Hi, I have suffered with RLS since i can remember, some...

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Hi,

I have suffered with RLS since i can remember, some of my earliest memories as a child are of RLS.

Over the years i have complained of this condition to many Drs and specialists, i have had xrays and blood tests, most Drs or specialists laughed me off, one even said it was spiritual.

After one very bad night, i was near suicidal, i went to see my Dr and told him if he did not look into it and take me serious i would sit on a train line and wait to have my legs chopped of. He did take me seriously and over the next few years i tried many many medications, all of which had no effect on the RLS.

I then tried Cabaser, this actualy did make a difference but the side effects were so bad that after a year or so i stopped taking them, durring this time i became agrophobic .

The reason for this was that the Cabaser made me feel like i was constantly shaking inside, i would have to hold on to something solid to steady myself even though outwardly i was not shaking.

RLS destroyed my childhood, my schooling and my youth.

As i get older , im 41 now the RLS is getting worse and effects my hips aswell as my knees.

I was signed of work for a while and with some Prozac and being able to rest when i absolutely needed to things were not to bad, i had no stress and managed quite well.

I was assesed for incapacity benefit and the Drs laughed me away , they were totaly dismisive and did not understand how badly this condition has effected my whole life, i would say it has ruined my life.

Every partnership i have had has failed, twitching in bed, seperate beds, staying up all night and mood swings saw that all relationships ended quickly.

Every girlfriend i have had has asked me after the first night of sleeping together what was i doing all night, they all thought i was masterbating but i was infact just twitching and stretching my legs.

I hate this condition and at times i have been suicidal.

Anyway i am at the moment appealing against the desission not to allow me incapacity benefit but it is realy hard becouse i am infact mobile and have no problems walking, the Drs do not seem to understand that my problem is sleep related.

I am at my whits end, i can not go back to the grind and worry of having to get up every morning at a certain time, if i have not slept all night getting up for work is real problem.

Every job i have had has only lasted about 3 months before i am sacked for arriving late or taking days of to sleep.

What does one do, to be honest having had a life of disturbed sleep i am now looking forward to the Big Sleep.

In the past i have tried many ways to relieve the anguish for want of a better word, i have tried cold treatments, warm treatments, oils, creams, changes in diet, exercise, pills, you name it ive tried it.

I have tried to sleep with my legs raised to stop blood flow, i have beaten my knees with a rubber mallet and pieces of wood, i have stretched in such ways that i have given myself groin strain.

All give very temporary relief, but the feeling always comes back shortly after.

I wish my legs were painful, i could live with that , but this feeling is just too much sometimes.

I put myself in painful positions to override the feelings in my knees, the pain is better than the feeling, after a while the pain turns to numbness which is a great relief but it soon wares of and its back to the horrible feeling and needing to move my legs even though i have just hurt them in the process of trying to find some relief.

This is a living hell and most people i talk to about it simply do not understand, even the Drs and Specialists.

Where does one go from here ?

I feel the Big Sleep is the only real answer but i would like to continue to live, saying that to end it all would be just as good.

Sorry to write such a downer of a letter, it is the first i have wrote on the subject to any website or forum.

thanks for reading, and i hope no1 else suffers this nasty desease as badly as i do, if you do then i fully understand how it effects your life, i wish people could understand how it has and continues to effect mine.

[i:e1ffeecbaa]This message was automatically imported from the original Patient Experience[/i:e1ffeecbaa]

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  • Posted

    I totally understand what you are talking about and although my symptoms are not as bad as yours it still affect my entire life! It is exhausting! Every night I start in bed with my husband only to have to move to another bed as I toss and turn so much that it gives me more anxiety that I am waking him too. There are many people with the same symptoms and there are heaps of websites with forums and treatment recommendations. I just read that Mirapex or Requip provide great relief for some sufferers maybe you could try this?

    Don't resort to the big sleep - Life is way too precious and you only get one!!

