Fibromyalgia

[Fluffymare]

Why does my Fibro get worse at night, does this affect anyone else?

[permanentgrowingpain]

hi yes i get worse as the day progresses

if im on my legs all day my hips become unbearable so do my feet . if a get down to fill up my stove i have difficulty standing up i ache all over cant wait to get into bed with hot water bottles and cats wake up in the night frequently with spasm in knees and hips always need to pee get amazingly stiff as the day progresses cant walk far without seizing up got arthritis and disc hernation / damage so cant work out what pain is causal . its a joy im 61 also have tender elbows sometimes i cant even stand anything touching them left worse than right . my knees ache one as isoon as i lie down it get worse thing thats disc pain . ive given uptrying to wrk out what causes what all i know is i ache and am stiff .excersise makes worse not better .

i think changes in sleep rythm and cortisol levels affects it all

pomegranites if eaten daily do help a bit sounds mad but they do have a anti inflammatory effect

but they are season and expensive but i use them as i cant take drugs anymore due to gastris caused by cocodamol

[Fluffymare in reply to permanentgrowingpain]

Hi,

I go to bed every night with hot water bottle and wheat bags to wrap around my aching limbs and body,

I will try the Pomegranites, they should be in season now.

Pets are a great comfort, I always found my dogs were always aware when

Something was wrong with me. Had a few cats in my lifetime, that's the trouble with animals they have such a short life span, but wonderful companions, better than people.

I am trying to finds therapist to release some of my Trigger point knots, Rhuematologist said I had quite a few throughout my body.

Hope you have a better sleep tonight,

Take care

Pat

I thought Co-Codamol was kind on the stomach, took it for years without any trouble for arthritis.

[TheAuthor]

Hi Fluffymare

I am so sorry to read that you are suffering more at night, and I genuinely hope that you are not in too much pain? I think that as the days goes on we get more and more tired and so the pain levels increase? It may sound a bit simplistic but I think that is the way it works personally? I am exactly the same!

All my hopes and dreams for you

Ken x

[fenbadger]

No idea why but I find getting started every morning a trial. When I wake in the night it always takes a long time to get back to sleep as the pain is higher.

[jackie4ball]

My Nights are hell I have increased my Amytrytptiline to 200mg the 50 were not even touching me year ago i was on 250mg but i lowered it down gradually i only take it now as was recently dumped after a 3 and half year relationship with a man i still love and i can never sleep my head hits the pillow and my brain goes into overdrive. There is a downside to taking the higher dose in that the other night i was in bed and was eating some milky bar buttons and was enjoying them but i instantly nod off after a couple of hours but you don't seem to know when you are going to go to sleep i woke up with the usual pain in my hips, knees and shoulders and tried to work out what i had in my hand i had fallen asleep with my hand in the bag of the milky buttons and they had melted roundly fingers and in the bag. I remember when i was taking them years ago a few times i would fall asleep with a drink (cold one) in my hand and somehow would throw the drink over my face and head and wake up wondering what was happening. But now even on that dose i wake up in so much pain in the night it i so unbearable also have had surgery on my left hand and being totally housebound along with deep depression and feelings of being useless and worthless. I literally hate nights. So i can understand anyone on here saying they are in so much pain there have been times when i would like to saw myself in half from the waist and throw my legs and hips away. My cross stitch is normally the only thing that keeps me sane even though i have OA in my hands its one thing i refuse to give up. but at the moment i can't even do that. I go days on end with contact with no one. Having been a mum of 4 and a wife for 22 years then in another relationship i find loneliness is my worst companion. My daughter comes round if i need her but she also has fibro along with 2 of my sons who live 160 miles away. She is also waiting to see and orthopaedic surgeon to do with some tear in her hip so i hate asking her to come and do things for me because i know she is in agony she will be 22 this week and has really had to fight to get anyone to believe her about her hip she has been seen through her dads BUPA and whilst she is sending forms off for ESA she asked her gp to print off the letter from the consultant rheumatologist when she first saw him and in the letter he had written I am loathe to do another MRI as this young lady had one early 2013 but i have asked for one anyway. If that had been NHS i done believe she would have had the MRI and the consultant was shocked when he saw the results of the second MRI compared to the first and his whole attitude changed and thats what we have to put up with. Unfortunately the gp she has is at the surgery we were all at at one stage and as she is the youngest the DR would ask how everyone else was doing and treated her as if she was just lazy. But she had been offered a place at university to do nursing which is what i did many years ago but was medically retired due to health and she decided not to do it because she knew the same thing would happen or she was afraid it would because for 5 years if not longer she has been saying that it feels like her hip is coming out of its socket and they would assure her that it wasn't. But at least now they can see something is wrong which is a relief in someways but worrying in others. Sorry to go on.

