In May of 2015 I started having stomach pain and vomiting. initially thought it was a stomach ulcer and was diagnosed as such, after 6 weeks of treatment i was getting nowhere, tried a new medication and still no results. By August was sent to a specialist and for an ultra sound as it was now thought to be gall bladder.
That was all clear (other than finding i only have one kidney!)
more gp appointments, blood tests, gastroenterologist and a gastroscopy no answers. CT scan, again nothing. stomch emptying study ''essentially normal / within normal range''. So no answers! I have stopped vomiting all the time (at first it was 5 times a day and now im just nauseaus without vomiting) I cant eat anything acidy like fruit, spicy, no coffee and no alcohol so very bland diet for 14 months now! ive lost around 5 stone, 3 of which were the first couple of months as i just couldnt eat / keep anything down!
I was referred to a rheumatologist as gastro said EDS was a possibility as i have hypermobile joints and some pain (back pain for years now sometimes so severe it made me sick in past and cant lay flat on my back) as well as headaches and sensitivity to light.
I had a chest xray prior to visit as heart concerns (ive been having dizzy spells and palpitations / rapid heart beat symptoms too but blood pressure ok) just to speed things up (gp said i may be sent for an xray and no diagnosis until after that so best to be on the safe side)
At Rheumy appt i was in the 10 minutes. did the basic tests (which if you google EDS test is the first thing that comes up!) and hes trying to get rid of me. said probably EDS (no explanation as to what it is!) and probably fibromyalgia too as tiredness (cut work hours down from 50 per week last spring summer to 10-20 this year and still exhausted!) but said that fibromyalgia is not helpful diagnosis and will just stop me getting a job in the future! I explained that the real problems i am having are nausea and dizzyness and gastro said rheumy would help. Rheumy said thats not his job he just deals with the joint pain ive complained about! (never once complained about joint pain in last 14 months!) He then said dizzyness and palpitations could be POTS but couldnt remember all of what thats an acronym for!!! Said he would refer me for an echocardiogram (in May, still nothing yet!) but stomach not his department.
Saw Gastro again last month and he said EDS can cause stomach trouble so probably that. will refer me to specialists in london as my local healthcare doesnt have funds or knowledge to carry out further tests or help me!
So now im just so lost! I have no answers, noone seems to be able to / want to help me. Im stuck feeling awful. I work 10-20 hours a week and do nothing in evening / weekendsa as im so exhausted! and now they tell me this is a lifelong thing i need to learn to manage my energy better, sleep better (ive never slept well but before i could cope on 4 hours a night.)
ive got a new job potentially starting on the 15th August, just part time but less physical which im hoping will help but now im so scared that its all too much for me! The stress of application / interview etc has exhausted me. im a nervous wreck on top of feeling sick 24/7 anyway! Also worried that once they see my occupational health form ill be replaced anyway / future appointments will get in the way.
how do others cope with work and health balance? I would love to go back to being able to work, exercise and see friends / do fun things but i just cant see how and honestly if this is it forever id rather be dead. im 23 next month as was ill for the entirety of 22, plans to travel all cancelled and my saving are depleting to make up for how little i am able to earn. Rheumy told me i need to get stronger to support joints and then theres no reason i cant go back to my old life ans theres nothing wrong with me! But i get so light headed when i just get hot and have to bend down at work to pick something up!
I don't really know what im asking / looking for im just so tired, angry, frustrated, sad and confused by how my life has been turned upside down and im supposed to just accept it and carry on as if im fine. i don't know what to do.