    (Sorry but as is our policy, the web addresses have been removed)

    [i:8a81d14e6e]This message was automatically imported from the original Patient Experience[/i:8a81d14e6e]

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  • Posted

    Hi there Folks. If I said that I’d been diagnosed as having restless legs about 10 years ago you’ll have a fair idea of what I’ve gone through. There have been times when I’d gladly have chopped them off just that I could get to sleep, not to mention the distress caused by my legs keeping my partner awake. It was really nice to hear the doctor diagnose the condition, stating that it was well enough documented but that there was no cure!!!

    Since then I’ve tried and looked and again complained to a different doctor these 10 years down the line to be told there still is no cure. In fact, she prescribed Amitriptyline! Not sure it stops the twitching legs but it certainly turns me into a Zombie!

    I’ve read that it can be an iron deficiency!

    I’ve read that Calcium / Magnesium can be a preventative to it.

    I’ve read that Dopamine is sometimes prescribed!?

    I’ve read that strong pain killers might help.

    I’ve read that something like Diazepam might help!

    Nope…!!!

    I take multivitamins etc and I certainly have no iron deficiency. Yes, I’ve had my blood checked!

    Yes - I’ve tried / calcium & magnesium tablets / capsules!

    Because of other condition I’ve tried “strong pain killers!”

    Because of stress / anxiety I have and I take diazepam!

    Take a warm bath? Joke!

    I did find that if I got up and stretched my legs a my legs a bit I could delay the recurrence long enough to get to sleep, but those days have also been and gone!

    THEN! A BRAINWAVE!

    Type “restless legs” into eBay‘s search engine! Don’t stop reading and stop laughing (;o)

    It brought up something which is not presently listed but I can tell you that I bought some at the time and they work for me!

    Although the items listed their benefits for restless leg syndrome it was not in the title.

    However, the products, which I recommend you try wherever you can get hold of them are:-

    HAWTHORN COMPOUND (green buckwheat with garlic & hawthorn extract). Directions = 2 to 4 tablets 3 times a day

    And

    RUTIVITE (Rutin) = Direction 1 or 2 tablets a day.

    As a “belt and braces” job I take both. However I am presently only taking 3 of the Hawthorn Compound and 1 of the Rutivite in the evening before bed!

    Voila!

    No more restless legs (confirmed by my partner). Test period? Four weeks now!

    Good luck.

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  • Posted

    Have you tried Vitamin B12 complex or Hawthorn Compound and Rutivite (herbal remedies to help circulation) The last 2 were recommended by no1pinkpanther (18 June2007) on this site. Vit B improved my symptoms slightly but the 2 herbal remedies made a dramatic change and I can get through most evenings and nights in bed with only slight fidgets, whereas before I was up 2 or 3 times in the night walking round putting cold water or cream on my legs or else I had it during the evening and ended up standing for most of the time. I have visited friends and had to stand up most of the evening, as the feelings in my legs drove me crackers whilst sitting. Do hope these 2 herbal remedies especially help. I have had RLS for over 10 years, the last 2 being the worst and my symptoms :D became worse after having to have morphine, once for pain and once after an operation. Best of luck.
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  • Posted

    Hello folks,

    I too have suffered with RLS for as long as I can remember, since as early as before starting school at 5 years old. I am now in my sixties and still fighting it. Well into my twenties I used to rub a liniment ( Sloanes ) into them, it burned like mad and smelled horrible but the burning sensation was better than the aching pain I went to bed with every night. I always found it difficult to share a bed with my husband as I was so restless, in and out of it all night and about 15years ago I decided to sleep alone. Many many trips to different doctors produced no answers , the best they came up with was \"take a pain Killer\", no help at all. Like you there were and still times when I would gladlt cut off my legs just to get some relief, however last year at last came a breakthrough.

