Day 4 What a doctor told me

As per day 4, I am sharing the most disheartening thing a doctor has said to me.

The NHS is wonderful and I am forever grateful for it, but for long-term undiagnosed conditions it has its drawbacks. Following months of seeing a different doctor at every appointment, and spending 8 of the 10 minutes of each appointment recapping previous tests, symptoms etc, and going over all of the things that had happened to date, I got fed up and booked a private GP appointment and spent a full hour with a fantastic GP who (looking back) hit the nail on the head. However, at the time, I felt something she said really resonated with me and scared me.

After a full neurological exam, and after going through my MRI notes, bloodwork etc, she suggested that the aches, pains and dizziness I was struggling with were very real, but originated in my mind. I accepted this, I'd thought it myself for a while. BUT - then she said, if I kept going to doctors and pushing for a 'diagnosis' then sooner or later someone would tell me it was Fibromyalgia, and that having a name wouldn't be of any help to me at all. She suggested I read 'Thrive' by Rob Kelly.

I cried after the appointment, I'd heard of Fibromyalgia and knew it wasn't something I wanted. My brain chose not to focus on what she'd been trying to tell me - that I was suffering due to my thoughts and my mind - but to focus instead on the one word she'd told me not to focus on - Fibromyalgia.

It took months and a LOT of reading into mind-body conditions, and then stumbling across this wiki for me to fully appreciate what she'd been trying to explain to me. I get the impression she'd been very cautious with me, expecting me to resist the idea that this originated in my mind, not a physical condition. I plan to write to her soon to thank her for planting the idea of a mind-body condition, and to highlight the existence of this wiki for anyone in the future she sees with similar problems.

 

Oxalys,

Welcome to the wiki!

Our minds are amazing, aren't they? And tms is so sneaky. I've known about tms for years, but it still can fool me. I am so glad the seeds your doctor planted took root. You are going to learn so much!

Lizzy

 

Good for your courageous female GP. I agree with her. So many people cling for year to a bad diagnosis and think they will always have to manage it.

Be as free as you can. I cheer you on.

 

I can relate to this so hard.

The NHS, waiting months for appointments and tests with specialists, always seeing a different one and often being told opposite things. Eg. 2 gastroenterologists told me to take a low dosage of amitriptiline for my ongoing nausea. The third a few months later was surprised I was on it, as he said it was for ‘pain’ and not ‘nausea’.

And, like you, someone suggested I might have ME (something that terrifies me because of its chronic nature) and this unravelled me.

I’m on day 4 of my journey. I hope that yours has gone well. Do let us know x