Jackie

[Kerryjess in reply to jackie4ball]

Jackie, so sorry to hear of your difficulties. Your post struck a chord with me as I could have ticked off so many of the things you said as yes, yes, yes! I can't wait to get to bed at night to get off my feet. I have an electric over fleece which has a timer so that it can't overheat. I use this for most of the year, only putting it away in the really warmest nights of summer. I can't sleep if my feet get cold. It is useful also downstairs , though I tend to keep a throw on each chair for my feet as I seem to feel the cold so often.

I'm writing this early as last night wasn't a great one sleep wise. I was up several times to the loo, for a hot drink, anything to try to get me over to sleep again. I read a lot in bed or use the ipad. I know some people say bed is for sleeping and you should ban all these things but I wonder have they ever been lying awake for hours not being able to get to sleep? So often my husband has awoken in the morning or during the night to have to take off my glasses, take the book/ipad out of my hands and put off the light. The falling asleep without warning also affects me and can happen anywhere. Fortunately he has learned to "read" my body language and will often anticipate this happening, making sure I don't have a cup of hot tea in my hand as I have spilled liquid over myself in the past. For others who have no experience of this, it sounds so silly but it is a weird feeling when the tiredness just washes over you.

Mornings are never great for me, probably because of the poor sleep and it takes me a while to get going with the aching joints. You mentioned your cross stitch keeping you sane-I totally agree. My family tell me I am not helping my wrist joints doing my knitting, crochet and cross stitch but if I didn't have that to occupy my time I don't know what I would do. At least something productive comes out of all the time I have siting in the house on my own, something else you mentioned. It s so hard to be isolated and I have found the people on this forum understand -family and friends very often don't! I feel I am not totally useless when I can produce items for the wee ones in my family to wear and enjoy their pleasure whilst keeping myself occupied during the day (or night!)

Recently I discovered a craft class in a local church hall where all the ladies take whatever project they are working on and come together for an hour and a half to work and have a chat-plus a cuppa and biscuit of course! They also send blankets and knitted items overseas to help poorer people in need so there can be a real purpose to your knitting and crochet. They make items for Xmas shoebox appeals and collectively support this scheme. Once a month is open day when other ladies of the church make and bring scones with jam and cream and the general public in the village is invited in for morning tea/coffee with the opportunity to buy handmade items. They don't charge, but a donation of £1 is appreciated. That is what the ladies contribute every week and it more than covers the cup of tea and biscuit we usually get. The extra money goes towards buying wool so that those who want to knit/crochet but are perhaps struggling financially can pursue their hobby-no one monitors what wool you take. I have found these sessions so beneficial as it gets me out at least one morning of the week amongst other people who share my love of craft. It also means I can contribute to helpline people in need of the handmade items and as they say here in Ireland, "the craic is good!"

Sorry this has been such a long post but I know when you are isolated in the house it is so hard to get through the day with no one to talk to. I'm so sorry to hear about your daughter's problems. It's so hard to get Drs to take us and out health problems seriously and she is so young to have such major problems with her hip. I hope something can now be done to give her some relief. Worrying about her can't have helped your health either. Take care and gentle hugs from me.

PS. What is your current cross stitch project? I am hoping to complete a Hummel figure for one of my friends for Xmas. Xo

[Fluffymare in reply to Kerryjess]

You sent me a massage that I think you intended to go to Jackie4ball, I am fluffymare

[jackie4ball in reply to Kerryjess]

