It is hard enough being a parent, but being a parent with fibromyalgia syndrome will make it even harder. There are a few hints and tips that make life just that little bit easier.
Help and Support
Friends, family, and parents of other children, can offer a lot of support on bad days, allowing children to play, stay for meals, and even stay over. It is a good idea to have someone who could pick up the children in an emergency – perhaps a family member or a friend – and having a secret phrase will reassure the child that all is well.
Not all days will be bad days, and parents with fibromyalgia syndrome should take the opportunity of good days to take turns with childcare, spending quality fun time with their children, and their children’s friends.
Coping With Tiredness
Being a parent can be very tiring at the best of times, and it is even worse with fibromyalgia syndrome. While children are young, take the opportunity to have a nap while they do, and as they get older, work rest times around times that they are playing quietly, perhaps in a playpen where you know they are safe, or are visiting friends or going to a nursery.
If possible, get help with some of the jobs around the house, for example the laundry, or the cleaning, from a supportive partner, friend or family member, or pay a cleaner for a few hours a week. Spending time with children is far more important than spending time washing clothes, or cleaning under the bed.
As children get older, they can also help with the jobs around the house, and will learn important skills doing this. Each child could have his or her own job, or could help to plan a rota, and jobs can be set to music, or made into a family game.
Activities for Bad Days
Keep a ‘quiet day box’ including stock of books, DVDs, craft activities and quiet games, for the children on days when fibromyalgia syndrome symptoms flare up. This means that the family can still spend time together, reading, playing board games, making things, drawing, or watching a film.
Teaching Children about Fibromyalgia Syndrome
It’s a good idea to explain to children about fibromyalgia syndrome as soon as they are old enough to understand, especially so that they understand that sometimes you can’t play with them, not because you don’t want to, but because of tiredness or pain. Try and do this without making the child feel too worried or afraid.
Children as Carers
Some children end up caring for a parent with fibromyalgia syndrome. It is important that these children get time away from their caring responsibilities, and have the opportunity to spent time playing, resting and relaxing. Many areas have support groups for children who act as carers, and fibromyalgia syndrome self-help groups may be able to provide support to both the patent and child.
Will I Pass Fibromyalgia Syndrome On to My Child?
Children of a parent with fibromyalgia syndrome won’t necessarily develop the syndrome themselves – however, they may be more likely to develop the disorder than other people may if something triggers it, such as an accident, infection or stress.
I'm really struggling I have my 2 grandsons full-time or thy would of ended up in the system been 18 month now thy are now 2 and 4 and its extremely hard as I don't get much help from family I'm exhausted 24/7 pain in brutal just walking them to nursery everyday kills me my mental health is bad I feel so guilty as I have more bad days than good so I can't take them out as much as I'd like it's just so unfair I've lived with this for almost 9yr.
Mandymoo - 19-Sep-21 @ 3:15 PM
OK,daughter understands she has FM, when you haven't personally experienced anything like it, it's not easy to understand and end up saying things less than positive and hurtful when hurt was unintended.
So now I'm trying to become more understanding whilst seeing my daughteroom sink with everyday that passes. She a mother and a nurse but struggling to hold it together and being very hard on herself.
Where does she go from here?
Nondancer - 12-Dec-19 @ 7:53 PM
So i am 25 i have a 2yo dd and a 3yo dd i have FM its killing me im so depressed its unreal i cant play with my children i cant run around the park and swing them in the air i try my best but when my 3yo asks why we cant play i struggle to explain to her why mumms so tired or she cant cuddle into me because i have a flare up and i cant bear to be touched my poor husband plays mummy and daddy most the time i feel like im letting my family down
Tbrinky - 12-Jun-19 @ 6:49 PM
@Tish - thanks. You're right. I learned to be a bit more selfish and say 'no' when I know I cannot do stuff. You have to - if I take time out when I feel bad and in pain, I recover quicker. If I try and plough through it, I find my recovery time takes longer. My family have now at last began to understand and help.
JackieH - 11-Dec-17 @ 12:25 PM
I was diagnosed with Fibromyalgia in November 2014. After coming out of a operation 3 days later my life changed over night. The fatigue was hard to cope with from being a wife and mother of 4 boys and part time worker as a priviate nanny and working with children with autism. I was unable to manager my home life let alone return back to work. Even now in October 2017 I was diagnosed with COPD Lung disease. I have had to learn to take life at a different pace. But it's took me my ups and downs to get here. Just coming out of 3 day fatigue and pain flare up very draining. Yes I am in pain every day but there days you manage and days the world stops. Ive had to live with the grace card I call it. When the boys trash the house because I cant let them feel on edge all the time. Yes they clean cook shop iron ect and it's made them responsible children they are 13 15 18 22 years old now. Last year I had to stay in hospital with my youngest son who was admitted for asthma attack. I had sleep problems pain ect we had to stay for 4 nights it was hard. I am on a lot of pain relief to manage and there are tears emotions at times but I have had to choose this is me now and I can't allow my mind to get low even though its ok sometimes pity not an option. I am starting with Ruemotherapist in January 2018 had councelling to help me see manage the changes adapt ect do classes with people with long time sickness. It helps. If your a person just diagnosed or person who has been living with Fibromyalgia you can live with the changes with adjustments asking for help. When I couldn't get out with the ladies I got them to come to me bring food snacks drinks ect and we would chill in. I tell my family friends My batteries run out tonight. I am on a traffic light system red stop amber weigh up should I rest or get somethink done green go I am up for it but pace yourself. Do stretches mild exercise if you can. There times I go gym now and overtime I can't for weeks. Learn teach yourself to manage you your realistic goals your do's and don'ts be realist don't be hard on yourself. Learn the mind games mind sets. Keep focus on what you can do not what you can't. My Gp very limited with information so alot of the time I research and get them to refer me to the treatments that are availible fight for you don't except others lack of knowledge you takecare of your condition write a diary it helps the Gp to manage your condition better.I really hope my story helps someone.
Tish - 9-Dec-17 @ 1:42 AM
Hi....im a father suffering with Severe Fibro, Chronic Fatigue, Chronic Pain, etc, etc, and am on high doses of morphine daily just to make it through.I have twin 18 month old boys and life is extremely difficult, but we have found a balance with external childcare which helps a huge amount.Our childcarer is fully aware of my condition and is prepared to collect and drop off the boys if im unable to do it myself.She also helps get them in and out of the....all of which is well above what she should normally be expected to do, and we certainly wouldnt get that sort of help from a nursery!
darkcyde - 4-May-13 @ 3:35 PM
Hi I suffer with fibromyalgia and depression I have 2 children aged 11 and 2, a lot of the time I find it really hard 2 cope with I am on medication to help and my gp is a great help 2 me, because I am not in a cast or have a broken arm or leg people do say pain couldn,t be that bad but I have to live with it everyday of the week for the rest of my life, my kid,s are my life I just wish I could be like a normal mother and do a lot more for them, I could say a lot more bt really in pain at this min so i,ll leave it there.