and cheese..

=) I hope that the doctor can help you reach a comfortable level.

It didn't work all that hot for me either but when I try to stop taking

it (like tonight) my legs are in super high gear..so high that my muscles

actually hurt just now. I'm prolly going to take my usual dose tonight yet.

[Chelseaman]

Thanks for all of your comments, I am waiting to go and see a Neurologist and the pain management team, I will mention all that has been spoken about over the last couple of days, although I could be waiting for a little while yet. Please keep the suggestions coming in. If It had cleared up when I had my amputation I would have had the other one done as well, This RLS has got to go. Many thanks. Rant over at the moment. Barry.

[Chelseaman]

Oh well, its 2 10 am and the RLS has kicked in, not just in the legs, I've got it in the cheeks of my backside and the small of the back, in another half an hour or so it will be in my shoulders and arms. Will be pretty knackered by then, so I will make a few notes while I am able. This is rediculous, how have I coped all these years with this. It is now 2 20 and I am in agony with RLS, its in my whole body and I am really struggling to manage, its even in my wrists. I just wish there was a cure for it. HELP

[Doversoul]

Hello I am humbled by reading of the RLS problems you are all suffering. Tonite I was awake to 01.30am and up again at 3.30am - so I have changed the clock times and ripped some cd to my NAS/Squeezebox. I find that if I do something it helps to not to dwell on the discomfort, I have also taken some extra medicines (ardartrel, amytripylinean,clonezepam) now waiting for them to knick in. I have had a bad 3 days of little or no sleep, but before that I was in remission for about a week. Before then I had augmentation (hell on earth) lasting 9 days. Tonite my arms and hands have been the problem and then left leg.

I have an appointment in December with a new Nuro Consutant who specialises in treating patients with involuntary movements and RLS - if he can prescribed a drug or drugs for me that decrease the instensity of the RLS and frequency of the movements and eradicate

augmentation, I can survive; but if that isn't possible then I think that any future prolonged period of augmentation will push me over the edge. I have a postive outlook - struggle an never give up- attitude, but due to the severity of past augmentation I don't have the mental and physical strength to continue living and enduring even worse augmentation in the future.

I hope and pray that a cure for RLS without augmentation penalty is available one DAY SOON.

[nightdancer in reply to Doversoul]

Doversoul, how long have you been taking amitryptiline? That is a tricyclic antidepressant that is well known to make RLS worse and it may be working agaisnt your other meds FYI. There are a few people here who actually can take it, but they are VERY lucky. rlshelp.org is a US web site, but please go to the treatment page and see the list of Foods And Drugs to avoid. If you continue to have bad nights, I would think hard about taking them. ALSO other anti-d's called SSRI's will most likely set off the RLS. I know they both set mine off to the point I was suicidal and those meds set my RLS up to a whole new level of severity, like 3 nights in arow with no sleep that you mentioned. I was literally awake for aweek, and got admtted to the hospital fr exhaustion.

[Chelseaman]

Doversoul

Stay strong and focused and remember there is always help on the horizon, just takes its time getting to you. There are people out there that are in a worse condition than you or I. I leave you with this to ponder, if God made us, why on earth did he let us suffer this pain, are we feeling the pain that he felt whilst on the cross ??

I don't know where that came from, I am not a religous person. It was just in my head !!

Keep your chin up. Barry.

[Hidden]

The only meds that dont seem to cause augmentation are the pain killers. if you can take them without any problems, you are most likely to get on top of the RLS..

If you are on a medication which is causing augmentation (ropinerole, pramipexole and the neupro patch) then things will not improve until you change to another medication for RLS.

Getting OFF the dopamine agonists are a nightmare, it will send your RLS into over drive.

I dread the day if and when i have to get off them, i have read of so many stories of the withdrawals, of people being awake day and night with no let up from the RLS. Also i cant tolerate the pain killers, so they are not an option for me.

Yes, there are people who suffer with worse than us, but it doesnt help thinking that sometimes, when all we want to do is sleep at night without our legs wanting to jump and we just want to sleep...not be up pacing the floor, half dead from sleep deprivation.

All we can do is cope in any way we can.

