Hello everyone

[elzawelza]

My name's Helen, I'm 26 and as well as working in a call centre full time in Loughborough, I'm also studying for a law degree (which will be my 3rd - and final i think - degree).

Anyway, for the last 3 years or so (longer than that on and off, but the last 3 years its been getting gradually worse) I've been getting lots of problems with my joints, the doctors always just turning me away and just saying that I should "keep taking the painkillers". At one point they sent me for an MRI on my knee only to apparently find nothing wrong with it (they then sent me to Physiotherapy hoping that would cure it...it did alleviate the symptoms for a while, but they come back intermittently) and then another time I actually collapsed in Marks and Spencer in Derby with an unbelievable pain in my wrist joint; I was literally screaming in pain and loads of people were staring at me thinking I'd been hit by someone

So then on Sunday just gone I go to bed and while reading I start realising that I can't get my right ankle to get comfortable, no matter which way I place it then I wake up the next morning to find it swollen and really sore.

So anyway to cut a long story short, I go to the walk in centre in Derby which just tells me to go to my GP. I make an appointment and go on Thursday.

Now I'm not one to normally freak out in a doctors office, but to be quite honest as I'm sure you can all appreciate just how annoyed I have become, given that I always seem to be fobbed off by them as if I'm making up the pains in my joints just for the sake of it. As such, just as the Doctor says something along the lines of "there's nothing that we can really do..." I burst into tears. He freaks out slightly (starts just saying "ok...right...yes..." as if its shocking that someone would be crying in his office because he hadn't given a diagnosis they wanted). He then proceeds to look at my ankle again and ask if anyone had previously considered that all these joint issues might be linked. Of course I say no, so he looks at the mobility of my ankles, then he gets me to stand up so he can look at my knees, then finally looks at my elbows before going on (of all things) patient.co.uk and comes up with hypermobility. He tells me to go away, research it and then come back and see them if I think I have it.

Well...I did just that and wow. It's like a light has been switched on in my head! Looking at the diagnosis outline on this website, I have a beighton score of 4/9, arthalgia in my joints (presently 3, but that does vary), soft tissue rheumatism (in my wrist and ankle at the moment) and myopia. I know its not completely conclusive, but its SO good to finally realise that I may have a name for everything that I'm suffering!!!

Anyway, enough of my rambling...just very glad to have finally found somewhere I can talk about all this and know that I won't be turned away like I'm a lunatic and that I'm imagining things

[matilda duck]

Hello I'm new too.
I think we are all mad on here, due to the fact we know what's wrong with us/our children but the doctors don't.
We're all here to help.

[Tanya]

Hey Helen,
Im Tanya, I'm 22 and I'm new Here too.
I totally understand about the lunatic/ thinking your imagaing things bit. I had that from my GP for ages, who jut told me there was nothing to be done! And to carry on taking the pain killers. And my orthopedic surgergon's answer to everything was to operate!

You should ask you GP to see a rheumatolist, Its well known that a large number of GP's have very little or limited knowledge about HMS, hence the unaffective treatment and advice people receive. I saw a rheumatoligist this week, and the apointment was great, as she discussed all aspects of HMS, confirmed by diagnosis that my ortho consultant gave, and diagnosed other problems which I never realised I had! (flat feet, postierer pelvic tilt) and now she has referred me to other professionals. Now I feel that things are fineally moving forward.

I'm really glad that you have now found out you have HMS, and I hope that get the advice and support you need.

Tanya

[nemonie]

Hiya,

welcome to the boards, I'm glad you've found us. Now you need to go back to your GP and ask for a referral to a rheumatologist to be checked for Ehlers-Danlos Syndrome/Hypermobility Syndrome. Preferably ask to be referred to one of the hypermobility clinics - there is a list on the main HMSA website.

Good luck getting a diagnosis.

[elzawelza]

Hi again,

I've finally been diagnosed! Took 4 months between now and my last post here but still.

So yeah...went to see my favourite GP who agreed with what I told her and said that it "wasn't normal for a 26 year old to keep visiting their doctor" and so finally got a referral to a Rheumatologist. Made the appointment for 1st August and within about 10 minutes of seeing the consultant he confirmed my suspicions, that I had JHS! He did some blood tests just to rule out anything else but said that he was sure if nothing else then it was definitely JHS. I didn't tell anyone that pretty much until now because I've had no reason to (and in some weird way I was still in denial about it all)...but I went to see my GP again the other day and she told me they'd had a letter confirming it. I'm still waiting on the blood test results (why is it that they always take forever to come back? )

So now...I'm starting to learn to live with it. Until now I had no idea how much it affected my life, but now reading up on it, I see more and more of what I've experienced as being part of JHS. I've also been going to an Osteopath these last few months to help with the pain management of it as at the time I made the first appointment I hadn't gotten a diagnosis of JHS and was desperate to get something to help and I've gotta be honest, for me its really working. Yes I still get pains in my joints but for me a monthly visit to my Osteopath helps to my joints so its starting to become more bearable and it means I can stand up for a long period of time and not end up hunched over by the end of it because my back is aching so much lol...has anyone else had experience of this kinda thing?

Anyway I'll stop rambling now...I'm just really really relieved and also somewhat scared and happy and sad and and and...I don't know what else I'm feeling right now...

Helen xx