RLS is there hope?

This is my second posting, so sorry if it seems incoherent.

To the point, RLS is ruining my life! I exist getting through each day as best I can as I never have any energy. I shan't go into all the details as I did this in my previous posting.

On Monday I went to Papworth RSSC with a visit to my specialist.

Now I believe I have the best of care available, probably the best anywhere in the world.

This makes me fortunate. However my RLS is something that they are struggling with.

When I was first diagnosed, it was great. There you go sir have some cabergoline... Job sorted and by the way would you like to be part if a trial for a new drug for RLS. ( incidentally I didn't complete the trial as I was found to have central sleep hypopneas as well)

A few years later, without a by or leave, sorry sir we can't give you cabergoline any more the side effects are too severe. ( basically it apparently has a tendency to increase compulsive behaviours such a gambling! Damn, if only I had read the side effects I could have been a wealthy man or at least had a lot of fun)

So I had a drug that worked, now withdrawn, then put on Mirapexin which was hopeless, my wife moved into the spare room, and the tiredness increased.

After complaining, I was put on Ropinirole.. I'd like to say that was about as good as a chocolate teapot, but that would be being unfair to the teapot.

This was worse .. The Ropinirole made my head fuzzy and I felt permanently like a zombie.

So then I was told the neupro patches would be better.. No, things deteriorated, I became desperate and asked for a sleep study.. Which happened last October.

The results confirmed my suspicions, my tiredness has gotten worse. Apparently now the same level as a narcoleptic !

So to add to the mix I was put on Gaberpentine as well as the patches.

Well my tiredness is incredible.. My limbs always ache and feel heavy, and I have put in weight and developed fatty liver disease.

So after having the doses played with, I am advised not to drive.

Incidentally most of my career has been as a sales manager, now impossible as I can't drive.

My career is over, to the point my current employer is suggesting retirement on the grounds of ill health! I suspect that would spell the end of any employment possibilities!

Financially I would not be able to afford my house.

So last Monday I visited Papworth again with my wife, who kindly took the day off work to make sure I got there.

I explained about the history, the effects this has on my life and my families life.

I also asked about the available treatments as I am becoming increasingly desperate!

The answer he gave is something I want to share, because it helps the understanding of RLS to its sufferers. "RLS affects different people in different ways, the symptoms are individual. We have a selection of drugs we can try, but cannot guarantee success. All we can do is keep trying"!

So I take this to mean that although RLS would lead you to believe it is one ailment..and one treatment .. This is not the case. There are different varieties.

Ok why is this so important. Because I read so many recommendations for a particular drug/treatment being posted. I know the people posting are trying to help, but this could be dangerous! The drugs are generally mind altering narcotics! So please don't try drugs unless prescribed by your specialist.

But it is also important to note, that for us sufferers, if you do get a treatment that works you are the lucky ones.. I suspect for the rest of us RLS is something that we will have to live with, and deteriorate with. Ultimately bringing an increasingly desperate life, possibly resulting in premature death!

Sorry if this seems dramatic, but , contrary to its frivolous sounding name RLS is a major issue, that destroys lives.

So I am now back on just the Neupro 4mg. I know it will not work and I believe the next stage will be drugs from the opiates.

I am loosing weight now, however I probably now don't have enough calories and this has depleted my energy further. I am trying to get into an exercise routine but getting motivated is tough with such low energy levels. But, do I wish to let fatty liver disease get the better of me! I can't be sure there is a direct link between gaborpentine and FLD, but my doctor seems convinced.

So for me, it seems there is little reassurance. But if is knowledge that is good.

And please, please don't try remedies unless agreed with your specialist, you could be playing Russian roulette.

43 Replies

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  • I just don't know what to say. My rls can be bad but compared to yours it is nothing. I can only hope that research will throw something up but non of us is holding our breaths are we. Good luck and keep posting comments of how you are doing, your not alone out there.

  • Although we all say what meds we are taking for our RLS, anyone would have to see their doctor to get them prescibed. We can only say what we take and if we as individuals find that med works for us, Yes all we can do is keep trying the medications which are available to use for RLS... Alot of meds dont come close to even touching RLS for alot of people. RLS, does affect people at different levels.

    I have just decided to add a supplement for every day use, BUT before i did, i looked at ALL the ingredients first, then asked my chemist to see if any of the ingredients could interact with my RLS med. We have to be careful when we decide to take anything.

    I am sorry you are having such a hard time finding a med which will suit you, RLS, is a serious condition and can destroy our lives. Dont give up, if you have to take the opiates and they work, then all good. Myself, if i could take the opiates, i would, but they dont suit me....

    Good luck, and let us know of any improvement for you...

  • Thanks all for your kind words. RLS is something you cope with.

