My health has slowly been in decline for several years. It started with multiple dislocations and chronic pain. I was told these were because I had Joint Hyper mobility Syndrome. Also shortly after I developed Asthma at 15 years old with absolutely no history of it! I coped for years but over the past two years my health has declined to include muscle pain, IBS/ urine problems , faintness, vertigo and light-headedness, easy bruising that sometimes turn into dark patches. My arms and legs also fall asleep scarily quick.
Now Ehlers Danlos is a condition that has been mentioned several times but I honestly feel that doctors can't be bothered to diagnose. Does this sound like Ehlers-Danlos?My local GP treats me like a pest because I have been constantly pestering them for the past 7 years over this since I was 14.
Also I don't know if this is just me but whenever I think about having EDS or JHS I just think 'Nah, I can't' even though the signs point quite clearly. I always doubt my fatigue, am I just horrifically lazy? the dizziness, am I being over dramatic? ect.
I'm 21, at university and I'm starting to really struggle mentally with this, doubting myself. What do you guys make of these symptoms?
Joint hypermobility syndrome is another name for elhers danlos that's what many experts in the field of eds believe.
Can you go to your gp and ask to be referred to a pain clinic or to a physio that understands jhs/eds?
I'm also at university can their disability department help you? Sometimes you can get disabled students allowance dsa which can allow a notetaker in class even if you're unable to make it to class. They can also help you look into the possibility of going part time to help with the fatigue.
Do you still have your diagnosis of jhs? That can be used to help you apply for dsa.
Ally
I have got some help from my university, they provided a laptop on DSA but when asking my doctors for medial evidence they wrote a letter that claimed that JHS only caused some pain and dislocations. Nothing about the fatigue, dizziness or any other symptoms. So my university seems to think I only have to deal with small amounts of pain (Which is not the case)
For some reason they don't treat JHS very seriously as an invisible disability (I had one support worker comment 'oh that's just dislocating regularly!' in an almost patronising way.)
My GP is a mess, referrals take up to a year or just never come! I actually got a genetics appointment, attended it and never heard back from them. My GP didn't hear back either.
I did attend physio but it messed me up, they gave me to much to quick and It simply caused a whole load more pain. When I tell my doctors this they act like I was being a childish brat who just didn't want to work at getting better (So clearly my pain wasn't that bad)