Thanks Kerry for your reply i mainly stitch Mirabilia patterns you can check them out on either Mirabilia.com or on Facebook i have over 500 friends on there through my stitching we all do it and many of them have illnesses such as ours and with my depression being bad at them moment they are being very supportive as i am when any of them are feeling down or struggling with something in their lives. I have also just got a Rosewood manor design called Autumn Quaker i saw one of the ladies on one the sites stitching it and fell in love with it. I have a stand that holds my q snaps so all i need to hold is the needle and at the moment it is all one handed i have just started doing a bit at a time after my surgery 4 weeks ago Thursday still have around another 6 weeks until i can drive or take the brace off. I overdid it a couple of days ago as had a carpet fitted in the hall my ex partner had promised he would have it sorted and he did. But i ended up in tears at the carpet man fitting it as the ex had popped round with the money to pay for it. I cried last week at the guy who came to read the meter. I don't want to be here, i hate my life i still love the man that told me for 3 and a half years he loved me then tells me he thinks he just settled for me i mean he is deaf and agoraphobic and he just settles for me i understood his problems i accepted the limitations it put on our relationship then to be told as well he had pitied me but he had been telling me he loved me we would go to sleep holding hands every night and now i am so alone. He called round on saturday morning and took me out for coffee as he new i couldn't get out. But we went somewhere his mum had mentioned it was packed but we found a seat he was constantly watching the door and i asked him what he was looking at he said because his mum hadn't replied saying she was in Swanage he was worried she was going to come in the place and said if he dashed down stairs i would know why. Later on i sat thinking about this and i thought he is a 54 year old man who is scared of his mum seeing us together having a coffee as friends as he has made it clear it is over and that hurts so much overtime i think of it i cry. I have one friend that lives locally I have just got a council flat but to be honest i hate the area and my daughter is planning on moving to Leicester after her wedding in May next year and then i really don't know what i am going to do. Everyday i wake up as i finally fall asleep in the middle of the night or if i drop off earlier i wake in so much pain in the night as i did last night my back hips and knee were agony and i couldn't wove. I always think i would love to just go to sleep and die. My appointment to see the psychiatrist has arrived and i see him on the 25th so not too long to wait. My mum says take one day at a time but when you are on your own 24/7 it is very very hard. I walk with crutches and there is nowhere nearby i could go to get out. I would love to find a group where i could go with my stitching but i have searched and so far have found nothing in my area or surrounding area. I am literally going stir crazy i don't eat as i have no interest in food. My head is all over the place and i have become really forgetful my eyesight has deteriorated drastically from April to now as i had my eyes tested in April at vision express but my glasses have broken and i haven't been into town to sort them but i went to Specsavers as my daughter was there and i knew the glasses i had been wearing weren't strong enough now for my right eye and my prescription had changed from +2.50 to +3.70 which i think is a huge change but as i'm not an optician maybe its not. I cannot read any labels now without glasses. A few weeks ago i went to an emergency dentist and had to fill in a form but had forgotten my glasses i got so far then couldn't fill it in anymore so had to ask the receptionist so thats a mistake i won't make again. As regards people saying it will make you joints worse if you are stitching or knitting its the one thing i do and refuse to give up as the day i do i know i won't be able to deal with anything. Its my way of shutting out my feelings and emotions and i have something to show at the end. As you can see i like to waffle on something else he told me that i talked too much but he forgets i am alone all the time so if someone visits i am going talk.

Take care

Jackie

[Fluffymare in reply to jackie4ball]

You sent me a message that was meant for Kerryjess

I am fluffymare

[permanentgrowingpain in reply to jackie4ball]

hi jackie re the overdriven brain re the departed partner its a condition called post traumatic dumped disorder

i know i had it my husband a polite term for him , left for the younger uglier model and i was so traumatized by it after 28 years of marriage i though i would never get it out of my brain

even know its can still creep in when i cant sleep but i do wake up with horrible feeling of dread sensation my amiglyia replays my trauma ever time i wake

it goes through me like a knife . joy

then theres my physical conditions as wewll oh well

i just have to bash on but its not nice being ill and on your own

so i can sympathise

kind regrds

[Fluffymare]

Really sorry to hear of your troubles and those of your daughter,mhopefully she gets the right treatment soon and feels better.

Know what you mean about the pain from this Fibro, I get in the chest, shoulders back arms and legs, developed awful nerve pain in my arms and legs with tingling in arms and fingers. My pain gets much worse at night, can feel it starting right now .

It has been made really bad with mybhusbsnd suffering a stroke 21/2 months ago. Been sent home last week, very frail at 82, and although we have 4visits a day from carers I still have to do a lot of caring for him, made pain and anxiety much, much worse and made me house bound, but can't drive very far, as balance and head fog very bad.

Dr given me Pregabalin 25mg took one this morning and it has made my balance even worse, but a bit unsure about the evening one has i take Lorazepam and Zopiclone, and according to the information on the net there is a moderate interaction between Lorazepam and Pregabalin so will give the night one a miss until inhave spoken to Dr.

ThevPsychiatrist I seevput me on Lorazepam when I was having really bad side effects from Dulixetine, and Zopiclone for sleeping, I wish i had not taken either, only see him every 8 weeks, said i am too sensitive for anymore meds suggested trying relaxation

2 sessions a day, fat chance of that now.

Life sucks at times, but have to carry on, my son lives at Melton Mowbray I live in Birmingham so only see him once a week, and they are having a baby next week so will have their hands full.

Lovely to hear from you,mbut must go now as hands are starting to tingle, and clothes are starting to hurt as well

Hope you get some sleep tonight.

Pat

Sorry about some of the words joined together can't back track on this ipad since I updated this ipad