Published on 12, July, 2020
Hi,
I'm a really big worrier. Worrying is a huge part of my Autism, its caused me so much grief, especially as I've got older. I'm now 21 and it's like I've had a lifetime of worrying. In the last three years alone...
My dad was diagnosed with Type 2 Diabetes, which looks like it's getting worse.
My mum was diagnosed with a brain tumour, we later found out it was benign.
We were involved in a car crash.
My brother had a blood clot on his lung, he is now better.
My gran passed away.
And I keep fluctuating between different states. Some days I'm happy and other days I'm really depressed and sad, and I'm unable to talk to my family about it because I don't like worrying them. I find it relaxing and soothing talking here, and also listening to music and watching Disney movies.
I just worry all the time, I can even wake up in the middle of the night worrying. And I also get stomach pains, chest pains and headaches. The pain varies between a 5 and a 7 but very rarely any higher than that. I always thought I was seriously ill but this year we took me to the doctors and they did a blood test, which resulted in me passing out outside of the doctor's and being found by a woman and her daughter - very embarrassing! Luckily it turned out that nothing was wrong with me, but the pains I get are still very uncomfortable and I don't even know what they are.
Does anybody else here worry and get pains? If you've got any good coping methods I'd love to here them.
Someone I know produced a pain toolkit to help people manage painful long-term conditions. I am going to get in touch with him and ask if it has been adapted, or could be adapted, so it is helpful for autistic people who may have slightly different requirements.
Stupidly enough I never connected my obsessive skin picking (anything on my face and upper back that feels as if it is sticking out) with stimming, until you just mentioned it Sunflower!
What is that about that pain toolkit? I'd like to know as I either feel a lot of pain or hardly any - the latter when I am supposed to feel major pain...
That's really interesting Jonesy - among my prolific medical notes are all kinds of things that suggest autism - frequent ear infections as a child, labyrinthitis, anxiety, conditions that arose because I neglected my health, conditions aggravated by picking at my skin, which I never thought of as 'stimming'.
Pain can be a very limiting factor. I'm recovering from an ankle injury and it hurts really badly to walk. I'm on four walks a day which I have to force myself to do. To me the pain seems like a signal from my body warning me I am aggravating my injury. The physiotherapist told me off for flinching when he touched my ankle lightly (it really hurt!) - the more I discover about autism the more everything starts to make sense.
I am going to talk to a former colleague of mine about adapting a pain toolkit he developed for autistic people. The mainstream approach does not always meet our needs.
Sorry to hear you haven't been able to play in a band for a while. I struggled in an orchestra - I could either get my violin bow going up and down with everyone else's or I could play the right notes - I ended up miming most of the time! Do you still play just for your own entertainment and satisfaction?
Sunflower said:I have begun to work out that a lot of what I experience pain wise is probably due to being hyper-sensitive so I feel sensations in my body very strongly. Also anxiety gives me physical symptoms and when I worry that something is wrong with me this then makes me even more anxious!
I am exactly the same, have been all my life and it is only since my diagnosis that I've come to the same conclusion. I've had quite bad back and hip pain over the last few years, recently I had both x-rays and and MRI but neither came up with anything substantial but the pain is very real to me and stops me doing things. I haven't played in a band for the last 3 years partly because of it... and partly because of my difficulties in socialising with band members etc.
Hi - yes I can really relate to what you describe. As a child I got really strong pains in my chest and thought I was having a heart attack. I had lots of ear ache too, and pains in my arms and legs, stomach problems... usually the GP couldn't find anything wrong. I felt like a hypochondriac.
Anxiety and pain continued into adulthood. I would get toothache, go to the dentist and be told nothing was wrong. In the days before the internet I kept phoning my mum to look up various symptoms I was having in her medical encyclopaedia - she gave the book to me in the end so I could look things up myself.
I have begun to work out that a lot of what I experience pain wise is probably due to being hyper-sensitive so I feel sensations in my body very strongly. Also anxiety gives me physical symptoms and when I worry that something is wrong with me this then makes me even more anxious!
This video explains about some mental and physical health stuff that may be relevant. The section discussing health is at about 26:45
m.youtube.com/watch
I usually have quite a few small health problems at any one time, plus a couple of long term conditions that won't go away. I am trying to work on ways of reducing my anxiety levels generally by not putting myself under too much pressure, doing activities I enjoy and asking for information and support if I am worried about something.
Hope this helps a bit.
Hi, I am not autistic so I don't know if this will be relevant to you but I do get really bad anxiety and when I get really anxious I do suffer severe stomach pains and problems as well as it triggering migranes. I did not put the stomach pains and anxiety together for along time just thought I was falling apart. But eventually I spoke to the doctor about it and it turns out I have stress induced irritable bowel syndrome (sorry for the info!) I was given medication which got the pains under control while I worked on my anxiety (easier said than done) now I know the cause I find at least I'm not worried about the pain and as such it calms down but as soon as I get stressed ( God forbid an argument with my partner) I'm doubled over looking for a loo!
As for the chest pain could this be a panic attack? When I had my last full blown one it felt like someone was sitting on my chest and I couldn't breathe