So sad

Sadly, I read the posts from the RLS folks . It summarizes that we're all taking various doses of the same stuff whether we're in the UK or in the USA and it boils down to a bunch of us miserable people looking for help and nothing is coming.

We desperately ask each other for ideas for new meds or new combinations of the old ones and rarely does someone say they've found the solution for themselves. I read today from oldblue that his early ventures on the new med seems to be working then a short time later, its back to the old misery. Tonight is Christmas eve and I've got company company and I didn't sleep 2 hours last night and I have no idea how I'm going to get through this and then theres tonight and more of the same no sleep and then Christmas day. Today is the first time I've actually felt that I just can't do this anymore. And that is sad and very scary.

21 Replies

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  • Hi soupy33now. Hang in there! I wish every doctor/specialist/TV and radio station could read/view this post and understand the misery we are all going through. I am almost off Pramipexole (Sifrol) and taking not much more than a pins head now as I have listened to what the people on this website have said. I am now on 25mg Lyrica (Pregabalin) and 50mg Tramadol capsule and so far it has worked but don't be surprised if I come back and plead for help again. Thank you to everyone who has help me thus far. Maybe 2016 will be the year that they will find a cure. Sally

  • Soupy33now, I have had the same problem you have but the last few years I have had the same neurologist who specializes in RLS. He has given me time released Requip and some Neurontin and only one vicodin at night and I sleep about 6 hours a night. I have had about ten years of good feeling, but if I forget just one dose I go nuts.

  • hallo Soupy. Try your best to get through Christmas. I have had this horrible condition for 40 years with its. ups and downs. I have found that if you stick to the same medication, in my case Ropinirole, stick to it whether you think it's working or not, . In the end you will get relief if not all the time. I will be keeping my fingers crossed for you.

  • Hi Soupy33-I understand the scared bit and I have only had this for 6 months. Clonazepam gets me to sleep. Have you tried it. I am also on tramadol and this helps as well. Hang in there and believe that there is always hope!!

  • Happy (?) Christmas to all fellow sufferers. I have recently had acupuncture and also started on Ferrous Fumarate 210mg tablets. It is too early to say for sure that these are helping or is it the placebo effect. I have had to take .5mg Ropinirole at least once during the day and 2mg at night; I can now go through the entire day without R. and can SIT and watch television during the evening but am reluctant to ditch the tablets at night. I will reduce the strength in stages. Will keep you informed. We are in this together.

  • I know exactly how you feel. But I have to say that using Percocet is about the only thing that gives me rest. Also I started keeping my bedroom dark, drapes over the windows and no night light and find I am sleeping better. No rest can really diminish ones ability to function well during the day. I know I have been through the past six months or so and felt like I was in hell. This past month I have started to see some improvements. No my symptoms aren't all gone but I feel they are more manageable. I went off Mirapex and that was a living hell. I am now taking Horizant and don't see it as a god given drug but at least I am not experiencing what I was experiencing. I firmly believe the Percocet with the codeine is what really helps. I am keeping a journal which I take into my bedroom at night so I can see what and when I take my meds and what symptoms I am experiencing. I am also keeping a list of foods I eat although I don't believe that most foods make rls worse. Coffee and alcohol I know do. I find that when our symptoms are bad we need to take care of ourselves and not take on as much as we normally do. I think that is so true for women. I find I feel responsible for everything and am trying to cut back on that. Praying for some relief for you.

  • Hi soupy hang in there. Just keep trying different meds, different combinations, dont give up, otherwise we might all aswell give up. Sometimes people only ask for help and rarely tell us they are doing better. I know you feel down, i am sure most of us have been there, and probably more than once. What ever you are taking right now and isnt working then see your doctor and what else he/she can come up with. Run it by us if you want to see what we think. hugs to you.

  • Carol 1948

    I totaly agree with you Soupy 33 the meds i take work for a sort time so go back to the docs he ups the dose few weeks or months later back to where i was sleepless nights its unbeavable doctors don,t seem to do anything

  • Carol1948, it sounds as if the med you are taking is a dopamine med, maybe requip or mirapex. If so, then your doctor keep upping the dose is not good. You sound as if you are suffering augmentation. Thats when those meds start to make your RLS worse your up the dose it works for a while then bam, back to worse RLS again. You need to change your med if you are taking one of those i have mentioned. Lots of posts on here on taking those meds and augmentation.

  • I guess you did not read my post re the Relaxis pad for rls. I suffered for more than 10 yrs, tried from meds to uneeded back surgery. I found the pad online, got it, am now asleep within 30 mins & stay asleep all night

  • Glad you are getting good results from the Relaxis pad. But its expensive to buy and not everyone can afford it. And only for use for people who have Primary RLS and no heart problems, if i remember rightly.

  • Don't include me in your bunch of miserable people, I suffer from RLS like other people on this web site and if it wasn't for the lovely people who give me support every day I would end up like you moaning about the situation, you just have to get on with it and make the best of what you have got. There are a lot of friends out there who are far worse off than me.

    I am now trying a product called " Ginkgo Biloba" it's a plant extract so no harmful pills or potions. I've been taking this for the past 3 months and have not suffered RLS during the past month, it has to take time to get into your system.

    They can be purchased from Holland and Barrett at £36 for 100 capsules but if you buy them on their penny sale you get an additional tub for just 1 penny making two 100 capsules for £36.01p. They come in 120mg and you only need one per day.

    My Son in Australia takes them for poor circulation and he found out by chance that whilst taking these capsules he had no more RLS and has not suffered any symptoms since.

    Try them and you may find they help your situation, but please try to have a more positive attitude towards life.