    My brother who in recent years has developed the condition ( they say it can run in families ) went on some trials of the drug Ropinerole and had some very good results. To cut a long story short I asked my doctor if I could try it and low and behold it actually helps quite a lot. I have to take it about 7pm otherwise I start hootching and aching the minute I sit down to watch TV. Some nights are quite a lot better than others but for the relief it gives me I would suggest that any fellow sufferer ask their doctor about the drug

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  • Posted

    Hi all

    I have suffered this since my 2nd child was born - 17 years ago!

    I find that keeping my feet cool helps - so each night I smother my feet in a moisturiser and leave them out of the duvet! :shock:

    I also find that going to bed an hour before I intend to go to sleep (lie down) helps but not always.

    While smothering my feet in a moisturiser I also massage my calves and balls of feet.

    Good luck, it is one of the most awful sensations ever.

    Melbi xxx

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  • Posted

    I can totally relate! I have had RLS since childhood. People would tell me it was just growing pains when I turned 41, it became unbearable! I was going weeks with absolutely no sleep, I never thought this was possible but it is! I went into a deep depression. I was put on OxyContin, which after just feeling drugged for a year and no life at all, I overdosed on the Ocycontin. Luckily I have a very supportive husband that was determined to get me the help I needed. He discovered a doctor that turned out to be the guru of RLS! I traveled a few hours to see him and it was totally worth it! He put me on Methadone, which I was reluctant to take but desperate. I have been on it for about four years now and doing much better. I do have nights when my legs bother me but for the most part he was a Godsend! He has written articles about Methadone and how it is the only thing that really works. The other meds usually require the patient to continuously have to up the dose until they've reached the max and then it stops working altogether. Methadone is the only med that works and at the original dose. The doctor I saw is at John Hopkins University Hospital in MD. His name is Dr. Christopher Early. Google him, if you live too far to make the trip, perhaps you could call him and he could refer you to a doctor closer to where you live! If there isn't anyone, if at all possible make that trip to MD and see him! You won't be sorry! I wish you all the best! Until you've lived with extreme RLS you can't possibly know how much of an impact it has on ones life!!!

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    • Posted

      Thanks for this, I am UK so waiting to see a specialist in London. I have heard mixed things about methadone, some say it aggravates the restless legs. I haven't tried any medication yet but I've reached the point of desperation. Did you try any dopamine antagonists before you went into the methadone? I must say I would also e reluctant to try it as I know methadone is prescribed to those coming off heroin addiction. I've seen the withdrawal symptoms to methadone and their not pretty, it can also be very dangerous if the dose is exceeded.

      I'm glad you have found something that works for you, I would do anything to end this nightmare.

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    • Posted

      I'm glad you found someone that specializes in RLS! I tried everything for my legs even the dopamine antagonists. Occasionally, I would find something that worked but after only a few weeks it would stop working and my doctor would increase the dosage until I was at the maximum dose and it still wouldn't work. Apparently this is very common. I understand why you would be reluctant about taking Methadone, it is used to get heroine addicts off of the heroine, however, it is also used for pain. In order to stop taking it you would have to be weaned off of it very slowly or you will have awful withdraw. I was on other strong pain killers that made me feel doped up. The Methadone doesn't do that to me. I wish you luck with your appointment!!!!

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  • Posted

    I am truly sorry to hear how horrible this dis-ease can be for some people and I am fortunate that it is not as severe for me as it is for you. But it does and has messed with my sleep for forty years and I also have apnea, so double trouble really.

    Over the years I have tried many things; some useless and some useful, but with side effects.

    The tablests I am currently taking do the job quite well and with no obvious side effects. Brand name 'Sifrol' (in Australia) chemical is Pramipexole (.125G) and it is another dopamine agonist.

     

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    • Posted

      I am currently on Pramipexole 4.5 mg a day which is the maximum for parkinson's patients. My legs still remain restless. A side effect of the drug and  other dopamine agoinists is gambling and shopping.

      I have experienced the gambling. My husband mentioned that the drug mirapex -generic name pramipexole was associated with these side effects and a law suit had begun in the USA.

