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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:
Orangesandlemons77 · 13/02/2023 17:15

I have just been prescribed 25mg pregabalin for shingles pain to be taken evenings. I have some 30/100 co-codomol also.

I can update when I have taken pregabalin to see how it is. the co-codomol is somewhat helpful but causes constipation

I'm sorry to hear about the pain and understand how horrible it can be.

Orangesandlemons77 · 13/02/2023 17:17

Could you get a referral to a specialist? Perhaps that would also be helpful.

Pixiedust1234 · 13/02/2023 17:22

I hope someone can help you as I'm in the same position but without opiates. Even the rheumatology consultant hasn't suggested anything else despite me asking. They seem to prefer gabapentin but I cant take that. Its paracetamol or nothing.

Orangesandlemons77 · 13/02/2023 19:08

What about a referral to pain management?

headache · 13/02/2023 19:20

I’ve just been prescribed pregabalin again I’m also on dihydrocodeine when I’m really bad I take 6 a day with paracetamol and maybe 2-4 ibuprofen. I’ve found a weighted or a heated blanket helps me staying very warm helps.

Therewere5inthebed · 13/02/2023 19:42

I take Pregabalin 150mg twice daily, co-codamol as needed and I’ve just been prescribed Baclofen for muscle spasms.

i take the co-codamol 2x30/500 up to 4 times daily as required. I’ve been doing this for years now and thankfully can go for weeks sometimes without needing them but I certainly don’t hesitate to take them if I need them as they are the difference between functioning or not.

I’ve just been referred by my pain management consultant to a specialist pain clinic for ongoing pain from a failed joint replacement. It’s the pain from that that triggers my Fibro 75% of the time it takes my breath away.

Orangesandlemons77 · 13/02/2023 21:32

For the people taking codeine / co-codomol and pregabalin together does that combination cause you any problems?

I'm a bit worried about it as I have these two and it says online something about risk of breathing problems.

Thanks.

Orangesandlemons77 · 13/02/2023 21:33

I also find warmth helps- especially hot water bottle and baths.

Lionoso · 14/02/2023 09:41

I haven't tried Pregabalin, but I have tried Gabapentin, I think they are very similar.

I had a pain clinic referral in the past, they sent me to a course teaching about pain with other chronic pain sufferers. It was entirely useless and to be honest a bit insulting. I learnt nothing from it I already knew and it was a lot of patronising nonsense.

Getting my GP to do any more referrals is proving tricky. As not much shows up in my blood they just prescribe more opiates and leave it at that.

OP posts:
picklemewalnuts · 14/02/2023 09:49

Are you addressing the underlying stress , and pacing?

Also, doing appropriate exercise? Tai Chi?

I have to keep on top of those in addition to taking amitryptiline to manage.

Orangesandlemons77 · 14/02/2023 11:45

I've got benenden health care recently you have to be with them 6 months before you can get private referrals though. It's been really helpful, it is only £11 a month and included pre-existing conditions. Could be useful.

It's frustrating having pain, isn't it,

Therewere5inthebed · 14/02/2023 20:30

@Orangesandlemons77
I have had no problems at all with the Pregabalin/Codiene/Paracetamol combination. I do have the occasional glass bottle of wine too and I’m still here to tell the tale. I don’t have any breathing problems generally though.

Orangesandlemons77 · 14/02/2023 20:35

Thanks. I'm also on fluoxetine 40mg a day and a small dose of other meds too, which seems to be ok. They did check it with a pharmacist.

Lionoso · 14/02/2023 20:41

Has anyone tried both Gabapentine and Pregabalin? Which one did you find better or have less side effects? Gabapentine made me feel very woozy, tired and gave me memory and speech problems. I felt drunk on it.

OP posts:
BCBird · 14/02/2023 20:42

I have recently been diagnosed with fibromyalgia. For yearscinwasvtild itbwas suspected Lupus. I had amitriptyline and gabapentin for this neither suited me. I took Pregabalin for years then stupidly weaned myself off them and then became unwell again. I am back on them 3 times a day they help to keep suppress the aches and pains. They don't completely disappear but make things more bearable. I can recommend them. I have to show ID wen pick them up as apparently they have been re classified as a controlled drug. Good luck

BCBird · 14/02/2023 20:44

Gabapentin were awful for me. Felt sick, suggested I take them.every other day. My reply was a very firm no.

AutumnCrow · 14/02/2023 20:45

There's a thread on this board about medical cannabis that might be worth looking at. Just a thought.

Orangesandlemons77 · 14/02/2023 20:47

I have not had to show any ID, collected my pregabalin for the first time this morning. I can't say it seems to have done much but mine is very low dose compared to some doses on here.

I could choose from 10mg amitryptilline twice a day, or pregabalin 25mg twice a day.

