Fibro?: Hey I'm hoping someone can help... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Danni25800 profile image
10 Replies

Hey I'm hoping someone can help as I get none from doctors. Firstly so you know, I have endometriosis and PCOS and have been to and from doctors some have said I have fibro some say no, I see an acupuncturist and even she said yes. I've been told there is no test is this right? How do I get diagnosed then? I often have pain sometime all over body, painful to touch me and and sometimes like now, pain goes so deep feel like it's down to bone kind of feeling. I'm constant tired and the problem is where I have endometriosis they just say that the conditions bounces off of each other. I get so much pain in pelvis and down leg and always have back pain, again some doctors put this down to endometriosis so is hard to tell. I just want to know from someone who can say whether this is common fibromyalgia or not. I don't know what else to do. Currently off work with Basitis which I was told can be linked to fibro?

Thanks for any advice !!

10 Replies
Shadows-walker profile image

Hi I was diagnosed with fibro first then everything else came into play , reactive arthritis, sjorgrens , poss lupus ,tummy issues (still being investigated) bladder problems They are talking endometriosis now , I have problems with glands , eyes , ears . The list is endless , but my many issue is fibro . My trigger was septaciuma 5 years ago.

There are test for for fibro , have you seen a rhumatolgist,if not ask for referral .

Also ask for a pain and fatigue clinic , also if your having issues with getting help to live a normal life ask for a social services visit , also disability advocate .

your still working make sure you get copy's of every meeting with your employers

Do everything by the book , our Ken will be about in a bit , he will give you all the official stuff about fibro , but from one suffer to another , be kind and gentle with yourself , pace yourself don't over do it , try not to stress , keep a diary , and be kind and gentle with your self , don't push yourself , don't let anyone tell you to exercise listen to your body your the one with this ,and nobody understands you body better than you , if it' feel like it's hurting its not your imagination , don't be bullied into doing to much now .



Shadows-walker profile image

Hi have just posted a couple of images for you to see different trigger points and symptoms of fibro. ,good luck


TheAuthor profile image

Usually (but not always) Fibro is diagnosed after testing for other medical conditions and all the tests come back negative. Then when there is nothing else they say Fibro. That is what happens in most cases when everything else is exhausted.

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you


Katt profile image

Hi, I have had various gynaecologists over the past 10 years. Some say I have endometriosis, others don't. One found suspicious patches in a laparoscopy another didn't?! However after many years of indecisiveness and me starting to get other problems I was referred to a rheumatologist who diagnosed fibro. I asked if she thought my pelvic pain issues could be linked to it and she said that there is a strong possibility. My gynaecologist however completely disagreed. I have over the years just learnt to accept the different types of pain I am in (a pain management programme really helped with this) and have finally decided not to put labels on it all. Although it is still really hard not too and always difficult when trying to explain to work what is wrong with me. I hope you find answers or at least find a way of dealing with these horrible illnesses x

MariLiz profile image

Have you had blood tests for thyroid function, possible low B12, ferritin, folate and VitD levels. All of these can play a part in causing your symptoms and they need to be ruled out first. I have underactive thyroid, low B12 and Fibro, so they can go together. Best wishes MariLiz a rheumatologist diagnosed my Fibro.

Aurorasparkle profile image


I'm sorry to hear of your health troubles.

I too have Endometrosis (stage 3) and fibromyalgia and facet joint problems along with an undiagnosed disorder affecting the tissue of my legs causing severe pain and swelling.

I remained undiagnosed for many yrs of endometrosis and was told it was all down. To fibro. I have had to operations to date tbe latest none at specialist endo centre.

I would echo the other posters and ask for ref to a rhuemy but keep in mind that you should be seeing a endo specialist at an accredited centre for treatment for your endo.

I would also ask for a ref to a pain clinic to help you manage your pain with thee right medications and support.

Sending good wishes


is devo not fibro they allways through that one at you can you give me a list off symptons and have been to neuro and how long you bin ill

SuzanneM profile image


I also started with Endo, finally got so bad begged specialist for a hysterectomy! Went private and they finally agreed it was best for me, first would only take womb and cervix but the one who did op took everything but cervix, which left me still in pain as Endo all round cervix and deep in muscle! 😕😕 So had to go back (to first specialist) to have it removed. It was at this point I gradually realised the pain was more widespread and started looking for answers, osteopath suggested it could be fibro so pestered Dr to refer me to rheumatologist in London, at the CFS/ Fibro clinic at Guys and St Thomas's. He confirmed it was fibro 😕

Keep pestering your dr to refer you. Hope you get answers, gentle hugs x

clconley09 profile image

Hello: I've had endometriosis since high school days! I finally had *EVERYTHING* removed through 3 different surgeries, the last one they found my intestine had some dying off portions due to the parts of my lining that had started to grow on it. I had the last surgery in 2000, and I was diagnosed with fibro in 2002 through a rhumatologist. After he checked me for the tender points (I had/have all of them), that's when I got my diagnosis. Take care.

Aurorasparkle profile image

Hi just to say ladies a hysterectomy is not a cure for emdometrosis as removing the plumbing does nothing as endo spreads through the pelvic cavity. It is often still present even after a hysterectomy. Xxx

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