Sweet Relief

For the past year I have been tortured by my body. I have long since had SI joint dysfunction as part of my Ehlers-Danlos Syndrome, but in the past twelve months it has developed teeth and been accompanied by neck problems, numbness and stiffness on a grand scale. The pain would be annoying, but bearable, during the day but the second I lay down at night to sleep it would go into overdrive. The area around my SI joint would throb, I had shooting pains down both legs right to my toes, it felt like every ligament was burning and tearing and within minutes my left leg would be numb from my hip to my ankle.

For several months I barely got any sleep, being woken every hour on the hour by pain and when I did finally drop off I was woken by menopause induced hot flushes. It’s no wonder I’m exhausted. In addition, many mornings I would wake with both arms completely numb, a very sore neck and as stiff as a board from my head to my feet, until it felt like there was not an inch of my body which was pain free.

As we’ve been in lockdown for most the last year, there was no opportunity to be referred to the specialist EDS physio at my local hospital and it was pointless asking my GP for advice, as she clearly admits she knows nothing much about hypermobility disorders. I was on my own (no change there!).

Mast cell disease induced hives

I tried all the usual tools in my armoury. Having a hot bath before sleep. Wearing very tight cycling-style support garments to bed, which cut me in two and gave me horrible stomach ache. Two SI belts, which helped a little in the early stages but then ceased to give me any relief. Massaging my trigger points, which actually made the pain worse. Kinesy tape, which left me with the worst hives I’ve ever had, and making sure I was well supported by pillows all around me (which aggravated the hot flushes 😕). Nothing helped and by the beginning of 2021 I was just about demented.

I was talking it over with my bestie a couple of weeks ago and she asked me if I’d considered a memory foam topper for my mattress, which might help with the pressure points and numbness if nothing else. I have no idea why, but I hadn’t even thought about my mattress until she brought it up – I just reasoned my hEDS was playing up probably brought on by the menopause and I would just have to lump it. However, I was desperate enough to try anything so I started investigating mattress toppers.

I have a king sized bed and discovered that a good, supportive, memory foam topper was going to cost a couple of hundred pounds so I reckoned if I was going to be spending that much money I might as well go the whole hog and buy a new mattress. Mine was 15 years old and I spend nearly all day every day in bed, so it’s had a fair amount of hammer. However, there are loads of different types of mattress to chose from and I was totally bamboozled.

I’d seen an advert on the telly for the Emma mattress, which is foam based, so decided to have a look at that one first. I read the thousands of Trustpilot reviews and it was 5* virtually all the way. The good thing about the Emma is that it comes with a 200 night trial period, at any time during which you can return the mattress free of charge if you don’t like it. In addition, if you think the mattress is too hard or too soft the company will send you a free topper to change the feel. It has a 10 year guarantee and the fact there was a sale on and I would get 30% off the £729 asking price, giving me a king sized mattress for £516, was the icing on the cake. I looked at similar types of mattresses, such as Simba and Tempur, but they didn’t seem to offer anything different to the Emma and were more expensive, so I placed my order and just hoped I’d made the right choice.

48 hours later my mattress was delivered! It came rolled and vaccum packed in a box, which was weird considering the size of a king mattress, but which enabled me to drag it up the stairs myself. The worst part was hauling my existing mattress off the bed on my own (bearing in mind we’re in lockdown and I have no-one to help me), but I somehow managed it and was then able to place the new one on the bed slats, before taking off the plastic wrapper with the special tool sent and unrolling it in situ. It started to inflate immediately, which was properly weird, though I’d say it took a good 3 days to reach its full size. When placing your order, you can pay £30 to have your old mattress taken away by the courier but as I didn’t know whether I’d like the new mattress or not I decided to keep mine for a while, and will pay the local Council £30 to take it away if needed.

The first night on the Emma was a revelation! It was soft, squishy and comfortable but at the same time very supportive – I have no idea how the company have managed to achieve both softness and firmness in the same mattress. I only woke from sleep twice rather than every hour, and both of those occasions were due to hot flushes not hip pain, and I woke the next morning with half the level of pain and stiffness I’d gotten used to. It’s now a week later and my hip and back pain are significantly better already 😮. I can’t even begin to tell you the difference this mattress has made to my life.

