Fentanyl: I suffered with RLS from age... - Restless Legs Syn...

Restless Legs Syndrome

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Fentanyl

sortean profile image
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I suffered with RLS from age 30 until I turned 60. I used to have to stay awake every night i order to attempt to alleviate the nightmare pain and non-stop movement in my legs.

It became so bad I felt I couldn't go on with it much longer and had thoughts of ending it all.

I then was referred to Wrightington Hospital near Wigan and the consultant suggested I try Fentanyl. They weren't keen on subscribing Fentanyl as it can have sever side effects for people who aren't used to such a powerful narcotic type drug. Fortunately, because of other health conditions I'd been taking Tramadol and my body coped nicely with Fentanyl.

Within a few hours of placing a 50mg Fentanyl patch on my upper body, the RLS stopped. That was 10 years ago and the only time the RLS returns (with a vengeance) is if I'm late changing the patches. Patches must be changed every three days and it really does pay not to be late swapping them!

Obviously Fentanyl won't be the answer for everyone, but it certainly works for me.

Kind regards,

Bill

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sortean
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Madlegs1 profile image
Madlegs1

Oh yes - Fentanyl will definitely do a job on the restless legs. It's about the strongest painkiller commonly available and should only be for very severe pain. ( end of life / cancer/ post op.)

I hope you never have to come off it.

😎

sortean profile image
sortean in reply to Madlegs1

Hi... Consultants have told me that I'll have to stay on the drug indefinitely. Fortunately, I've had no side effects at all. However, the doctors did tell me that Fentanyl, in some cases, can shorten life-expectancy. I'm willing to accept that as I couldn't have lived with the nightmare symptoms for much longer.

Seems more and more sufferers of RLS and Fibromyalgia are being successfully prescribed Fentanyl. I also suffer from CFS/ME and it does appear that all these symptoms are , in some way, connected with each other. The CFS arrived after a severe bout of pneumonia that almost finished me off.

Graham3196 profile image
Graham3196 in reply to sortean

Try the FODMAP diet It might let you enjoy life for another 20 years. AND the diet might be a bit restrictive but its better than the alternative IF it works for you. Not much trouble to try it out Search this forum for references to it and that will inform you.

Good Luck

I hope you write back in 3 months to report 12 hours of sleep every night.

If the FODMAP diet is only a partial relief than there is a Low Chemical Diet from The Royal Prince Alfed Hospital in Sydney Australia. It has completely suppressed my RLS symptoms (unless I stray from the straight and narrow)

Cheers

Graham

savannah240 profile image
savannah240 in reply to Madlegs1

This has always helped me. Now all of a sudden my Dr wants to take me off it.

Madlegs1 profile image
Madlegs1 in reply to savannah240

I'm sorry to hear that. What alternative are they offering you.?

Ask them what protocol they are following for getting you off it?

It took me 18 months to get from Duragesic 70 down to zero. And it was HORRIFIC 🥵🥵🥵

You can cut the duragesic patches into smaller pieces and apply on a daily basis, making sure the dose is also cut by a third!

At the end, if you are still with us, you should be getting Clonidine and valium to help with the final weeks.

I'm reckoning you will still be needing an opioid anyway, so I can't see what the fuss is about, except a kneejerk reaction to official PCdom.

Mind you, I'm 73 years old, and not too worried about length of life, and am on oxycontin 25 per day.

If you are under 40- 50 yrs old ,then it may be of more concern.

All the best.

Have you checked with Dr Buchfuhrer on

rlshelp.org

??

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