I'm off to Amsterdam with Hattie the Otter and family later today and I have told Sally to get some work done while I am away. She wants to tell you all about how her Hypermobility Syndrome symptom (HMS) of fidgeting (not really a symptom but you'll see what we mean in a bit) links in with when she has reached her limit and it's time for bed.
I wrote this blog post a few years ago Foggy Just Thought Sally Was a Bit Bendy, in it I explained my health timeline and how Hypermobility Syndrome is common in people who also have ME/CFS. The longer I do my advocacy the more I realise that our illness intertwines with many other chronic illnesses.
Recently, I started to notice that I fidget around 10 minutes before my body tells me it's bedtime. I've written many times about how pacing and setting my own personal bedtime routine has trained my body to shut down for sleep by
10.15pm EVERY NIGHT. There is no such thing as a late night or lie-in in my M.E world! It's very difficult to force myself to stay awake later than 10.15pm and if I ever manage it, boy oh boy do I pay for it! That extra hour or so watching the end of a movie could affect my energy levels for a couple of days afterwards. I did wonder if the fidgeting was an M.E thing (rubbish memory - I had forgotten that I've done the fidgeting thing for decades!!) but I saw the following tweet from @Ehlersdanlosuk (Ehler-Danlos Support UK) today,
Children hEDS will be more ‘bendy’ than their peers & hypermobility can cause problems. Instability of the joints might lead to dislocations or subluxations (partial dislocations), children may suffer from pain, their joints may click, and they may fidget to relieve discomfort.
As I said in my previous HMS blog, I have had symptoms since the age of 14 and so partial dislocation, joint pain, clicky joints and fidgeting are kind of normal for me. The realisation that the fidgeting hits 10 minutes before my body shuts down at night is a new thing though. Does anyone else with the combo of HMS and ME/CFS notice this? Or maybe you 'just' have ME/CFS and get this symptom too? Let me know please.
Recently, I have found myself doubled over in my chair, chin resting on my hands just to keep my head up, to watch the last 10 minutes of a TV programme. I am usually wriggling slightly and trying to crack my back to stop the weird shivering sensation going up and down my spine. Although I have barely any energy left I am having to squirm and shift in my seat to overcome the discomfort in my spine. I'm wondering if there could be an element of Orthostatic Intolerance thrown in too as I simply lose the ability to keep my spine straight and vertical by 9.50pm!
Joint-wise, my HMS has eased but I still have joint pain during cold weather and my right shoulder is still prone to partial dislocation. I find it odd that HMS has been replaced by ME/CFS in my health priority list, but there are a few remaining symptoms that I am so used to experiencing they don't register with me anymore. These same symptoms would ordinarily warrant attention by anyone else as an illness in their own right.
I remember, before getting side-swiped by ME nearly 12 years ago, I lived in a student house and friends used to come over and watch movies in my room. I used to always have to get up and move around during the film as the weird shivering sensation in my spine was too strong to ignore. I would often get 'For god sake sit still!. Sorry!
Just to throw a really bizarre idea into the mix. I wonder if my shivery spine back in my 20s was a sign that my M.E was dormant? I had M.E (undiagnosed) in my teenage years and it flared up again when I turned 30. I do wonder if there had been indicators that I just didn't pay attention to during my late teens-twenties. I have vague recollections of being so tired after climbing the hill up to my flat that I slept the second I got home. At the time, I was a lot heavier than I am now and put it down to being unfit but.....what if?! It's all hypothetical, I'll never know the answer.
Sally (and Foggy OBVIOUSLY)