Has anyone tried LDN to help fibro sy... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Has anyone tried LDN to help fibro symptoms?

ssarahstella profile image
7 Replies

I haven't got fibro but I have an under active thyroid so I'm on the thyroid forum. I'm on here in support of my friend that had fibro and also my endocrinologist has suggested I may have it but that's as far as we've hot as yet. What I wondered is had anyone tried low dose naltrexone for fibro and felt it made a big difference x

7 Replies
ssarahstella profile image

chronicfatigue.about.com/b/... hopefully this link will work

Maladjusted profile image

Haven't tried it, but would like to. My doctor refused as she said it was too costly for the practice and she wouldn't be happy to prescribe it. She told me to ask at Pain management Clinic. I did so and the consultant hadn't even heard of it. I then posted him a lot of information on it, and as yet haven't had any response, but at least he knows what it is now!

ssarahstella profile image
ssarahstella in reply to Maladjusted

You can get it on the NHS on a named patient basis but with it not being licensed it isn't easy like you say. It's very easy to get a private script £30 for phone call to the gp and I think it's about £20 for the liquid LDN, your welcome to private message me if you want any info your welcome to send me a private message. I only know this info due to ordering it for myself for my thyroid condition s x

wiserlady profile image
wiserlady in reply to ssarahstella

HELLO I found your post very interesting, I have underactive thyroid (take the usual med for it) and fibro, have read a lot about naltrexone helping a lot with the pain, with no side effects, low dose. Would appreciate it if you could please give me an update since you last posted about it, and where you can get this if not through nhs doctor etc, also dosages.

slowmomax profile image

I'm going to ask my pain specialist about LDN soon (no appointment date yet but GP was supposed to have referred me few weeks ago). I gave my GP info on it but don't think she read it. Will hand it to pain specialist but would be better if he had read it before the appointment... Perhaps I could email his secretary?

ssarahstella profile image

I hope you get it but if you don't and your in a position to pay for it it is easy to get hold of. I think the £30 consult over phone fee which give you a script for LDN is for 6 months, and then after that follow up scripts are cheaper.. I think. I should know this as I've not long ordered some via this root. I'm surprised That LDN isn't getting used more often for fibro x

twinklwitch profile image

Hi yeah I was on LDN maybe about 9 years ago for about 3 years, I was part of the ldn research trust and it helped but it was not easy to get , private prescription and only from Scotland (Dicksons) and it stopped working after a while so I’m back on fentanyl patches since …. But that’s me, and I have multiple allergies so please if you can get it, ask you Gp, try it, it works for some, if only for 2 or 3 years you get a respite so please don’t be afraid to ask!

It doesn’t just help for fibro by the way too, reports for cancer, als, ms and other illnesses have been reported so it’s worth trying at least best of luck x

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