Fibro care frustrstion

[Ensconcedinvelvet]

Hi everyone I am new here. I was diagnosed with Fibromyalgia 6 months ago (or so I thought) after ten or so years of trying to get to the bottom of my pain. Many x-rays, blood tests, the usual.

I had my second rheumatology appointment today and when I got there he asked if I had been officially diagnosed since my last consultation. I told him that the last consultant told me I had textbook fibro and I assumed that was a diagnosis and he said no and then...it was pretty much the same as my last appointment. "What are your symptoms, how long has this been for? Etc" then "yes, this is textbook fibromyalgia." He went through all of the stuff I already know and the last consultant went though before (sleep hygiene, diet, exercise, meditation etc) He then said thst because I'm pregnant he is taking me off the roster as it were, and that I need to re-refer myself once baby is born, even though my baby is due in 4 months and my next appointment wouldn't have been in 6.

I feel so utterly defeated. I have just come home and sobbed. Have I got a diagnosis now? Have I not? What was the point of that appointment? Why did I wait 6 months to be asked and told exactly the same things? Why have I been advocating for myself for the last ten years for this? Why should I be taken off if my baby us due before my next appointment and what is even the point of these appointments at all?

I'm new to this I guess so what am I supposed to do now? Will private just say the same? Now I have been told by 2 rheumatologists that I have fibromyalgia do I just stop pushing if all I'm going to get is perfectly google-able exercise and sleep advice?

Does anyone have any ideas, advice or experience with this? I feel like it's been one step forward and two steps back and I am so deflated.

Hi OP, if you've been discharged the consultant should write a summary of your appointments for your medical notes, so you can ask your GP for a copy of that to see if a formal diagnosis has actually been given or not.

Sadly, in my experience, once you have received the diagnosis and 'advice' you don't get much more input. Your GP can prescribe you certain medications thought to help fibromyalgia sufferers, like gabapentin or duloxetine, but other than that fibromyalgia is a bit of a dead end diagnosis. You're left to get on with it and expected to follow the suggestions about gentle exercise.

You may also find - as others with the diagnosis have - that it is used to {fob you off} explain other health complaints in the future 🤷‍♀️

I hope your pregnancy is going well and you're not feeling as defeated over your experience as you were when you posted 💐

@baroqueandblue oh THANK YOU THANK YOU THANK YOU for your response. Sadly i did have the suspicion that it was a dead-end diagnosis as you described it, all I've ever been told is to do things I already know. Yoga, meditation etc. you've affirmed for me my feelings and that in itself has made me feel much better!
My pregnancy is going really well and i'm super lucky and on top of the world about that so I will make sure I have that focus in mind.
I actually had a letter through last week saying I will be seen again in a year so I guess I wasn't discharged as such but I will certainly not pin any hope on these appointments in future.