EDS help with tiredness Watch
yeah im referred to a consultant but im a bit annoyed i havent been referred to a rheumatologist, only referred to a general pediatric consultant (im 16 in january so still under pediatrics) so yeah im a bit annoyed about that as my gp is a bit of a prick and dose not take much notice of the issues i have despite a diagnosis..
It's hard to get appropriate care, but there are people out there that do care and are very knowledgeable. I've found that there are a lot of specialists in London that know a lot about EDS in relation to their speciality. What sorta issues are they ignoring? Are your parents supportive? Maybe changing GPs is the best course of action for you.
I have only just been referred, i was diagnosed at 12 by a locum gp at my old surgery but had to change surgeries as it was to far, after the diagnosis was not referred anywhere and it was left at that and by the time my issues started to get worse, i couldnt even remember if i had actually been diagnosed (i had to ask my mum if i had even been diagnosed as i was confused as t how i wasnt even given physio?) and i still hesitate to call myself "disabled" for the fact that i just dont look disabled which is probably why im struggling so much with stuff because people dont believe me and i am scared to talk to people about it. my mental health is very up and down with constant social anxiety for which camhs dropped me after the initial assessment because my school didnt explain to them i had already had everything the school could do which had no affect, so i asked my school to refer me again last year and they still havent done it. my nuitrition is probably close to awful as well because my gastro issues are so bad that if i do not loads of high fat high calorie foods i seem to lose weight which is not what i want because i always get called out for being skinny anyway even though i literally eat constantly to maintain my somewhat normal weight.. yeah my mums pretty supportive because i got the eds from her side of the family where some of my relatives on that side are really badly affected (one of them is wheelchair confined at 13) but my dads side of the family dont really take it as seriously as on the outside i look like a perfectly healthy 15 year old apart from the injuries every week lol sorry for the long reply lol
I mean, I understand that, but if you can't do something because of EDS or associated issues, then you are disabled, whether or not you "look" it. Invisible disabilities exist! It might take time to accept that though. Talk with people you trust about it.
Be persistent with getting help with your mental health, because whilst that's not the sole cause of your fatigue (which is probably multi-factorial) it is impacting it in some way.
Speak with your GP or paediatrician about your GI issues too.
I'm sorry your dad's side don't take it seriously, but I'm glad your mum is supportive. Sorry to hear about your relative.
But yeah, definitely get into physiotherapy so that you can rehab your injuries and prevent them from occurring so frequently.
Don't worry about the long reply.
Pots is the main thing that wares me out quickly and badly so that's my main focus. Managing that includes medication, hydration, salt and sitting when I can.
Good luck with your referrals (and hopefully finding a more understanding GP at your surgery.
Ok so saw doctor at hospital friday, and she has referred me to physiotherapy (but there is a 1 year + waiting list) I have also been told I need to have inflammatory blood tests to rule that kinda stuff out and food intolerance testing (due to gastro issues), have also been told i potentially need allergy testing after that and am being referred to see a geneticist as they suspect marfans even though I meet criteria for hypermobile eds, is it even possible to have both???