Long before I was diagnosed with Autism I was aware of the problems that I experienced with pain and tension, so much so, my dentist referred me to the hospital for tension in my jaw and for grinding and clenching my teeth. I was breaking nightguards every two to three months.
In the end, I was put on Amitriptyline and then Mirtazipine to help reduce the tension in my jaw, neck, and shoulders, and in turn the pain. It has helped but it never fully solved the problem, I am only breaking nightguards every one to one and a half years now, much to the delight of my dentist. Nightguards are not cheap, even on the NHS.
Since diagnosis and the development of new symptoms, I have spent quite a bit of time looking into why I experience so much pain and tension within my body and a few interesting topics come up.
It’s a Sensory Thing
Sensory processing differences often come down to seven senses – sight, smell, touch, hearing, taste, proprioception, and vestibular – but there is another sense, an eighth sense, which is called Interoception.
I am beginning to realise that I cannot tell when my body is tensing up. until it is much too late and I experience a lot of pain. For many years now, when I have had a cough, I have had a shooting sharp pain that travels through my neck and up the back of my head to my forehead. It feels like my head has a tight band all around it and then I feel as though I am going to pass out. It terrifies me at times because the pain is unbearable; but it only lasts until the cough stops, so a matter of 10 – 15 seconds, unless I am having a coughing fit. The muscles in my neck tense so much, I swear it reduces my circulation, hence feeling like I am going to pass out.
The thing is because I am not aware that my muscles are beginning to tense up, which happens a lot of the time, I am now having to regularly remind myself to try and loosen my muscles. Which doesn’t happen easily, its something I have always found hard to do.
I remember being in the second school doing PE, the teacher would make us lie on the hall floor and go around raising and letting go of our right or left arms to see if we were “relaxed enough”, and then we could leave to go change back into uniform. Lets just say it was a rather stressful activity for me and I was always the last person to leave the hall because I could not let go of the tension.
Right now, I am trying to learn to be more aware of my muscles before it reaches the point where it causes excrutiating pain, as it is my arms and legs are always in pain and feeling weak where I tense them up so much. I am trying to learn to relax.
I have been practicing muscle relaxation exercises, by actively tensing my muscles and releasing them at certain periods throughout the day. It hasn’t become a habit yet, I have to keep reminding myself to do it, but there are lots of times I still forget.
Pain
My partner and step-kids would laugh at me and tease me by poking me in the shoulders and legs, we could never understand why a light poke would hurt so much, far more than the pressure that was applied warranted, and would leave a massive red mark. I get it now, when I was diagnosed with Autism, I realised I also had Sensory Processing Disorder, which causes me to experience pain at a higher intensity than I should.
It does cause its problems, Paramedics and Medical Staff ask you to gauge your pain on a scale between 1 and 10, I have no idea how to answer that half the time as I am not sure. I was taken to hospital by ambulance for a Gallstone Attack (I didn’t know that was what it was at the time), the pain was unbearable, it was worse the worst pain I have ever experienced so could only rate it as a 10. But, when I was in labour with my daughter, the contraction pain was really low, but I had a pain in my leg that was about an 8 and worse than the contractions themselves. Things that should hurt, often don’t and things that shouldn’t hurt, hurt a great deal. It means I can’t always trust my own judgement, and I can’t always tell when something is serious and when something isn’t.
Conclusion
Believe me when I say that can be quite scary at times and can result in experiencing Health Anxiety. I saw my dad die from a heart attack when I was 17, I remember the look of pain on his face, and pain has become an anxiety a massive trigger for my anxiety in the past.
I have noticed my daughter is experiencing pain in a similar way to me, she hates having her hair brushed as it hurts to much, and some days it will even trigger a stomach migraine. I have to be so careful brushing her hair in the mornings, there are only a few hairbands that she can tolerate in her hair and the only style she can put up with is a normal ponytail for school the rest of the time she prefers to wear it down.
She needs a lot of reassurance when she falls and hurts herself, she panics about the prospect of experiencing pain, she is terrified of dogs in case they jump up and their claws dig into her leg as it hurts so much. She avoids them at all costs and we have to walk in silence past my neighbours house in case their dog hears us and comes running out. She stopped going to a friends house as they got a new dog and she couldn’t cope with it. The only dog she can cope with is the therapy dog that visits school as she knows it is well trained; other than that her phobia of dogs is starting to take over in case they hurt her.
As a child, I remember being called a drama queen on many occasions, when I was ill or when I had hurt myself. I wasn’t, it was just I experienced pain and illness differently. Now that I can recognise that within myself, I can support my child differently to how I was treated when I was ill or hurt. I understand what it is like.
It is funny how many things have started to make sense since I was diagnosed as Autistic, I am slowly learning what Autism means for me and for my daughter.
Autism Parenting 