Rufus

After 60 years of RLS and 10 years on Ropinerole,recently Oramorph combined I'm at the end of my tether.I am 79 years old,far too old to be throwing myself on the floor after walking around for hours and am just too tired to stand,I hear myself howling like an animal in agony and I know this can't go on.Apart from Restless Legs (in my back) I Am in excellent health for my age. I had a hip replacement recently,I don't class that an illness?I have been in great distress with the pain in my hip caused by the jerking of R L which I couldn't control.I have a loving family but I live alone,which I'm pleased about,I couldn't bear a person who cared for me to see me suffering so much,especially as they couldn't help.

I'm tired now,after hours of kicking and thrashing. My main worry is how I will cope if for some reason I am unable to move and still get Restless Legs. I am terrified at the thought.That is why I know I must end my life before that situation arises.

20 Replies

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  • HAVE YOU TRIED TRAMADOL? IT IS A VERY MILD PAIN MEDICATION,THE LOWEST AMOUNT OF PAIN MEDICATION ,THERE IS..IT HAS SAVED MY LIFE..I AM NOT ABLE,TO EXPLAIN IT ALL TO YOU,I JUST KNOW THAT I TAKE IT WITH 2 MG OF ROPINEROL,AND IT WORKS !!.IT'S THE ONLY THING I WILL TAKE,AS I STRUGGLED FOR TWO YEARS,TO GET OFF OPIATES.OXYCODONE,HAD ME,AT 60 YEARS OLD,AND I JUST WANTED TO DIE..I KNOW HOW YOU FEEL..I TOLD MY DR,NO MORE NARCOTICS..HE SUGGESTED THIS TO ME,THERE IS NO HIGH,THERE IS NO DIZZINESS,NOTHING,JUST RELIEF..ONLY 50 MG,TWICE A DAY...AT LEAST PLEASE LOOK IT UP,AND READ ABOUT IT..HONEST,I HAVE WALKED THE FLOOR ,JUST LIKE YOU,FOR MANY YEARS ALSO...CAROL

  • We can't let you do that I'm afraid. And you haven't even told us anything about yourself. When you say you're "healthy" does that mean you are taking no other medications or supplements but the RLS ones? After three nights of no sleep I was ready to do bodily harm to myself. I had restless body starting in my mid-forties, I would swear that it was even in my brow. I would throw my head back and arch my neck in an effort to find a comfortable position that would end the insane craving to move. I've had RLS since childhood but so mild and infrequent that it's not worth mentioning. I got lucky. On that fourth day I was searching the internet and someone on some site said just take iron, even if you're not anemic, just take it. I went to a health food store and bought a "non constipating" form of iron because I also have IBS. The site didn't specify what kind of iron but I didn't want the kind from the drug store that is notorious for constipation. Anyways it worked. That first night and every night. But I have to take it on an empty stomach and about an hour before bed. When it got to the point where I needed two iron tablets I started to do more research and realized that the antacid, the benedryl and the 3mg of melatonin that I was taking was causing my RLS to be much worse than it has to be. I stopped all of these drugs and my RLS was gone the next day. Did you know that statins and even beta blockers bother some people's RLS? So too with hormone replacement therapy.

    My point is not to bore you with my story but to make sure that you are smarter than I am and are not taking any of the drugs (and there's dozens) that cause or worsen RLS? Plus, I've learned from other people on here that they discovered a trick or two to rid themselves of RLS. One woman said she takes a teaspoon of cream of tartar every night. Cream of tartar is pure potassium bicarbonate. And one teaspoon exceeds the recommended daily allowance but desperate people do desperate things. I still get RLS once and a while, plus I can induce it by taking benedryl. One night I had to take benedryl because I was around a dog and I am very allergic. I got RLS within an hour or two of taking the benedryl. I figured I would try the cream of tartar...only less than a full teaspoon. It got rid of the RLS but I was oddly awake. Later on I read that potassium, especially in high doses is a stimulant. I have also tried magnesium on numerous occasions for RLS attacks but it never seems to work for me. I was actually taking magnesium everyday when the RLS was bad, and even taking it over a long period of time didn't work. But others swear by it and so always worth a shot. Another person swears by a litre of tonic water a day. It has to be the type of tonic water that contains quinine. Quinine is a substance in the "quinolone" family. Quinolones are amazing dopamine agonists. Personally I like the idea of iron or potassium more (both have to be in the right form I believe).

