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Fibromyalgia Action UK

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Newbie Alert

Phoenix-Warrior profile image
18 Replies

Just joined. I'm 23, a writer and I have fibromyalgia. I find chronic pain can be isolating. I wanted to hear from people like me to hopefully find better ways of managing the condition and connect with those who understand. This is me on a good pain day (and on holiday, in Vondelpark)!

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Phoenix-Warrior profile image
Phoenix-Warrior
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18 Replies

Hi welcome from Nurse Gladys Emanuel (sometimes open all hours), what have you tried so far? do you take any meds to help your pains?

Phoenix-Warrior profile image
Phoenix-Warrior in reply to

Hi there! I have tried amitriptyline, naproxen, cocodomol, CBD oil and now they are putting me on tramadol as of today. I take supplements like vitamin d, fish oils, magnesium. I used to do a lot of yoga and running (since swapped to swimming for low-impact), but I'm finding it difficult to motivate myself at the moment.

in reply to Phoenix-Warrior

Hi. I take a supplement called Forceval from my dietician along with what you take apart from the fish oil.

Have you had tramadol before!? X

Phoenix-Warrior profile image
Phoenix-Warrior in reply to

Hi! I'll have to look into that supplement. And no, I've not tried tramadol before but I'm desperate for anything to help while I wait for a referral to the pain clinic next month. Have you tried it before? X

dottielotti profile image
dottielotti in reply to Phoenix-Warrior

I have been told by my dr that tramadol literally turns to heroin in your body and she’s people die from it , she said it can cause breathing problems too. So just do a bit of research , it’s horrible the pain wishing u luck xxx

Greenpeace profile image
Greenpeace in reply to dottielotti

Hi dottielottie , no offense, but I think your Dr is needing to do a bit of work on how medications work, and stop trying to scare her patients!

Tramadol is a very good Analgesic, and it’s only when people misuse, or abuse it that it causes problems, or if they get bad side-effects, especially Nausea, or other adverse effects, but this applies to all drugs.

Many people with Fibro find it helps, especially if taken with Paracetamol. I took it myself for many years, but had to stop it for other medical reasons and to go on to Nefopam. I had no problems doing this, just stopped the Tramadol, and started the Nefopam.

I would like to say to Phoenix-Warrior to give it a try, you might feel a bit out-of-it at first until you get used to it.

Take care.

GP 😊😊

Phoenix-Warrior profile image
Phoenix-Warrior in reply to dottielotti

Thanks I'll let you know how I find them! xx

KateMaguire profile image
KateMaguire in reply to dottielotti

I’m sorry but that’s complete and utter rubbish- like any drug it can be dangerous when abused but as for literally turning to heroin 🙄😠🤦🏻‍♀️ I hardly think it would be licensed or prescribed by pain clinics and specialists who are trying to help their patients cope with debilitating pain on a daily basis. Personally I think she(your GP) needs to be reported to the practice manager at least. I think I would be wary of trusting anything she had to say about health care!

MADMUMOFSIX profile image
MADMUMOFSIX in reply to Phoenix-Warrior

I have been on tramadol 150mg slow-release twice a day almost since being diagnosed 4 years ago I honestly do not know how I would manage without it my body screams at me if I'm not on time with my next dose it really makes a big difference to the deep bone pain. I'm also on pregabalin also known as Lyrica 300 morning and night which is amazing for my nerve pain it takes the edge off at least I take amitriptyline at night 2 to relax my muscles also regular paracetamol I realise this is a lot of medication and I know no Tramadol can be addictive and some reports say these medications will shorten My Life by up to five years if my choice is living the next 25 years+ in severe mind destroying pain with my body locked up so tight I can hardly move like I was pre diagnosis or taking my meds so that life is bearable the majority of the time but my life will end 5 years early I don't really see it as a choice it is quality of life over quantity

in reply to Phoenix-Warrior

Tramadol are opiates they work by switching off pain receptors in your brain, you might find like me you need paarcetamol with them for good effect.. see how you go let us know

Phoenix-Warrior profile image
Phoenix-Warrior in reply to

Yeah I've been told to use them in combo with cocodomol if needed by my GP so will see how it goes when I pick them up later - thank you :) x

VintageMustard profile image
VintageMustard

Hello, I didn’t get on with Tramadol. I also take cocodomol, quite often at night, or only when home as it makes me sleepy, but I also have Celebrex (celecoxib) which is like ibuprofen, and also tapentadol/Palexia. The last two were suggested to me by the pain clinic and I find they work well. I’m the type of person who usually waits to see what my pain is like before taking something. Epsom salt baths are helpful.

Phoenix-Warrior profile image
Phoenix-Warrior in reply to VintageMustard

I'll have to look into celecoxib! The epsom salt baths are good but I'm spending so much time in the bath I'm starting to think I'm part aquatic now.

Stevejj profile image
Stevejj

Welcome hun hope you find somethings that work for you. I take very minimal pain relief and stick to a few natural things like apple cider vinegar and tumeric. I had to comment as love Pom bears 😂😂😂 xx

Phoenix-Warrior profile image
Phoenix-Warrior in reply to Stevejj

Thank you, I tried tumeric tea and some strange suggested concoction of oatmilk, tumeric, and ginger (gross). What benefits do you find you get from the apple cider vinegar? Hah me too! xx

Stevejj profile image
Stevejj in reply to Phoenix-Warrior

Helped to settle my stomach from ibs. Improved blood flow through the achy muscles. Tumeric I have in a smoothie concoction so it doesn’t taste so bad. Xx

MADMUMOFSIX profile image
MADMUMOFSIX

Hello and welcome to the Fibro Warriors Club LOL it's a tough road-challenging to say the least. I found the biggest thing for me was learning not to be resentful of fibro because it is part of me now I have have learnt to listen to my body do stretches everyday and accept my limitations and not feel guilty about the things you can no longer do. it's difficult because it's an invisible disease with many many symptoms that affect our whole lives and the lives of those around us but we are NOT dying! (although it does feel like it some days/weeks) we are lucky it is not terminal although we are now facing our future with fibro by our side during the 2 years it took to diagnose me I had so many different tests even a bone marrow biopsy because they thought I could have some kind of blood cancer I was so relieved I was not dying as over time I had convinced myself that that was the only possible explanation for pain in every part of my body a bit of a ramble I think sorry about that Warm wishes gentle hugs 2U you I am 45 and as my name suggests I have 6 children I've been diagnosed nearly 4 years but had symptoms for the last 11 years so raising my kids has been a tough challenge I would not have managed without out my older children helping me with the younger ones. now the younger ones are 15 it is easier 2 concentrate more on maintaining my health

dottielotti profile image
dottielotti

Well I did get in a pickle with my meds I was at the point of taking 8 codeine a day , and then it became less effective. I’ve just been to the consultant today because I have costocronitis (or however u spell it ) he was saying the problem you have I’m 39 and he called me young 👍🏻👍🏻👍🏻 was that going onto tramadol then that doesn’t work as well then you start on morphine. I think we’re in between a rock and a hard place . I hope you find you’re balance right xxxx

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