Hypermobility, symptoms getting worse? Advice please.

[IAmAPaleontologist]

I am hypermobile. I know that. Never been officially diagnosed but childhood of joint pain which still continues now. Sister has HMS and fybro, my boys are officially hypermobile.

I've always managed mine myself, once I knew what it was after my sister was diagnosed, I knew what set me off and managed it. I only ever had knee pains anyway. Nothing major.

However, now I think I'm getting more and more symptoms. I've always had a slightly dodgy gastric system (I know I know). Recently the GP diagnosed a functional dyspepsia. Sometimes when I eat, especially if it is out of the ordinary so a night out but has also happened at a cafe lunch and an alcohol free afternoon tea, I get all hot and sweaty and then my bowels go crazy and I need to go to the loo several times and I feel sick and sometimes vomit. This seems to be getting more frequent.

Always had a bit of what I assumed was postural hypotension. When I get up off the sofa or out of bed I need to stop and wait a bit as I go dizzy and my vision clouds over. Again I think it is worse than it used to be, as a rule of thumb if getting up to attend a child it used to clear by the time I'd stumbled to my bedroom door but now it is still blurry by the time I get to ds2's bed.

Lastly fatigue and brain fog. I get so tired. Mostly cycle related really so perhaps somethign and nothing but there are days when it feels like I'm walking through treacle, like my brain just can't function .I know that I know something but I can't get it out. This is not good when I'm a student on placement who is being assessed! I can go a bit up and down with depression, have been like that for many years. Sometimes I feel fine and "depression free", sometimes I sink right down.

Am I being paranoid? I'm so stressed at teh moment I don't know if that is clouding my judgement. I'd feel so daft going to the GP and listing all these things that have been happening as long as I can remember, they are jsut normal to me. In some ways I'd like to be able to officially put it down to something but I fear being told I'm being overdramatic. I also fear a diagnosis too as I fear ebing able to put it all down to a condition, I fear not having the strength to not use it as an excuse and to get over it and carry on. Does that make sense?

[DonkeysJanet]

I don't think that giving a list to your GP would be daft. It's also not at all overdramatic to say what's actually, really going on and how it makes you feel. I've got EDS Type 3 (Hypermobile) and a lot of what you describe is very, very familiar.

There are services that can help you, the NHS provides pain management courses and there are support groups that provide other people who get what you're going through. These people www.ehlers-danlos.org/ have loads of advice and help.

Would it help for you to explain the fear around a diagnosis?

[IAmAPaleontologist]

I suppose I feel afraid because I fear falling into the trap of being able to blame the hypermobility. Does that make sense? I have seen my sister use her condition as an excuse a lot. I don't dismiss her condition, I don't doubt how hard it is to live with, I really, really don't. But I have seen her blame her behaviour on it and use it as an excuse and I don't want to go down that road. I know I am not her, but at the moment stress and depression makes me fear that. I'm in the final year of a very demanding degree, I need to get the work done regardless.

[DonkeysJanet]

That's all totally understandable, but you know something's wrong whether it has a name or not. And, yes, you're absolutely right about the difference bewteen you and your sister, you won't change personality if you have a diagnosis. It might even give you a bit of support to make some positive changes - not an excuse but a motivator.

It sounds as though you've got loads on your plate. Would you really just sit back and refuse to work if your pain had a name? Or, is it possible that you might get some targeted physio and maybe some support with your feelings about pain? You might even meet other people who have it and hear their stories about how they manage.

Sorry if that's all a bit hectoring, but you're really not paranoid or daft at all.

[IAmAPaleontologist]

It isn't the pain, i don't get much, it is the other stuff. but you are probably right.

[DonkeysJanet]

Sorry about that - bit of projection going on - put 'symptoms' in its place and see if it works better.

[rabbitstew]

It seems to me the GP might be more interested in your stress levels at the moment than the hypermobility, given that stress appears to be worsening your symptoms - ie it's stress and anxiety that's the main problem at the moment and needs controlling, not your hypermobility per se. Anxiety, depression, bowel problems, brain fog - these are all more common in hypermobile people but they are also all exceptionally common symptoms of anxiety and stress in people who are not hypermobile, so either way, I suspect you'll be told stress reduction techniques would help reduce your symptoms to the levels you are normally happy to live with.

[Dowser]

My gd just been diagnosed with HS .

My GS also has it. My son is very double jointed. I don't think I am but does it run in families.

I have a lot of the other symptoms. Ibs. Brain fog etc