To go for a private rheumatologist appt?

[Clementineorsatsuma]

My DD26 was referred for a rheumatologist appt via her psychiatrist to the GP a year ago. We've spoken to the clinic and they're saying at least another year's wait.
Would I be unreasonable to pay to see a private rheumatologist? Her symptoms point to Fibromyalgia- that's what the GP thinks. Has anyone had a good experience of a private rheumatologist appt?
I'd really appreciate some thoughts in this!

If you have insurance or can afford it then I say go for it

There will be a hell of a lot of tests involved, it could get very expensive.

fibromyalgia is a diagnosis of exclusion and not something rheumatologists treat. it's worth asking the GP to do a full autoimmune screen (rheumatoid factor, dsdna antibody etc etc) to rule out autoimmune conditions. Once all the bloods are done, then if you make a private appointment, you will get more out of it. private appointments are around £200 depending on the consultant. I definitely think it's worth it if you can afford it. and if you do the bloods first, you won't need to pay to get it done privately. I have an autoimmune condition and only got diagnosed once I went private after a year of being ignored by the NHS. hopefully your daughter has nothing serious.

My gp diagnosed me with fibromyalgia not sure why he is send her to a rheumatologist tbh

It depends what you think would be gained from the diagnosis. I was diagnosed with Ehlers Danlos Syndrome privately but that’s because the NHS rheumatologist I saw had never heard of it when I mentioned it and refused to consider it. The private diagnosis meant I got the referrals I needed for it. I would also strongly advise looking into EDS. It’s often misdiagnosed as fibromyalgia.

I have hypermobility/EDS and as a result fibromyalgia. The rheumatologist was able to refer me to a chronic pain management service that basically has helped me manage stress etc to cope with my pain and has got me moving more and exercising safely.

There's nothing medically that can be done for either, just understanding and taking responsibility for one's own health, the only thing the rheumatologist did do was make me realise that all my disparate health conditions (that I thought were just me being a hypochondriac) were all a result of the hypermobility. Still doesn't help though - a recent surgery I had to get them to stop 5 times to numb be more and all the stitches failed despite me telling them quite clearly I was tricky due to hypermobility. So whilst it can help the patient and family it really won't result in any different care. Any symptoms (like pain) should be managed via the GP.

So, unless there's a clear outcome you know the rheumatologist can provide that the GP can't (and GPs absolutely can diagnose fibro) I am not sure it would be worth the money but instead maybe look at specialist physio to help her self-manage

Thank you all so much! I thought that the GP could diagnose but it is them plus the psychiatrist who referred to rheumatology.
My daughter needs to know that there is a genuine reason for her symptoms. She has ADHD and also other mental health conditions, but the psychiatrist believes there is something else too.
I will encourage her to contact the GP again. Thanks!

Autism/ADHD often goes hand in hand with hypermobility/EDS - it's worth a look to see if her symptoms tally (it's not 'just' being bendy) as I've found it's easier to ask if they are pro/anti a particular diagnosis rather than asking for a diagnosis out of nothing.

https://www.ehlers-danlos.org/what-is-eds/ is a good resource for having a look, definitely worth a go (there is a lot of crossover between hypermobility and EDS - my rheum said that since the diagnostic criteria were revised they only diagnose EDS if there's clear vascular involvement but joint hypermobility syndrome can be pretty severe - I know several people with PiP and blue badges with it)

I went private as had unexplainable symptoms that other specialists couldn't put their finger on. I went through a few different specialists and ended up in Rheumatology. Diagnosed with EDS and Fibromyalgia. Thankfully the private specialist was also an NHS one and so she referred me then via NHS to all the right support services. My GP won't prescribe most medications unless a specialist tells them to.