All your fibromyalgia experiences, questions and answers.

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Postby sarahmc1983 » Mon Oct 19, 2015 8:53 pm

Hello all

I am new to this forum so please excuse me if I ask any thing that has been asked before or if i repeat myself :)

Im Sarah and Im 32 year old mummy to 2 little girls

at the risk of sounding like oh poor me which i dont mean to - as i know i am so lucky - i just want your stories and expereinces :)

Ok so ive been going every blood test under the sun this year and finally have an appointment with the rheumatologist in a week - its ridicualous that I have all my hopes pinned on this appointment just to get some help and advice

i have suffered with extreme tiredness on and off for several years to the point i was barely able to get out of bed and just didnt have the energy to do any thing at all

it has only been this year that the pain has started - back, neck, shoulders, hip, arms, wrists, even down to my fingers and toes.

somedays i feel relatively full of beans and the pain is bearable but most days, im in agony

i used to work 3 jobs, have run my own business working 15 hour days - and now i struggle to get the kids to school and nursery and manage 4 hours at work - and that is my most productive days of the week. other days its a sturggle to do any thing and i just try and stay in bed. obviously things like cooking tea and doing laundry etc have to be done so thats just a matter of grin and work thru the pain. my hubby is a god send and even tho he works full time he looks after me so well

its painful to lie down all day, painful to be up and about, painful to get up the stairs etc etc - you know the drill!!!!

im on gabapentin 400mg 3 times a day, co codomol 30/500mg 3 times a day, naproxen 250mg twice a day plus i also have tramadol when needed - and even though some days i feel drunk in a great floaty way ha ha, has only marginally touched the pain :(

just wondering if any one else can share their experience, what pain relief helps them, any tips and advice for coping
i'd really appreciate it

it breaks my heart that i cant run around with my kids and spend so much time in bed or on the sofa napping

thank you so much in advance
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Postby AlisonL » Mon Oct 19, 2015 10:29 pm

Oh poor you - it's dreadful when you find you can't be the wife and mother you want to be. Please have a look back through previous posts - there's one about 10 things that make fibro worse.
Personally I gave up most of my meds because I couldn't function on them - I take codeine now and that's about it. This is a very personal choice but worth exploring. It's about getting a balance between pain and functioning.
Mindfulness/yoga can really help - mindfulness because you need to focus on what is, not worry about what you can't do. Yoga or other gentle stretching exercises help.
Additional (alternative) medicine is worth exploring - some people find the homoeopathic remedy rhus tox helps.
Also various supplements - magnesium and Vitamin D are high on many people's list.
Diet is the biggie for me. Gluten intolerance is a common trigger, lactose sets me off. If you have IBS (common comorbid with fibro) then try and see an NHS dietician and get put on the FODMAP plan - it's a great way of identifying trigger foods.
It's such a tricky , personalised disease it's almost impossible to generalise. Don't just accept the status quo - there are ways of fighting back. If you live near one, consider going on a pain management course - very difficult unless someone can look after your children for days at a time, but can be rewarding.
Good luck!
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Postby crazy_cat_lady » Tue Oct 20, 2015 11:20 am

Sarah, reading your post i starting thinking "when did i write this?", because i so easily could have!! lol

only differences are age (42) kids (3 still at home, 2 away to work and uni), divorced so no adult help at home, not working(full time carer to child with ASD), never got refered to the rhumy, and had to stop the gabapentin.

i know what you mean about the "floaty" feeling, i have to limit the co-codamol and naproxin during the day as dont want to risk driving while floaty! battle through the pain allday then space out in the evening. gabapentin was horrible, turned me into a twitchy mess so had to come off it (10 months later and still get regular twitchiness tho!)

to be honest, i still havent found a happy medium for coping, i just simply cope, how i dont know sometimes!! i did find a small trick to getting the housework done(never ending job with kids around!) involving a timer - by setting it to just 15 mins, working till the timer goes off, then set again 15 mins for a break, then 15 mins working again, first time i tried it out, i couldnt believe how much i accomplished, as by taking those regular prescribed breaks, i wasnt flat out knackered by the end of the day. (unfortunatly i managed to get away for a weeks break recently while the ex stayed with the kids, and the house went to pot again, and with half term hols on ive given up trying to keep on top of it again for now, waiting till they are back at school)

not sure that ive been any help here, just know that your not alone in this, and hopefully youll find some good advice/answers on here.

tired all the time!! zzzzzzzzz
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Postby sarahmc1983 » Thu Oct 22, 2015 1:07 pm

thank you both so much :) i well def by looking at the alternative remedies and the timer idea sounds def worth a try

been sent home from work this week as was unable to barely get up the stairs or stand up at work - plus i have had to call in sick at short notice on numerous occassions - and hubby took me to the walk in centre and was given steroids to try and an increase in naproxen :( im going to book in for a massage and look at options like heat / water therapies too

i am sure u both are so frustrated too - already i have had my assistant manager ask me if its " im sure its not a a brain / mind thing" because the pain killers dont help? seriously! if i had the energy to spare i could have clocked her lol

ur advice and tips are soooo appreciated. its hard not to feel alon and isolated as people seem to think well you look ok - on a good day i can scrub up ok and even get on a bit of make up so ppl think u r fine - guess we just get used to putting on a smile and grinning and bearing it - i guess with kids its a matter of tough luck if you are in pain, the kids need food and clothes so u have to push on until they go to bed.

must say hubby has been great and has took two days off work so i have been able to stay in bed

im a bit in limbo at the moment with work as i cant afford not to work but struggle with stairs and need to have a rest after getting up them, standing too long, 20 mins tying on a computer is enough for my arms and wrists, cant do lifting - just dont know what to do

i think that makes it worse have you found - the not knowing what is going to happen from one day to the next

i wll try all ur tips
thank you xx
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