    One time I had RLS and laid down on a slant board with feet higher than head. Much higher. There was no RLS on that slant board. I don't like that feeling of my feet being much higher than my head so I wasn't able to fall asleep and thus immediately ran for my old stand by...iron. Do you own a fan? Fan creates something called "white noise." White noise is supposed to cause our brains to release dopamine. Anytime you can elicit your brain to release dopamine you can rid yourself of RLS...albeit temporarily. Do you know why standing and walking relieves RLS? Your brain has to release dopamine to balance you and coordinate movement. So get creative. What other ways can we trick our brains into releasing a little dopamine while we are lying down? Music? Repetitive images? Music with your legs raised after you've taken some iron and potassium?

    Keep reading my reply and the boredom will lull your brain into a different state of consciousness. So, anyways, sorry, but you can't do anything to yourself until try all of the above or come up with something new. I await your response.

  • Rufus,

    Dude, hang in there awhile longer, The beauty of the next day, and days gone by is too great to sacrafice. Even though, you remember Agony, because you experience it daily, nightly There is always beauty, beyond our suffering. I know, because I have seen a lifetime of Pain, too. There is hope in the future. Where do you live US or UK?

    I'm 70...and headed your way...also in very good health. I'm definitely not unrealistic and/or a 'Goodie Two-Shoes.' I and, all of us, wonder why too damned often. There is Pleasure in the Success of Perserverance. Rent "Pappillion," and watch it. Steve McQueen's last lines are, "I'm still here, you bastards" That's The Point

  • Furthermore Rufus, to have lived to 79 in good health, means you've put up one helluva fight, a very successful fight. A Fight You Do Not Stop, because you, like myself, Inspire Others To Keep Fighting in the Face of Adversity.

    Quitting is Easy. Continuing On Is An Honor. You Do Understand, I Know.

  • Rufus, I to have had the thought of taking a long walk off a short pier. Like you I am in my late seventies and have suffered with many different kinds of brain illnesses. I married the love of my life and not many people have found that person. This year we will have our 60 th anniversary.

    She has different health problems and I have always come back to what would happen to her if I caused my own death. We have two sons and 3 grand children and 5 great grandchildren and I feel like if I caused my own death it would give them permission to do the same thing.

    So years of depression, and years of restless legs and restless body find me thinking that some day there will be a cure and I will just feel so great and I would feel so foolish that I wasn't around to have the relief that will come with the cure.

    I spend the winter months in AZ and have become a patient at Mayo Clinic in Phoenix. Maybe next year will be it.

    One of my grandsons had the same condition and found heroin caused him to eel free of the urge to move. But you know as well as I know that is not the answer. One of his fellow addicts took him to a methadone clinic and he has been off heroin for 12 years, but takes methadone in very small doses and is calm and happy. That and exercise has been the answer for him.

    Rufus, go to a doctor and don't be shy or diplomatic. Insist he find a way to make you calm down and able to rest.

