Just wondering if anyone like myself ... - Fibromyalgia Acti...

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Just wondering if anyone like myself can't lay down in bed

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Just wondering if anyone like myself can't lay down in bed only way I can get any where near a good night sleep without having to get up and down all nite is with air bed and memory foam pillows to prop myself up haven't been able to lay down for 2yrs now pain docs says I have facial joint pain hmmm unsure myself somedays it bloody hurts that bad I can't even sit down I have to leave forwards for some relief or rubber ring

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20 Replies

Hello Sheila

I can relate to your message. When I was first diagnosed with Fibromyalgia I spent every night getting in and out of bed, sitting up in bed staring out of the window, having a sip of water, then doing it all again and suddenly it was daylight again.

I feel so sorry for you, it sounds awful for you - you didn't mention what pain relief you take. Have you mentioned how you are suffering to your Doctor? There must be something to help relieve your pain and help you to rest. I too have a memory foam pillow and found this helps, but also a tri-pillow (triangle shaped to fit round you).

Have you been officially diagnosed with Myofascial Pain? Have you seen a Rheumatologist or a Neurologist? If you haven't, I would ask for a referral from your Doctor because you clearly need more help and relief than you are getting. I do feel for you, take care.

in reply to

Hi Libbyde

Thanks for reply I haven't seen Rhe or Neur doctor says pain clinic is best person to see with Fm my doctor doiagnosed me as that's his speciality I take tramadol ,amtri,and dazpam when I need them paracetamol like sweets pain doctor just keeps giving injections in spine but not having any more as there where bloody painful would rather give birth I last month he sedated me and I woke up in theatre when he was still injecting me I told him I would only have them done again if he sedated me he never came back to see me on the ward as you can imagine I have a few words when I see him again when ever that willbe I see him twice a year best way I sleep is on air bed think its because is air takes presser off my painful joints I can't sleep on sides as they are painful too I just wish there was something we could do or take so the brain stops body feeling pain I do go out of home during the weeks unless other half is at home as my feet won't let me god this all sounds lIke I am 80yrs plus wish I was then I would understand all the pains and burning never mind another week gone sheila

paula1967 profile image
paula1967

hi sheila

yes iam like that i carnt lie on my back at all and have to put two pillows wedged under me so i dont go on to my back but the only problem there is that i have to lie on my side all the time, which causes great pain in my legs but it better than been in my back, so i bought some deep heat spray the other day for the side of my thighs and its worked wonders, still in pain but better, i went for an mri scan the other day, and of course your on ya back, god it killed me trying to get back up was a nightmare and was poorly for 2 days with it, do try lying on ya side with the pillows for support hun xx paula

in reply topaula1967

Hi Paula

Thanks for reply had MRI only fount wear on my spine I can't sleep on my sides either only way is half sat up sides feel like someone's put stones in the bed I to crawl of the bed/air bed every morning but we have to going that's for sure well sun didn't last long have a good w/e well best as you can :) sheila

jayjay57 profile image
jayjay57

Hello Shelia 51

I really do feel for you, I too get next to no sleep most night's am in terrible pain every time I try to sit for a while(10 minutes being the most I can do at a time). I also cannot lay on my back either I have various health conditions which are as follows -

Mild Scoliosis (Thoracic Curve) and Pelvic Tilt, Fibromyalgia, Costochondritis,

Chronic Coccydenia, Facet Joint Arthritis, Left Trochanteric Bursitis,

Fibrocystic Breast Disease, Irritable Bowel Syndrome, Osteoarthritis in Neck.

I have been is so much pain for nearly 3 years now have had bone scans, mri, ct scans various x rays and have been diagnosed with all the above conditions the Fibromyalgia & Costochondritis was only diagnosed in May this year, the Coccydenia I have had for just over a year (which I might add suddenly started after a MRI scan ??). Am on various meds which help a little but the Tramadol causes me chronic constipation which does not help the Coccydenia but I could not get through the day without the meds.

I was looking on Amazon for something the other day & came across what they call a Full Body Pillow

Product Description

Our U Full Body Support Pillow can be extremely effective at helping to reduce back pain. And the Comfort C U Pillow is the perfect pregnancy pillow - allowing you to find that elusive comfy pillow arrangment. Whether you suffer from fibromylagia, back pain or just want a fun and useful body pillow - the C U Body Support Pillow is the only pillow of it's kind. The price is £48.99

(Sorry I tried to copy & paste the link but it will not work) I'm thinking about getting one of these just don't want to waste that amount of money if it does not help.

I am currently having Physiotherapy at the hospital's gym so will have to wait & see if it helps, I also try to walk for at least 15 mins per day, I was wondering though if when you sit on a chair do you feel like you are sitting on rocks in the middle of your bottom like I do (Pain is awful). I'm also waiting to see the Dr at the Pain Management Clinic to see what they can do next for me.

Regards Jeanette

PS I do hope you feel better soon

julieevh profile image
julieevh in reply tojayjay57

My daughter was looking at buying one of those full body pilows when she was pregnant, lots of good reviews for them so she was pretty convinced. Then I noticed they were exactly the same a bolster pillows which you can get from Dunhelm Mill for a fraction of the price - they do the pillow cases too. It did prove useful for a few weeks until baby engaged - now it is just used as a normal pillow so the money wasn't wasted.

