Hi all. I am in the process of attempting to make a sleeping sheet to help with sleeping. I don't know why but I can't get passed my desire to have something covering me when sleeping even knowing it causes flares!
I am going to attempt to sew ( don't know how yet) a sort of sleeping bag made from a sheet. It will go around me like a sleeping bag and zip from the ankles up to my waist. Then it will go up over my back and shoulders and zip from my waist up. That way my hands can stay out at my waist to help prevent burning but I can move around all I want without having to keep them out of the sides or up by my head. I will cut slits where my knees are because they often burn too and can just poke those out when need be. This way you have many different ways it can be worn depending on what is flaring at the time. It's just in idea phase now and I have already found and bought some sheets that were advertised as thin which some people complained about in reviews but I love them and they are thinner than regular sheets as advertised.
I will let you know if it works out and post a pic if I think it helps.
If anyone else has found tips or contraptions they have found that helps with the dreaded sleeping thing I am sure we would all appreciate hearing them.
Thank you so much!
Love Alina's concept of EM sheet- we need to copyright it ;) .
Love Tizzy's suggestion of taking a sleeping bag's silk inner liner- easier option for those of us useless or too incapacitated to sew. And the wine coolers advice. I got massive feet. Do they do extra large, Tizzy lol!
Veerla - I agree with your advice re: melatonin helping sleep problems and regulating circadian cycles.. I have been taking 5HTP for a year now. Similar theoretical argument - 5HTP is tryptophan which boosts serotonin and production of melatonin . Getting semblance of restorative sleep - REM - is so important. Even more so with' fatigue' being a massive trigger for many of us. If folk want to do this naturally - these are melatonin boosting fruits
So pleased to hear melatonin seems to be helping you , Veerla. This is what is so great about the forum - range of topics is amazing!
What amazing and creative ideas! I am so impressed by you folks.
I feel very blessed that I rarely have EM in my hands -- having it in so many areas would certainly make bed linens a challenge.
For those with EM just in their feet and lower legs who need to use a fan 24/7 on uncovered feet, I have found a solution to freezing upper legs and body. I sleep with a regular-sized pillow on top of each leg and a smaller pillow on my chest. I leave a space between upper and lower pillows for my hands so they don't get too warm. I still find that I sometimes still get cold on top (this is Canada), so I sleep in a turtleneck and sweatshirt worn backwards so I can shed it if I do get too warm.
Watching something funny on TV, doing meditation just before going to bed and trying to keep a constant bedtime help me be in a positive frame for going to sleep. Also, taking 1 Benadryl (which I take for allergies) about an hour before bedtime and then Lyrica just before bed does the final magic.
Is there anyone who hasn’t heard about my cage! I couldn’t sleep without it, especially in the winter. It has grown through the years until it is now 4ft long, 3ft wide and 14" high which covers me to above my waist. As the nights have been getting colder so I pad it more and more and it now has a duvet over it and a couple of blankets. It is pretty well draughtproof which is necessary as I will flare if my feet get too cold or too warm. I have no covering in contact with my body except for a large soft scarf over my shoulders and the room is unheated. There is a top sheet on my bed but it is pushed to the bottom of the mattress and only deployed after about 4 am after which hour I will probably not flare. If a foot strays under the sheet I will flare straight away. So my cage keeps me warm enough to avoid freeZing flares and cool enough to avoid hot flares. It isn’t working all that well at the moment and I am forced from bed with flares but only once a night. Then, if I can bear to, I go downstairs and tidy the kitchen while I cool down. If I am just too dopey to negotiate the stairs I stand on the large ceramic tiles which my daughter gave me as a present and which live on top of the carpet by my bed. I hope when the weather settles down to cold all the time my nighttimes will also settle a bit.
There is a photo of the cage in my photos.
He he Tizzy.
Melatonin appeals to me too and is easily obtainable I guess as my husband used to dose himself when we flew longhaul, put on his shades and sleep 8 hours while I kept three wide awake children occupied and traipsed back and forth to the toilets with them all day/night long. Same every holiday we took.
To return to the here and now, why is it that I feel so ready for bed all afternoon then about 9pm have a burst of energy and end up pootling around until midnight convinced that I am not tired enough to sleep. Up again at 2 for an hour’s cooling and very little sleep achieved again.
Thank you all for the suggestions. I love the tip from Tizzy about the sleeping bag liner for a starting point. Tizzy....You are so funny..I just had to add that in. I love your since of humor!
Thank you for posting the picture of the cage Nel in your photos because I couldn't for the life of me imagine how you did that! So creative! Do you still get that feeling of being snuggles up for bed that I so miss even though nothing is actually touching you ? It is truly a balance of not freezing and not burning only made more difficult by your body changing through the night.
I will definitely ask my doctor about melatonin Veerla . Thank you . I am on so many meds including Coumadin so I definitely have to ask first as should we all anyway.
Funny Dragica, I do the same ting with the backward sweat shirt or sweater. I will lay with on backwards so I am warm enough but as I fall asleep it becomes too warm and I can just slip it off without having to sit up to do so.
Thank you Mads for the helpful food advice. I am firm believer if you can get something that helps through food and other natural things such as the melatonin it's best to go that rout before trying the harder prescription drugs.
You all are the best! thank you so much for your help.
May every one have a good flare free night tonight.
Alina, no it doesn’t give me that lovely cosy in bed feeling that I had before EM when I snuggled down to sleep. Not at all and I hate crawling in to it when I am over hot and the cage is cold. The alternative is to lie nearly naked and freeze - flare - freeze - flare all night long so needs must I am afraid.
