Referral times

[Carebear92]

Hi,

I’m trying to get to the bottom of my chronic pain issues and I’ve just been told the waiting time for rheumatology is 12 months. I’m convinced I have fibromyalgia and it’s becoming frustrating to not have an official explanation for my pain. Thyroid tests came back normal and I’m having a blood test to check for inflammatory markers on Monday. I’ve waited 15 years for an endometriosis diagnosis which has left me a little traumatised so this literally feels like a punch to the stomach. This is more of a rant than anything but has anyone had any luck with private consultations or any other routes? I’m lost, I don’t know how to manage another 12 months. I’m planning another baby before then, my last pregnancy was really painful but I was furloughed so the idea of working in a fairly physical job is a little concerning.

Thanks for the space here

[Maria31]

Hi, yes I went private for the reasons you Described. I am still waiting for my NHS rheumatology appointment! I saw a fibromyalgia specialist by accident, not design, because I had no idea I could be suffering from it. He was great and spent an hour with me. I think under the current circumstances with the health service this would be a good option for you to investigate. I hope that’s helpful.

[Maria31 in reply to Maria31]

PS. I spent years getting a diagnosis of coeliac disease when I was younger so I Understand where you are coming from.

[Carebear92 in reply to Maria31]

Oh thank you so much. I’ve woken today with a flare up, presumably from stress, so I’ve contacted the Nuffield hospital today to enquire. I can’t live with this for another 12 months with no answer 😔

[Trappedmoth]

Like you, I could not get an appointment with a rheumatologist, so I decided to go private. I got a recommendation from my GP for someone she knew and who did work part-time for the NHS. When I told him my situation, he immediately put me on his NHS list. Sometimes you need to take a rather convoluted route to recieve good treatment.

[Carebear92 in reply to Trappedmoth]

This sounds really similar to what happened with my endometriosis! My gynae worked part time private/nhs so I got seen much faster. I’ve looked at the consultants at my private hospital and there doesn’t seem to be anyone with even a special interest in fibro which doesn’t fill me with confidence! Was the rheumatologist you saw a specialist in fibro or was he more general?

[Trappedmoth in reply to Carebear92]

My rheumatologist is a pain specialist (and researcher) and a chronic pain specialist. He's also a really nice person and even gave me his email address - in case I need it. Being proactive, finding the right people and creating a situation which works for health issues like fibro, is hard work. But just waiting for things to happen won't work under our current circumstances.

[Carebear92 in reply to Trappedmoth]

Oh he sounds like the right person to have in your corner!! So glad you found him! Yeah, I’ve learned the hard way that waiting for other people just doesn’t do much good unfortunately. Thank you for spurring me on 😂

[Trappedmoth in reply to Carebear92]

I'm glad to help. Take care of yourself.