ENOUGH

I know we are all in the same position but after suffering for around 15 years with RLS and holding down a full time job on at best 3 hours broken sleep a night and no solution now or in near future feel i,ve had enough, tried all available to me with no success can,t even rest in evenings watch Tv etc stood up or on all fours HATE night times.My family should,nt see me like this not nice for them, lose my temper with them maybe because no one can help but i,m lucky to have them hope they understand why im like it [ but it isnt me usually a laid back person ].I know a few nights good sleep would do me the world of good but can,t see where they would come from sleeping tablets is a no because of work etc thanks for reading.

35 Replies

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  • Hi Nick, remind us what meds you are taking right now, as something is not working for you. Were you not taking Pramipexole...? Lets see if we can help you.

  • 0.52 pramipexole and tramadol for severe back pain

  • Nick, if the Pramipexole isnt working then you need to get off it. You are probably augmenting, where that med instead of giving relief is making things worse. What is your dose of tramadol..? Honestly until you get off the Pramipexole, you will not feel better. I ask what your tramadol dose is because you might need to increase that while you slowly decrease the Pramipexole, the tramadol will help with the withdrawals. I know you are feeling rotten and it all seems too much. Please please see your doctor and say you need to wean off the Pramipexole, say its not working and DONT let them increase your dose. Dont start another dopamine med either, as your doctor may suggest that to you. No going cold turkey either. it needs to be done slowly. Get back to us after you have seen your doctor , PLEASE do see your doctor.

  • I cannot say it any differently than Elisse has. :) If you are suffering this much, Nick, the med is not working for you any more and saw other posts. You are down, sad, fed up, etc and we sure can relate, but you ARE in a position to be able to change things, and the dose of the pramipexole is higher then recommended therapeutic dose. The start dose is .125 and this med is much stronger than the Ropinerole, which can be taken up to 2 mgs for RLS, preferably 1 mg. Anyway, I am sure you are augmenting, you are at that level of misery now.

  • thanks for reply if i come off pramipexole do i replace it with tramadol or codiene phosphate these sort of meds

  • Nick take the Tramadol while weaning off the Pramipexole, you dont say what your dose is right now. You will probably need to increase the Tramadol dose. Once off the Pramipexole, which will not be easy but everyone who has done this gets through it you can stay on the Tramadol as your RLS med if you find it suits you and works for you.

    We are here to support you all the way.

  • Nick, I too suffer horribly every night from horrible almost painful restless legs. I feel like I have snakes writhing in my legs around my bones squeezing and pulling and pushing. I cannot even think when they get bad. But I have finally found a neurologist who has studied this condition and has me on 4mg Requip three times a day. YES thats a whopping dose but it works. He also started me on IV iron infusions at the hospital weekly. I go in as an out-patient and the nurses start an Iv and begin the iron. The infusion lasts about 4-5 hours. It has helped! Apparently studies have now shown that iron levels may be normal in our blood but low in our brains. The doctors know this because of research on cadaver brains. I don't know if this will help or not. I do have severe nausea sometimes with the Requipbso my doctor also gives me Phenergan to take also. I am blessed to have found him. Good luck.

  • I have to reply to you. 4mgs of Requip 3 times a day!! Yes you are right it is a whopping dose. Of course it will work you are flooding you brain with dopamine! Its will backfire eventually and then getting of 12mgs of Requip will be a absolute nightmare. !! I am sorry but i have to say any doctor who is prescribing 12mgs Requip does not know enough about RLS and that med or augmentation.

    You are lucky Phenergan works for you as its a anti-histamine and that can makes RLS worse for most people.

    The RLS experts now recommend to take no more than 1mg---2mg of Requip because of augmentation.

  • Please! Iron in the blood but not in the brain, try wearing a magnet under your cap. It's about as much use. Iron supplements via your normal five a day are more than adequate.

    The cadavers were using magnets

  • Im sorry. Did I miss your credentials? Did you graduate from Baylor AND Duke? I seriously doubt. Please look the studied on line yourself. I know for a fact that I do not absorb oral iron properly. My iron level was 4 when I started IV iron transfusions. My legs and arms were out of control misery. (I won't bother to explain to you as an ignorant individual). After sever weekkly infusions my iron level were up to 100 and my legs and arms were much more tolerable on Requip. I continue infusions per my doctor to supersatuturate . I am truly sorry that that youbfeel the need to make fun of another person in group. Its just plain wrong.

