Will I ever find out the answer to wh... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Will I ever find out the answer to what I have? It seems never-ending - all I want is a diagnosis, an answer - the truth.

Dragonlady profile image
13 Replies

I have been haing the problems associated with Fibromyalgia since I was about 7 or 8 years old gradually worsening every year I am now 41.

They were so bad the Drs thought I had AS (ankylosing Spondylosis) - I had an MRI on my neck and loads of X-Rays and lots of orthopaedics appointments and when they came to a dead end they sent me to see a neurologist thinking as it was so bad by now; that I had MS (multiple sclerosis).

I had 2 more spinal MRI scans but no brain scans etc.

In amongst these I was in 2 serious car accidents inc one with a suspected frontal skull fracture and broke my nose in 2 places and my right cheekbone etc (for other reasons these were not treated at the time).

I was diagnosed with Fibrositis a good many years ago, as well as depression, asthma and osteoarthritis. I have discovered that Fibrositis is supposed to be the same as Fibromyalgia but a pain specialist I saw said this is wrong ?!?!? My GP has refused to send me to see a Rheumatologist & to see a Neurologist again as its 5 years since I last did so - even though Ive been told by PALS that he cannot refuse to refer me.

Does anyone know what else I can do?

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Dragonlady profile image
Dragonlady
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13 Replies
tofty profile image
tofty

change yr gp hun and get a second opinion i just went to my doc and told him i hurt all over and felt i needed an oil can in the mornings on my joints he took blood n sent me to a rheumatoligist n i was diagnosed within three weeks .good luck soft hugs Tofty xx

jayjay profile image
jayjay

Hi Dragonlady,

You have every rite to ask your doctor to refer you to see a Rhumatoligst, if not then as tofty said i would change my GP.

It is so frustrateing not haveing a diagnoses after many years i have been there too, but when i saw the Rhumatoligst within 5 mins of him doing the test, he diagnosed me with FM

wishing you luck

sending love and gentle hugs xxxx

LindseyMid profile image
LindseyMid

Fibrositis was given as a diagnosis for what we now know as Fibro and also Myofascial Pain Syndrome.

your gp cant refuse to send you to a rhuemmy its your right, ask again or change gp

kraftyk8 profile image
kraftyk8 in reply to

Hi lally,

Sorry but that's a bit of a misnomer,

The NHS Constitution does say that 'Your doctor should listen to you and respond to your concerns and preferences about your healthcare. That way you can find out what is the best treatment for you. NHS

staff will give you the information you need to support these discussions and decisions.'

but nowhere in the Constitution does it say you have the right to be referred.

Here is the link to the interactive handbook.

nhs.uk/choiceintheNHS/Right...

Sorry hugs, kate :(

kraftyk8 profile image
kraftyk8

Hi Dragonlady,

I keep meaning to ask you if you were born in a dragon year like me and that's why you picked the name, whether you keep dragons as my daughter (another dragon year birth) does?

Anyway, AK39 asked almost the same question, that I answered, here is the link if you want to take a look.

fibroaction.healthunlocked....

happy hugs, kate :)

Dragonlady profile image
Dragonlady in reply to kraftyk8

I collect Dragons of every shape/form/description I have over 1,500 in all sorts of materials - coal, crystal, wood, resin, plaster, china, paper, stone the list goes on. Strangely enough it links to my search for a diagnosis because collecting / being drawn to dragons indicates 'a journey' and I've been collecting dragons almost the same length of time as my diagnosis search. I dont think I was born in a dragon year (1971)?

kraftyk8 profile image
kraftyk8 in reply to Dragonlady

Wow, that's fantastic! Sorry, but your not a dragon the nearest year to you is 1976.

My daughter who was born that year, keeps bearded dragons as pets.

itgirl87 profile image
itgirl87 in reply to Dragonlady

Dear,

I suggest you get your thyroid tested. There might be a problem there.

Abbeystead profile image
Abbeystead

I have been begging my GP to send me to a Neurologist for longer now than I can rember but he has always refused because I was diagnosed by a Rheumatologist with Fibro. In the end I told him I wanted to go pritvately. He could not refuse me then. Went last night and it was the best £210 I have ever spent. Told him everytime I went to GP everything is put down as Fibro and I know in my mind that there is something amiss which is not Fibro. Never had a scan or Xray. Had Fibro since 1989 when had to give up work after 40 years.

He also found my blood pressure was sky high and a recent Cholesteral test showed an increase from 5.3 to 6.4 and there again no medication has been given for this. Neurologist is going to organise an MRI which I have been begging GP for and tell him about my blood pressure. Felt like getting down and kissing his feet. This was all I wanted, someone to take notice of how bad I felt. He said investigatins should have been done to find out exactly what is causing my severe pain in leg, buzzing and dead feet. Neuro was disgested by the way I have been treated.

soulsusie profile image
soulsusie

HI Dragonlady that is comlete rubbish " Fibrositus" is Fibromyalgia !!!!

Hugs Sue x x x

Dragonlady profile image
Dragonlady

I know - I read it on a piece by the NHS and in a book by Claudia Craig Marek, but this idiot Dr Hardy (a pain management consultant) says its a different thing!!!

Daddyishealing profile image
Daddyishealing

Change your go or your insurance. Some insurance you dint need a referral. Do not let anyone refuse specialist care ever. Get a new gp your old gp is still there if you want him back so don't worry

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