Another drug to try

[Astonvilla68]

so I start LDN very soon , please google it guys it sounds like a wonder drug. I hope it works as I’ve tried everything else.

[desquinn Partner Volunteer FMAUK Trustee]

Seems to work for some but not others. Not a lot of research yet but some positive signs from small pilots. Latest study however was not great.

Good luck with it.

[Hazel_Angelstar Administrator FMA UK Staff]

I was on it for a few years, and it did help me...but did nothing for my daughter. So yes, try it but it is not a *wonder drug* unfortunately

[Yassytina FMA UK Volunteer]

I hope you find this helpful , we can only keep trying too find ways too improve our daily life’s ,good luck 😃

[Sparklingsunshine]

I think its wise to keep your expectations modest, I've taken LDN for just over a year. I started of on a very tiny dose, 0.5ml and gradulally titrated up. I now take one 4.5ml capsule at night.

Its helped with some things and I can definitely tell if I've forgotten it. I wasnt able to get on with any of the usual Fibro drugs so LDN was a bit of a last chance saloon. I would say mainly mood, fatigue, sleep and general well being have improved . Pain levels and stiffness, I would say not.

I'm very wary of anything that promises to be a miracle drug lol. In my experience there is no such thing.

[Bobthedog6 in reply to Sparklingsunshine]

Hi everyone. Just joined this group and would love to help if I can. I was diagnosed with Fibromyalgia about 15 years ago and was in a bad way and could not walk very far and was in chronic pain (as you will all know about) I was given all sorts of pain killers to try and, one of them damaged the lining of my stomach so am now on Lansoprosole. The fibromyalgia went from very acute to very manageable due to lots of exercise and healthy diet. Unfortunately, about 5 months ago I started with the symptoms again and went back to the docs. A lot of doctors do not recognise this debilitating condition so they have given me many tests including, X-rays, blood tests (lots of) and an unpleasant mild shock treatment. All to no avail as the condition is gradually getting worse and spreading. Now, I struggle to get to sleep and wake up often due to joints going numb, legs aching and twitching and burning. I have lost strength in my hands and arms so am trying to building up my strength with light weights and have gone back to the gym. I would be grateful for any advice and tips. Many thanks.

[Astonvilla68 in reply to Bobthedog6]

I would have to agree finding the right level of exercise is key . Try cold showers too not easy for well worth the effort. If you read up on it it’s good for the immune system and reduces inflammation

[HappyHealthyGirl]

Do take care with the LDN - I tried it about 15 years ago & it left me morose & quite frankly suicidal. Normally a cheerful person!

It had the same impact on my then partner too. Fortunately I had started and stopped before he tried it, so I was able to notice the lowering of his mood.

Start with tiny doses and monitor your mood - the effect was gradual with both of us, so you almost need someone to be keeping an eye on you.

Other patients of my functional medicine doc' did have a number of successes, so probably worth a try, but NOT a miracle drug, and slowly, slowly!

[Blearyeyed]

I've got my fingers crossed for you.From what I've heard from people trying it , if it works it's great.

LDN is much like all the other drugs , it's all very individual so depending on the nature and origin of your pain and tolerance depends on how well it works for you.

And like most medications you would still need to find the right self care balance to work alongside the LDN.

Good luck , Bee

[Astonvilla68 in reply to Blearyeyed]

Thank you 😊

[Anna65maria]

What's LDN please?

[Astonvilla68 in reply to Anna65maria]

low dose naltrexone 😊

[Anna65maria]

Thank you 😊

[Astonvilla68 in reply to Anna65maria]

Your welcome it sounds promising 🤞🤞😬

[Anna65maria in reply to Astonvilla68]

Can l ask who told you about this? I live in Italy and l can't see my doctor giving this to me.

[Astonvilla68 in reply to Anna65maria]

it was my neurologist that recommended it. However, I’ve had to pay for it with a private prescription. It’s £22.50 per moth so not too expensive. Dicksons chemist in Scotland on 0141 404 6545 prescribe all over Europe so you should be able to get it. An initial £50 consultation first, you will need proof from your doctor that you have fibromyalgia or what other illness you may have. Hope this helps.

[Anna65maria]

Thank you 😊

[Astonvilla68 in reply to Anna65maria]

Three weeks on LDN so far so good , it is early days still, but a slight reduction in pain already. No side-effects feel good.