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Life-limiting illness

How do I cope with everyday family life and fibromyalgia?

8 replies

cazsmall · 22/08/2012 10:58

I have been living with fibromyalgia since the age of 13. I am now 32, and was only diagnosed 2 1/2 years ago. For those who don't know what it is, fibromyalgia (or old lady disease as I lovingly call it), is a condition which involves extreme fatigue, and pain ALL over the body. I feel like an old lady, hence the nick name! I have three lively boys aged 11, 8 and 7, and I just can't keep up with everything. I work Monday to Friday and I can't afford to stop, but the exhaustion is really starting to get to me. I do have a partner but we don't live together yet, so he just doesn't get why I struggle so much. I don't make the boys help as much as I should mainly because I'm so tired by the time I get home, I can't get on at them to help. Any advice would be brilliant, because I'm at the end of my tether and I don't know how much more I can take. Help?

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TelephoneTree · 17/09/2012 22:25

Do you know - I would get yourself to see a reputable nutritionist / naturopath asap. Fibromyalgia is just a set of symptoms that have been given a name by the medical profession. There is an extremely high chance that your symptoms are due to food intollerances and a physiological imbalance as a result. Intolerances can kick in at any stage. They can test you to see how your body is working and make suggestions that are relevant to you to sort this out.
Don't accept it.

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WakeyCakey · 15/11/2012 10:34

My mum has suffered FMA since she was 19. she also has osteoarthritus.
I remember her talking me and my sisters exactly what the disease entails so we knew how much pain she was in.
I don't think its the best way but i do think it would be good for your children to know you can't do everything.

Also she worked from home for the last 5 years before she retired for it. I know she found it lot easier.

It is shit, but you are still young.
big tip, go swimming, gentle relaxing swimming and see if that helps x

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garlickbel · 21/12/2012 18:27

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garlickbel · 21/12/2012 18:27

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PrincessTeacake · 27/12/2012 20:56

I have fibro and I work as a nanny. Heres a few tips;

  • If you can afford it, hire a cleaner. That will take a load off your mind.

    *-Routine is your best friend. Try to have concrete schedules for dailytasks and they will come easier to you.

  • Have a set time of day for you to stop everything and go lie down. Make a production of it for the kids, hang up a sign, wear an eye mask, put the older kid in charge until that time is over.

    *have symptom remedies on hand eg; peppermint tea, hot water bottles, memory foam pillows, ibuprofen based pain relief.

    *Sometimes it is necessary to explain to your loved ones the messier aspects of your illness, the things you can't exaggerate, to make them understand. I have lost control of my bladder during bad flare ups, had rectal bleeding as a side effect of the medication, had my limbs swell so badly they locked into place and had to be dragged screaming to the hospital. You couldn't make this up.

    Also, talk to a specialist, avoid GPs if possible.
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KentuckyFriedChildren · 27/12/2012 21:59

It is possible. I have 3 dcs (5, 4 and 6 wks) and have been diagnosed a few years now. I agree with Princess that routine makes alot of difference. Also not hiding your symptoms. We have to make alot of allowances in this house and work around my illness. Some days I can barely move with pain and stiffness. Dh calls me "old lady" as half the time i walk around stooped over and when I stand up from a chair I groan lol. My older two dcs know that mummy isnt well and that sometimes I cant play or I cant do certain things with them and it breaks my heart when they ask for something I simply cant do for them. Dh is amazing, bless him. He works alot but does plenty around the house and lets me sleep when I need etc. I have been quite well recently (I think due to pregnancy as in some cases the fm gets a bit better when pregnant) but I am starting to feel ill again and am in alot of pain in one hip and my lower back. I am not allowed to drive due to meds that I need which is a pain as we live rurally and the school is a 3 mile walk (as is the nearest bus-stop) but I actually find that the walking does me good (though of course there are days where I just cannot do it in which case dh or a friend will do the school run or failing that a taxi). I think really a good chat with your dcs and a new routine/chore allocation is in order. Also do your groceries online, and keep stocks of chuck in the oven type food for when you're too sore/tired to cook. Also plenty fruit, ready made snacks, bread and ham/cheese slices/other easy sandwich filling as my eldest who is 5 can make sarnies for him and dd1 if need be and i'm sure yours could manage that. You're not alone ((hugs))

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KentuckyFriedChildren · 27/12/2012 22:02

and yy to seeing a specialist- gps' are fecking useless for this ime

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SparklyandHappyMe2013 · 03/01/2013 07:45

Watching this thread with interest as I'm really struggling. Was diagnoses with this last year even tho had it since I was 15.

I'm lucky enough that we could afford for me to give up work although would have to tighten our belts a little. What I want to know is would I be able to claim any benefits? Like DLA or ESA?

I work Monday to Friday have 2 DC and do all the running around as my DH works long hours during the week. Weekends he really does try to help out. I know he gets frustrated as he doesn't understand how tiring and painful it can get.

Today is my first day back at work after being signed off for a month with fibromyalgia flare & exhaustion.

Tia

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