Published on 12, July, 2020
Hello,
I was diagnosed with ASD following many years of pursuing a diagnosis for my bizarre severe neuropathic pain. Initially doctors thought that some of my psychological difficulties and change in behaviour was as a result of the severe pain I suffer, but my husband spotted that I might have ASD.
Recently I found a study that indicates that difficulties with touch/sensation in ASD might be related to low levels of C fibres, which is also the cause of neuropathic pain. I spent a month in the Neurological Hospital in London, where neurologists tested for all of the things that cause such catastrophic loss of C fibres.
I would be interested to know if anyone else has any numbness or unexplained neuropathic pain in their hands/feet/mouth/face etc. Neuropathic pain can be very varied, anything from aching to electric shocks, stabbing pain, or at my extreme, the skin looking/feeling like it's actually been scalded by boiling water.
I'm currently doing an MA in creative writing, currently looking at some of the way ASD affects language use and altered awareness of self (as it had never occurred to me that constantly thinking of myself in the second/third person was unusual/abnormal until I was 'told off' for it), as I've discovered that there is a good deal of unawareness in academia about the differences between the way we think and write and the way neurotypical people communicate. I am currently working on a collection of short stories and a novel based on my experiences, dealing with undiagnosed ASD in the harsh environment of 1970s industrialised South Wales.
I'm also a fine-art printmaker, my art has been exhibited in many exhibitions and galleries across the UK, although I'm taking a bit of a break from this while I finish my MA. I find great solace from my dogs, my horse and my birds, who are all high-achievers in their own right.
Hello and welcome. Good luck with your MA. Hopefully you can find some more information about your pain and how it might be effectively treated.
The trouble with accurate pain diagnosis is that it can be difficult to describe. My mother has something similar, but getting any kind of useful description out of her is impossible as she doesn't really have the vocabulary to describe it. For ages, I thought the pain in my feet (which I'd describe 'as if soles had been beaten by skicks') was something to do with my hyper mobility and ignored it, until it became clearer it was all part of the neuropathic spectrum, even though it is 'triggered by use' or 'mechanical stimulation' as a neurologist would term it. I'd say anything that involves numbness, tingling, burning, itching or stabbing/electric shock is likely to be neuropathic.
This was the study I found that discovered low levels of C fibres (i.e. sensory nerves) in children with ASD. Just imagine what these children may feel like by the time they are 50+ with nerve levels dropping through natural loss over time. Eventually the lack of input along sensory pathways causes changes in the CNS that amplifies all sensory input, which is whats happened to me to the extent the brain now interprets slight increases temperature to be as noxious as scalding hot water, and turns on the same inflammatory response in the affected skin as if it had suffered a real burn. This is at the extreme end of the problem, but it's essentially the same process that makes so many people with ASD insensitive to light and noise, and I can't imagine I'm the only one that's experiencing this sensitivity as some kind of bodily pain.
www.omicsonline.org/.../first-skin-biopsy-reports-in-children-with-autism-show-loss-of-ctactilefibers-2329-6895-1000262.php
hello and welcome!
Not sure what I have is neuropathic pain, but I have suffered from RSI type of problems in both arms for nearly 30 years ,At times this is "stabby" pain, other times achy. It;s never really been fully diagnosed, nor has it ever entirely gone away - in that time I did have 1 period about 20 years ago of about 3 years pain free, but since then no more than a few months maximum. And for the last few years maybe a few weeks maximum without pain. However there is a direct use v pain correlation as it is definitely triggered by use.
Having only very recently been diagnosed AS it is not something I have really considered if there was any link. Pretty sure there is with other "physical" issues i have relating to sensory issues however.
Hmmm...interesting....