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Fibromyalgia Action UK
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Finally got a diagnose

and its definitely Fibro. Even though I knew it was or at least I believe it was. its still thrown me in a pit of doom and despair What do I do know, how do I go about getting rid of this pain HELP PLEASE

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Hi, being thrown into despair is totally normal, as fibro is as yet incurable ...but there are meds out there which will help unfortunately is trial and error as there are many meds and its finding the ones that suit you. hopefully your GP will be supportive... If they are not find another one. Within the practice or at another. It will take time to come to terms with this and it only natural to grieve for the old you .. But with time and finding the right meds you will have a life, maybe not the one you thought it was going to be but you will have good times and bad , and we are always here for you whether you have a question want to rant or just chat

VG x

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Hi Ella,

Please don't despair - we mostly find good ways to manage our pain and fatigue, and lead pretty much normal lives.

I was diagnosed thirteen years ago, but I've had fibro since I was 32. It comes and goes, and you will cope. I'm 64 now, and am still a jolly naughty old girl, having led a very full if sometimes exhausting life.

I'm sure you will do very well if you have a good relationship with your doctor and manage to get your pain sorted out.

Keep in touch with all of us here, as we all moan, chat and sometimes laugh hysterically - it's not all bad!

Love from Moffy x

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hi im not sure were ur from but my local hospital does an 8 week course for recently diagnosed FM sufferers ,it covers all aspects of FM from how to manage yr pain ,pacing ,food, excersise,n many more topics including time in a hydrotherapy pool it was invaluable to me ,ask yr doc if there is anything like that in yr area I met other people in the same boat as me n its so good to know ur not on yr own in this soft hugs tofty xxx

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That sounds av great hospital where do ou live?

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I live in Sheffield where do you live I might have to move there

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It sure does sound like a great hospital and aftercare! Impressive! In regards to the initial post, I read that in having a diagnosis people sometimes go through the different stages of grieving. Anger, depression, loss etc. And this is normal... I try to look at this as the next chapter in my life and see what I can do to make a difference for myself and for others. It took me 5 years to realise that. Last year I decided to take on the wise words of Bugs Bunny 'if you can't beat it, join it'. I lost my job due to my illness and was going stir crazy wanting to do stuff, but what could I do from bed? On meds? Ice and heat? Not being able to travel and 'work' normal hours (let alone normal days... What are those?! '. So another fibro friend and I decided to write a children's book... For young kids and families where the parent had an invisible illness or chronic pain. We created an easy to implement system in the book to help create cohesiveness in the family unit... No matter what kind of day the parent is having. (So far, nothing but 5* reviews on Amazon!). Yes. The pain is bad. And to date I am yet to find any meds that help even to take the edge off... Other than LDN (which does work, but it's a private prescription...). Feeling (and indeed knowing) that I accomplished something not only for myself but for others too, has made me feel good on the inside... And that has gone a long way for me in regards to reducing the depression I've been in since losing my job. On top of that, I've made some amazing fibro friends for life! To the point that 23 of us met last month from all over the UK in Birmingham and we had a blast! Hang in there hon... Going through the stages of grief is normal. But know that there is life on the other side... Albeit a different one to the one you knew. It's just a new chapter in your book of life... The book is by no means ended! A. X

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Name of your book please.....family and friends dont understand my daughters illness.

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FM the invisible disease...it is a miserable existence. I exist but I don't live, just get through one day at a time. My employer, family and partner just don't get it. They think I'm just feeling sorry for myself. Shouldn't say this but if they ever get ill I will treat them the same way they have treated me....zero sympathy. I believe that FM is a diagnosis made by lazy stupid doctors who can't be bothered to find out what is actually wrong. Yes I was diagnosed with FM by these same stupid lazy doctors but how can you diagnose something you can't see??? Now these same stupid lazy doctors are telling me I have ME even though they haven't found anything conclusive in my blood tests. To be honest the blood tests are a joke as they only really check for life threatening issues. The doctors are ONLY interested in life threatening issues. I suspect that most folk labelled with FM have thyroid, diabetes or food allergy issues. Running the proper tests for thyroid, diabetes and food allergies would cost the NHS a fortune which is why they prefer to label us with FM and stuff us full of drugs. Of course they make shed loads of money selling these drugs. The truth is there is no profit in making people well....think about it. Try and stick to natural supplements, the drugs will mess you up big time. Try and lead a healthy lifestyle, avoid fluoride, junk food, smoking, alcohol etc etc. Good luck to all.

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I am sorry I have had every blood test going and been hospitalised when my liver showed up very weird readings... I nave had test after test and been tried on so many meds I can't name them all here or I would be here all day ... I realise you have your opinion as I have mine but to state that you suspect most people diagnosed with fibro have other illnesses instead could cause a lot of people unnecessary worry

I am sorry you are feeling so unwell at the moment if you are unhappy with your GP ask to see another or change surgery there are lots of GPS out there who will do everything they can to help you be as well as you can be

VG x

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I've found it really helpful to find the 9 commandments for pain and fibro. It does Google. It outlines foods to avoid. That's been the most useful thing for me to feel in control of the pain and exhaustion. The Lectin story is also a good read.....also on Google.

Finding my toxic triggers really has made a huge difference to me. No more awful IBS which set everything off.

Listening to my body and using some qi gong is also really useful. I have to work with my body now instead of fighting against it x

My main battle is finding ways to have good quality sleep. If sleep is right....for me.....the rest follows x

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I have found my ibs trigger... All Artificial sweetners ... Re sleep I don't know if you like taking meds or not but I have a combination of two and I get 7 hours sleep a night. It's taken a while to find them but they work and everything looks better after sleep...

VG x

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I certainly find artificial sweeteners are a big problem, and white bread too - I avoid them like the plague. I've tried excluding various food groups - no results at all. I don't think Fibro is a single illness - it's a complex set of symptoms which varies with the individual, so it's best to find out what upsets you personally and avoid it

Moffy

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Id diagnosed myself but hearing it from a professional was like the last nail in the coffin. the news really deflated me but this was yesterday ive spent most ot today looking at fibro websites. Does anyone suffer from muscle spasms so bad they cant walk. Thanks by the way to all the comments left at least I realise Im not on my own. I feel as though people will think its a made up diagnosis Ive already been told Oh thats what doctors say when they dont know what it is

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God Im sorry Im coming across as all doom and gloom - better not post anything for a while until I;m lifted a bit

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You're not gloomy, Ella - we all have down times! We're here to support you when you're low, but will be happy to read about your better times too!

Moffy x

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