Thank god for fentanyl

I have had RLS for decades at this point. I have tried it all and although Fentanyl isnt a cure, it has for the most part, allowed me to regain control over my life. It is a constant struggle but I can only pray that Fentanyl works for me for another four years at which point I should be able to retire. I am desperately trying to hold on to my career and fentanyl has been a life saver insofar as my symptoms now occur at any time day or night. Fentanyl and Oxycodone for breakthrough pain allow me to function although even with this, I still suffer pain and the tribulations of RLS. It is definitely something I would not wish on my worst enemy it is, the ugliest condition I have ever had to deal with. I wish that those who dont understand or suffer from this could really understand the horrors that go along with severe restless leg syndrome. It is truly a horrible condition and I sympathize with all who suffer from it.

22 Replies

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  • Morning Tresrazas, I empathsise with your condition, I was at the neurologist yesterday and the strongest medication she would give me was Gabapentin, which I have been on before but not for Rls. I am in pain now and yet I have to wait 7 days for a prescription for my doctor to give me, where as the care of our NHS gone? She said she wasn't allowed to give me oxycodone or oxynorm, but having being on them before I know that they work. Could you please tell me what fentanyl is and can we get it in the uk? Many thanks Jimeka

  • Fentanyl is a synthetic opiate and a lot of doctors wont prescribe it due to the fact that it is a narcotic. However it does really help RLS. In Canada we don't have much problems with getting prescribed narcotics which is good one one hand and bad on the other. I had to go into detox for three weeks to get off of fentanyl and am now back on it.

  • Hi jimeka, that is so bad that you have to wait 7 days for the Gabapentin, but you have to wait for the neuro to pass the info on to your doctor so they can write the script out. You would think they could speed it up a bit these days. You said you have taken oxycodone or oxynorm before, but cant get it now. Did they say why they will not prescribe it now, especially as it worked before.

  • Hi Elise, she has to do everything by the book. No room for being human. She gave me a letter to get my doctor to prescribe the Gabapentin but she said not to make an appointment just to hand the letter in with the receptionist and they would be in touch. I have been on it before but it didn't do anything so they put me on pregabalin but my body is so sensitive to medication when I got to 75 on the pregab it made the Rls worse. I find now that the pramepexol works on the irritability but does nothing for the pain of Rls, I have the pain all day in my right leg but she said that because I have been off it for 3 years it may do some good. When I go in for my next op she has agreed for me to have both oxynorm and OxyContin and she said that I could stay on it then as long as I needed it for pain, so I may just prolong it. Thankyou for your concern Jimeka

  • Hi jimeka, could you get some stronger pain meds on basis of your ms.? I believe that can be very painful, kiki x

  • Hi Kiki, if I want pain relief for MS I have to go in hospital and be on a drip of steroids for 4 hours, and I don't want to do the steroid route, so I am thinking when I have had the op I will see my doc and go back on pregabalin it did more for me than the Gabapentin , hope things went well with your Mum, hugs Jimeka x

  • Oh thought it worth a try didn't know meant steroid drip.Yesdoc agrees about my mum, she all set for op thankyou x

  • I also use fentanylyl and mirapex and it works. RLS is a tormenting disease that so so many people do not take seriously. I have it throughout m entire body and without meds I hinestly think I would be suicidal. I tried once to go without medication for three months, no sleep, no rest as I couldn't even sit down. If is so disheartening when the general public makes fun of it and doesn't see the torment that we all go through.

  • Hi Ruby, thank you for the info, I had a look on Google about the Fentanyl , there's no chance of me getting it over here. Sorry that you have it so fierce it is an awful condition to have. Mine is hereditary and as the generations move on it gets progressively worse in each generation. I have had it for 30 years and my daughter has started with it at 26 and gets it most nights now. You would think that in this day and age a cure could be found or at least know what causes it. What part of Canada do you live in? I lived there for 12 years in a place called Kincardine, Ontario, then Sarnia, then Sherwood Park near EDmonton. Thanks again for your help, Jimeka

  • Hi tresrazas, I am also on the fentanyl patches 2-100 mg and oxy 3 times a day, it also get me thru the day as it does you, not everyday some are worse than others and I never get a break from it I have just started the Neupro patches almost 2 weeks ago I see no difference as of yet but I just to 2 patches on Sunday so maybe that will change it up for me, my goal is to cut back on the oxy if the patches start working.

    Have a great day

    Carol :)

  • Hi Carol are the strong drugs such as oxy prescribed routinely in Canada for severe restless legs as they are difficult to get prescribed in UK.? Someone else on forum from Canada has recently been given methadone to treat rls bit I could never imagine that happening here.If so do you think this is because in Canada they take rls more seriously or have a different attitude to controlled drugs? Thanks x

  • It all depends on your doctor here you need a special licence here to prescribe opioids, I tried many drugs first then it came down to the opioids and more and more info is coming out with people having good results with opioids. They are hard to get here also and with my dr I have to sign a contact that I can't get any other meds from any other dr but him, just within the last couple years RLS has done many studies and money spend in developing a cure for it. But I also think it's different every where you go depends on the doctor and the person I guess.

  • Thanks for reply .Hope all questions ok! Do you find with time the fentanyl, oxy are less effective or remaims the same? Do people often still need the dopamine drugs aswell as opiates?Am asking as I am on opiates but only been on them about 3 months and doing really well.Thankyou hope your neupro kicks in soon x

  • I don't mind you asking questions at all, and yes I find over time the opioids do tend to be less effective and you either go up in the dose or try another you'll be able to tell when that starts to happen. Everyone seems to have a different list of pills/patches that work for them.

    Have a great day

  • Thankyou for replies fingers crossed then I get good run x

  • I also suffer with severe RLS and have tried everything I am now on percocet and it is a god send. I take 3 pills a day and my life has been so much better.

  • Glad you found something to help you, I have not heard of percocet before.

  • That's great news, it's so interesting how what works for everyone,,did you find you gained weight with taking the Percocet ?

  • It is a narcotic drug and right now it works for me, however my Dr. has said that it could change as time goes.

  • Good luck with it hope you continue to reap benefits

  • I sympathise with you

    I have tried every drug under the sun, and keep having to go back to co-codamil, despite the dreadful constipation

  • Tresrazas, I totally agree with you about this being such a horrible condition. It affects everything associated with living a 'normal' life. People really don't understand, especially when the effects on us are so hard to describe to someone who hasn't even heard of RLS. My partner of 6 years has watched me struggle, sometimes to the point of me being in floods of tears and wishing I was normal once again. I remember being able to book a table at a restaurant without worrying about how long I would actually be able to sit still to eat, I remember being able to go to bed as soon as I was tired, taking it for granted that I would soon naturally fall asleep and feel refreshed when I woke the next morning. I remember being able to visit friends or family and not even plan how long I would stay - I just stayed. For an illness with such a simple/trivial name it has so many far reaching effects and has no mercy. I hope you manage to stay in your employment, and well done for doing so thus far. Four years may seem like nothing to someone who doesn't have RLS but for you I imagine it will be a daunting prospect, a huge achievement and an equally huge relief when you do retire. I don't post often on this forum but I do read most of the posts, and I have to say that the lovely people here and their help is invaluable to me. Good luck and keep posting.

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