By Heather L. E. McKay
I have fibromyalgia, I’ve been dealing with it for nearly 20 years, but only officially diagnosed with it for about 17. The reason it takes so long to diagnose is because it’s diagnosed by eliminating every other possibility first. Scientists and doctors don’t know why it occurs or why it’s likely to occur more often between the ages of 35 and 45, more so in AFAB (assigned female at birth) AND autistics.
But I’m here to tell you that there are some (somewhat) obvious (to me) reasons why it may be so prolific in autistic people.
When I began the process of being diagnosed with Fibro, I’d already been diagnosed with many co-occurring disabilities and conditions like: Raynaud’s, Endometriosis, weakness in joints (EDS type symptoms), lack of iron and salt, temperature induced urticaria, ear problems, skeletal issues, hay fever, 4 sleep disorders and a couple other issues, and of course delayed speech when I was a child… but I hadn’t been diagnosed as autistic YET – when I started the fibro process.
Yet????? Yes – it’s unbelievable to me that autistics are known to have an alphabet soup of co-occurring issues – and yet not one doctor put two and two together (for me) to equal autistic. It still pisses me off thinking of all the wasted years, where I could’ve been helping and supporting myself if I’d known. And so many of my other issues might’ve also been picked up – like APD, PDA, OCD, ADHD, etc etc – if I’d only known years earlier.
The main problems with not knowing you’re autistic at a young age, is that you can’t support your own needs because you don’t know what they are, that you can’t avoid things that harm you (for the same reason) and you can’t get that pivotal look into possible medical conditions that are so common in so many autistics. Knowing can be an eye opener that lifts the proverbial lid on even more of that alphabet soup of diagnosis that you can then treat and possibly even prevent ( I’m talking about some medical conditions….. you can’t prevent/cure autism – because you’re born autistic).
This brings me to what is Fibromyalgia; because I believe, that in some people – it may actually be preventable; if you know the things that can trigger it and why.
So, what is Fibromyalgia? No-one seems to really know, but they all agree that the result for people who have it is that they have widespread pain, fatigue and sometimes brain fog; since it’s pretty hard to concentrate when you’re experiencing unbelievable nerve pain throughout your whole body.
People without the condition consider it to be caused by genetic and environmental issues. I say ‘without’ because when you’re experiencing it – and have the lived experience of something – you become the expert. I find the idea of the statement that its ‘genetic and environmental’ funny, because that’s the same thing they say about autism – and in a way they are right – but it’s the supposition that I find to be the funny part because they are so damned scared to make an educated guess, or to say outright – you’re born autistic, and you are susceptible to Fibro because of the way you are wired (autistic wiring) makes you susceptible to nerve problems and nerve processing issues. But I’m not afraid obviously – about either thing, I’ll say it loud and proud – I’m autistic and I have Fibro because my autistic wiring is different.
Autism is genetic – it’s heritable because autistic people have autistic babies. My family alone has a history of autistic type behaviour going back to 1774. And we are susceptible to certain genetic conditions because of that wiring and nervous system make up.
Autism is a neuro-system difference in the way our brain/bodies are wired. We are wired to experience pain/ sensory experiences/ process language and process or experience everything and everyone around us differently to neuro-typically wired people. And many people believe that autism is actually an overabundance of unpruned synapses that causes nervous system differences and sometimes nervous system overload. I believe Fibro is an extension of that neuro-wiring / synapses difference.
Some researchers believe that Fibro is caused by physical or emotional stress, others from virus or illness, others from trauma and PTSD, and others again think it’s due to how the brain/body processes nervous system pain. Now that’s exactly where we hit the nerve on the head (sorry -bad joke).
If autistic people are autistic because of the way we are wired, and that wiring affects the way we sense sensory experiences, and react to the world around us, and process that world as well- through our neurosystems and synapses that are ‘different’ – then there’s the connection! There’s the reason why more autistics than any other community is prone to Fibro.
I believe that Fibro is caused by all the above suppositions of its causes. I believe that when a person has to too many synapses and different wiring – it makes them ‘at risk’ or ‘susceptible’ to Fibro – but that it isn’t activated fully until we experience so much nervous system/synapses overload that our systems can’t handle it. This is when our nerves become tired, frayed and frazzled. They start to feel painful, and then that pain is radiated throughout the whole body through the nervous system.
But what started it? You guessed it – autistic burnout/ nervous system overload / synapses errors, and…… trauma, stress, illnesses, and being in a world that is not built for us. The things that cause autistic burnout can eventually lead to Fibromyalgia. Because our bodies aren’t built to constantly experience burnout after burnout after burnout. And that’s why I believe that most of us with the condition (were obviously susceptible to it in the first place) had some pain throughout our lives, but it didn’t become obvious and diagnosed until the ages between 35 and 45. Because you are more likely to have experience more trauma, more stress, more burnouts more everything by the time you hit a certain age.