  • So, then, DeeS, I guess you have had your ferritin level checked, which shows how your body stores iron? I assume that is your ferritin level of 4 you are referring to. Ferrtin is a different test than a regular iron serum test. :)

  • Iron DOES help some people, especially the infusions. What you should have said, cedesigns749 , is what helps you. or not. I also found iron did not help me, and I had infusions, does not mean it will not help others, even if only a few. One of the very long studies being done at Johns Hopkins is on long term iron treatment for RLS. My ferritin level was a 5, we did 3 infusions, got it upt 152, 70 being the lowest number the experts want, so we got it up high enough. It all depends on how YOUR body stores iron, lots of people cannot take oral iron for MANY reasons. Just because something did not work for you, no need to be so snarky on the reply. Do not understand your remark about cadavers, but I that's ok. Even though iron never helped me, I would not go around saying to not get infusions, and you have no idea if oral iron, and there are many kinds, will even help or be tolerated by another RLSer. As always, doctors must be consulted even something as "simple" as iron.

  • would like to know where he is, for if he is near me i would love to see him

  • Roanoke, Va

  • hee hee a bit far from London

  • If you are suffering every night, the huge dose of requip you are on is NOT helping you, DeeS. In fact it is what is causing most of that, but also Phenergan, and I am only saying it because you say you "suffer horribly every night", will make 99% of us worse and I really do not think it is helping you at all in the CONTEXT of RLS. So, both your meds can and mostly will make your RLS worse at this point. Upping and upping the Requip class of meds, augmentation is typical and common and we discuss it many groups every single day. There is not one day, we do not have to address this issue on many levels.

  • Firstly- there are sleeping pills available hat do NOT leave you zombie like the next day. Ambien is a common one. You need to ask for a short half life one- that just gets you over that threshold of going to sleep and gives you some rest. Sometimes , just getting to sleep is the problem. If you still wake after the 3 or 4 hrs you could get a longer half life one. This should not be beyond the competence of eother your doctor or pharmacist .

    As someone suggested already, Phenergan has worked very well for some people and is certainly worth experimenting with. Search it on this site- there was a conversation about it sometime.

    Depending on your medication history , there is bound to be a remedy for you. Just a question of finding out .

    Good luck .

  • I definitely agree with the sleep med thing, but not the Phenergan thing. It is tops on the know list for anti nausea meds for RLS, and it usually makes 90% of us much worse. I am having knee surgery in 2 wks, and it is all over my chart for the anesthesiologist to NOT sneak in Compazine or Phenergan. For anti nausea purposes,. Zofran is the best for antinausea for people with RLS, because it does not have antihistamine properties. :)

  • I completely agree with you, but in some rare cases it has helped some people- and it was only on this rare possibility that I suggest it for the OP.☺

  • Nick - I've just checked your history and 2 years ago we went through all this. You were on Pramipexol then and got a lot of good advice.

    What's the story now ? Did you try any of the alternative meds?

    If you have pain anywhere- arthritis etc - then you should look for an opiate. The lucky ones here are getting good relief from them. Ok - maybe a bit of itching and mild insomnia- BUT NO RLS.😅

    I suggest you read back your posts and take action. I know when you are absolutely knackered you don't feel like doing anything- but there is a way out for you .

    Good luck.

  • firstly thank you for your reply yes two years have passed and lack of sleep have also built up on top off that two years ago and yes i do have arthritis in my back ranging from severe to moderate as you go down back.Lack of sleep we all know does strange things to your mind and how i,m feeling is that is this my life now go to work knackered come home knackered can,t rest once home hate bed time because i know what will happen once i lay down get up walk the lounge floor for hours nearly fall over falling asleep on my feet go back to bed as soon as i lay down there off again so up we get again watch the clock it will soon be time to get ready for work at least at work i,m not thinking about legs different day same cycle,fell asleep a good few times driving work van lucky no one hurt except grass verge and bushes,so two years on difference except two years of lost sleep on top of two years ago.Doctors not that well advanced with RLS control here was told by one doctor that 20 to 30 years ago would be sectioned.

  • I'm on 10mg oxycontin twice a day for back pain- but it also does a great job on the rls. Tramadol is another med in same family- easier to get prescribed.

    Seriously- try your doctor- say the pain is agonising and you heard this Tramadol stuff worked a treat!????

    Go for it.