[nightdancer in reply to Hidden]

Elisse is right. Most meds will come back to bite you, excpet the pain meds. I take opiates and I have my bad nights but my RLS is under control about 90% of the time. I cannot take the "regualr" RLS meds, so I am glad I and VERY grateful that the pain meds work for me. I so wish everyone could take them or were allowed to take them, because literally most of the "happy" RLSer's I know take opiate pain meds.

[peterk in reply to nightdancer]

Hi night dancer. I can't take anything else but the pain killers. For a while now I literally feel that I can't take any more of it. They help but not for the full 24 hours and then there is the total sleep deprivation. I take the long acting ones. Checked my diet and that seems OK. It has been very helpful to read other people's stories and struggles because we are all in it it together. I take ginger and hot water for the sickness as sickness meds make it worse. It's like a beehive over my feet and carawling up my limbs with electric shocks. Boy am I moaning! My concentration is so bad and my memory. Doubt I will sleep again tonight. Sorry for the rant.

[arjay]

OMG I thought I was alone before reading this. I'm taking mirapexine like most of the other guys on here. A couple of suggestions that helps me and I hope might help others. All night I lie on the floor on my stomach. When I'm like this I can easily move my legs when I need to but it does give me some relief. Also Cocodomal helps. It's an over the counter pain killer.

[arjay]

I couldn't agree more romany. There's nothing to describe the lack of sleep. Talk to most people and they'll say something like ' Oh how awful, I can image what it's like' No they can't. At it's worst I genuinly thought to myself, 'What's the point in this, There's no way i can cary on like this' and unless you've got it yo realy don't understand do you.

[Chelseaman]

Personally you are all correct, I had a real bad night last night and just blurted out how I felt this morning, I had not been to sleep at all and was in so much pain with RLS, I ended the night by calling my doctor, it went to an on call centre, fair play to them, they were very good and within 20 minutes a doctor was on the phone to me, he asked me to go to the surgery and collect some morphine pills, When I explained to him that I only had one leg and that the residual leg has a replacement knee and the condition that I was in, I was unable to drive, I have no one to go and collect it because I live alone. He agreed to come out to see me, when he got to me, I was pretty bad by this time so he decided to give me a shot of morphine, within an hour everything had started to calm down, I got into bed at 6.20 this morning (including the 1 hour clocks going back) and I slept till 10.40, my carer had been and guessed that I had been through a bad night and left me in my bed, she came back later in the morning to check on me.

I do realize what its like to have no or very little sleep, I am troubled by this most nights, I even started smoking again, because of the lack of sleep and the boredom at night.

Yes you are correct in saying that most people do not understand what its like and try to patronize you.

I also help out with a Charity (am a founder and Director)(volunteer) Assisting Amputees and the limb impaired, so the charity kind of understand through the things I have told them and some of the things I print out from the web. Barry..

[peterk in reply to Chelseaman]

I really feel for you Barry. One thing is you have a supportive doctor. Mine doesn't care less. I do voluntary work which now I can't really do as there is nowhere to walk as the office has been changed. I am just awake each night with my limbs shaking also. I've had it since 2001. I live alone too so I can imagine how you feel.

[Hidden]

I am glad the morphine shot worked for you. Can your doctor give you oramorph to try..? Its not one i can take, as i have tried it. But as the morphine shot let you sleep, maybe that med is the one for you.

Just to add, i am also a smoker, and yes when i am awake through the night, its a cup of tea and a ciggie, while i pace up and down in the kitchen...

[Chelseaman]

I have tried the Oramorph before and it makes me feel physically sick, so I cannot take it. I dont like to be reliant on morphine, too addictive, but a shot every so often does not hurt.

I just wish I could pace up and down in the kitchen, I am mostly (when the RLS is bad) in the position of being in my wheelchair, so I wheel myself around the place, I can't hop either as the other knee is knackered. I tend to take the mickey out of myself, have a laugh with others and generally fool around about having a leg missing. But the RLS is serious stuff, It is becoming the main problem now and the other ailments are taking 2nd place. Barry

[Hidden in reply to Chelseaman]

Oh dear, sorry the oramorph isnt an option for you....

I dont know how you cope either, not being able to "walk" the sensations off must be awful for you.

So far, i am only dealing with the RLS and dont have any other health issues as such. But when we age, none of us know what we have in the future that might come our way.

We have a member on here, nightdancer, she has severe back problems apart from other health issues including RLS, she takes morphine every day, it takes care of her pain issues + her RLS. She isnt addicted to the morphine, she IS dependant on it, there is a difference. But then most of the meds. we become dependant on them.