Eg: the older you are the more stress and burnout you experience and the more likely you are to develop Fibro. If you experience more nervous system damage earlier in your life – the earlier, you can develop Fibro. And that’s also why Fibro patients will experience difference in the areas they experience the pain, or how/when it develops – because their life experience of nervous system damage will differ from person to person.
I also believe this relates to AFAB people as well. AFAB people are more likely to experience discrimination, stress and are more likely to mask. The more masking we do through our lives -the more pressure it puts on our nervous systems and stresses us out – and leads to burnouts, which is common in AFAB and the LGBTQ+ or minority groups. The more stress and oppression – the heavier the burden on the nervous system.
Many women are diagnosed after childbirth, I just happened to be diagnosed before childbirth -due to the sheer amount of damage and trauma I’ve experienced to my nervous system throughout my early life. While ‘childbirth’ is not the cause – it could be a contributing factor to the nervous system degrading or deteriorating. Pregnancy, childbirth, the stress on the body and emotions of having a baby, giving birth and then the aftermath, and the worry, guilt and stress of looking after a baby and raising it- all contributes to nervous system stress, and I believe this to be a huge contributing factor in developing Fibro especially in non-autistic (allistic) AFAB people, but can develop in any neurotype at any time.
My nervous system damage centred in my left knee (because I sit on it all the time) – due to EDS issues and the need for proprioception input in that knee. It also centred in my right elbow. I’ve always had EDS and early onset arthritic type pain in my hands/arm (from childhood) -it made my handwriting impossible to read and incredibly painful for me to write. My Fibro pain – when it began – it began in those areas that I’d already experienced nervous system, muscular and skeletal issues as well as other issues. And then it spread throughout my body.
All the specialists ruled out every other possibility – arthritis, EDS, Lupus, sprains, strains, breaks, muscular fatigue, chronic disease or autoimmune issues (my existing issues, my family’s hereditary issues) and everything else… they decided the only possible thing it could be – was Fibro and it was specifically nerve pain.
Now other people may have different experiences to me, and different pain and different diagnoses (or different co-occurring disabilities), and have been diagnosed earlier or later than me – but I want you to talk to me… does this sound plausible? Does this sound like a possibility for you and your Fibro development? Because I’m betting it sounds pretty spot on…
Have any of you gotten your Fibro under control, like I have? Mine isn’t gone completely – because once you develop Fibro – there’s no cure, there’s no going back. But have any of you diminished the attacks and been able to lessen the symptoms or been able to even reverse or stop some of the issues – for you?
Because I have – How did I do it? I did it the same way you get over autistic burnout. I stopped all demands, all pressures, I rested, I cleared my mind, I dealt with trauma, PTSD, cPTSD, and stress. I reset my nervous system. And the attacks started to lessen. I was able to stop taking so many pain killers, I was able to clear my head and go to sleep occasionally. And it slowly (extremely slowly) improved. I managed week by week, month by month, year by year to claw back a reasonable semblance of a life.
But every time I look like I’m entering autistic burnout out again, or I become overly stressed, or another trauma occurs, or something truly upsets me, I’ll have another Fibro attack and be exhausted and in pain. Those episodes have become less frequent over the years because I’ve learnt how to reset my nervous system- and I’m glad to say that I finally feel ‘in control’ of my Fibro.
Other things that cause my Fibro attacks to reignite are my co-occurring disabilities.
If my Raynaud’s, or my EDS symptoms, or my endometriosis or my urticaria or any of the other medical diagnosis rear their ugly heads – so does my Fibro – because guess what? They’re connected – because your nervous system is connected to everything inside you. Because when you are unwell your nervous system reacts – and that causes the Fibro to react simultaneously – because it IS YOUR NERVOUS SYSTEM reacting. You can’t have Fibro without your nervous system – the same as you can’t change being autistic – it’s all connected because that’s the way we are wired. It’s not wrong (although the pain feels pretty bloody wrong) – it’s just a different wiring system.
To help Fibro, prevent it, or to control it – you need to do what you do to help your autistic wiring – you need to work with your brain/body/nervous system… reset it, rest it, calm it and support it. In any way that helps you.
Don’t do what helps ME – do what helps YOUR autistic/allistic system to reset. Do you have a hobby or trauma technique that helps you in times of stress and burnout? DO THAT! Whatever that is! Lean into your needs, cuddle yourself, go to bed, take nanna naps, use hot water bottles, read a book, play a video game, cuddle a pillow or a loved one, eat your favourite safe food, turn all the lights off and sit in the dark patting a dog. Do whatever resets YOUR nervous system and then come back in a few weeks and tell me if it worked for YOU.
Good Luck! Fibromyalgia is bloody hard, but you can take your life back, you can learn to understand your own body and its individual needs, and it doesn’t need to destroy you. Listen to your nervous system – what is it telling you?