BCBird · 14/02/2023 20:48

I must look dodgy. 🙄

DelilahBucket · 14/02/2023 20:52

I have found the fibro diagnosis a complete fob off for "we can't be bothered to find out what is wrong with you". What kind of pain are you experiencing? Painkillers are probably not the answer. At my height I was taking 17 pills a day and I have large memory gaps during that time of my life. Turned out my condition was manageable without painkillers 🙄

Orangesandlemons77 · 14/02/2023 20:52

BCBird · 14/02/2023 20:48

I must look dodgy. 🙄

Maybe it's just different rules from place to place. I'm sure you don't

picklemewalnuts · 14/02/2023 21:45

Orangesandlemons77 · 14/02/2023 11:45

I've got benenden health care recently you have to be with them 6 months before you can get private referrals though. It's been really helpful, it is only £11 a month and included pre-existing conditions. Could be useful.

It's frustrating having pain, isn't it,

Can you explain what this is, please? My mind is particularly foggy these days!

Orangesandlemons77 · 14/02/2023 21:54

picklemewalnuts · 14/02/2023 21:45

Can you explain what this is, please? My mind is particularly foggy these days!

Have a look online. It works with the NHS and you can use it if the waiting lists are more than a few weeks. for referrals and diagnosis, and treatment of some things. It doesn't cover treatment for things like cancer and heart disease though. It explains it better online if you google benenden health

vipersnest1 · 14/02/2023 22:48

I have fibromyalgia and take amytriptyline (50mg) at night and am currently taking 900mg gabapentin a day - I'm looking to reduce this back to the 3 x 100mg a day, as the increase was recommended by a neurologist, just to see if that helped some of my symptoms- it hasn't.
I can also take cocodamol or meptazinol for breakthrough pain if I need them. (Have been trialling meptazinol as less constipating than cocodamol, but it makes me woozy.)
I also use a TENS machine at times and that is great for my back pain.
I've been very lucky that the pain management clinic have referred me for medial branch blocks in my lumbar spine (a year's wait though!) but that isn't related to my fibromyalgia. I also need a bone spur removed from the spine in my neck as that's causing neurological symptoms too - another long wait.
I'm also lucky that my GP is clued in to fibromyalgia (and have had experience of other HCPs not recognising my diagnosis). In your case, I'd ask for a referral to a rheumatologist. It might just open the door to more help.
Alternatively, is there another GP in the practice who might be more open minded?
Don't be afraid to use opiate painkillers - as long as you're only using them when you really need to, I don't think you need to worry - and if you need the max dose every day, it's definitely a signal for your GP to find an alternative.
About the anti inflammatories, can you use ibuprofen gel? I'm a bit susceptible to my gut objecting if I take anti inflammatories by mouth, but can tolerate gel, and it helps.
Good luck.
Oh, and a part of your recovery from your flare will be cranking everything back to what you can manage and then very slowly increasing. Don't expect to get back to your normal for a while.
It's crap, but you'll find a way through it that works for you. Flowers

Lionoso · 15/02/2023 17:00

vipersnest1 · 14/02/2023 22:48

I have fibromyalgia and take amytriptyline (50mg) at night and am currently taking 900mg gabapentin a day - I'm looking to reduce this back to the 3 x 100mg a day, as the increase was recommended by a neurologist, just to see if that helped some of my symptoms- it hasn't.
I can also take cocodamol or meptazinol for breakthrough pain if I need them. (Have been trialling meptazinol as less constipating than cocodamol, but it makes me woozy.)
I also use a TENS machine at times and that is great for my back pain.
I've been very lucky that the pain management clinic have referred me for medial branch blocks in my lumbar spine (a year's wait though!) but that isn't related to my fibromyalgia. I also need a bone spur removed from the spine in my neck as that's causing neurological symptoms too - another long wait.
I'm also lucky that my GP is clued in to fibromyalgia (and have had experience of other HCPs not recognising my diagnosis). In your case, I'd ask for a referral to a rheumatologist. It might just open the door to more help.
Alternatively, is there another GP in the practice who might be more open minded?
Don't be afraid to use opiate painkillers - as long as you're only using them when you really need to, I don't think you need to worry - and if you need the max dose every day, it's definitely a signal for your GP to find an alternative.
About the anti inflammatories, can you use ibuprofen gel? I'm a bit susceptible to my gut objecting if I take anti inflammatories by mouth, but can tolerate gel, and it helps.
Good luck.
Oh, and a part of your recovery from your flare will be cranking everything back to what you can manage and then very slowly increasing. Don't expect to get back to your normal for a while.
It's crap, but you'll find a way through it that works for you. Flowers

That's a very thoughtful reply thank you. I was on amitriptyline for a long time but it started to affect my memory, it's improved since I came off it thankfully.

I use my TENS machine alot but find it most helpful for my back problems rather than my fibro pain.

I have to admit I have had a read of the medical cannabis thread. It looks like a viable alternative for me but wow it's expensive:(

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