  • So sad to read your post Rufus.What dose of Ropinerole are you taking, you could be suffering augmentation from it (see post below for explanation of this).The Ropinerole after 10 years could be working against you instead of helping. Have you tried the Neupro patch , it helps many? Are you under a Neurologist who has knowledge of RLS.Maybe cutting down or stopping Ropinerole and adding a slow release morphine alongside your Oramorph may help.Explore every avenue, not time to give up .I feel your pain and am thinking of you , please try other combinations of meds.sending a hug x

  • Rufus, after 10 years of taking Ropinerole, my guess would be the same as p1pp1ns, you are having augmentation. The Ropinerole is working against you, making your RLS worse. I would recommend you read the article posted by Carol456 yesterday.. called Brilliant Article. It has very good info on augmentation and i hope it will help you see there are other options of meds to take. Dr. B is a great doctor, expert on RLS. His website is also good to get info, you can also email him for advice which many people have done who are members on this forum. rlshelp.org Please keep in touch with us, we need to know you are ok.

  • I cry as I write with empathy for you. So glad you have found this forum where you can be honest and where people here may have some suggestions to help you. I have parcelled up a big wish for you, it is for a solution to your pain.

  • I am sorry to read your posting, Rufus. You have been offered good advice from others on the forum.

    You can phone the rls-uk Helpline:

    HELPLINE: 01634 260483

    Line open Mondays and Thursdays: 9am - 11am

    As Elisse says, please keep in touch with us all.

    Kaarina

  • Rufus, I'm sure if you were unable to move you would be given pain killing drugs that would relax you enough to stop the R Legs. I am also in my 70's and have had RL since I was 35years old, and I also worry

    about how I might cope with difficult circumstances, but I think and pray that I would be given a drug to help.Take care, you are very precious to your family.

  • Hi Ruffus,I know just how you are feeling and a lot more of us do to,I am 79. And apart from the rls I am well Please try Tramodol slow release ,I.have been on them for 5 months and now get the sort of life I want,I can go out sleep all night and we are going on holiday,last year when my legs were so bad I couldn't even go to see my daughter. Because my husband used to get upset because he couldn't help me. I used to go in the garage and cry. Now we can go out Please do try Tramodol also let us know how you get on xx

  • "Miss" Beady:

    Do I recall you had some problems with Tramodol initially? You may have been taking the instant release form. I took it for about 2 - 3 weeks and had some concerns with involuntary arm twitching as I would dose off on the sofa before bedtime so I stopped it. It scared me into thinking it was going to turn into Parkinson's. I was on methadone (only 1.5mg liquid) for 3.5 months and it was helping but have been through some horrific dry mouth, lips, eyes, lump/mucus feeling in my throat difficulty swallowing spit all the time and failing multiple depression med's. As we all know, all but 2 possible 3 anti-depressants exacerbate RLS. So I'm pretty much in bad shape. Major Depressive Disorder, Anxiety, Insomnia-(exacerbated by RLS friendly Wellbutrin/Bupropion which has a strong "alerting" side effect.) Anyhow, stopped the methadone Tuesday night to see if it's the culprit for all the drying symptoms and now I'm experiencing what I would call RLS withdrawal symptoms. Not the same as primary RLS but typical opiate withdrawal symptom. I'm hoping this gets better as it's earlier and during the day now.... Anyhow, I have read that Tramodol, like any drug, can build up tolerance so at 52 years old I'm afraid to get on another opiate. Also heard it "might" cause augmentation but there is some conflicting opinions on that. Anyhow, not familiar with the extended release Tramodol and may consider. My only other option is to try Horizant a again, which lost it's effectiveness and was believed to be causing or elevating depression. I've never tried Lyrica... scared about the depression side effects and not sure if it augments, not to mention extreme weight gain. Go figure they recommend it for Diabetic neuropathy and those patients are the last ones that need to gain weight due to their disease. I cannot believe no one, Big Pharma cannot figure out how to cure this or find a drug that works. We can manage blood pressure and cure many cancers but chronic diseases, RLS, Parkinson's, Fibro, Lupus, many more auto immune all they do is treat the symptoms.

