Fibromyalgia Action UK

not alone

they say its in my head and i have a invisible pain but im in agony...............turns out, im not alone in this pain. No one seems to understand it or they think its in my head because its not visible. in, day out, im in agony and it just seems to get worse, i have good days and bad days but because im so strong willed........people dont see the battle i fight everyday.

I thought i was the only turns out im not alone or mad!

5 years ov pain, 2 years ov tests and still no diagnoisis........... how much longer before i get ruled out altogether.

5 Replies

change yr doctors, i got my diagnosis within 3 weeks. xx


No your not alone or mad (i thought the same), i always think "do not judge a book by its cover. Just because you cant see my pain, does not mean its not there" Hope you get some kind of answers soon

( you have had to wait so long ). When i got told i had fibro at the beginning of Dec 2011, I got a strange feeling of relief, obviously i was not glad. But i finally had some answers. It allowed me to deal with it all emotionally and take some kind of control over the Fibro and my general health, not it control me (it had been). It still is very early days, but i am making slow progress. Wishing you all the best.

Take care of you Lou


hi there old before tiime, i too like you was made to feel i was making the pain up too. this went on years till i saw a rheumatoligist who diagnosed me immediately., the relief was amazing, push your doctor to get an appointment with a rheumatoligist, i wish u luck x


Aw bless you can you change your GP or go see another one on an emergency appointment new eyes could see new things, i wish you well it is so frustrating i waited for about a year before i even went to the doctor i was so scared i was going mad or had somehing terminal i wrote all my symptons down and handed it to my G,P and she said straight away fibromyalgia and the releif was amazing(even though i had not got a clue what it was or never heard of it) but just the fact that it was not all in my head and i was not mad these things were happening, and so all the tests started like bloods, but that dont tell you anything went to see specialist rheumatologist who pressed all my pressure points and felt my fingers and legs and arms said yes it is fibro gave me a discharge letter and pamphlet on fibro and that was it your on your own!!!!! then the usual round of getting your meds right which all takes time as i am on so many that some dont react well with others so that is trial and error, but hopefully you will get sorted and get the diagnosis you need, I spoke to a lady quite few months back she was bout 70 and she said she was not feeling right told me all her symptons and i said to her you sound like you got fibromyalgia she never heard of it so i told her to see her GP which she did and yes i was right she came and saw me few weeks later and her doctor said well done me for diagnosing it so well LO who needs medical school ha ha so keep pushing to see someone else eeven a nurse practioner may help. have a good day and sorry bout the book!!! love and soft hugs Diddle xxx


Thankyou everyone, I have already been to a muscular/skel clinic and they referred me to rheumatology, all they keep sayin is its not ms,but they have no other answers. Just keep sending me for more bloods and tryin to get me to take anti depressents which I refuse.........I'm not depressed, the pain gets me down and I have a lot day to day to deal with (I'm a carer for my partner and my grandad) but generally, I would like to think my mind is happy. I have also been to see neurology,I had nerve studies done (which was agony) and now they have requested a MRI scan but rheumatology said I don't need that..........just going round in circles all the time. So now I have started keeping a diary, so I can go back with it all written down. I am 26 years of age and feel like I live in a body of a 80 year old, I was always extremely I can't even get up the stairs, this is the only group I seem to be able to relate myself to, I just want answers,I know it won't make things better but it will give me peace ov mind I'm not crazy. Big hugs to everyone x


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