I have EDS/HMS, as do my three children. My eldest suffers more from pain and subluxations then fatigue...altho he does get this.
My middle son has serious probs with fatigue which can mean he sits/lays down alot and sleeps alot, he is really really grumpy at times, he also is easy to spot when going into a flare up as he just looks so pale and awful and exhausted..He also gets lots of migraines. He does get pain but not as bad as the others. He has always been this way, ever since he could crawl. i used to worry that there was something life threateningly wrong with him, because he was so fatigued, lethargic and didnt want to do anything, he hated walking and running.
My youngest, daughter,, is the most active of the three never without bruises and scars easily,and even rips open a scar on her knee regularly, but always (like several times a day!!!
) complains of pain, sometimes the pain stops her from doing things...this is then when she also appears fatigued, she also tends to sublux her fingers when she is like this(I honestly dont know why
)...at other times she complains but is able to carry on with normal activities.
When i was a child i can remember being told that i had growing pains...according to my mum i always complained. But i wasnt diagnosed until late and because we all were so flexible, including my mum,(siblings to) and complained of aches and pains it was never really picked up on. Everything was normal to us.
TBH all 3 are now ready for the summer break, I am struggling to keep them in school because they are so fatigued.This isnt just like being tired, they are completely drained.
My eldest gets time off when he is fatigued/or in severe pain or he has access to a learning support unit,where he can relax on beanbags and work, or his work is emailed home and when he is awake he does it. The other two, who are still at primary, have odd days off when they cant cope with school anymore.My middle son has at least a few days a month off, if not weeks sometimes.
It affects all four of us very differently.
What i would say...having met Dr Hassan with my eldest..is that I would trust him 100%. i was very impressed and he told me things about my son, that i didnt know
He has also ,with Prof G, arranged a really good physio programme. And they have requested that the other two are seen at GOSH for assessment.
The only down side is that there are 4 of us with medical appointments,consults, OT, Orthotics, physio etc and i always feel like i am at hospital!
hope this helps,
Try not to worry too much as it does effect everyone very differently and can change for the better at times especially with physio etc Altho you cant stop having hypermobility.