unsure

[Kirsty]

Recently told by a rheumatologist that I have long covid and myalgia. The word fibromyalgia has been thrown around by the specialist and now my GP, but as yet no difinitive diagnosis. Im feeling a bit confused and like Im standing out in no-mans land!!!!
I never know from one day to the next how my body will feel but the extreme fatigue is a constant.
I have had and still suffer from aches and pains along with a whole heap of other varying symptoms that seem to come and go but only the constant stiffness, aching and fatigue hang around.
Sometimes I think maybe Im making it up and its all in my head. The unknown of whether this is lasting or whether it will pass is also draining.
Im just not sure about anything!!!!

 

[sunkacola]

Hi Kirsty,

Your feelings are pretty typical for people who are in the early stages of finding out they have fibromyalgia, so don't feel alone.

At the same time, please know that there are many other disorders and a few diseases that have the same symptoms as fibromyalgia and it is wise to get tested for all of them in order to be sure you don't have one of them.
Getting a definitive diagnosis of fibromyalgia is kind of a paradox, because usually it is diagnosed by eliminating the other things since there exists no definitive test to prove anyone has fibromyalgia. Really, while everyone wants a diagnosis, the diagnosis itself doesn't help you because there is no known treatment let alone cure for fibro. There are things that help some people but not others, and there's nothing in the way of treatment that helps everyone with fibro.

Chances are very high that you are not making this all up, and don't spend time letting anyone tell you that you are. If you have eliminated the other things that can cause this (Lupus, ME, MS, Lyme, etc) then chances are high that you have fibro. If you would like to read something that has ideas on how to manage this, please see the following:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

And feel free to ask us any questions you have. We are here to help.

 

[Forgetmenot]

Hi,have u had any blood tests to rule everything else out.
Tbh so many of us drove ourselves crazy wondering if we were all making it up.
Pain and tiredness can't be made up ,you feel it or you don't.have you asked your Dr right out.....do I have fibromyalgia. As you sound like your do to me but I'm no Dr and I have no idea about your body.sometimes we just got to be abit forward and ask things right out .