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Chronic pain

Fibromyalgia pain help

73 replies

Lionoso · 12/02/2023 11:55

I have had fibromyalgia for years, but am in the middle of a huge flare up and really struggling.
I have tried so many drugs over the years, but does anyone have any suggestions of things I haven't tried? I can't any anti-inflammatory meds due to stomach problems.
I have tried:
Amitriptyline, Noritryptiline, Duloxetine, Mirtazapine, Fluoxetine, Gabapentine.

They all either don't work or cause worrying side effects. Duloxetine worked the best but caused terrible insomnia.

I'm left with paracetamol and opiates, and we know how problematic opiates are.

I already use hot baths, massage and a Tens machine. Diet changes have never helped either.

I'm at the end of my tether a d GP is useless! Just sends me for yet another round of blood tests which show mild inflammation only.

I could cry but I don't have the energy.

OP posts:
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picklemewalnuts · 15/02/2023 21:22

Memory and amitryptiline?! What's that about? My memory is awful. As is my brain fog. Could they be caused by the amitryptiline?!

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Orangesandlemons77 · 15/02/2023 21:23

It's interesting the mention of amitryptilline and memory. I have a genetic risk of dementia, and have researched it and saw studies that long term it can be linked to a higher rate of dementia. that could have been when it was used in the elderly though.

I don't want to put anyone off it though as it can be very helpful. It wasn't conclusive either but with my higher risk anyway i'm avoiding it for now.

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backawayfatty1 · 15/02/2023 21:27

Private script for LDN which is low does naltrexone (I take 3.5mg). Not to be confused with 50mg naltrexone. There's more info on LDN Trust website or LDN Trust Facebook group. Can get a list of prescribers from LDN Trust website also. Has been the only med to help me in any way

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doadeer · 15/02/2023 21:27

The only thing that helped mine was the curable app. I took 8 coedine a day, all of the painkillers you mentioned, tried physio, osteopath, acupuncture, medical cannabis, infusions of ketamine... But after 4 months of practicing the curable techniques I reduced my pain down to a 1 or 2. It's been transformative for me.

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Topamaxtwit · 15/02/2023 21:28

Very interesting!!

I had to come off Topamax and Amitriptyline due to the fact they left me unable to do my job! It was embarrassing tbh. I was an architectural technician and then couldn't even remember my address.

My consultant apologised.

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vipersnest1 · 15/02/2023 23:03

@Lionoso, all of the comments about short term memory are very interesting, especially as that's something I have problems with.
I'm not sure how much I want to 'rock the boat' with my GP though, as so far they've been helpful.
In part, that's why I'm looking to reduce my gabapentin dosage as that might be part of the problem (but not all of it, I'm pretty sure).
I will only be able to judge it when I've reduced down.

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Lionoso · 16/02/2023 12:46

I had been on amitryptiline for many years, it helped me a lot and I put up with all the side affects, the dry mouth, restless legs, tinnitus etc. I have ME as well so always have brain fog. About six months ago I started to have problems with word finding. I had tried noritryptiline a couple of years ago (very similar drug) and remebered it caused my brain fog to worsen and made me struggle with word finding. I have gone off the Ami to see if maybe there was a link. I'm also hitting menopause so it's probably a combination of things. I have found after nearly a month of no amitryptiline my memory is a tiny bit better, but my word finding is quite a bit better.

Might just be a conincidence and I don't want to worry people who are on Ami as it helped me so much for years. It's why I'm desperate to find an alternative though, the word finding thing made me sound drunk and I was concerned about dementia. As I say it might all just be co-incidental and I suspect menopause is also partly responsible but I needed to try get off it for me.

Hope that post makes sense I'm very fatigued this morning.

OP posts:
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Orangesandlemons77 · 16/02/2023 12:53

I will find the summary of the study I saw about dementia.

www.medicalnewstoday.com/articles/321632

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Pixiedust1234 · 16/02/2023 13:02

picklemewalnuts · 15/02/2023 21:22

Memory and amitryptiline?! What's that about? My memory is awful. As is my brain fog. Could they be caused by the amitryptiline?!

