Fibromyalgia Action UK
40,197 members52,301 posts

is this fibro?

hello and thankyou for letting me join your group.

I have suffered for about the last 10 yrs from extreme tiredness and muscle aches and pains.

some days I really struggle to function and I find the everyday tasks almost impossible.

I have trouble sleeping and I get anxious.

I have lost hearing in one ear and feel overwhelmed in crowded rooms with lots of background noise if someone is talking to me I have yo concentrate hard to understand them.

my pain is constant every day something hurts but it flares up worse from time to time at one point I was on gabapentin, tramadol, morphine mst tablet and oramorph the pain was so bad and nothing appeared to work.

im now just on amitriptyline with painkillers when needed.

im frustrsted because ive been like this so long I feel I need help its getting me down.

I have seen a rheumatologist and she said my inflammation markers were up. gave me an mri scan and xray heard nothing back so im guessing it was ok.

they basically said we dont know your a mystery and we will just keep an eye on you.

I also have lost hair its very thin.

I just want to know whats going on why I feel so terrible and why I cant live my life normally. it does make me feel down I just feel like im trying to convince drs there is a problem.

I have recently been diognosed with ibs and irritable bladder.

I personally believe I have fibro it all seems to fit but why dont the drs?

sorryto go on I just dont know where to turn anymore :(

5 Replies

its also joint pain in knees wrists ankles hips back and neck. some nights just laying on my hip in bed is so painful :(


Hello Ellie-may,

Welcome to the FibroAction Community,

If I may, at this stage it may be too say, sorry I cannot be more helpful. Some of your symptoms sound like Fibro, however Fibro is diagnosed usually after many tests using a method of excluding all other possibilities which is sounds like your Doctors are trying to do at the moment.

Please do check out our website and read our 'All about Fibro' range for the moment so you can see what if any symptoms may be similar plus we this factsheet 'How Fibro is diagnosed?' may be of interest;

Fibro is not inflammatory so would not show up on markers for this. This doesn't mean to say it isn't Fibro as you may have a primary condition (showing inflammation) with secondary Fibro. Of course, this may not be the case at all either and it may be something completely different causing your symptoms.

This information about 'Knowing your diagnosis' in our Expert Patient Range may be interesting;

Have any Doctors mentioned Polymyalgia Rheumatica (PMR)? I'm not a Doctor but I thought due to the inflammatory markers you might find this of interest.

Please do keep us updated and feel free to come chat as we've all been through the long process of tests before we were diagnosed too. So we know what it is like not knowing.

Stay strong

Emma :)

FibroAction Administrator

1 like

Hi Elle-may

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I am so sorry to read that you are suffering in this way, and I genuinely hope that you can get a diagnosis one way or the other just to help you find some resolution and relief to all of your pain.

It looked like you were on some very powerful medications? These in themselves can cause horrendous side effects that create pain, fatigue and disturbed sleep patterns. It may help to keep visiting and discussing your issues with your GP, and take a friend or family member with you so they can back you up?

All my hopes and dreams for you

Ken x

1 like

Sweetheart, you may have fibro, but my bet is lupus. Have the doctors check you for both. I hope this helps and you get some answers and a diagnose soon. It's so frustrating not knowing. If I can help answer any questions just let me know. xxxx Mitzi


Fibromyalgia is normally an illness diagnosed on exclusion of other disabilities I thought? Has lupus and EDS3 been ruled out as well?


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