Desperate

[adeleoliver]

Buckle up for a long one. My mum is 57 and has suffered with RLS since she was a child but it got really bad when she was around 30 and pregnant. I think it settled down after my sister was born but has gradually gotten worse. I know probably over the last 2-3 years she has been really struggling and it has consumed her every waking moment. No sleep, can’t sit still, in tears sometimes and often talks about ending her life, memory is starting to get worse (I believe from lack of sleep and the fact this is emotionally taxing on her), impacting her relationship with my stepdad, etc. She started on oxy earlier in the year, maybe April/May and it has given her some relief combined with stillnox, she is able to get about 6 hours sleep a night. Her restlessness starts like clockwork around 1pm and at around 4pm she has to have CBD oil or half a joint to stop the pain. She will also sometimes get up in the middle of the night for a quick puff. She got shingles in March and has been really unwell ever since. She has been in hospital for the last 3 days with 9/10 pain in her shoulder blades and breast bone, can’t eat without serious pain and nausea, was tested for all sorts of things including any issues with gallbladder and everything came back okay. The doctor suggested endep but mum is scared it will augment her condition. We are not sure whether the shoulder pain is related in anyway to her RLS. I suggested a while ago it may be daytime withdrawals from the oxy as she only take the oxy at night to sleep (it’s 15mg slow release). She is at her wits end and so are we. I have experienced oxy withdrawal first hand and when the sickness and the pain started it was the first thing I suggested. She is very conscious of the danger of oxycodone and addiction and she does not abuse it. No doctors can give her any guidance or any real suggestions on where to go from here but she is flat out trying to get through the day every day. I haven’t said this to her because she is not doing well mentally and emotionally but I actually think an anti-anxiety/anti-depressant might be a good idea for her to use while we try and get everything in order for her. Just to help her cope. But I know there are several drugs out there that are just going to make her condition worse.

I’ve got a few questions for you all:

- have any of you used endep before and has it aggravated your RLS?

- if you take oxy for your RLS, do you take slow release 24/7 or do you take a fast acting as needed?

- I have never experienced RLS but any information you can give me is helpful. I am not a medical professional but trying to get educated so I can try to understand and help.

Thanks everyone

[LotteM]

Hi. Well done for giving your mum's story and asking good questions. I have never taken endep (amitriptyline), but I know from reports here on HU that it will make RLS worse for most of us.

Like your mum I am 57 and female and I also take oxycodon slow release at night for my RLS (10mg). My situation is better, I 'only' have very persistent daytime fatigue and some general restlessness during the day, especially the afternoon and evening.

Re your suggestion that your mum's daytime symptoms may be withdrawal, there is a simple way to find out. I did this myself just over a month ago. Suggest to her to take a daytime dose of oxycodon, for at least one week. After I had done this (to no avail in my case) I wrote to Dr Buchfuhrer for further suggestions, and he confirmed that indeed taking a daytime dose is THE way to test whether it is withdrawals. Of she feels reluctant, let her start with a lower dose, of e.g. 5 or 10mg only.

Te other suggestion I received from Dr Buchfuhrer was to change to 'normal' oxycodon, as it will be cleared from her system much faster. It didn't work for me either, but may work for your mum.

I wouldn't suggest antidepressants, as most (= almost all) will make the RLS worse. And she is probably not depressed in itself, it is most limely a result of her physical situation.

Maybe switching to another opoid will help, but I don't know enough to suggest one. You may want to email Dr Buchfuhrer to get an advice: [e-mail].

I hope your mum gets better soon!

[Shumbah in reply to LotteM]

Thank you from Adele’s Mum

She has worded my story well 😥

[LotteM in reply to Shumbah]

She sure has! Great daughter.

[Madlegs1]

When I tried oxy 10 just at night, I had withdrawals ( rls and hangover effects) so tried oxy5 in morning, which still wasn't good enough. Finally got permission to try Oxynorm 5 in addition to Oxycontin 10 . That is a total of 25 mg of opiate per day. Working perfectly for about 2 yrs now. Occasionally get the fizzies at night if I've been triggered-- ice cream, alcohol, msg in some of it's 200 forms 🙄.

Definitely get away from amitriptyline-- 99% cause of rls.

The argument against taking short term oxy, is that it will be more likely to induce addiction, due to constant highs and lows. There is far less risk of that with the continuous form. Although ,for some people, it does not last the 12 hrs claimed( just look up the class action in USA)

Dr B is happy with under 30 mg pd, especially for us older geezers. Of course, your Mum is only a pip of a gal, and might come under different rules!

I'd look at ferritin levels and diet, before going too far down the line of heavy medications.

Read through the last few weeks of posts here and pinned posts.

Also good QnA section in

rlshelp.org.

Good luck.

[Shumbah in reply to Madlegs1]

Thanks Adele thanks Madlegs

I try not to complain but yes this a horrid journey so glad to have my daughter to help me out 😘I am not depressed it is just the symptoms . Madlegs I know you will understand how much time we spend researching not enough hours in the day . I truly appreciate everyone’s support .

[Hidden in reply to Shumbah]

Shumbah, I am sorry to hear of what you are going through. I have tried to respond to some of your other posts, but I haven't realised the full extent of your situation until your daughter. articulated it.

I'm afraid I can't offer any meaningful suggestions. Your situation seems complicated. You have RLS, but also appear to have other issues which may or may not be due to the opiates you've prescribed.

I hope the suggestions that Lotte and Madlegs have given have helped.

You have my sympathy and best wishes

[Netball-50]

What a nightmare trying to get this condition under control I get more help on here than any GP I don't know where else to turn but on here for my RLS advice. Sounds a nightmare your poor mum. Emailing the expert Dr buchfurer the main man is a good bet. Good luck hope ya mum gets some relief soon xx

[Parminter]

I would suggest you go rlshelp.org and send this entire story as an e-mail to Doctor Mark Buchfuhrer of Stanford. He is one of the very best experts.

There is a portal in the site - which is the Southern California RLS Support Group, connected to Stanford University - which you use to communicate with him. He answers every e-mail within a day or two.

He can at least direct you towards possible solutions. He is an academic, a researcher, and a clinician, and he is totally up-to-date.

[Hidden]

Only just catching up with this story, and i also agree with getting in touch with Dr B. (where else can anyone email a RLS specialist and get a answer thank goodness for Dr B.) i hope you get some relief really soon Shumbah.