pazasaurus
New Member
So whenever I become stressed, anxious or get sensory overload, I get a lot of physical symptoms. Some of them are so bad that they are severely disabling - and I am so confused about this and wonder if it is actually related to autism or if it's something else entirely.
I have spoken to my doctor about it, had loads of tests over the past 2 years that all came back normal and I suggested that I might have Myalgic Encephalomyelitis (ME) or Fibromyalgia. But recently my partner has noticed that my symptoms only flare up in response to stressful events or sensory overload, which is not typical for ME or Fibromyalgia. ME is characterised by delayed symptom flare-ups or "crashes" in response to physical or cognitive activity as well as sensory input, and Fibromyalgia is a chronic pain disorder that also doesn't tend to flare up in these patterns that I experience.
For example: Whenever I go out shopping I need to use a wheelchair because if it's particularly busy and noisy, the sensory overload can cause me to suddenly collapse and hit the floor. To other people, it looks like I've fainted - my body goes completely limp for anything from a few seconds to several minutes and I appear to be unconscious, even though I'm completely awake. I usually recover enough to stand up again and walk a bit, but sometimes I cannot even stand up again because my legs feel extremely weak and heavy and/or I feel dizzy. I just feel exhausted for several hours after that and usually need to rest in bed. I avoid going out without my wheelchair because of this.
Here's another example: If I'm particularly stressed, have been talking about something serious/stressful or if I get emotionally upset and/or cry, I tend to feel physically nauseous, my gut feels unsettled and gripey and I need to go to the bathroom more frequently. Being stressed also makes me feel extremely physically tired just like sensory overload does. It can also cause physical pain in my muscles and really bad neck pain that can be incapacitating. I sometimes get severe pain in the left side of my neck. Even being mildly stressed can flare up these symptoms so badly that I am forced to stop whatever I am doing and lie in bed for several hours.
The reason why my partner and I are starting to think that I don't have ME or Fibromyalgia after all is because I can hyperfocus on things that take a lot of mental effort for hours without it causing flare-ups, and I can also do some light physical activity in quiet environments (such as going on a walk in a nature park) without it causing any symptoms, which is not typical for these illnesses at all. However, I wasn't always like this - I have had fainting/collapsing episodes throughout my life but they weren't as bad (I've only been a wheelchair user for about 3 months), and most of the symptoms I am describing here have only been happening for the last 2 years. They had a very sudden, acute and extremely severe onset following a period of intense stress and burnout and this kind of onset does happen with ME. But, I have recently been made aware of autistic burnout (until I did some Googling, I didn't know that it even existed) and wonder if that might be what I have been going through.
I used to think that I was having ME crashes after the aforementioned trigger events but after a long discussion with my partner, we now believe that these "crashes" might actually be autistic shutdowns and that the chronic base-line symptoms are the autistic burnout.
But I don't know if that's actually the case because I'm not completely familiar with what shutdowns or autistic burnout looks like, and I don't have clinical confirmation that I am autistic. I was assessed a few years ago and the result was inconclusive. I am trying to get reassessed but I live in the UK and the NHS has a huge backlog of a waiting list because of COVID. I have no idea when the assessment is going to happen.
I am very curious if anyone else experiences these kinds of symptoms (or anything similar) as part of their autism - and if anyone else has experienced a permanent regression in their skills and/or chronic worsening of their symptoms after autistic burnout. And I'd be especially curious to know if there are any autistic people who are wheelchair users (or users of any other physical adaptative equipment) specifically because of their autism.
I have spoken to my doctor about it, had loads of tests over the past 2 years that all came back normal and I suggested that I might have Myalgic Encephalomyelitis (ME) or Fibromyalgia. But recently my partner has noticed that my symptoms only flare up in response to stressful events or sensory overload, which is not typical for ME or Fibromyalgia. ME is characterised by delayed symptom flare-ups or "crashes" in response to physical or cognitive activity as well as sensory input, and Fibromyalgia is a chronic pain disorder that also doesn't tend to flare up in these patterns that I experience.
For example: Whenever I go out shopping I need to use a wheelchair because if it's particularly busy and noisy, the sensory overload can cause me to suddenly collapse and hit the floor. To other people, it looks like I've fainted - my body goes completely limp for anything from a few seconds to several minutes and I appear to be unconscious, even though I'm completely awake. I usually recover enough to stand up again and walk a bit, but sometimes I cannot even stand up again because my legs feel extremely weak and heavy and/or I feel dizzy. I just feel exhausted for several hours after that and usually need to rest in bed. I avoid going out without my wheelchair because of this.
Here's another example: If I'm particularly stressed, have been talking about something serious/stressful or if I get emotionally upset and/or cry, I tend to feel physically nauseous, my gut feels unsettled and gripey and I need to go to the bathroom more frequently. Being stressed also makes me feel extremely physically tired just like sensory overload does. It can also cause physical pain in my muscles and really bad neck pain that can be incapacitating. I sometimes get severe pain in the left side of my neck. Even being mildly stressed can flare up these symptoms so badly that I am forced to stop whatever I am doing and lie in bed for several hours.
The reason why my partner and I are starting to think that I don't have ME or Fibromyalgia after all is because I can hyperfocus on things that take a lot of mental effort for hours without it causing flare-ups, and I can also do some light physical activity in quiet environments (such as going on a walk in a nature park) without it causing any symptoms, which is not typical for these illnesses at all. However, I wasn't always like this - I have had fainting/collapsing episodes throughout my life but they weren't as bad (I've only been a wheelchair user for about 3 months), and most of the symptoms I am describing here have only been happening for the last 2 years. They had a very sudden, acute and extremely severe onset following a period of intense stress and burnout and this kind of onset does happen with ME. But, I have recently been made aware of autistic burnout (until I did some Googling, I didn't know that it even existed) and wonder if that might be what I have been going through.
I used to think that I was having ME crashes after the aforementioned trigger events but after a long discussion with my partner, we now believe that these "crashes" might actually be autistic shutdowns and that the chronic base-line symptoms are the autistic burnout.
But I don't know if that's actually the case because I'm not completely familiar with what shutdowns or autistic burnout looks like, and I don't have clinical confirmation that I am autistic. I was assessed a few years ago and the result was inconclusive. I am trying to get reassessed but I live in the UK and the NHS has a huge backlog of a waiting list because of COVID. I have no idea when the assessment is going to happen.
I am very curious if anyone else experiences these kinds of symptoms (or anything similar) as part of their autism - and if anyone else has experienced a permanent regression in their skills and/or chronic worsening of their symptoms after autistic burnout. And I'd be especially curious to know if there are any autistic people who are wheelchair users (or users of any other physical adaptative equipment) specifically because of their autism.