    Mr. Ruffus, I feel you pain. My greatest fear is knowing I will suffer with this for possibly 30 more years if I live to 80. It won't kill you and in my opinion, chronic disease is worse than terminal. At least with terminal you know there is an end coming soon. My faith is the only thing that keeps me here I shamefully admit. I have been so sick the last 1.5 years with weight loss, etc... Depression on top of know sleep RLS pain and discomfort and now some unusual symptoms that was recently tested for auto immune. I wake up every day excepting another Job "boil" to appear. BTW, I'm in the US, south of Mason Dixon Line. I came upon your forum last year. I also use the rls.org site. But it's hard to read a lot of them. It's a double edged sword. You want encouragement and help but it's scary to see what your life may become.

  • Hi there I am not one of those people who knows all about rls drugs I only know what I have been through and meds. I have had. I Do know Parkinsons and rls are not the same and sure as hell the tabs won't give it you',my arms go just like the legs,I do have magnesium salts in the bath and do think that helps,I didn't get on with the instant Tramodol they made me so tiered ',but am very happy how the slow release Tramodol are going Good luck x

  • WAIT!!

    There are other answers. Please man I know how low this sh1t can pull a person. But I also know that there is relief. As has been mentioned I found tramadol to be quite good, I used it for 8 years with great effect, unfortunately its effectiveness waned but looking back it was better than I thought!

    There is Cannabis which can be useful there is KRATOM some info from a user here with links to more info:

    thriftyfun.com/Home-Remedie...

    There are many other concoctions to try I know at your age you want a little peace in life and it seems impossible to get but believe us there are answers:

    rlshelp.org

    As Elisse has pointed out.

    A word of caution be careful your Dr hasn't you on some med that can make things worse.

    As I said to my wife just last night - "If I didn't have Kratom I would be afraid for what I would be feeling"! I understand what you are going through but don't give up yet. When you have tried all possible help the think about giving up, (and then when you have thought about it throw yourself back into the fight).

    You are not alone in this!

    Take care and stay strong.

  • Hey Rufus just checking in, you OK? Have the posts here given you any confidence? Go to your GP and demand help that's what they are paid to do.

    Get off the Ropinerole and on to better pain drugs and see if that helps. The Dr's are slow about prescribing the pain drugs due to the chances of misuse but research says that this is why they are under utilised. Make a scene and tell your Dr how you feel they need to know the severity of the symptoms and the severe impact it is having on your life. If he or she can't help then they can direct you to those who can.

    Remember you are not alone as you can see from the replies so try and stay strong this will ease when you get the correct treatment.

  • Rufus oh Rufus you've reached the ripe old age of 79 and coped so far - well done. Hopefully your last point was a response to the bad night you suffered and in the cold light of day you can pick yourself up again. I too live on my own and can resonate totally with your feelings of helplessness and despair. Please please get back to your GP and review your medication as suggested by many others. If you are not happy with GPs response don't delay and ask to be referred to a specialist. Show them your message if necessary . Sending lots of love and hugs to you - hang on in.

  • Rufus,you have been on my mind,please make contact and let us know you are ok.If you dont want to talk just now just send a x.

  • Rufus,I am very worried about you PLEASE make contact,if you prefer just send me a private message x

  • Rufus, feel so sorry. I am 71 this year and have suffered RLS since I was in my 20's. I too take ropinerole also magnesium + b6 £1 from my local savers store ( you can buy magnesium at most stores) I top them up with 1 or 2 co co codamol at night. Also take the magnesium at night. The body does not store magnesium that is why it's recommended to take at night. Please try this. good luck.

  • An on line article I read said that if all else failed your doctors who are sworn to relieve suffering wherever they can should prescribe Narcotic pain killers administered however you feel best about. I am also 79 and if I couldn't get relief I'd go to the streets and purchase Heroin and use small doses to get some rest.

    Doctors are some times silly about causing addiction---Who cares about addiction at our age. Young people are addicted, we are dependent. Rufus---try Narcotics however you have to get them and if you tell a doctor this and they fail you then change doctors until you get relief from the maddening jerking and jumping we all have.

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