I live in Yorkshire with my husband and 4 kids. I've had ongoing joint pain and fatigue for about 16 years since I had my eldest, worse the last 7 (since I got pregnant with my youngest). I've been back and forth from the doctors over that 7 years, having blood tests and being told nothing was wrong, and being offered antidepressants (no thanks).
I decided to have one last try and this time got a referral to a musculoskeletal triage service in my area, with a specialist GP. Well he was brilliant. Went through his standard questions, examined me, and told me I have HMS. He needed to do some more blood tests just to confirm that other things like arthritis can be excluded, so I am now waiting for my follow up appointment to come through and then I will be referred for physio. Told you something was wrong, GP!
I never suspected HMS in all the years I've been trying to work out what was wrong with me. I'm gluten intolerant and that flares everything since it trigger inflammation so that confused things and also fooled me into thinking maybe it was other food intolerances causing the symptoms, or something autoimmune since gluten can trigger that. I've never seen myself as "bendy" and wasn't good at gym as a child or anything like that, so excluded it automatically. But I score 5/9 on the test, though only just being able to do the 5 things I can do. I guess being extremely bendy like a gymnast is not necessarily what it is all about when it comes to how much troubke it gives you, as I am not so bendy but have a fair amount of pain, a lot of fatigue and quite a bit of joint trouble. I've had joint problems all my life even before the pains started, I just never realised it wasn't normal to feel like your hip popped out of joint when you sat down to play (aged 9) or not be able to swim breastroke legs properly as your hip hurt, or have a sore toe with a joint that clicks when you walk etc etc.
I also have other issues like GERD, IBS, severe stretchmarks, varicose veins and so on, which I understand could be part of the same thing.
I'm really hoping the physio is helpful although I know this is something I will be dealing with for life. I am so exhausted and sore all the time. My kids think it's funny when I stand up from the sofa and can't put weight on my right leg, but I don't! Plantar fasciitis, shoulder pain that stops me sleeping and meant I had to give up yoga, and so on. Bleurgh. I'm also very overweight, I've gained so much since my symptoms worsened, I think it is a combination of being inactive due to keeping injuring myself (ahve had the PF for over a year and before that had an ankle ligament injury and could hardly walk for 9 months), overreating to try to keep going when I am exhausted, and comfort eating because how else am I supposed to have fun in this state?! I really need to sort myself out.
Two of my children had already been diagnosed hypermobile several years ago (my husband is stiff as a board so I was baffled where that came from not realising it was me lol). My daughter is 15 and she had orthotics for a while as she has extremely flexible, flat feet, and she's also had problems with her jaw. My son has hypermobile joints in his legs and flat feet which make him look pretty funny in shorts and bare feet but he hasn't had any problems yet. I am concerned for them, but at least they will know what the problem is and hopefully get a lot better support than I have had all these years.
HMS (diagnosed Feb 2012, aged 38): food intolerances incl gluten, allergies, asthma, IBS, GERD, RLS, hypoglycaemia
"Feelings come and go like clouds in a windy sky. Conscious breathing is my anchor." Thich Nhat Hanh