    I have had it probably much longer than the ten years since I was diagnosed.

    I am lucky too, I am still in work. I have a very supportive family.

    Although I am in my second marriage. Looking back I did sleep a lot, I didn't understand it at he time. I am sure my first wife just thought I was lazy! In fact even now people don't understand how tired you get .. How you lose your memory,

    Yes my RLS affects my whole body, I have spasms ,, like an electric impulse, no pain thankfully.

    Once again thanks for the kind words, I write to inform and hopefully help others rather than for sympathy. Maybe one day we can raise awareness of RLS

  • Hey, everyone is allowed to have a moan... :)

    We can all do what we can to raise awareness of RLS, in our own little way, even if that is finding ourselves talking to someone on a bus, or just a neighbour, altho some might not want to listen to us, others will show interest and want to know more... as the tesco advert says, every little bit helps....LOL...

  • Moan!? What do you know about moaning!!! hehehe :) :)

    Love

    Bob

  • Well, i try NOT to moan, but we all have our moments....!! :P :)

    Love back.....

  • Yeah Yeah!!! LOL x 2

    xx

  • Are you flirting with me Bob..... :) I know its Valentines soon, but you really need someone alot younger than me, dont think pensioners are your forte....lol. :) :)

  • Rumbled!!!

    x

    BTW i am 54 now! :)

  • LOL, good to see you are in good form, regardless of the RLS. 54, is soooo young still... :)

    Hope your day is good to you today.. :)

    x

  • u r only 55!

    x

    PS is Gypsy around?

  • no i'm hiding :P xx

  • xx

  • Hi Vince

    I feel for you and know exactly what your saying i have RLS 24/7 and so far not found any meds that work for me specially the Dopamine meds they just send my RLS off the scale ,

    I had just about 2hrs sleep last night after a night of non been on my feet since 7.30 this morning spring cleaning got to nearly 2.30 this afternoon thought id stop and have a drink sat down less than half hour and whammmmmmmmmmmm legs on the kick guess i'd best keep on the go lol no rest for the wicked as they say,

    Truly hope you find the right meds for you and you get peace of mind and body i know what your going through just a shame we're all different and meds work in different ways myself even painkillers i have to swap about with as i seem to become immune within days yet to find the right combo ,

    Don't know about you but the less i sleep the more active i become seems weird dr's say my body goes into auto pilot and i have no control over that hmm.... not sure bout that bit ...

    theres's lots of us on meds that we don't know the long term damage may be only that we all want them to work and help us get peace within our own bodies that seem to fight against it's self who knows one day someone may find a cure but till then we fight on for another day :)

    Hope you find the right way for you ... :)

  • Hi Chuckles, wise words :)

    Bob x

  • morning Mr M :)

    why..............thanking you :) how kind of you to say ;)

    Xx

  • Playing coy....................why Ms :)

    xx

  • OK, Vince calm down a little bit...........when we share medication advice and experience of certain meds that is for a reader to take to the Dr, none of these meds are available over the counter.

    Its very important we do share as far too many Dr's don't know enough about RLS and often need a nudge in a certain direction. So its perfectly safe to share on these pages as your Dr manages your dosage. I understand your concern however there isn't an issue here. Its also worth noting that many of us take a cocktail of the meds to get an effect and so if we didn't hear about drugs we may suffer far more than needed!

    On issues like long term damage, from my view point so what? I need to get by today, my life is being stolen hour by hour so if I die XX years early then so be it. However at least I can get some form of life today? I hope you follow me............like you my RLS is very bad and the painful version, it runs through my whole body and some days no meds seem to work, take right now; not got into bed at all Saturday night so today is going to be a mess and the RLS is still active at the time of writing :(

    Restless Legs, sounds so gentle and harmless (almost funny)!! If only people knew what we suffer!

    Hang on in there Vince (and the rest of you) we cant be ignored for ever........can we???? :(

    Kindest

    Bob

  • I am glad I joined, I must admit that many days have been written off.

    Some days I spend 16+ hours sleeping .. When I work I sleep 6 to 7 hours.. Andover always feel so drained and my muscles ache in the same way as you would feel the day after heavy exercise. At 49 I sometimes struggle with the stairs my muscles ache so much.

    Yet I am physically fairly fit.. On a good day a ten mile walk causes me no problems.

    Restless Legs Symdrome.... I think the name itself does no justice to the cause. It cunjures thoughts of someone with itchy feet wanting to always travel!

    Maybe something like involulantary convulsive muscle disorder.

    The last five years I am glad I have a camera.. My memory is nearly none existent, significant events I forget. When my family discuss and reminisce the past it often doesn't register. Things like my daughters graduation last year, I know I spent ages buying her a present. Then next time I saw her and she was proudly wearing them I asked" they are lovely, who bought you those". Luckily she thoughts was teasing. But the reality was I had forgotten!

