I have just been officially diagnosed... - Fibromyalgia Acti...

Fibromyalgia Action UK
48,299 members59,911 posts

I have just been officially diagnosed with Fibromyalgia, what now?


I've basically been sent away with a leaflet, that might as well read "Congratulations, you have Fibromyalgia! Now piss off and get on with it". I'm entirely unsure how to proceed and what this even means for me. Can anyone point me in the right direction and offer some advice on what my best course of action is? I'm entirely fit to work, but my symptoms are nasty and quite debilitating and depressing at times.

Thanks for any words of wisdom you can offer x

15 Replies

Welcome to the site Ali_in_somerset I am sorry you have been diagnosed but glad you have come on board our great site. It has made mine and many others lives 100% better. We now have friends ad people to chat to who actually understand Fibro - well we all have it!

Our site offers plenty of opportunity for you to do research and find out the ins and outs of Fibro we say start by looking at

firbroaction.org our mother site and

healthunlocked.com the overal mentor. You will find research and articles about fibro ow it takes us and weaves through our bodies.

This site is fantastic to pose questions to and the members will reply or have a rant yup we all need one now and then and we listen and advice accordingly.

Do remember we are not of the medical profession and as such please always check with your doctor over new aspects/pains and medicines. We only ever speak from experience.

So looking forward to your posts.


Lucyhobbit in reply to Ginsing

Gins is right, but its fibroaction.org as the mother site, clicking on the purple butterfly on the top right corner will also take you there.

Ginsing in reply to Lucyhobbit

So right blame my vision xgins

Ask your GP to refer you to a local pain management course x


I think that was basically what I got given. I would ask if your hospital has a Pain Clinic that you could be referred to. I got my GP to refer me and the pain clinic put me on a Fibromyalgia Management course. It was brilliant!

You'll find this a great site to be on to so ask any questions you have as you'll get loads of info and support.




Hi, you are one step ahead of me, I didn't even get a leaflet. The little I do know came from here and the mother site. Best for me is here as you don't feel isolated with an illness that no one understands everybody here is willing to help if they can :)

Hi Ali_in_Somerset

I am so sorry to read that you have also been diagnosed with this horrid illness and I genuinely hope that it does not affect you too much? Welcome to the forum and I really hope that you find it very useful?

Many sufferers will get referrals to a Pain Management Clinic and / or Rhuematology so to be able to get the most appropriate medication that works well for them. As we are all unique individuals we all respond differently to both our illness and our medications so it can take a while to find the right combination for you?

Many sufferers will also attend Physiotherapy (as I do) as this is highly recommended for Fibro and some of the members on the forum go to Hydrotherapy. So it really is worth discussing with your GP what steps you would like to take?

There is one of the FibroAction guidelines that I would like to bring to your attention, if you do not mind please? And this is relating to foul or abusive language in posts, as we do not allow this. So I was wondering if you could please amend where you have written:

Now p**s off and get on with it

So if you could please insert two ** in the word it would be greatly appreciated.

All my hopes and dreams for you


I had the same leaflet & get on with it. This forum & site has been wonderful & all the people. Xxx big thanks to all.


I had get on with it. No leaflet.

I did a lot of on line research before I came across Fibroaction.

and found all of It useful

There are so many quack `cures ` and myths out there,

It taught me to always get confirmation from a site such as fibroaction or NHS before believing what I read

,Hugs sue xx

I did laugh at your post, even though it isn't remotely funny really, as I had exactly the same experience! Diagnosed by a rheumatologist, given a leaflet and discharged/told to pi** off! Have never seen a rheumatologist since, and that was 20 years ago.

But I do want to (gently and kindly) take issue with something you said - " I'm entirely fit to work, but my symptoms are nasty and quite debilitating and depressing at times". Can I just point out that these two statement are completely contradictory? You AREN'T entirely fit for work, but "can just about manage to do" so may be more accurate? You see I felt the same and carried on working and pushing myself, completely in denial that this illness could affect me severely, and eventually collapsed in a heap ... and made myself worse in the process, so that I couldn't work at all.

I don't want to depress you, but I do believe that it matters to your mental and physical health to acknowledge that you have a debilitating and painful illness, which requires that you pace yourself with extreme care or risk a flare up or downfall! You have to begin from where you really are, without denying the realities of how it affects you, and learn to celebrate every success, however small, and not waste time grieving over the things you can't do any more.

Gentle hugs.

Wow, you got a leaflet, I only got the word 'fibrmyalgia,' which meant nothing to me. Seriously though, read as much on here as you can, it will help to build a picture, but also remember we all vary in symptoms and severity, as well as attitude, best of luck

I had the same experience my Rheumatologist didn't hardly examine me I had a sweat shirt and trousers on and he just touched my neck looked at my hands and said yes it's Fibro here's a leaflet you can have hydrotherapy if it helps . You won't end up in a wheel chair so keep active .... I've had this for fourteen years taken a number of meds to keep me going I go swimming which helps reduced hours at work but still waiting for pip to come through . I have good days and bad days, pace my self and have to say No sometimes. I'm having cbt which helps but it's not a cure . Hope all is well hugs x

Hi I was under a rheumy for 2 years before they diagnosed fibro and like you I was given a leaflet to read. I went home and cried thinking where do I go from here ? over the coming weeks I got quite depressed and got reffered to and a counsellor for depression and she couldnt believe that they just give me a leaflet, and to just get on with in.but in all fairness she have reffered me for CBC therapy and give me information about local support groups in my area and, she also directed me to wellbeing at work which is a must if you want to carry on working ! however best of all was on doing my own research on finding this fab website where you can share all your aches ,pains and probs with a group of fab people who can give you so much advice and support, all the best x

Thank you all so much for your replies, which have been very helpful. I would have replied sooner, only my home computer has decided to die once and for all, so I've had to wait until I'm back in work and sneakily use my work computer!

It's both depressing and comforting to know so many of you have experienced the same thing. It seems to be one of those illnesses that even the doctors don't really have much knowledge / experience of, so they'd rather just let us get on and find our own way?

To clarify a few things - I'm 25, have endometriosis, IBS and now, apparently, Fibro. I can work and fully intend to do so (also because I have no option - mortgage, bills etc etc like the rest of us), but I am considering asking my boss if I could switch to a couple of days working from home. Does anyone know if I have any rights where this is concerned? xx

I do share your opinion about reading the leaflet and having to get on with it. ME was my first illness which was very unpleasant . I didn't know how to live with it. It took a lot of searching to start me moving towards helping myself. I developed fibromyalgia some years ago and decided I would not become a victim of another illness.

I read as many articles I could see on the net. I spoke to people in America who were in wheelchairs due to this illness. Some people have different problems / symptoms. From that I looked to see what others did to support thenself. good diet. Eat blueberries. Strawberry. Take vitamins. C and D. Ask your dctor to check your vitamin d levels. Take magnesium to help with pain. Use a Ten Machine to support pain and relax you . All pharmacies sell them now. Moving is very important to keep you motivated and support building your strength. Go swimming. Take short walks and use a hiking stick they great support for your back and posture. Drink green tea to help any water retention. Read about vitamins and diets that will support you. Listen to stories or music to relax you . Sometimes it helps to have a massage. Ask your doctor who could help you. Keep sharing your fears because others can always help. you will know your not on your own . Be positive .don't be a victim of the horrible illness. Kick back because your worth it . Many members on this site live with more than one illness there feedback to others is so embracing . You read about courage and understanding. Life is to short to let any illness over take you . Big hugs. Xx be strong .

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