The worst downside has been the off-gassing. The smell this mattress gave off for the first 3 days was so bad it actually made me feel sick, despite the fact I had the bedroom window wide open 24/7. I’ve now had the mattress for a week and it still smells, although less than it did and at least I’m now able to close the window. For someone with MCAS who struggles with chemical smells, though, I expect it would cause huge problems.

The other downside is that my neck is actually more sore and I have woken with a migraine every morning since I got it. It could be nothing to do with the mattress and everything to do with my hormones which have been playing up big time this past week, or it could be that my neck needs to get used to being in a different position as my back is more aligned. I guess time will tell. I already have a supportive memory foam pillow, but maybe I need to get one which is height adjustable in order to find the correct position for my neck now. I’m sure I’ll be able to find a solution.

All in all, though, I am delighted with my new mattress and wish I’d thought about getting one five years ago! My daytime back and hip pain has diminished by about 75% and my night time pain by about 55% and I’ve only had the thing a week ☺. My bestie, who also has a foam mattress, tells me hers softened over the first few months of use so I’ll have to see how it settles down, but if it becomes too soft I can always request a firmer topper from the company. If only my hot flushes would cool their jets and I could get a full night’s kip I’d be one very happy bunny, but for now I’ll settle for not being in agony.

7 thoughts on “Sweet Relief

  1. Jan Groh

    That sounds amazing. Though for what it’s worth, I never could/did stop reacting to a wonderful memory foam topper my friend bought for my simple twin mattress when I started having increasing trouble with age. (I’m 53.) I even wrapped the whole lot in a “sealed” allergy cover, plus an additional deep mattress cover – no dice. And the constant low level inflammation from the low-level outgassing after even a year left me almost suicidally depressed. (I go “dark” during my reactions, alas.) So off it went to a friend’s, and my mood much improved, even if my skelly didn’t.

    Also for what it’s worth, my hot flushes and headaches have all been MCAS driven, so I truly hope you do stop reacting to your lovely new mattress. Cuz it sounds amazing otherwise. And sleep is precious.

    I’ve ended up stuck, regularly taking out my shoulders and hips since I started rolling onto my side in my sleep 3 years ago. (I was too weak for the prior six years after falling apart so badly in 2012 that finally got me diagnosed with hEDS 2/14/12 after 25 years of related complains fobbed off as “just depression”.) I was able to train myself to lay flat on my back all night in 2012. (I was too weak to move without waking fully.) But now, I may need to sew velcro onto my pajamas and my bed to keep myself “stuck” on my back, or face chronic shoulder injury! (It takes my lower neck bones out too, gah. We can’t win!)

    Anyway, good job getting it installed yourself too! Very impressive. And I truly do hope you don’t keep reacting. It sounds like a great product. hEDS + MCAS just sucks!

    Liked by 1 person

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    1. Jak Post author

      I’m so sorry you reacted to your topper Jan – as I said in the post, I can well imagine this would be a big problem for some MCAS sufferers 😥

      Luckily, I’ve never had an issue with smells – just about everything else, but not smells! I already had the neck pain and migraines every day which I’ve written about before, so that’s not new. My neck is more painful, I think because obviously my sleep position has changed, and I’m hoping it will settle down as my body adjusts.

      I don’t have any of my usual MCAS symptoms, like rashes, palpitations, hives etc. so I don’t think the foam is bothering me too much in that sense. It does stink though, but that’s been a comment from healthy people on Trustpilot so it’s not just me it’s bothering!

      I haven’t been able to lie on my back or front for 10 years now, due to severe back pain (I have a pronounced swayback) – if I can’t sleep on my side I’m buggered!

      Wish you could have found a mattress which helped – being in pain all night is zero fun 😥

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      1. melody

        Jan, I, too, would have a great deal of trouble with the chemical off-gasing with such a mattress, so can relate to what you say.

        And Jak, how wonderful that this mattress is helping you! Yay! Yay!

        I wonder if either of you have ever been tested for Alpha Tryptasemia–? I am reading about this and some of the symptoms are very similar to MCAS.

