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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.

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Lionoso · 17/02/2023 13:11

Well my GP has put me back on opiates for now. Waiting on some blood tests to come back before referring me back to rheumatology probably.

I'm annoyed about it but I can't cope with the pain today at all. I'm wondering how long it will take before I hear back about the medical cannabis referral, I think they need GP notes for it, so it might take ages as my GP surgery is incredibly busy.

I know I have to take them it's just so hard weaning back off them again. Too tired to fight it now.

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Lionoso · 17/02/2023 13:14

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.

That's interesting about LDN. It's cheaper to pursue privately than medical cannabis. The MC seems to have less side effects overall. Will keep LDN in mind if I get nowhere with the MC.

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randomusername2020 · 17/02/2023 16:41

This reply has been withdrawn

This post has been withdrawn at the poster's request due to privacy concerns.

picklemewalnuts · 17/02/2023 17:10

What do you actually look for? I'm totally ignorant and wouldn't know where to start.

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doadeer · 17/02/2023 17:48

I used medical cannabis for three months from Integro Clinic, gradually increasing dosage. I found it foul in the morning as it really does smell like cannabis (shock horror I know), you use a pipette and put under tongue and hold it there. It didn't really help me at all and it made me feel quite nauseous often and increased appetite which I didn't want as I'd just lost baby weight.

It wasn't for me.

But I do know some people have had success with it. I wish it had helped!

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picklemewalnuts · 17/02/2023 18:00

I can't afford increased appetite! I've lost a lot, put some back on again, and don't need to make anything harder.

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doadeer · 17/02/2023 18:02

It was also hundreds of pounds a month I should say!

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randomusername2020 · 17/02/2023 18:05

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Orangesandlemons77 · 17/02/2023 19:07

I have heard from someone recently whose GP turned down the Sapphire prescription cannabis letter.

I wonder how they decide who is eligible or not. Seems a bit unfair, the person did have a chronic illness.

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Hedjwitch · 17/02/2023 19:22

I am clearly fortunate in that my pain levels are not as bad as some of you on here. I take fluoxetine every day, and Ibuprofen during a flare. I also take cider vinegar daily and have started yoga and sea swimming to see if these things help with flexibility and overall mood . During a flare it is the fatigue more than the pain. An overwhelming craving for sleep. Its horrible. I just sleep,get up and stagger to the loo,then sleep again. Repeat until flare eases.
Hot water bottle,heated throw and hot baths also help.

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Orangesandlemons77 · 17/02/2023 19:44

I agree heat and gentle exercise can really help.

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LadyOfTheFliessssss · 17/02/2023 19:52

I have chronic pain and I buy cannabis from a dealer and get a bottle of oramorph from the GP for my flare ups.

There's no way I can afford to go down the private prescription route and I don't want it on record that I'm having it anyway.

I have cocodamol every day but it really is ineffective for very strong pain. If I keep the morphine for only the times I really need it, I find it very effective.

Not sure if that helps, but that's how I manage mine.

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picklemewalnuts · 17/02/2023 19:56

I joined a local gym with spa pool, steam room etc. I go every week, do exercises in the heat- stretching, easing.

I also do Tai Chi regularly. It's meditative, calms the mind, keeps the body flexible.

Supposed to help.

You definitely have to manage your lifestyle and get the best you can out of that. So hugely reduce stress, increase rest. Healthy diet, regular walk etc. boring but vital.

I don't use the phone unless it's essential- phone makes my neck and shoulders really tense. You have to really drill down into the detail of what hurts-like talking to my mother- and stop doing it! As least as much as you can manage!

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Pixiedust1234 · 17/02/2023 23:45

Well my GP has put me back on opiates for now.

@Lionoso can I ask what these are? My GP refuses to give me any painkillers as NICE guidelines say they aren't worthwhile for fibro, but my goodness I need something on some days 😟

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Orangesandlemons77 · 18/02/2023 08:55

I'm finding the laptop makes it worse, maybe it is the bright screen? I used to have some kind of blue light filter on it which helped a bit.

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picklemewalnuts · 18/02/2023 10:41

A local group recommends getting tested for Irlens Syndrome, if light bothers you.

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Ilovehamandtoast · 01/03/2023 08:27

I've had fibro 17 years and am currently being referred for lupus but I paid privately to see a gaslighting rheumatologist who was a Waste of money and thinks my fibro is way worse, or is long covid

I hate taking medication. Hate. But in in a spot where I'm 90 percent in bed. So over time my meds keep increasing so I'm taking tramadol, codeine, duloxetine, imipramine, thyroid tablets, I'm on antibiotics for 2 months just started, and I've to start taking omeprazole because I'm wheezy lying down and it could be silent reflux? I don't know what ride I'm on, but I wish someone would stop it so I can get off. I've genuinely had enough of this

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Hotvimto3 · 01/03/2023 08:32

Cbd oil, co codemol and codine help me. But i need a review im almost unable to move due to extreme stress

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Ilovehamandtoast · 01/03/2023 08:37

Sorry that was a very self focused post. I wish you luck and success op, hope that the tablets help 💜

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SwordBilledHummingbird · 01/03/2023 09:45

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

I was also going to suggest Low Dose Naltrexone. I'm on it for pain and fatigue associated with hEDS and POTS (was also diagnosed with Fibromyalgia but the hEDS and the POTS are the actual cause) and I've been able to come off codeine entirely.

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WoofWoofBeachLife · 01/03/2023 12:03

Ilovehamandtoast · 01/03/2023 08:27

I've had fibro 17 years and am currently being referred for lupus but I paid privately to see a gaslighting rheumatologist who was a Waste of money and thinks my fibro is way worse, or is long covid

I hate taking medication. Hate. But in in a spot where I'm 90 percent in bed. So over time my meds keep increasing so I'm taking tramadol, codeine, duloxetine, imipramine, thyroid tablets, I'm on antibiotics for 2 months just started, and I've to start taking omeprazole because I'm wheezy lying down and it could be silent reflux? I don't know what ride I'm on, but I wish someone would stop it so I can get off. I've genuinely had enough of this

@Ilovehamandtoast your post sounds like me at the moment apart from Duloxetine. It helped me but I came off it last year as my MH was bad. I'm on Sertraline now and my MH has improved dramatically but my pain has become unbearable. I have ME too. I have not much quality of life. Hugs to you x

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Eyesopenwideawake · 01/03/2023 12:07

Have a (free) chat with Debbie Allen - she works with pain management and has successfully treated fibromyalgia.

www.debbieallentherapies.co.uk/

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Knackerednursey · 06/12/2023 20:26

Delilahbucket how do you manage it?

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