Ccat21 - Hi! Firstly without sounding rude to your husband how disabled you 'look' isn't up to him! My ex accused me of wanting to look like House,MD (tv show) as Hugh Lawrie's character uses a stick
I was so shocked the anger didn't hit til later. I'm not telling you how to feel/act or anything but this is YOUR body and you need to deal how YOU want to.
Also, this may sound counter intuitive but at the recent HMSA conference Hannah Ensor, patron of the charity explained that using adaptions (& in her case a wheelchair) has allowed her to feel less disabled even tho she 'looks' worse because she achieves more now than when she 'looked' less disabled! It really struck a cord with me and it helped to explain to Drs etc. that I may use more splints & braces now than 6years ago but am happier & healthier (mainly!) than back then. It's hard in the early days to get used to the changes. These boards helped me so much.
Second, you're not being a hyperchondriac! Other people may be telling you that but that's only as they can't see you pain & it doesn't show up in tests or fit into preconceived ideas. Fibro flare ups suck and unless you've experienced it there's no way to understand it. The GP at least recognises there's a problem even if not being much help.
Have you seen a Rheumatologist? If not get GP to refer you. Just a warning they may not 'get' HMS and leave you feeling disappointed. So why refer yourself in the first place? I feel it's the first step on the ladder to diagnosis & proper support.
depending where you live there are specialist treatment centres Which you can get details of from http://www.hypermobility.org/clinics.php
. Next referral to a pain clinic may help you to manage pain through medication or alternatives such as pain management programme (although you'll see a psychologist if referred don't be put off that they think it's in your head, that's not why you're there, it's because they have been trained in how to deal with chronic pain using cognitive behavioural therapy/physio/occupational therapy/non medicational strategies)
Here's some notes online you can get Husband & GP to read http://www.dwp.gov.uk/publications/specialist-guides/medical-conditions/a-z-of-medical-conditions/joint-hypermobility-syndrome/
Here's a website to help you understand the self harming from Mind http://www.mind.org.uk/help/diagnoses_and_conditions/self-harm
and this one from National Autistic society http://www.autism.org.uk/living-with-autism/understanding-behaviour/challenging-behaviour/self-injurious-behaviour.aspx
'So should I support my painful joints & try to strenghten them with swimming & walking or should I carry on as before in pain without the support?'
You don't mention if you're on any medication. Not everyone wants to take pills but as its not going anywhere the pain needs to be managed. This will be different for individuals, but if in pain that joint needs supporting. For most people that support is strengthening the joint, it's a vital thing to do but it's difficult to do when in pain and then get stuck in a cycle of 'exercise causes pain, I'm in pain so can't exercise, etc.' Exercise as much as possible within your limits, use sticks and aids around the house as much or little as you want. Personally I use a mix of meds, physio, exercise, pain management & braces/splints.
Final link I promise to show it's not all bad!http://www.hypermobility.org/forum/viewtopic.php?f=8&t=12605
You can PM me if you want to talk more.