  • It depends on how low a person has got on how they are feeling. I have known many people who have felt suicidal from suffering from RLS. When someone has reached that stage then thats when support groups are at there greatest, to give SUPPORT. I am glad you are not one of the miserable bunch and doing ok. Most of us on here are still working on what works for us so inclined to feel miserable. Including myself at times.

  • I am sure Soupy wasnt intending to call anyone miserable as a derogatory comment but was referring to how miserable night after night with hardly any sleep can make a person feel . Sometimes by the time I used to get to that stage I could burst into tears if somebody so much as gave me a wrong look , so yes I was miserable! All we can do is be there to support one another and encourage people to see there doctors and keep trying until eventually they find something that helps.

  • Hi Soupy, I am so sorry to read your post .The depression caused by chronic sleep deprivation is just awful and there have been times I have felt as you do today .Unfortunately I saw this coming , when I saw the massive Requip doses it was a train crash waiting to happen. You are in no way to blame for that, the blame lies with the doctors who blindly increase the doses time after time with no regard to the consequences..This is crunch time, you desperately need to find a doctor to get you off the current 8mg of Requip and onto a strong pain med .Its the only way out of this nightmare. I am proof there can be light at the end of the tunnel its just so difficult to see it when you are so tired you can barely see a hand in front of you.

    We are all with you and please keep talking to us, sending you a hug ...Pipps

  • How dare Blokie to call us miserable people. If you constantly are unable to rest it takes a considerable toll on your health. I suffer with spasms down my legs and arms and cannot rest. Perhaps Blokie hasn,t the severe symptoms that many of us suffer. I am currently on Ropinirole patches which help a little but not always.

  • Hmm! Most people on this site will agree with how you feel (however there's always one!!) . I agree with you when you say it is scary! I am 70 and the thought of experiencing rls symptoms into my 70's, 80's and 90's if I should live that long is definitely scary. Several months ago I changed from taking 1mg of Ropinirole to one .50mg tablet and one .50mg tramadol and I must admit my rls disappeared! Then I listened to others about the addictive nature of Tramadol ,although I do not have an addictive personality whatsoever!! And decided I would stop the Tramadol 3 days ago! BIG MISTAKE. Last night for instance my legs were jumping wildly. Went to bed at 10.30pm and I had to jump out of the bed several times to experience calm much to the consternation of my partner who needed her sleep!! I decided to see how much the Tramadol was contributing to my ability to sleep throughout the night now that the office is closed until 4. Jan!!

    Well!! After getting to sleep about 6 this morning I have decided that I would not be able to cope with the rigors of running my own business without Tramadol. I haven't yet tried the Tramadol without the Ropinirole but heh my sleep is far more important than the possibilities of discontinuing a combination that is working. Lets hope it works for as long as I am alive!!!!!!!

    Happy new year and I would like to echo those comments which focus on more research for this deadly condition

    (Incidentally is Tramadol available in 25mg capsules does anyone know?)

  • It's strange that we can all read the same words yet somehow get different meaning from them. If you suffer from a life affecting condition for which there is no cure and no treatment that is sure to work you can very easily be miserable. I am all for being as positive as possible but it does get a bit wearing!

  • Hi, I agree with a lot of what you say and have felt in the past that this will be the death of me. It is torture and it's made especially difficult to cope with when you have company but don't despair. It's probably true to say that most of the people who have found some relief from RLS may not keep an eye on the forum or contribute to it. I've had RLS for about 40 years, in my shoulders as well as legs. In the early years I would pace around the house until finally getting to bed in the small hours, having my best sleep when it was time to get up for work, may boss was not very understanding of my frequent late arrival. Fortunately RLS has rarely bothered me much during the day because I have a fairly active job but i'm not looking forward to old age, when I may not be able to stay as active. I have a lot of success with drinking lots of water during the day. Dehydration definitely makes my RLS worse and it too late if I wait until I'm thirsty or I feel the onset of RLS. Drink lots of water during the day for relief at night! I also take Ropinirole. I take more than is recommended but I do get to sleep each night. I take 1Mg at 6pm, 1 at 8, 1 at 9, 1 at 10 and 1 at 11pm as I go to bed. Proper relief doesn't happen until after 10pm when I have even been known to fall asleep in front of the TV! I sometimes wake with the warning tinglings around 4am, walk downstairs for a big glass of water and another 1mg, make sure that I fully wake up and then I can get back to sleep until 8am. I have mentioned this before on the forum but I was told that I will suffer augmentation but I haven't in 5 years on this dose. However, if I miss a pill or two through not hearing the alarm reminder on my phone, I do suffer for it. I had tried many other meds, with augmentation problems before settling on what I have now.

    The above may work for you. I also have a similar regime for long haul travel.

    Good luck in your search for relief.

    Ralph

  • Hi Soupy

    After my post yesterday just thought I would let you know that after 3 nights of mostly no sleep at all I decided to add the 50mg Tramadol capsule to my one 50mg Ropinirole tablet. I had a wonderful nights sleep!!

    So having tried the Ropinirole without the Tramadol I will not be doing that again in a hurry!!

    I am aware not all meds work the dame for everyone but I hope it will provide you with yet another option.

    Good luck

  • I feel your pain. It's 4:25 in the morning and here I lay crying, frustrated and completely frazzled due to yet another night spent pacing the floor. It's gotten so bad that I've taken to "sleeping" in a separate room from my husband so we both aren't kept awake by my RLS. Doctors either don't know what to do about it or don't care. They throw a pill at you with God only knows what side effects and send you out the door. It's a never ending cycle of trial and (mostly) error. I for one am beyond my limit with it all!

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