Am I being unrealistic expecting to get a diagnosis at this appointment?

[Theworldisquiethere]

I’ve got a gp appointment Monday

Background:

Bad joint pain, stiffness, and fatigue since the start of the year. Realised I’m hypermobile and not just ‘bendy’.

Contacted gp after a few months of symptoms, they told me to self refer to physiotherapy and did blood tests which came back normal, then lost interest.

After several months of physio my symptoms are only getting worse, I’m in constant pain and also suffering from what my physio suspects are POTS symptoms. Contacted the GP again and they (finally got back to me after 6 weeks and several attempts at contact) asked if I had a diagnosis related to my joint symptoms (I don’t), then made me an appointment.

The hypermobility runs in the family so they suspect it may be caused by something genetic. From some Googling my symptoms match up to ehlers danlos but I’m not 100% sure as it seems like quite an extreme diagnosis.

The POTS type symptoms are being addressed separately so this appointment is just to do with my joints.

Am I being really unrealistic to think there’s even the slightest possibility of getting some kind of diagnosis at this appointment or should just I be preparing myself for several more months of constantly having to push for more support.

I don’t think a GP can diagnose hyper mobility or joint issues they may well say it looks likely but tend refer to hospital for “offical” diagnosis. Well done though for sticking it out this far. It takes ages get anything done especially with Covid.

On positive side they do seem to be listening so far and you have seen physio and referred for POTS which will help with other diagnoses. Don’t be to hard on yourself whatever happens.

A gp can and will diagnose hypermobility but usually won't diagnose the cause of it. Hypermobility isn't a diagnosis in itself, it's like diagnosing you as having feet. You would probably need to see a rheumatologist, a lot of them have no interest in dealing with this issue and a lot of people end up going to see one of the hypermobility specialists privately. I had to do it my self over a decade ago and while it was expensive, that diagnosis of eds made a huge difference to my medical care. Before hand I was fobbed off a lot and that lots of people are hyper mobile, which they are , but for the majority it causes no issues. I was in bits but they had the perfect excuse not to help.

You need to see a rhematologist. Can you specifically ask for a referral?

In terms of managing, do you do any exercise?

I'm hypermobile too 😊

The Royal College of GPs has a 'tool kit' for EDS, which is worth looking at and trying to persuade your GP to do the same. It sounds like you at least have Hypermobility Spectrum Disorder, if not EDS

www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

I went to a private geneticist for a diagnosis now I am under rheumatology (but they don't really do anything except offer to prescribe meds)

Thanks everyone!

@doadeer I’ll ask about seeing a rheumatologist, I think I need to make myself a list of things to ask the GP!
I do the physio exercises plus recently a lot of cycling, very frustrated as the physio had originally said that the pain and stiffness should ease as I got stronger but I now have quite strong legs from cycling a lot but the symptoms are only getting worse! She was surprised by it too but just said to keep going with the exercises.

@UpTheLaganInABubble that’s really helpful, thanks! I’ll print it off and bring it in to the appointment.