    Life is for the moment.. Day to day it is an existence, fighting to get through the day until I can sleep. Choosing holidays where I get maximum chance to sleep.

    I am working to build a photography business, so I get more control over my time..but with no driving licence that is a problem! A wedding photographer on a bike? Novel but not always practical.

    I think soon my work will be cut short.. Retirement through ill health.. Through RLS. Does anyone have any experience of this, with reference to what I would be entitled too?

    I suspect RLS would not come under disability allowance or incapacity benefit!

    This is my biggest concern currently! The effect of this could be catestrophic!

  • I am wondering if you have more going on than just RLS just thinking out loud.

    When you had your sleep study done, did it show up that you were suffering with anything else as in PLMD. Muscles shouldnt ache to that extent, not with RLS,

    Maybe you need your doctor to investigate more.

  • The sleep study showed no new issues. To be honest that's what I was hoping for.

  • Have you had any blood tests done....?? Just trying to think what could be making you so tired, apart from sleep deprivation from the RLS. Especially as you said you can sleep up to 16+ hrs...!!

  • I have had loads of blood tests, I found the fatty liver disease.

    Maybe I am just collecting funny sounding ailments!

  • Tell me more? My cholesterol has been checked and is OK

  • Hi Elisse, muscles can be extremely sore (mine are my calves) after a bad night of RLS, the dopomine agonists tend to make your muscles cramp if you stretch (Dr told me this) and if you have a bad night but don't realise it because you are actually sleeping! (this also happens on meds) you feel like you have pulled a muscle the next morning!

  • I cant work anymore, I try but I keep letting everyone down as my lack of sleep etc makes me next to useless. Benefits very little, you my get what used to be called Disability Living Allowance his is not means tested and wont be affected by you being married which all the other benefits will be and I guess your wife is working? If so you wont get a penny!?! Look at DLA and see what applies to your situation.

    Happy to chat this over in private.

    Kindest

    Bob

  • I have an appointment with occupational health on Friday! I will know more then. I will certainly take you up on your kind offer then, if that is ok

  • Pleasure, you know where I am

  • DLA not suppose to be means tested but Council adding it into bedroom tax :( which i was suprise by ,

    xX

  • i am a bit like you. i had an assessment with the work occupational health people today. they think because of the severity i would be classed as disabled. my memory is also becoming a problem. i thought it was just me. i hope the photography works.

  • Well put Bob....you sound very up beat for having no sleep!!!!!!

  • Yeah but I look like S**t LOL :)

  • I hope not my dear :)

    x

  • Awwww im sure you don't lol :P

  • Hi Vince......sorry you are having such a tough time....it really is a life altering disease....we all understand how simply desperate it can get. Just before I came on this site I was at the jumping off place. I'd decided that if this was my quality of life and it was probably going to get even worse then I'd had enough . My doctor put me on antidepressants which have worked wonders for my 'mental health' I feel so much better. Even though they have made my rls worse .....I cope most of the time.....catch 22 really.......I wish you well and keep posting!!!!!

  • Hi Vince, I read your post with sadness as it really brings home what so many RLS sufferers put up with in their daily lives. I appreciate yours is extreme. I'm fairly new at posting on this site after a nasty bout of RLS brought about by a back op and actually coming off some nasty meds. I've had several years without RLS which only came in phases and which I never treated. Luckily, this time round, and after many nights with no sleep, I found a natural remedy that worked for me (magnesium phospate) and yes, I'm one of those lucky one's who only live in fear of it returning. Only by people like you at one extreme and me at the other, posting on sites like this one, can our knowledge of this vicious condition be passed on and now and then someone else will benefit from our experiences. (If interested in my mag phos story check out my postings). Wishing you some peace.

  • Have read a few posts and realise my R L S is quite trivial and only when resting or trying to sleep. A while ago it got worse and spread to arms and shoulders assuming that is what it is. Saw my doctor, having tried the magnesium with some success. The doc put me on vitimins, in Spain it is called "Hidroxil" B12-B6-B1 in tablet form, three the first day then two down to one a day. it stopped after about four days. I am wondering now if I have R L S I have just used this method for a second time and had relief by the fourth night. I feel it can´t be that simple for some of you, but what can you loose exept respect for me.

  • Thank you Vince for your post, I know exactly how you feel, the opiate route was the only way I have gotten any relief, I was on co proxamol for years until it was withdrawn because of the suicide rate from them. Now I lurch from night to night trying anything I can and therein lies the danger, we are so desperate that we will try anything that anyone suggests!

    But what else to do?

    But because of this site we know as the UFO followers say "we are not alone" thank you.

