Published on 12, July, 2020
My hypersensitivity is becoming a problem in the sense that I'm always in pain and unable to tolerate light. My doctor is aware of this and how bad it is and after extensive tests she agreed it's autism related and now it's sort of like 'Well, good luck with life...' and I've been left to deal with it on my own.
I don't work, I tried but the stress led to a breakdown and hospitalisation which led to unnecessary medication - not a nice situation to have been. I spend all my time at home, usually in bed reading my Kindle - I like to dabble in art and painting - is a good way of expressing how I'm feeling and painting some colour in to what's otherwise a grey world.
I've inquired about my hypersensitivities with a lot of different people now - including professional organisations - but literally no body cares or wants to help or know. I feel in it alone. I feel like I'm existing in this world but not living - I just read and watch movies and listen to music - from day to night, the same cycle every day.
I've had enough and it's frustrating me now. I've looked for professional support but there's none - hopefully being here will help me instead.
Claire.
Hi Claire
sirry this is a delayed response. I have only just joined (diagnosed last year after 40 years of misdiagnosis)
I have very similar issues to you and Uhane. It’s very restrictive in my life. I posted a new discussion thread yesterday specifically about my problem with clothing but I react in what looks like an auto inflammatory way to most things (food, smells, heat, cold, light, touch…) I have seen people about it but they haven’t been able to help manage it. What we have learned is that these responses are governed by Mast Cells and some people can have overly or inappropriately active mast cells either because of a rare primary mast cell disease or more often as a co-morbid condition with things like EDS, POTS, and there seems to be some research going into whether there is an involvement of Mast cells in autism. I hope you have found someone to help you in general but, even though this route hasn’t solved the problem for me, it helps me to create a mental model of what is happening and there are things you can do to help manage the symptoms if it is a mast cell/histamine intolerance issue such as prescription antihistamines. Dr Tania Dempsey has an informative page. And Dr Afrin does a lot of YouTube webinars for EDS org which would be a good place to start if you were interested in finding out about it. Have you or anyone else tried Sensory Integration Therapy? This is what my assessors have suggested to me
Uhane