      I mentioned this to my doctor and that is when I was referred to a neurologist.

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  • Posted

    I feel very sorry for your suffering.  At twice your age, I have suffered from rls for only about 5 years, but I do understand the hell of night after night without sleep.  I'm amazed that you have been able to work at all with the condition.

    Initially my GP treated my insomnia with sleeping pills, which only worked for a while.  Eventually I reached a specialist who, after tests, established that I was suffering from rls.  At present I am taking tramadol, which is normally prescribed as a pain-killer, but it suppresses my restlessness and allows me to sleep.  It is superior to various other medications which I have been given,  I just hope that the effect will last - at my age, this may not be too long.

    I do hope that you will find something that works for you.

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  • Posted

    I was started on Ropinerole (we call it Requip here in the states)  several years ago.  1 mg   which worked well for quite a long time but put me to sleep exactly one hour after taking it.  I always woke up with a nasty headache from that dose but lived with it  while it calmed the legs.  After augmenting I was switched   to Gabapentin.  Worked OK until I had to increase doseage to 300 mg caps a couple of times a day.  Had serious mental side affects (paranoia, memory problems, etc).  Was told by a friend to be aware of those side effects so I knew as they began it was the 300

    mg of Gabapentin causing my mental deterioration.

    Then tried the new Neupro 24/7 patch. I've  heard some people have good success   with it  for RLS but   for me it   caused such severe headaches I thought I was having a stroke.  I had been off Requip for a few months perhaps and decided on my own to go back on low doseage of .125 mg.  It has worked well for quite a while but now is starting to augment a bit so as I raise doseage - voile - headaches.  Thus I am going to go back to low doseage of Gabapentin, see if it works and give myself a Requip vacation.  Hopefully Gabapentin will work long enough to have a Requip break and it will work again in a month or two.  As you can see, I have run the gammet.  One thing I do  religiously that does help - I take Robaxin (muscle relaxant) every single night.  My doctor started me on this 50 years ago when my RLS first began.  (Was just called the jumpies then).  Robaxin worked for YEARS then became less effective about 20 or so years ago.  All in all I do a cocktail of my own making.  Right now, 1 Gabapentin capsule, 1-500 mg. Roxabin, a couple hours before bed.  Then one more of each plus a Norco (opiod pain med) as I'm getting ready to fall asleep.  Many nights it works pretty well.  If not, I head into a blazing hot shower and literally almost scorch my legs for several minutes.  Seems to get the meds working thru my system, stops the 'jumpies' and FINALLY I plaster 5% Lidocaine patches on the areas of my feet and legs that are aching so bad I can't stand it.  They do stop the aching for me.  I stock up on boxes of them to be sure I have them when the pain gets so unbearable.  And now, finally, my daughter has a medical marijuana card and got me some oil that is rubbed onto areas that are so aching and painful.  I found it worked on the tops of my feet but I'm sticking to my patches on my legs.  The pain was never a problem until perhaps 10 years ago and has gotten progressively worse.  I do find when I've gone thru this miserable ritual of pills/scorching showers and patches I am finally able to have my legs be quiet and I can sleep.  Heck of a way to live isn't it?

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  • Posted

    I totally understand how you feel... I am up right now because I can't lay still.. can't stay in bed.. tonight it is just my right leg acting up.. drives me crazy.  Sometimes I wish I would just die  .

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    • Posted

      My Grandmom referred to RLS as jumpy legs! I've tried everything that you have tried but had no success. I saw an RLS specialist about four years ago, maybe even longer and knock on wood, my legs are so much better than they were! I'm not thrilled about taking Methadone for it but the doctor I saw has done a lot of research and has found that this is the only medication that continues to work without constantly needing to up the dose. I still have times when my legs bother me but it's not keeping me up all night long anymore. I agree, it's an awful condition to have to deal with! Unless you've been through it you can't possibly know what it's like!!!! I hope you're doing well!!!!

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