aiming for diagnosis

[aprilj15]

Hi all, I had a lot of blood tests with my GP to rule a lot out, when I was referred to MSK, they suspected Fibro and referred me to rheumatology. I just had my appointment and they have said it could be fibro but because that diagnosis comes from the exclusion of others they cant be sure its not just intermittent yet, so im being referred back to msk for physiotherapy and ‘pain management’ as she found some hyper mobility in my joints, doesnt want to call it something chronic when it could pass. I feel as though I’m just being passed around without any confirmation despite multiple professionals suspecting Fibro, but no one seems willing to confirm. Any advice?

[Hazel_Angelstar Administrator FMA UK Staff]

Hi, unfortunately trying to get a diagnosis can feel like you are being pushed from pillar to post. Hopefully you will get a definite diagnosis soon

[Dinkie]

Sorry to be pessimistic but it can take years to get a formal diagnosis. In my case decades. Fibro will only be confirmed once everything else is ruled out.

Having a label of fibro doesn’t really help to be honest as the medics normally just wash their hands and say nothing we can do and discharge you back to your GP. Now if you are lucky to have a GP who understands fibro and believes it’s not all in your head you may be offered medication to help with the pain or a referral to a pain management clinic. Whenever and if a fibro diagnosis is made remember you were still the same person five minutes before the label was pinned on.

All my consultant said was we don’t treat fibro here go research it all you need is PMA (positive mental attitude). After pushing my GP and eventually putting a request in writing and following it up with a telephone consult I got a referral to Guys and St Thomas’s fibro clinic.

Fibro is different for all of us and what works for one may not work for another. Some members take prescription meds some can’t tolerate them. Diet for me plays important part but not for others. It’s all very much trial and error. On better days don’t go hell for leather and try and do all those outstanding chores - it’s all a matter of learning the art of pacing. Better days I cook double the amount and freeze the rest. I rely heavily on heat pads, tens machine, weighted blanket and bio freeze gel and my chiropractor to keep me functioning and able to work.

Hope you get some answers soon.

[Jegreen]

I was diagnosed back in Germany, ruling out other things was necessary but both the physio therapaist and the reumatoligist have confirmed through the list of symptoms and the points of pain accross the body, they had a drawing of the human body and the common pain points marked and tested me just "by hand pressure" on my body and asked me as well which areas are usually painful. I hope you can get some answers through your pain management session.

[BlueTofu]

I did the self referral to msk and suspected comex regional pain syndrome. I was lucky to get to see a Rheumatologist eventually, through my doctor. Who seemed pretty sure about fibro and Renaulds . However, when I went for nerve conduction tests she arranged yesterday (normal of course!) The man who did them said she 'suspected' and that my symptoms were caused by something other than nerve damage .Aarrgghh!

I had a female Rheumatologist and I have found women, slight more likely to believe in my symptoms/take me seriously?

[BlueTofu]

Curable App, may help try for free 14 days.As previous reply heat/cold/relaxation.hydrotherapy/osteopath/ pacing - and not getting angry with yourself at the smaller amount you can do.

Sleep vital so trying to get help to manage that.

I try to be very calm and logical when speaking to health professionals (getting my upset

out of the way before and planning on a bit of paper what to say.)

I'm trying to look at it as a practical problem I deal with day by day. I use the label of my health issues when I need to get official services/ benefits. But I think of my self as a sensitive individual, rather than burden myself with a 'life long' label.

It's almost like having a professional job of caring for yourself.

Repeating yourself, until people take on board what you are saying.

I try out suggestions of things that might help, but don't take what is said as gospel. Its what helps us as individuals, and getting any allies you can to support you. Things can fluctuate, so can improve -I have.

The 'all in your head' business is very annoying. However, stress does make everything worse, fibro or not. It's very stressful being ill, and doctors jump on that because they can't 'cure' you. Which is hard for them to deal with. That's my empathetic understanding of why my doctor insisted it was emotional?!

[Yassytina FMA UK Volunteer]

I hope eventually you get a diagnosis, like others have said it can take awhile once everything else has been ruled out, hang on in there, take care .