  • I also had a slight fatty liver after having blood tests a few years ago and was told that some meds can cause this

  • Thanks for the replies, it is good to know that in what we go through we are not unique.

    I would say one thing though. It is a big like a psychological disorder.. A common response

    Seems to be, my condition is not as bad as yours! Now although I understand why, personally RLS is something that I feel is trivialised in the same way as depression.

    Any trauma as with Sleep deprivation has an effect. Although the results for me may have had obvious far reaching consequences , such as career, marriage etc., RLS causes us all to be deprived of the life we should enjoy in the same way trauma does psychologically.

    So please, I only stress my own milaise to highlight that sleep deprivation through RLS is not just about being tired, as those ill informed would believe. RLS for all sufferers is a disease which is equally disabling as many ailments which the world happily recognises as causing life issues.

    The condition is serious enough for eminent specialists to recommend that we should not operate machinery or drive vehicles. If you look at your driving licence, we should all inform DVLA, who will revoke your licence until your condition is controlled. Or more correctly revoke it until your specialist confirms in writing it is under control.

    If these organisations recognise the implications on safety of RLS, why do other government departments dismiss it? Even disabled people are allowed to drive! Yet they are considered incapable of work and can receive a disability allowance!

    In essence this means there are many driving jobs they can do which we can't.

    Now it is early in the morning and my weeks sleep is as usual going through the roller coaster of good an bad nights .. So if I get delirious then please forgive me!

    But what I seek to do is to get sufferers to raise awareness of the far reaching effects of RLS on the sufferers lives, rather than do ourselves an injustice by putting on a brave face and saying " it's not so bad".

    Until the world knows the cost of RLS to lives and industry it will not take action.

    I hav'nt got the statistics, but I suspect that if the number of days lost to RLS was calculated, added to the number of hours lost due to below par performance and this calculated as lost revenue to industry, then this would be a significant amount of money.

    In addition to this how many workplace accidents are caused by RLS?

    How many road traffic incidents? What is the cost of this?

    How many working days lost through depression due to RLS?

    Surely the sums add up to make it worthwhile investing in finding a solution?

    Perhaps this is why we are not treated equally to those with physical disabilities!

    Our numbers would mean such a drain on the system that the cost is viable..

    RLS is an acceptable risk and the consequences to lives acceptable.

    After all, those in a secure financial position, such as directors and shareholders, can organise their days to compensate for RLS and afford someone to chauffeur them around..as with our politicians. The effect of RLS is class dependant.,

    Thus not surprising it it is trivialised !

    I am not political, merely a factory engineer, who cannot operate the machinery he fixes!

    But I would urge us all to be proud of living with RLS. To talk openly about the effect it has on our day to day existence and the effect it has on our workplace!

    Maybe then we can come together and bring about a better deal and life for ourselves.

  • Oh you have my sympathy Vince.

    I 'inherited' RLS from my Father & have suffered LIGHTLY since I was about 50, I'm 66 now.

    I get 'bouts' of it.

    I had no idea it could be SO debilitating, I am so sorry.

    You are in my thoughts & I hope your life improves...............Grace

  • hi Vince. at last someone i can sympathize with. i am coming up to 60 this year. ropinirole dosage is so high the doctors have no one to measure against. still aching in arms and legs. falling asleep at work. not sleeping at night. have no life as if we go out i will either start pacing about or take the ropinirole and nod off. lucky my few friends understand. funny though as when i go to bed i cannot sleep. unless someone sees you at your worst no one will ever understand. i did s sleep study when first diagnosed. 1 spasm per minute lasting 15 seconds for the 45 minutes i slept. carried on when awake. they counted 600 during that night total.

    you can tell people but they need to see it to believe.

    god bless mate and keep going.

  • Hi Vince,

    Its now 2.30am and probably like you, I am pacing the floor nearly falling over from being so tired. I am 68 so luckily don't have to work so I do empathize with you. I did not know about the driving situation which as you say really changes your life. It does help to know you are not alone. I have just joined the community and it helps to know I can comment to people who understand. As another comment said though-unless you have it you don't understand - some of my friends say "oh yes I get that, mylegs twitch so bad in the evenings I have to go to bed!!!!!" I have given up explaining that if it was true RLS bed is the last place they would go.

    I have been taking Ropinirole 4mg and Tramadol 200mg a day for a year now and they have stopped working, so my consultant has recommended adding Gabapentin - slowly 300mg a day going up to 1200mg a day, I am on the 300mg a the moment with the Ropinirol and Tramadol - and it seems to make things worse if anything. I have to persevere I guess until I reach the dose he wants, but may be a zombie by then.

    Keep going Vince, and keep trying different combinations, even taking tabs at a different time can help, meanwhile we must all hope research is going ahead, as my doctor said, there probably is because there would be money in it.

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