[Chelseaman]

Thank you Romany53, I respect your comment, if we can help anyone please let me know. Barry

[Chelseaman]

How long have you had the RLS ??

The Meneries Disease sounds really nasty. Put that and RLS together and I guess you are pretty well stuffed. How do you cope with that ??

[thedragon]

Reading this thread has made me so sad. I'm sending my love to all of you out there. It's just not fair is it. I know how it feels when one has just had enough. That's where I was when I joined this forum. I have happy pills now and feel so much better but I was really close to the edge. I can cope with the lack of sleep but the rls is horrible. I've just worked a 13 hour shift , moving all night and now I'm on the settee wriggling around in discomfort and pain. Ive given in and taken my co codamol so hopefully it will settle soon. I can't face all the problems folk seem to have with the dopamine stuff. Love to you all x x

[peterk in reply to thedragon]

How on earth are you able to work with it? I take my hat off to you. I had to ill health retire and am in so much discomfort that I'm about to give up my voluntary job.

[arjay]

Hi all. My RLS started about eigth years ago I've had epilepsy since I was nine and a consultant recommended I tried something called Tiagabin !! Well I did and almost straight away it gave me RLS. They then stopped the Tiagabin but it's left me with RLS. It's a bit odd because sometimes Tiagabin is used to control it isn't it. I still swear by lying on the floor as it's the only thing that seems to give some relief. I've got Sky Plus and I record loads of the daytime stuff and films and it helps the night go by rather than just watching the clock ticking away.

[Chelseaman in reply to arjay]

Hi Arjay

I would find it difficult to get down on the floor, I am unable to kneel on my artificial knee and the other leg is missing (its gone awol) just below the knee, but I find it hard and painful to put my knee on the ground, If I fall over (which happens 3 or4 times a week, I can be stuck on the floor for hours, my neighbors are good though, they check on me and my carer is so so good.

Gabapentin is supposed to be good, unfortunately I cannot take it as it gives me gut rot, gas and nausea. Barry

[peterk in reply to arjay]

This is similiar to me Arjay. I was given topirimate by accident, collapsed, hospitalised and left with severe RLS ever since. People don't believe it. They were only tiny pills for head pain as I've had a lot of eye surgery. I think I will try the floor. A cold floor helps the pain in my feet.

[nightdancer]

To me sleep deprivation and the awful things it can cause is about the worst thing, because you have to live with it every day and night and we have to carry on, no matter what. I am a twice cancer survivor, and am v ery happy to use the word survivor, BUT I have been moderating rLS groups for 14 yrs, and sleep deprivation and RLS and PLMD andthe other 89 sleep disorders wreak havoc on every aspect of our lives. My best frined just died from her 3rd bout of ovarian cancer, but rLS was her LIFE. And, the fact that half the people who hear about RLS who do not have it do not understand makes it that much worse. My very other best friend of 40 yrs actually said the DREADED phrase to ME today "It's all in your head". He is very lucy to be breathing at all right now. I moderate seveal online groups for rLS, and ave for 14 yrs; over 4,00 members,, etc, and he said that to me? I almost seriously slapped him! grrrrrrrr

[Chelseaman]

I suffered a real bad bout of RLS for the last 3 nights, it made me feel so bad that I thought I was going to have a heart attack, I had pains in my chest and it felt like an elephant had sat on my chest and it went through to my back. All the time I was having RLS. I spoke to one of the doctors at the hospital and he gave me Paracetamol,Codiene and Diclofenac (not expecting any slight relief) Within 20 minutes the RLS had subsided to a managable level and within 1 hour it had gone. I spoke to my GP about it and they are going to give it a try out on me. I will let you all know how it goes.

Oh !! and the elephant that was sat on my chest was not a heart attack, it turns out that I have got Plurasy again, I am a smoker who paces up and down with my RLS and a cuppa and I get Plurasy numerous times a year, this time it was real bad, back home now and back to pacing or wheeling myself back and forth with my cuppa and a cigarette. I have tried to quit on numerous occasions, but like a lot of us, the RLS takes over.

Watch this space for news on the new concoction of drugs review..............

[peterk]

Hi. I am a relentless RLS sufferer. What I have read about it it can get worse with age. Mine definately has and I'm 48 now.