Last night I woke at 1 am and I can remember telling myself to get out of bed before the flare spread up my legs and the next thing I knew it was 4 am so I had fallen back to sleep. Wonderful.
Sleep well everyone
I am so sorry Nel. That is one feeling I so desperately want...to feel cozy ,snuggled up. It is a constant battle to find that sweet spot between uncomfortably cold or down right freezing and not burning. I push it sometimes because I want to feel cozy so bad and I get it but it never lasts long before a pay dearly for it. I don't try this often mind you.
I am so glad you were able to fall back asleep and didn't have to go clean your kitchen in the middle of the night!!!
I don’t think it will ever happen for us again:( same during the day when I have to keep chilled when all I want it to put on a warm jumper and a cardie on top of that. Just can’t be done. Never mind eh! Could be worse. I can at least climb in my bedtime cage on my own, set my own alarm clock and take myself to the bathroom and back. My cousin had MS and before she was 40 was dependent on carers to do everything for her and died before she was 41 leaving two small children. It could so definitely be worse.
You all have such creative ideas to get some sleep! EM is a Nocturnal Beast for sure...horrid during the day but just downright wicked at night!!!
I didn't know we shouldn't cover our feet with sheets or blankets!!! Maybe that's half my battle with night time awful pain..
This sickness is so frustrating!
I don't think everyone keeps them out Novi. If they are burning taking them out and putting a fan on them should help. I like to try if possible to get under a sheet because I crave that feeling of being under something when I sleep. In order for me to get under a sheet I have to get my house extra cold for sleeping. It is winter now so I open up the window next to me and put a fan in the window so it sucks in the cold night air. Last night even this wasn't successful for me. My hands and feet were burning so bad even with the cold air coming in. Eventually in the night it got cold enough to cover them with a sheet for the remainder of the night. I think this stems from childhood when your hands or feet were sticking out of the covers or even worse dangling over the bed I thought the boogieman would get me!! So keeping them tucked in has always meant safety. I realize that isn't the case of course but the desire to be tucked in for me has never gone away.
Some don't like dealing with the temperature change or just can't get cold enough no matter what to sleep under anything. When you do what I do you have to deal with your house being freezing for the first bit in the morning. My husband usually turns the heater on (cringing ) in the morning but only to 58 so that gets it back to a more comfortable temp out of my bedding for me. Funny just typing the word heater makes me cringe!!!
I hope keeping them out or some of the other tips here will help with your pain at night. I would be surprised if it didn't.
Please let us know how it goes. I can't help but be excited for you . Finding ways to help with the pain can make a tremendous impact on you life. I'm keeping my fingers crossed for you.
It sounds like a mighty nifty invention. You could put velcro on your knee holes so that you can close them up and keep your knees safe when they're not flaring.
The desire to have something covering us while sleeping is something I've thought about a bit. It's a very inconvenient need when we have night time flares. My oldest son is like me, in that he says he needs a cover on him at night no matter how hot the night is. I have wondered if it's a thing started in babyhood when we were wrapped up at night. The idea was to stop our little limbs flailing around and waking us, I think, therefore leading to a sounder sleep. I suspect it is more than that. I think it may just be that as babies and children it helped calm our nervous system -- not sure which nervous system -- the peripheral, the autonomic or the central -- but that's my theory. I know when I'm very anxious (but no EM flaring) nothing calms me down as quick as a strong firm hug from someone, probably calming the peripheral nervous system or maybe al three? I think having a cover on us at night provides a similar benefit. No science behind this, just a lot of musing on the subject.
My babies were all wrapped up tightly when young. And then went on to sleep with covers. Except my youngest child, who kicked back covers even in the cold of winter. I know the childminding meme changed sometime in the past few decades to babies not being wrapped tightly. When my daughter had her baby two years ago I was amused to find that child-wrapping was back in fashion. The child experts had decided it was a better way to go. Babies, kids and some adults just need to be wrapped up/covered. And I believe it has something to do with calming one, if not all 3 of the main nervous systems. Just my theory. But it works for me.
Obviously I prefer to sleep under covers. And will turn up the fan to full blast so I can do so. But some nights I just have to sleep without covers and I find I can do that too, now. I don't prefer it but I can do it. When EM first hit about 12 years ago my need to cover up was a battleground at sleep time.
The past 2 nights I have been able to sleep alone -- hubby has been back in his bed while son is staying over elsewhere -- and I have remembered how much more refreshing my sleep is when I do it alone. No heat radiating from the body next to me. I can sleep with hubby if I need to but often it will mean taking a pill (not a sleeping pill) that has the side effect of helping me sleep deeply.
All this stuff that we have to deal with. And yet I still have to apologise to hubby about not being able to sleep away from home. GRRR! Our last holiday was a good one because the sea air soothed my skin a lot of the time. But I didn't get much sleep because hubby was in the bed next to me and I was completely out of my comfort zone. I seem to need a very defined and particular comfort zone these days (and for the past 12 years)
I am able to manage most nights by draping very old high thread count cotton sheets that have washed to a smooth finish in strategic places around me. Some weight of the sheet in places where I'm not burning or skin sore seems to make up for not being able to cover up completely. Knock on wood, so far I haven't had to think about designing and making a special cover for sleeping but I can see why there would be a need for it. I have not reached that point. (Knock on wood and don't let those pesky, capricious gods hear. I don't want to tempt them).