Yes it could. When my mother was rushed to hospital at end of life I actually came off amitryptiline so I could remember her. I do remember her last few weeks although its hazy, if I had stayed on medication I wouldn't have remembered that part of my life at all, it would have been blank.

Of course not everyone is the same and I did get horrendous pain and no sleep but it was worth it for me. I never went back on it as I realised I was missing my children's childhoods too.

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picklemewalnuts · 16/02/2023 13:23

That's so interesting! I said they'd pry amitryptiline out of my cold dead hands... maybe they won't have to! The pain is so much better, and I sleep at night.
The brain fog and memory issue is bad though, and while I sleep I am still always exhausted.

I need to have a think. I'm on a low dose- 40mg. I could get down to 30 again.

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WoofWoofBeachLife · 16/02/2023 13:50

Hello, I really don't know what to suggest as I am in the same position at the moment. I have Fibro and ME too and was officially diagnosed in 2017. The consultant put me on Duloxetine and took me off Amitriptyline and Citalopram. I was also taking Naproxen and Co Codamol. Ive tried Pregablin and Gabapentin and they didnymt agree with me at all. The Duloxetine did help with certain bits of the pain but my mental health was lower than a snakes belly. I've tapered off Duloxetine starting in November last year and now on Sertraline. My pain is really bad, 💔
I had an ME crash and Fibro flare in May last year, I'm still recovering 9 months later and now this pain has kicked in. I am on an amazing support group and a lot of the members have had success with relief and sleep from vaping CBD. I did try cannabis and although it helped pain, it was for a very short period and I didn't like how it made me feel, very sick and out my tree lol.
I'd try anything at this moment. Hugs to you x

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Choconuttolata · 16/02/2023 14:08

Low dose naltrexone, it is a licensed medication in the UK, but may have to be prescribed off label for fibro, a private prescription is likely what you would be looking at because they may not fund on the NHS. You could ask your GP first to see if they might prescribe it.

ldnresearchtrust.org/

LED light therapy? You can get home red light devices and some clinics offer light therapy.

www.ncbi.nlm.nih.gov/pmc/articles/PMC5523874/

clinicaltrials.gov/ct2/show/NCT03677206

Hyperbaric oxygen therapy. It is also being explored for patients with inflammatory bowel disease, but more study is needed to see if it is effective for IBD.

www.dovepress.com/a-single-session-of-hyperbaric-oxygen-therapy-demonstrates-acute-and-l-peer-reviewed-fulltext-article-JPR

www.nature.com/articles/s41598-018-19670-x

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maryofthevirginkind · 16/02/2023 14:18

I take pregablin. It is a very expensive drug hence why they'll try everything else first but I'd be asking for it if I were you.

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WarmBeerAndSandwiches · 16/02/2023 14:42

Another one who takes Pregablin. I used to take Amitriptyline but I think Pregablin's better.

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Orangesandlemons77 · 16/02/2023 14:44

I also have just started pregabalin. I thought it was less expensive now as off patent but not sure.

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WoofWoofBeachLife · 16/02/2023 20:25

Choconuttolata · 16/02/2023 14:08

Low dose naltrexone, it is a licensed medication in the UK, but may have to be prescribed off label for fibro, a private prescription is likely what you would be looking at because they may not fund on the NHS. You could ask your GP first to see if they might prescribe it.

ldnresearchtrust.org/

LED light therapy? You can get home red light devices and some clinics offer light therapy.

www.ncbi.nlm.nih.gov/pmc/articles/PMC5523874/

clinicaltrials.gov/ct2/show/NCT03677206

Hyperbaric oxygen therapy. It is also being explored for patients with inflammatory bowel disease, but more study is needed to see if it is effective for IBD.

www.dovepress.com/a-single-session-of-hyperbaric-oxygen-therapy-demonstrates-acute-and-l-peer-reviewed-fulltext-article-JPR

www.nature.com/articles/s41598-018-19670-x

I looked at Naltrexone and approached my GP. He said he wouldn't give me a prescription even a private one as there wasn't enough evidence of research for him. I can't afford to go to the private chemist and don't want to go against my GP's advice.