        I meant for this to be just a short question, but it’s hard not to tell some of the back story–
        I’ve never had any luck getting diagnosed with MCAS or hEDS, though I have have the usual symptoms, including atrophic scarring, piezongenic papules, Gorlin’s sign, IBS/GERD, MCS etc., and lots of hypermobility that my mother had also, but not so much any dermographism, hyperelastic skin, and not too much joint issues except at times (I’m increasingly careful!), though today is terrible, my whole rib cage is out of whack and it hurts when I breathe, not just because the air nearby is bad from road work and the wind is maybe the wrong way, but I think because of some salmon I’ve eating over the last few days–it’s subtle and takes awhile to accumulate in me, unfortunately, while also toxicity for many things is increasingly causing reactions in me. (I started out only reacting to petroleum based chemicals many years back, though hormone changes also clearly play a role. Then I became allergic to grass pollen, but couldn’t help but wonder if the petrochemical herbicides, etc., that the (commercial seed) grass is sprayed with plays a role, too, transferring my immune systems’ learned reaction to the grass and then to lots of other things?) Old emotional and physical trauma plays a not insignificant role as well.

        And Monday I risked doing some challenging things in a yoga class, which normally doesn’t cause this kind of pain–but it was part of a whole network of simultaneous reactions has created this, I believe. No wonder it can be so hard to sleuth out what causes what! Conventional medicine tends to look mostly at a single causality and otherwise–many factors combined don’t seem to amount to a problem, except for the person with the issue. It seems I’m lucky enough, so far, to have resilience to several simultaneous causes, but when they pile up and up, that’s it. Anyway, I haven’t given up hope of finding some clarity around these metabolic/environmental problems. But it’s worrisome: am I getting worse or the environment around me? Or both? At least I’ve managed to keep popping my some of my ribs back in, but they won’t stay and when they move back, it sometimes makes things worse. Sigh.

        Wishing everyone a good day to feel well and enjoy–and hopefully, contemplate some early signs of spring!

        Liked by 1 person

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        1. Jak Post author

          Sorry to hear you are struggling to find a diagnosis which fits Melody – it can be a really frustrating process.

          My tryptase was less than 4 and for a diagnosis of Alpha Tryptasemia I think it needs to be greater than 8. The fact I was showing allergy type symptoms yet had low tryptase is what really confirmed my MCAS diagnosis.

          I’ve forgotten how old you are, but I didn’t have significant hEDS or MCAs symptoms until I was in my forties and started peri-menopause. Declining hormones in middle age anecdotally seem to trigger severity of disease in many women and I definitely have gotten much worse during the past 10 years 😥.

          Liked by 1 person

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          1. melody

            Ah, interesting, thanks. Yes, I’m older than you are, Jak, in my later 60s now. But my reactions started in my mid-forties, so it fits in with that hormonal relationship. I was pretty healthy before that, so didn’t know what hit me and why my world tipped upside down with my sudden allergic to everything transfiguration.

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  2. Lindsay

    So glad to hear it has helped with your joint pain! I often wake up in the middle of the night with hip pain. I don’t think I have EDS, but I do have a lot of widespread joint issues, and although my mattress is only about 5 years old, I think it has lost some of its support.

    I checked out the Emma website and saw that their mattresses are “cooling” memory foam – did you notice any cooling? Did it help with the hot flushes at all?

    My neck will sometimes hurt when sleeping on a different bed because my spine isn’t used to the different support level.

    Liked by 1 person

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    1. Jak Post author

      The thing my bestie warned me about when buying a memory foam mattress or topper was that it tends to be much hotter than a standard mattress. As I’m already on fire every night that was a concern, but the aerogel layer in the Emma which is supposed to counteract the heat in memory foam was another reason I chose this mattress over the others available.

      It’s impossible for me to say at the moment whether the mattress is hotter than my old standard one because my hot flushes are so bad. To be honest I’m dreading summer and the warmer weather! I’m definitely not any cooler in bed, but neither are my hot flushes any worse since getting the mattress.

      You tend to sink into memory foam, rather than lying on the top as you do with normal mattresses, so I think that does feel a bit warmer as you are kind’ve surrounded by the foam.

      Liked by 2 people

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