finally a diagnosis : I have suffered... - Fibromyalgia Acti...

Fibromyalgia Action UK

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finally a diagnosis

Mklcc profile image
12 Replies

I have suffered with a painful back most of my adult life. Gp would give me nsaids. The last few year I couldn’t stand the pain throughout my body. Legs and hip’s especially painful. I have had several falls within the last six months. Two year ago I was referred to a rheumatologist. He diagnosed fibromyalgia. He arranged for an MRI scan which showed inflammation. He repeated the scan six months later. The inflammation was worse. Diagnosed with ankylosing spondylitis. I also suffer with osteoarthritis, 18 years ago had an operation on my feet. He said a lot of damage has been done over the years. I am now on biologics. I know it won’t help my fibromyalgia but hopefully the AS.

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Mklcc
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12 Replies
Smoggie1 profile image
Smoggie1

I'm glad you had an understanding rheumatologist and they scanned you..mine couldn't care less and not interested as he says I only have osteoarthritis.but same as yours told me 14yrs ago I had fibromyalgia and go discuss with my doctor.not offered a scan or anything..I think I would have to go private to get any help.i hope the treatments you are getting is helping..mine are bad and never know from day to day how bad.x

Flowerc profile image
Flowerc in reply toSmoggie1

same here my doctor won’t even refer me to a rheumatologist my doctor diagnosed me with fibromyalgia 2 years ago and said no need to see a rheumatologist this day and age I also have osteoarthritis in most of my joints but my back has been terrible for years lower back feels like something is slipping out cannot move sometimes as it feels like a disc is going out of place all I am told is it’s muscular got referred again to a physio last week and he told me there is nothing I can do for you what a great help I give up no help to me at all so still struggling

griffonj profile image
griffonj in reply toFlowerc

Unless things have changed since my diagnosis I thought it took a consultant to give a Fibromyalgia diagnosis.

Smoggie1 profile image
Smoggie1 in reply togriffonj

Unfortunately some doctors are a law unto themselves now since covid..I saw a physio who diagnosed me wrong and made me worse I complained..but nothing done.. so I will not see that woman if I am referred and I told the doc I have it logged.. said I had nothing wrong with knees after telling them I was in agony..

Then 3 days later in agony back at docs told I have baker's cysts come up behind both and in slow long pain with them for nearly 2yrs..

yet on another visit after having treatment on my elbow for chronic pain.. using an electric machine with a metal ball on end and gell on my elbow.. lasted just for 1 minute rubbing it over was great..

..the physio said just 3 treatments is all we can offer to help.

I said several years ago I was given 5 for same pain and it really helped it to go..thats why I'm only just back as it has started up really bad again .she said no..

I was told by the doctor..if the physio says thats it and they cannot help you any more there's nothing I can do..

So even the doc didn't care to contradict the physio..

Cotswolds25121 profile image
Cotswolds25121 in reply toSmoggie1

🤦‍♀️🤷‍♀️😤x

Flowerc profile image
Flowerc in reply togriffonj

apparently my doctor told me that u no longer have to be referred to a rheumatologist for diagnosis he did the pressure test on me and he made the diagnosis on that and what I had going on for years god knows they are in a law of there own sometimes unfortunately

Smoggie1 profile image
Smoggie1 in reply toFlowerc

Yes they are a law to themselves and consultants don't diagnose so they freeing up time... also doc here says if you don't get results from any tests .. blood ect..you have . the oweness is on you and not docs..you cannot complain they have not let you know.. so you have to chase it up ..I said would be nice if you sent us all a letter with all these changes as my memory is useless and have never been told these things before.

also my allergies are bad due to fibromyalgia and M Em now and ibs.. I used to get them for free but now have to buy.. as they are on list you don't get any more..plus loads more... I swear done days I just cannot be bothered...

Lesblackbox profile image
Lesblackbox in reply togriffonj

I was diagnosed it by my Dr following lots of tests thinking it was my hormones going thru the change? Only when all were OK, he checked various points around my body too and diagnosed it based on my test results and pain I had at the trigger points?

Cotswolds25121 profile image
Cotswolds25121 in reply toFlowerc

Hi Flowerc, I really felt for you just reading your post☹️as I do with all posts on here. It just makes me feel incredibly sad that there are so many of us who aren’t getting the diagnosis, a lot of the time for years upon years, decades even and it doesn’t seem uncommon and then when we finally get a diagnosis…. It’s such a relief, not because you want to have these painful chronic conditions but rather at least you think, now we know then we know what it is we are dealing with we can work towards getting help, support, correct medication but no☹️we are ignored, ridiculed and treated as if we are imagining our symptoms 🤷‍♀️🤦‍♀️☹️it’s all very depressing and tbh it’s just not good enough 😖😖😤sending much needed 🤗🤗🤗and empathy to you and all who understand this sadly all to well and know it to be true with the medical profession…. Except for those who do try and do everything they can to support us. I count myself fortunate to say the least that I have 1 exceptional lady at my surgery without who I don’t know what I would do xx

Flowerc profile image
Flowerc in reply toCotswolds25121

Thankyou for your very kind reply

griffonj profile image
griffonj

I understand your frustration, annoying isn't it.

Was the pressure test on various points on the body?

Flowerc profile image
Flowerc in reply togriffonj

hi sorry for the delay in my reply yes it was

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