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Choconuttolata · 16/02/2023 21:13

CBD from CBD brothers is also good. I like the white or gold one, DH prefers purple for his fibro.

We also both like extra strong hemp cream with tumeric, arnica and msm. Green People do a nice one. It is good for joints and muscles, I find it especially useful for managing leg pain.

DH also uses NSAID gel instead of oral NSAIDS due to gut issues.

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randomuser2019 · 16/02/2023 21:24

This reply has been withdrawn

This post has been withdrawn at the poster's request due to privacy concerns.

Starseeed · 16/02/2023 21:28

Have you heard of the Curable app? There’s success stories with fibromyalgia.

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backawayfatty1 · 16/02/2023 23:49

@WoofWoofBeachLife have you been through the pain management clinic? I've just completed a course and my psychologist was aware of LDN & the benefits of it. My GP also new nothing of it. I personally had already started a private script beforehand after my own research but was reassuring to know that they were aware of the benefits.

General note re cost - I paid £50 for a consultation. £22.50 per month for my script. £30 3 monthly for a script review. Much cheaper than CBD privately.

It has been life changing for me & would recommend anyone with fibro to try. Side effects while I titrated up were rubbish & it took 6 months on my full dose to get the full effects but was definitely worth the perseverance.

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Adrelaxzz · 17/02/2023 00:05

Years and years of trying all sorts. I find most pain killers don't touch the sides and I had such terrible fatigue from amitriptyline I gave it up.
Then tried acupuncture. Like a fucking miracle. Halved pain levels in a couple of treatments. Also exercise. It often kills at first and can barely move but works wonders.

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Adrelaxzz · 17/02/2023 00:06

I do have to keep up with the acupuncture and the first one made me feel rotten but then so much better

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Doggydarling · 17/02/2023 01:11

This year I'll 'celebrate' the 40th anniversary of fibromyalgia being part of my life, it started after a viral infection aged 12 and has had pretty devastating effects on my life including being medically retired out of my career in my mid 30's. I've tried just about every medication mentioned on this post but the only thing to restore some quality of life is opiates, I am prescribed oxycontin and oxynorm, take 20mg Oxycontin in the morning, 20mg at night and 5mg oxynorm for break through pain during the day if necessary. I'm actually prescribed 30mg x 2 a day but seldom take the full dose. I'm 14 years on these medications and have never increased the dose, in fact there are times I can reduce it, particularly during summer months. I also did a pain management programme that really helped me accept my limitations but taught me how to push them also. I've heard all the bad stories about oxycontin, I've watched the TV shows etc and none of them made me consider coming off it, I can live a better life on it, I can control the dose, yes there are days I have to stay in bed or need someone to drive me, I keep a walking stick in my car, another in the caravan and another in dh's jeep because I don't know when it'll flare up and I'll need assistance but these days are seldom now thankfully. Don't rule out opiates completely, they've restored some quality in my life and I'll take that any day. I'm not sure if in your post you mentioned your age when your symptoms started, I believe lots of women are being misdiagnosed when in fact it's menopause or peri menopause.

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Orangesandlemons77 · 17/02/2023 09:45

That is interesting about the opiates. I have found the stronger co-codamol helpful with pain also and without many side effects (except some constipation).

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WoofWoofBeachLife · 17/02/2023 12:00

@backawayfatty1 my orthopedic consultant referred me to the pain clinic but they responded to my GP saying I must be referred to physio first which I have struggled with to attend after the first appointment. The physio has kindly kept me on the list until 28th February in case I can manage another appointment. I'm just too drained and sore to go. I wish I could be seen as really struggling. The side effects did put me off LDN tbh. I'm a mess without duloxetine and struggling to manage daily with dogs and my DH at work. I might ask the Dr re medical cannabis. I wish I could cover my whole body in something right at this minute to give me some relief for a wee bit. Xx

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