Seeking a Diagnosis

[undiagnosedfighter]

How did you get a referral? My GP doesn’t seem to take my pain and dislocations seriously. He just says to get more exercise and go to the chiropractor. I try to exercise regularly but it’s hard when my hips will dislocate from just walking. I also see a chiropractor regularly to reset my sublexed joints. I’ve tried telling him this and he didn’t give any other suggestions.

[Jay66]

You are right to be concerned. If you have hEDS or the similar, virtually identical but 'didn't tick all the boxes' diagnosis: HSD, then many kinds of exercise are bad for you and you need to avoid them. Anything which promotes instability of the hip is to be avoided, along with types of walking and all running.

Insist on a referral to a rheumatology department which can diagnose hEDS. My doctors had no intention of referring me anywhere - I had to insist.

Also, certainly in Yorkshire, no NHS doctors will refer you to a chiropractor as it is considered a 'complimentary' medical practise. Whereabouts do you live? My GP (only 2 weeks ago) tries to get me to self-refer to an NHS physiotherapist, but in my area that is less than useful as I have self-referred before - so I am about to (find the money) and go to a private physio used to hypermobility, to try to really sort out my problems once and for all.

[undiagnosedfighter in reply to Jay66]

I live in the US, I’ve tried to just go to a separate rheumatologist but without a referral they won’t except our insurance and the rates are ridiculously expensive.

I hope you can get into private PT, although I’m not really sure what the difference is (every PT is considered “private” here and usually requires a referral)

[Jay66 in reply to undiagnosedfighter]

Ah that is why your post seemed unusual to me. There are a great many hEDS specialist rheumatologists around the USA now. My suggestion is that you join this group: inspire.com and ask them to suggest the nearest specialist to you, giving the town/city you live in. Then write a letter to him/her laying out your medical issues and asking if a referral is justified. The specialist will write back saying yes - you show your letter to your doctor and hopefully your referral will follow. If not, get another doctor straight away (and let your current doctor know what you are doing - it may prompt a change of view). In an earlier deleted (?) post you mentioned you are under 17 - involve your parents as much as you are able to in this process.

Private physio here is falling over itself to be helpful because free physio is readily available - you don't need a referral, you just self-refer, to both kinds. So the availability of the free NHS means that our private health services have to be not just good value for money, but also exceptionally good service with it!

[undiagnosedfighter in reply to Jay66]

Thank you, I’m 17 (the other post wouldn’t let me view it so I ended up deleting it and I was too tired to retype the whole thing). My mom’s on my side but my dad tends to think that I’m just not trying hard enough.

[Jay66 in reply to undiagnosedfighter]

Well the good news is you have one parent who is on your side and can go through the process with and I am sure your dad will come round - pain is a very subjective experience so it is hard for people to see the world as you see it.

Join inspire.com

now (I am on there under a different name) and find your local hEDS specialist.

At 17, if you were to grow out of hypermobility issues, you'd have done it by now.

I wish you luck!

[Jojo91 in reply to Jay66]

I have found nhs physios in my area (Exeter UK) to be some of the best and most helpful NHS professionals for hypermobility, and it was physios who first flagged up mine after being referred by GP for "tennis elbow", and I have also had hydrotherapy which was really good. So I think it is worth trying NHS physio, and sadly it seems to be a bit of a postcode lottery.

[Jay66 in reply to Jojo91]

Yes, I think the quality of the service is area specific. I have heard of some truly excellent physio services available around the country, but not here (and I am really sad about that because I don't have the money really to go private). Hopefully undiagnosedfighter can see a physio on insurance money - I don't understand the need for a referral from a gp - if you have joint issues then you need a physio.

[undiagnosedfighter in reply to Jay66]

American health care is sucky. Some do offer services without a referral but since they usually don’t take insurance it could be around $200-$300 per session which I can’t afford.