Severe RLS

[Gail1960]

Hi all, I’ve been on a 3 year journey off morphine with the help of a substitute, buprenorphine, gradually decreasing to a final dose of 0.2mg on Sunday. The last two nights have been hell, culminating in a bottle of tonic water, 60 mg amitriptyline and 10 of diazepam over a 4 hour period last night. Finally crashed at 1.30am after basically kicking everything off the bed including my puppy 😂 waking at 5am and couldn’t get back to sleep, I’m dreading this evening. I have prolapsed discs at C5-C6 and C6-C7 and severe spinal stenosis and am on the waiting list at Kings College Hospital for an op to remove the vertebrae and osteophyte that’s pressing on my spinal cord. I also have facet joint disease of my lower back and the RLS is just making the pain unbearable. I’m literally at my wits end. Any suggestions would be great. Thank you, Gail

[Doversoul]

Sorry to hear of the severe conditions you have to endure. I cannot comment on the drugs you are taking as they are to help you with your daily life. However, amitriptyline isn't an advised medication for RLS relief. ( It's regularly prescribed by GP's for RLS). There's plenty written on the matter on this site to confirm.

[Gail1960 in reply to Doversoul]

Thank you so much Doversole, I’m going to try without it tonight, I’ve got a phone consult with my gp this afternoon to see what they can advise, I’ll definitely look up the amitriptyline on here. I think it was a case of just try anything to get to sleep! X

[Joolsg]

Hi Gail,

Morphine withdrawal can cause severe RLS but amitriptyline is known to make RLS 1000% worse. Tonic water won’t help at all.

Buprenorphine is a new treatment for RLS & the dose you are on should control RLS but as you’re still feeling withdrawal symptoms it may take a few days/weeks to settle.

Magnesium can help.

Avoid all ‘sleep’ meds like Nytol, Night Nurse & sedating anti histamines as they all worsen RLS.

Alternative remedies to try include very hot baths/showers/ compression socks/ menthol heat rubs.

I hope it settles soon.

[LotteM in reply to Joolsg]

I second Joolsg re the amitriptyline and withdrawal effects from the morphine. It is not completely clear whether you are still on 0.2mg of morphine. Or that you have stopped the morphine altogether and now take 0.2mg (the standard starting dose) of Temgesic/buprenorphine.

The buprenorphine on its own should help, as it is a very powerful opioid. But given your back problems you may meed more. Discuss with your doctor!

Also, if you had RLS prior to your back problem, iron may be a factor. Do have your bloods tested and make sure it included also hemoglobin and especially ferritin. For people with RLS ferritin should be high, preferably above 100ng/l, whereas anything over 15 is usually normal. If ferritin is below 75, consider taking an iron supplement. You don't need a prescription, but it os wise to know you blood values before you start. If you take iron, go for iron bisglycinate aka gentle iron and take every other evening on an empty stomach (eg before bed). Taking it mire often does not raise iron values faster, but does cause more side effects, specifically constipation. The the RLS page of Johns Hopkins for more info on iron. Also on rls-uk.org.

I hope you will soon het a better grip and do not have to experience such dreadful nights again. I have been through many, I know they'll pass again, but I don't want to experience it again. Sheer horror.

[Jumpey]

Hi, I'm so sorry you are suffering. I agree with the others the amitriptyline exacerbates RLS.I took it once and the symptoms were horrendous. Without it your RLS may be bearable.

Also do you know your ferritin level? It may be worth getting a blood test to ensure it is at least 100. Hang on in there. Sending love.x

[Hidden]

Sounds horrific. But if you are on the waiting list for disc removal etc then I don’t understand why you need to be off your pain meds before it’s done though I can see why it’s good to be on lower doses.You wrote about a final dose of buprenorphine ‘on Sunday’. If that means last sun so you are on nothing for RLS npw except amitryptilline and diazepam which won’t work and are likely to make it worse then I would discuss with your GP about staying on buprenorphine just now but off the other 2 unless there are other reasons they are prescribed like eg muscle spasm from your spine disease.

Buprenorphine is a pain killer but also I understand now a specific treatment for RLS.

Good luck.

[Renaul]

Bumper orpine is also known as Temgesic and works miracles with the symptoms of RLS. I suggest asking to increase the Temgesic until it works for you.Read the threads on here about the use of Temgesic and all the recent research.

It has changed my life in two weeks.