How is fibromyalgia effecting us? - Fibromyalgia Acti...

Fibromyalgia Action UK

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How is fibromyalgia effecting us?

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Hi people,

Just wanted to know how fibromyalgia is effecting you people, does anybody use any aids that they have found works and helps? How is everyone's daily life living with fibromyalgia? Expecially when having children, how does people cope and look after children at same time. Let's have a discussion.

Hope everyone well, wish I could say the same for my self. Im feeling down at the moment trying to feel better by doing this.

Thanks everybody

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25 Replies

Hi Linda3636, I am feeling down myself at the moment. I understand how you are feeling. Fibromyalgia has changed our lives. I don't have Children yet, (maybe one day). Social services have been a huge help to me, I have a rail, shower seat, higher chair, raised toilet seat, bed rail and a leaning chair. These have helped me hugely. Hope you get some help in finding aids to help you.

Clumsy 🎀

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TheAuthor in reply to Clumsy_Mrs

Hi Clumsy_Mrs I am so genuinely sorry to read that you are feeling down and I truly hope that things pick up for you soon my friend. Please take care of yourself.

All my hopes and dreams for you


Hi Hidden

I am so genuinely sorry to read that you are feeling down my friend, and I sincerely hope that you turn a corner soon. I perosnally use a Tri-walker as I cannot walk too far anymore. I have a wet room, walk in shower and raised toilet seat in the bathroom, and it is all on suite for me. I think the biggest way that my life has changed is the fact that I simply cannot just go out whenever I feel like it? Everything has to be meticulously planned these days. My children are all grown up so that does not apply to me anymore.

I should also add that both my wife and I have a care team come in daily to help with cooking, cleaning and anything that we want doing.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you


Matrix profile image
Matrix in reply to TheAuthor

Hey Ken , how you and Julie doing ? hope things have improved and keep your chin up . Xx

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TheAuthor in reply to Matrix

Hi Matrix my friend, I sincerely hope that you are well today? We are both plodding along and getting there slowly thank you. It is taking longer than I expected though? Take care my friend x :)

Matrix profile image
Matrix in reply to TheAuthor

I'm relieved to hear there is some progress if a little slow . Last year was not kind and you have been through the mill . I'm ok thanks happy to have that windy day gone and today is just lovely sunny etc , I'm really with motivating myself but trying to work on that . That flu really knocked me for six .Have a great day Ken xx😇

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TheAuthor in reply to Matrix

Good luck my friend x :)

Matrix profile image
Matrix in reply to TheAuthor

Thank you xx😇

TheAuthor profile image
TheAuthor in reply to Matrix

x :)

Hope u feel a bit better soon I too am feeling really down atm

I find I am knackered with it am on esa and awaiting my assessment for it😷 I use crutches which sometimes help I also have a perching seat for kitchen a hand rail and toilet seat raise for bath room and a bed rail

I had some serious problems when having children. I found breast feeding required some repetitive movements unavoidable and therefore dangerous for the child and requiring me to adapt in strange ways.

I was incredibly sleep deprived with son #1 and #3 which meant I couldn't rock them in the rocking chair because my arms were so sore and over-used from breast feeding that they shook while I tried to hold them or feed them in the rocker and my grip strength was questionable along with whether I might fall asleep and drop the baby so I had to get up and go lay down safely on a bed to finish feeding the baby where he couldn't possibly fall down if my arm spasmed.

This held true even when I was wide awake. I often couldn't count on my arm muscles not to spasm from over-use and had to prop my arm against a couch arm or lay on a bed so that the baby was safe from a fall should my arm muscles spasm. I had to learn how to feed myself with my left hand and to write notes and grocery lists with my left hand because the right was exhausted and spasmed too often for me to use it for everyday function. It was a nuisance but worth the trouble.

Matrix profile image
Matrix in reply to BonnieSue

I can remember much of what your saying and the pain in shoulders neck and arms . I have 3 children one by emergency Caesarian and because of traumatic first delivery ( I was aware of the operation and felt everything but was paralysed so couldn't let them know )had the other two by elective surgery but I'm proud that I did it because it was jolly hard and like you I have real problems with sleep . Patt yourself on the back you did good . Fibromyalgia is not for sissies and I know I have had mine from being a child . Have a good weekend x

I use a little crutch to walk with and it dont really help. I have a child and it does make u hurt me

Hi Linda

I'm so glad and grateful you have posted this... you basically wrote exactly what I'm thinking and feeling.. I've recently had a baby boy whose now 10 mohths old and although he was planned it has been a real struggle for me even with my husbands support and aids. I don't want to say too much as I don't want to put anyone off from having children but you really have to be prepared. Mornings are the hardest for me and when baby cries to be picked up I struggle now that he's heavier. I couldn't breastfeed although I desperately wanted to as I can sit in one place for long periods and the pain and stiffness in back and neck muscles made it impossible for me and I felt guilty for so long! Some times I miss his playgroup sessions as they're quite early starts and I can't handle the noise and stimulation and again feel v guilty as I feel like he's missing out with social interaction because of me. I feel so depressed and feel like he deserves better I don't want him to grow up thinking it's normal to be in pain all the time as that's what he sees and that wearing a dressing gown all day is normal as I don't have the energy to do much else. Some awful person said to me "why did I have a baby if I have that many issues" :(

When will they ever understand that it's not all in our head!

