no diagnosis: hi i have pbc and... - Fibromyalgia Acti...

Fibromyalgia Action UK

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no diagnosis


hi i have pbc and osteoporosis for the last year i have had a frozen shoulder and pains al over my body please can someone tell me what tests are they for fibro i saw a rhumatoligist and had x rays but before having xrays she said i have osteo arthritus i am waiting for results but havnt yet had them the gastro referred me to find out if i had fibro but she said i havnt got it sory for the bad spelling and the rant xx

17 Replies

Hello there

Unfortunately there is no actual definitive test for Fibromyalgia, which is why the conditon is extremely hard to diagnose.

Many of us on the forum have waited years, sometimes decades to get a formal diagnosis.

A GP, Rheumatologist or Neurologist can diagnose Firbro. They will use the tender point test which involves the Consultant putting pressure on different parts of your body and dependant to the reaction you have the Consultant can tell you how many tender points you have. There are 18 tender points.

Unfortunately even having a formal diagnosis will not change anything. There is no cure for Fibro and it can take many years to get the right meds etc for you.

As everyone has different symptoms and different levels of pain there is no one thing that will help all of us.

I'm sorry if this sounds very negative, but it is the nature of the beast. Having a diagnosis is just the beginning of lifelong conditon that will affect you every day for the rest of your life. Some GP's still refuse to believe that Fibromyalgia is a genuine conditon so it can be a struggle to find a surgery that has an empathetic GP.

I hope for your sake that you do not have Fibromyalgia.

All the very best

Lu xx

thanks for your reply pixie i hope i havnt got it as i have pbc and cant take pain killers even the gels have a bad reaction with my liver i just wondered if it could be related to my liver disese as i am vit d deficient hope you are feeling well at the moment and thanks for the reply once again xx

You're very welcome :)

I do apologise if my reply came across as a tad harsh. I've had Fibro and several other conditions for over 30 years and it's really getting to me at the moment.

I'm so sorry to hear you can't take pain killers. Have you ever tried the Deep Freeze spray that you can buy in places like Boots? It's not like the gels that have Ibuprofen in them. Worth a try maybe?

Good luck with finding an answer. It does help to know what you are dealing with xx

hi pixie you wasnt harsh at all i dont know whats wrong with me but i can relate with the same sympoms as fibro its like all my body hurts i just want me back docs make me feel they think im a fake just need answers i keep trawling the internet and getting nowhere lol xxx

Oh bless you. Trying to get a diagnosis is a complete nightmare, and as I said can take such a long time. Usually a Rheumatologist will make a diagnosis on the day they see you. Did he/she do the tender/trigger point test on you? xx

no but asked me to move my head n felt my shoulders and examined my legs and feet she said i have osteo artritis and i had xrays done on neck back n legs havnt got rsults yet but will let you knowwhen i hear from hospital thanks for your reply xxx

Ok. It would be good to hear how you get on. Take it easy xxx

thankyou have a good night this is medicine talking to nice people xxx

had x ray results it says no osteo arthiritus just wear n tear so i must be a hypercondriac because they have x rayed my neck and back and nothing showing up it says i need phyisio and will be contacted soon xx

mason in reply to sophie666

hi sophie i was diagnosed by a rheumatolagist 10 years ago he tested trigger points he pulled my arms right back the pain was so bad then he told me i had fibro i asked what is fibromyalgia he gave me some leaflets i also have osteophorisis and severe pain in my sholder and arm .i am in pain everywhere i am lke u i cant take medication get bad side affects most people with fibro get bad side affects i am always here if u want to chat ,

sophie666 in reply to mason

thanks for your reply mason i too have bad pain in shoulders and arms with very limited movement but doc said i havnt got fibro i said good i dont want it she insisted i have ra this was before i even had x rays well we will see when results come back judging from what i read on here i think i have got fibro but im not a doc xxx

mason in reply to sophie666

hi glad to meet you ask for a second opinion it sounds like you do have fibro ,if you google 100 symptoms of fibromyalgia it tells you all the symptoms if u do have fibro you wont have all of them dont give up we are here to help you xx

sophie666 in reply to mason

i will thanks it may not be fibro but docs dont seem to know whats what but thyre not the ones suffering xxx

Vitamin D deficiency can cause severe muscle & joint pain, fatigue, malaise and so much more. Perhaps when this is righted, some of your symptoms may abate. Fingers crossed for you. Clare x

sophie666 in reply to Fennella02

thankyou claire i know this except my liver disese causes the vit d deficency so im on high doses of vit d supplements and its not really working i can only hope the doc finds something that will work uless i win lottery and go private then i think they would get me sorted lol xxx

I can see that you have been given some wonderful replies, and it is just a case of eliminating other conditions prior to getting a Fibro diagnosis. I want to genuinely wish you all the best of luck with whatever diagnosis you get.

All my hopes and dreams for you


sophie666 in reply to TheAuthor

thankyou for your concern ken this is a great site i think people think im mental when i jump in pain or my legs give way when having a normal conversation theres no warning it just happens xxx

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