  • Got tramadol and co-diene phosphate for back pain they want to inject my back both meds did make me drowsy at first but still only small burst of sleep not hours of deep sleep that's why I feel nothing is going to work it's 4.30 now and the third time out of bed and less than 2 hours sleep and waiting for clock to work around so I can go to work I know I'm not alone there's plenty of us with same symptoms but it's just built up over the years and now the wall is so big I feel I've run out of energy to get over it

  • you have a lot of options for meds, Nick and like I said earlier, it is time to get off the pramipexole, and I am worried for you. Been in that same place where every thing is a huge issue, even simple tasks seem superhuman, etc. But, this is not the time to give up, we DO have lots of ways to help, to get you off that pramipexole, and the way you are suffering, have to say it again, augmentation is ruining your thinking and your every day life, so time to get charge and make some changes. When we feel like you do, been there and done that, the tunnel seems long and dark, but I CAN see a light glowing for you at the end, as far as ways we can help you change things up, med wise. Just noticed you do have tramadol, it will work better after you get weaned off that "prami". Augmentation from the dopamine meds can cancel out the good meds like tramadol. You need to push on that, ask the doc to let you take a higher dose of that, while getting off the prami. Your brain is going to miss that extra dopamine and temporarily the RLS is going to get worse, hence why the added tramadol will be needed, and a sleep med would not hurt. Just for a wh ile, if you do not want to take one long term. I have been using an old sleep med for 15 yrs, and skip them a few nights a month, so they keep working. You need sleep Nick, and though you are exhausted, it is time to fight for your life and the quality of it that you deserve and want back!

  • I feel for you. I went through a period in my life several years ago where i would quit breathing when I went to sleep. (Not normal OSA) I literally couldn't sleep anymore and I dreaded going to bed each night. When I would fall asleep I would immediately suddenly awake gasping for air. I felt like I was being tortured. The stress of no sleep finally caused me to go into a depression. I believed at that time my life was over - nobody seemed to have an answer for me. I lost 1/4 of my body weight during that time and nearly lost my job.

    Once I began treatment for the depression it somehow slowly helped my breathing issue too. Nobody was expecting that. I finally returned to health after about 2 years of severe health distress.

    My point is there is an answer for you. If you don't have the energy to keep searching ask those that love you for their help. Hang in there bud - you'll eventually get through this.

  • Nick, I am so sorry to hear of your agony. It's there in your words and I sympathize. I feel your pain, literally. Would an antidepressant help? I get the feeling your patience and endurance is running out and you need help. I'll pray for you. I could say hang in there, but believe me I know that hanging in there is what you're doing, and if you had to hang any more, you would be all stretched out. Take care and know you're not alone. Don't let the alone feelings you get with this get the best of you. I know, as we all do, it's a demon to deal with. Please hang on.

  • Oh Nic the turk, that sounds so helpless, and i dont think you should have to cope with sleep deprivation, does you gp know this. I had sleeping pills for years and got up every day with no after effects, speak to you doctor you cant go on with this, you can get the right pill

  • thanks for reply doctors are struggling because they know so little about RLS like us all will try to see it out we can all wish for a rest from this curse thats been placed upon us

  • Nick, i HOPE you are going to see your doctor. Take my advise and see your doctor about getting off that pramipexole. We know many doctors dont know too much about RLS, thats why those who do and have a better knowledge are here in this forum to help people like you who are struggling. With what we advise you to do, you CAN do this. Please tell me you are going to take control and see your doctor.

  • i know Nic, but take the info to your doctor i did, and she is going to study it, try anyway, anything is worth the chance f it helps you

  • Nick ,I won't add anything more med wise as Elisse and Nightdancer have said all I would say on augmentation etc apart that I would recommend Ziplicone as a short acting sleeping pill which doesn't leave me feeling hungover the next morning.

    I would ask where you live and I will ask around on multiple RLS groups to see if I can find a doctor with RLS knowledge

    Hang in there Nick we are all routing for you

    Take care Pippins2 x

  • thanks for your kind words i,m form somerset england post code area TA6 got appointment on the 20th dec and going to come off pramipexole but not looking forward to the task maybe ask doctor to sign me off work for a few weeks to get a pattern going been awake since 1 this morning and being a postman at this time of year im shattered dead on my feet easily upset and snappy to say the least i,ll keep a update on how i get on but the 20th seems a long way away to far away

  • So glad you came back on here Nick and made a appointment to see your doctor. Good idea on asking for some sick time off while you start off the weaning.

  • Think I'll need it a total of an hours sleep last night now waiting to go to work with eye lids like lead weights and a body which feels like I've been in the ring with mike Tyson keep plodding on and hope to get through the working day and no rest on Saturdays work again

  • Hi Nick..I've used prescription Co codamol for a long time . I won't use dopamine meds . it usually works well . sometimes a bit hungover the next day but nothing I can't cope with X X X all the best honey X X stay strong!

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