Sorry for the long post but having a baby/child whilst suffering from fibromyalgia makes it increasingly harder as with everything else but we all deserve to have a family and children just like anyone else. Since I had my baby they reduced my PIP as the think I'm coping .. what choice do you have you have a little human being entirely dependent on you for everything. Feeling v isolated right now and have no friends. I'm 32 and when I see people of my age on social media travelling the world, going out etc I feel really sad.

Don't feel sad, you may be struggling with fibro., but your child will bring you so much joy.

Thank you yes he certainly does and the best decision I've ever made.. I just want to be the best mother I can be to him with this god forsaken condition

Sweetheart first of all don't feel guilty your doing the best you can .Some people will never understand that's just a fact . At the moment it sounds like you are going through the grieving phase and we all go through it , it's a certain realisation that life will never be as it was . But you will come through this I promise . Have you thought about the fact that you might be feeling depressed and that makes pain worse . Don't feel guilty about not being able to Breast feed he will grow up regardless into a beautiful little one who will bring you much joy and toddlers are so funny . If you ever need to talk I'm here for you .ps you can do this I did it three times and I survived . X

Hi matrix (loving that name :) ) thank you for your words of support means a lot to me. I do feel overwhelmed at times and depression is equally as debilitating. I try to remain upbeat and positive and even paint a smile on my face sometimes when all i want to do is cry but feel like my son can sense when the smile is not genuine does that sound strange can children even babies sense these things? You're right acceptance has been very difficult for me as my life now is so soo different from how it use to be and I suppose dwelling on it won't help matters but I can't help but reminisce what I was able to do, go, wear, eat, etc I am proud that I have become a mum I never thought I could do it and I am inspired by all the mothers out there!! I will push through this one day at a time xxx

I'm always checking my emails so if you need any help don't try to work everything out on your own , sometimes it helps to share a problem or a joy I'm here for that to. Sounds like you have a lovely hub and that's so important .

When it's getting to my ch for me I use this with my husband ,I say to him am I doing ok and he then tells me what I need to hear and it helps me go another little while . I think your feeling overwhelmed your tired and have a little one to care for and your in pain not a great combo . I remember the time when I used to run and go to keep fit, all gone now but I focus on what I can do , my hub loves cake and this week I have made 2 for him , don't know when I will do it again but his smile was worth it .

My daughter has two little ones and I know how tired she gets and she thank goodness is well . Thank care sweetie and when you have energy , time and the will get yourself a hobby it is by far the greatest distraction , I craft scrapbook , cards and all types of paper crafting bless you xxx

hi i live with it also , its not easy when you have children also, what i try to do is look at what problem in my condition i am having , then look or imagine looking into a mirror and saying what advise would i give a friend then see what comes .

it switches the brain into thinking of a puzzle then your mind will work on the answer

i was just researching on how to change your mind pattern

going from negative to positive thinking and not saying why does this happen to me or i cant do this or that anymore etc ...

i am at the stage of lets try something else instead of not doing or sulking and selfish ways

so im going to plant new seeds that will slowly change to more positve and happy ways which has not been there for a long time.

then the other is start looking after myself and take pride in the person i am ,because i got lost in life and kids .

my spelling and punctuation is not good, but that doesnt matter when you are normal and focused on real life and what matters to you

im at the stage that i am going to be the real me and not making out im better than everyone else , i dont judge anyone and take them how they are .

i hope this helps you not to be stuck for years in unhappiness


mary xxxx

I get windows of wellness each month when my symptoms don't stop me from doing most normal things. For example on my best days I can now walk for up to 2 hours without causing a flare up straight afterwards. And I can get on with most activities such as cooking, shopping etc if I pace myself and vary activities so that I'm not doing too much of one thing. I work as an artist from home and I'm able to work at a slow and measured pace. I have achieved these windows of wellness by seeing a herbalist and also cutting out foods I was reacting to. On the good days, I have a lot more energy than I used to get.

However for more than half of each month, I feel very limited in what I can do. I can't walk far, my husband steps in and cooks for me, does the housework etc (This is because my symptoms are very hormone driven). I could probably do with a walking stick for bad days and a perching stool for the kitchen, but I don't have them. I get in the bath every night and this seems to sooth my body.

Today I'm in bed, with the fatigue, aching, burning pains and weakness in my muscles and tendons, and shooting pains in my nerves. I've been able to get my own breakfast and load the dishwasher, but that's about it.

I have twin boys who are now 18 and they help out sometimes (but can't be relied upon!). It was really hard when they were younger, and I'm enjoying the fact that they are much more independent now. We used to have lots of story time in bed when I was ill during school holidays which I know they really enjoyed. I think being a poorly mum means you have something different to give children, something that healthy busy mums perhaps don't have, which is time. A slower pace of life. Valuing the simple things. We still eat together at the table every night, and I really value that.

Well I'm feeling low in mood but I suffer with SAD so as soon as spring comes I will feel some better . I don't like going to Drs so I have no help with anything and I have no one to blame but myself . I could do with a thing that reaches for stuff I can't reach as I'm only 5"2 . I manage more by will power and as most peeps with fibro I also have lots of other conditions so I do well on the whole xx

What's a perching stool & where or how do you get them,if it's what I think I could use one for shaving

Hi harryjoefoster A perching stool is a seat that has a back rest and arms but it legs alter in height making it easier to perform household tasks i.e. ironing, sitting at the sink or cleaning. If you have an Occupational Therapist they can get you one through an assessment or you can buy one yourself from amazon or eBay and many other online stores. Good luck my friend :)

Thanks for the info,much appreciated

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