It had been a while since I tried using a weighted blanket, though I had been getting good use out of one for the occasional nap before we moved house. The whole moving process saw this trusty aid put into storage and left there and it wasn’t until I considered that I needed to do whatever I could to soothe my overactive sympathetic nervous system down again, in the name of feeling less fatigued or sleep deprived than I have been lately, that I thought about reviving the practice.

Just to backtrack, I first looked into weighted blankets years ago because they are recommended for autism and for reducing anxiety and stress, improving sleep and inducing a sense of calm and of being more grounded through deep pressure stimulation. The very first one I ever purchased turned out to be way too heavy for me and was promptly sent back. I then bought one that was designed for children and teens which was around 3.75 kilos and was much more tolerable, at least so that I could use it on the sofa for my naps or when needing sensory soothing, but I vaguely recalled that I had struggled with using it overnight, for reasons that escaped all these years later. As I have been exploring the positive effects of deep pressure through tighter clothing lately, to help with my proprioceptive challenges to do with hEDS, it made sense to consider that a weighted blanket could be a boon at times when I want to take my overactive nervous system down a peg or two to gain some quality rest so I was ripe for experimenting with the idea again and decided to dig my weighted blanket out of storage.

So then I tried it last week and liked the feeling of it, a lot so, in my usual gunshot way, ordered a new and better one for the bed, still only 4.7kg (they are meant to be no more than 10% of your body weight so this was way under) and I also chose carefully for non-toxic breathable materials. The very day it arrived, I laid it out on the bed and got straight under it to try it out. I was immediately so soothed that, instead of dashing off to start on my afternoon of painting as I had been on my way to do, I just lay there in a kind of soporphic haze watching the birds swooping around outside my bedroom window, feeling so much better for the 40 mins or so of impromptu pause in my hurriedness that I thought “this is it, this is exactly what I need” and resolved to sleep with it on my bed every night from now on.

The effect seemed promising for the first night (though it’s interesting I described having “energy flu” in my last post, shortly after this) and probably the second. By the third I was into a very severe flare-up of muscular pain and virtually a subluxation of the sacroilliac joint that had me barely able to walk and having to attempt emergency remedial actions on my pilates mat plus using a TENS machine nearly all day long. At first, I attributed this (or at least tried) to other things though it was very hard to make sense of such very severe symptoms coming on more or less out of the blue unless provoked by something I had done. Then, on night three, I climbed under the weighted blanket again and immediately felt intense resistance to it as its weight seemed to bear down on me in quite the intolerable way as I tried in vain to get comfortable (which always takes me a good few minutes anyway) and, in a fit of pique, I eventually dropped it to the floor, returning to my trusty wool-filled duvet and a far better night’s sleep. Ironically, one of the benefits often quoted is that a weighted blanket may reduce muscle tension but I seem to be nothing but a walking mass of muscle tension since I started using mine; so, was this going to turn out to be one of those paradoxical reactions I tend to have to things, yet again?!

In the morning, I consulted whatever online conversations I could find on the topic of weighted blankets and hEDS, an angle I hadn’t specifically looked into before because I wasn’t thinking through the eyes of hypermobility last time I experimented with one of these (I bought my last one a good year before I even considered hEDS). There, I found a very mixed bag of opinions but it certainly included more than a handful of scenarios like mine where users found the weight unbearable or that it caused severe worsening of pain. One woman had likewise tipped hers onto the floor where it had remained ever since, being too heavy for her to lift up again, where it had turned into an impromptu bed for her cat!

As the mists began to clear on what had happened to me last time, my memory jogged by this latest experience, the theme in common seemed to be that the weight of the thing prevents movement…and pain management of hEDS (or fibromyalgia, for that matter) relies on frequent changes of position, not only during the day but during the nighttime as well.

It’s true, I am a great big fidget during the night, needing to frequently shift not only myself but an array of pillows and various other body supports from one side to the other and then back again to stay even remotely comfortable as I attempt to stay asleep for the allotted hours. With almost 5 kilos of weight holding me down, the overriding sensation is of feeling that you have no choice but to surrender to the weight, which is exactly the factor designed for instilling that same feeling of stillness and calm that I liked so much lying on my bed in the daytime. However, for the whole duration of the night in bed (which, in my case, is around 8 hours) that’s a very long time to be “encouraged” to remain in the same position. Its not that I don’t turn over at all when the blanket is on me but its much harder to do and, subsconsciously, I think you kind-of give into it more than you would to a normal duvet (especially when in a state of zombified inertia in your sleep), postponing all those little fidgets because they are such hard work.

The effect is to not only have to sustain a considerable extra weight on top of your body but to end up moving far fewer times over the course of the night whilst asleep and I strongly suspect that the accumulated effect of that has been for soooo much more pain to build up in my muscles over the course of just a few nights of using it that I am now in one of the worst flares I can remember. Incidentally, I have long suspected that the reason my whole night tends to be more like a series of short naps is that this need to move frequently is so deeply ingrained that my body (and pain levels) wake me up frequently to make sure that I do. When I do sleep deeper or longer than usual, for instance if I take anything before bed to help me sleep, I often notice more pain and stiffness the next day!

As chance would have it, in the book I am reading (Understanding Hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder by Claire Smith), I have just come across a quote from Dr Faber of the Milwaukee Pain Clinic who says “In my professional experience often the greatest symptom (of Fibromyalgia) is lack of endurance and the need to change positions. The pain discomfort is often described as a pulling or aching that worsens with time to a rather severe pain. It lessens when changing from standing to sitting or from these positions to lying. This cycle, of course, repeats as a chronic pain. Often times the joints will be noted to crack and pop. My examinations have almost always revealed an undiagosed hyper-mobility syndrome of the congenital or benign types.”

Of course, receiving a diagnosis of hEDS is what just happened to me after many years of being diagnosed with Fibromyalgia so I am that person with just that kind of pain as described and, yes, my joints often pop and crackle in the night. So I think that’s exactly right; lack of movement is never my friend at any time of day, as I found to my detriment last summer when the effects of long-covid had me sofa-bound for so many weeks, too fatigued and dysautonomic to move far and yet the consequences of so little movement were almost worse than the originating situation and, over time, led to a general worsening of symptoms that I am still having to deal with months later. In other words, I have never been more wary of anything that encourages reduction of movement!

So my final conclusion, and I hope that I remember it this time, is that weighted blankets are OK for those 40 minute or so naps or quiet time in the day when I simply want to pull the plug out of my ADHD hyperactivity and grab myself some “sympathetic” down-time before I launch into the next part of my day or risk overdoing things. I’m sure it will be great next time I feel sensorily overwhelmed and want to pull into a comfort-cave and be completely still for a while. However, as far as night time sleep is concerned, I suspect they can sometimes be a quite perilous combination with Fibromyalgia or hEDS and, in my case, to be avoided except at times when in dire need of soothing so this post is partly a memo to myself and I will be encouraging complete liberty and lightness of body parts in bed from now on. There’s one thing this boils down to: my sympathetic nervous system is pretty much permanently amped up because of increased sensitivity and constant pain, hence considering use of a weighted blanket as an oft recommended means of calming the nervous system down but if the weighted blanket itself is only adding to my pain levels, pushing me further over my threshold, then there really is no point.

Of course, this might not be your experience and it could still be worth the experiment to find out if a weighted blanket is helpful for you but, as ever, I am just putting it out there in case my experience offers any useful insight.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not intended to serve as medical advice, diagnosis, treatment or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.