Julie xx

jayjay57 profile image
jayjay57

Also I meant to say that I have been unable to wear a bra for just over 2 years now because of the Thoracic Curve, Costochondritis, Fibrocystic Breast Disease because of the pain it's like I have a steel band tightly wrapped around my body, so only now wear a bra when I have to go out, then can't wait to get back home to take it off, I have also over the last couple of weeks been in a lot of pain around the top of my left leg from my knickers ???? I swear I am going out of my mind, there is no way I can go without wearing knickers just don't know what to do any more !!!!!!!!!!!!!!

Maybe someone on here can help me too with suggestions on something that might help me

Thanks for reading

Regards Jeanette

julieevh profile image
julieevh in reply tojayjay57

You could perhaps try thongs or shorts type knickers if you don't want to go commando!

Julie xx

jayjay57 profile image
jayjay57 in reply tojulieevh

Hello

Thanks for your reply but thongs are a definite no no with Coccydenia ouch, did try some shorts type knickers but don't like the way they only cover half your backside like the french knickers do, oh well will just have to keep trying different styles of knickers I suppose :-(

FionaP profile image
FionaP in reply tojayjay57

I have had some underwear problems too. Especially as I have an Assistant who wakes me. I now wear mens pants (the shorts type) to bed and for when I cannot stand the pressure at the knicker line. They are very comfy :)

jayjay57 profile image
jayjay57 in reply toFionaP

Hello FionaP

I wonder can you tell me what type of men's shorts (pants) do you wear, do the shorts type have loose legs or closer fitting legs and do they have gusset seams (where do you buy them), Many Thanks for your help xx

Sorry you are in such pain ... I sleep at due to meds but can't sleep on my back .... Has to be on my side of I wake up in such agony I can't move I also have chostocondritis and only wear those ahhhh bras when I have to cos even they hurt my ribs .. Am a size 14 but buy the size 20 bra and even that hurts my ribs. Tried osteo he gave up after 4 weeks saying he had never met anyone like me ... The osteo helps for maybe2 days then all the rib neck and shoulder spasms come back. I have a great pillow it's made of like ummmm latex and has holes all through it.. It's very heavy to pick up but it just moulds to the shape of your head and neck .... It's not memory foam. My mom got one free with her adjustable bed I tried it and liked it so much I bought one ..£65. So if it doesn't suit that's a lot of money but I have been sleeping more comfortably with it than on any other pillow and I have tried loads including memory foam which I found was like sleeping on a rock as I have a very short neck and couldn't fit onto any of the contour shaped pillows.

Glad you mentioned fibrocystic breast disease jayjay , I am off to be checked for that on Tuesday. I hope it is that and not something worse my gp thinks it that and I am hoping for that diagnosis as breast cancer is very common in my family on my maternal side.

Sthandra profile image
Sthandra in reply to

Have you tried the jml bra I know I'm name dropping but I find them very comfy I have fibromyalgia in all my joints and in my back they seem to help normal bras dig in so maybe they will help you I'm Sthandra by the way I'm new here

FionaP profile image
FionaP in reply toSthandra

Hi Sthandra and welcome

These bras are available in so many places now. I picked one up at Sainsbury's for just £5. I am so glad I found them.

lucys9560 profile image
lucys9560

Hi just wondering if u have thought about a water bed.my consultant recommended it to me caus it supports and moulds and the temperature of the water is comforting.my aunty uses one following a bad car accident and absolutely swears by it.wishing u all the best we are all with u on this one!

tess10 profile image
tess10

Hello all I also don't have the much fun at bet, I have put a memory foam topper on my matress, memory foam pillow. Not sure if others know this but as I have one, I will tell. have a 5ft body pillow, Got it from duneilm, its fab i am able to lye on my side without arms legs touching etc, it also keeps both side at a same level which eases the feeling of being pull apart if you know what I mean, I would be lost without mine xx

coco68 profile image
coco68

I have a memory foam topper type thing, and sleep (if you can call it that) propped up, I have coccydinia too so laying on my back is a definate no no now, lay on my side my legs go numb, if my legs touch they bruise.Laying on my stomach sends pains through my chest Without meds I dont think I would ever sleep! May try and get one of the body pillows mentioned :)

jaccoz profile image
jaccoz

aw i feel 4 u .im also going to buy a memory foam topper.i can only go on either left or right side depending on pain levels .i think u should try these toppers as well.i also have fibrocystc breasts and lately mine have become very itchy this is new.yes ive seen those body pillows too and they mite b another option sthandra xx

Hi I have a memory foam topper on my bed which I feel is a god send. I also cant lie on my back, the pain is excrutiating after a while. It was only a short time ago I read about thee body pillows. I think I will call to Dunelm tomorrow & buy one.

Luv & Bugs

Jac

Jodyblonde41 profile image
Jodyblonde41

Can't sleep laying down in bed, runs my blood pressure high, only can sleep sitting straight up!

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