The path to diagnosis

[Rheadster72]

Hi everyone. I have not been diagnosed with fibromyalgia however I have see numerous specialists for the many individual symptoms I have.

I just wondered who tends to make the diagnosis in the end - does it tend to be a rheumatologist mostly or neurologists or some other specialist? I would like to hear your experiences on the path to diagnosis. Has it been as frustrating as I am feeling?

My symptoms include:

Peripheral neuropathy

Back pain (mostly middle and upper with stiffness in lower and neck)

Tinnitus

Fatigue

Pain throughout my legs

Feet/hand pain although that feels more like arthritic pain

Constant indigestion

Headaches

Forgetfulness

Irritability

Over sensitivity to general noise (traffic or groups of people chatting)

Does anyone else have all of these symptoms?

[Dinkie]

Hi Rheadster and welcome. Personally I was diagnosed by a locum rheumatologist after many years. Fibro is only usually diagnosed when all other avenues have been explored and drawn a blank. Some of the members have been diagnosed by their GP but generally I would say the majority have been down the rheumatology route. Regarding symptoms, that's a difficult one. Fibro is different for all of us and what one person experiences isn't necessarily what someone else will have. To be honest my symptoms vary so much from day to day it's difficult to list them. The same can be said for medications/aids etc - what works for one may not work for another. Also many of us have other conditions so it can be difficult to distinguish what is fibro related and what isn't. It's very much trial and error. Personally I can't take prescription drugs so I have to manage with other things like epsom salt baths for muscle pain, vitamin D (many of us are low in vit D so regular blood tests should be done), various supplements, sugar and processed food free diet and gentle exercise. Sometimes use hypnotherapy and chiropractor when funds allow. The best advice I can give is keep a diary and record everything and write a list of questions for your appointment so that you don't forget. Fibro fog seems to appear every time we visit the medics and you may find you forget all the questions you want to ask until after you step outside the consultation room. Hope this helps

[Rheadster72 in reply to Dinkie]

Thank you so much for taking the time out to reply. Much of this sounds so familiar. My journey started 2 years ago and because of the job I do I meticulously listed all my symptoms with frequency how much each affected me on a 10 point scale etc - at least 2 of the Drs made the suggestion I was "an anxious individual"!!

I am managing with low dose amitriptyline and trying to take each day as it comes, exercising when i feel up to it and resting on days I am struggling.

All in all, whatever it is I have, it isn't easy some days but i try and stay as positive as i can.

Thanks again for your reply.

[skit in reply to Rheadster72]

Welcome to the forum, plenty of advise /opinions to read . It was a Rheumi that did all the tests but actually an orthopedic specialist that 1st used the word to me. 'I think you may have Fibro see your GP to get to rheumatology ' My concerns like Dinkie vary day to day sometimes hour to hour!

[Rheadster72 in reply to skit]

Thanks for the reply. There is a good rheumatologist near me who has a private clinic. I think I might pay him another visit to see what he thinks. Fed up of waiting months and months to see various specialist and getting no further ahead. Everything coming back mostly normal. Many HCPs look at you like you're mad!

[Hidden in reply to Rheadster72]

Hi hope you get a diagnosis soon. A rheumatologist diagnosed me and then referred me back to my Dr!! Please take care Lynne

[AllthatGlitters]

Hi my GP diagnosed me after looking through my notes, I had been to a previous practice for years complaining of flu like sunrooms, soreness, being tired all the time, sore skin, forgetful etc ..... hope you get a diagnosis soon x

[Hidden]

Hi Rheadster. I was recently diagnosed by one of the GPS in the practice. I had been attending regular appointments with another GP asked her what she thought was wrong. Her response we don’t like to put a label on it. Changed appt to another doctor who looked st my notes asked questions and when I finally said my fingers feel swollen, (even though they’re not) and of I bend them they’ll burst. Right away she said Fibromyalgia. I hugged her so much. Was just glad I wasn’t going crazy. Had been at doctor for over 2 years but been like this for more than 8 years.

[Jardines]

Hi! I have recently been diagnosed by a rheumatologist in oxford. What you are describing is everything i have and sounds very much like you have fibromalygia.

You have to keep fighting to get it diagnosed by a rheumatologist. I have been suffering since last summer and finally got it diagnosed 2nd May. Best of luck x

[Rheadster72]

My first symptom a few years back now was peripheral neuropathy. Do any of you have that as well as all these other weird symptoms?

Whatever it is, it's not at all pleasant on the really bad days.

Thanks everyone for your replies and the support.