bedbound days

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bedbound days

Postby Wackers34 » Sun Nov 17, 2013 4:30 pm

Hi all

Does anyone else have bedbound days through flares? I have been pretty much bedbound since Thurs mainly die to fatigue and im frightened that I have worked myself into the ground...Its so hard looking after the kids like this and not sure how I will return to work on Monday, been signed off sick 2 times already this year and one was for 4 months!

At the beginning of the illness I was like this, like a whirlwind bedbound and not sure what was happening to me, slowly over time I got myself back, then have good days and bad days...Now again more bad days than good

I have had this for only 11months and only on amitriptyline, have many symptoms...i am 35...I thought this was not meant to get worse and I feel like it is - does anyone have any tips for me...?
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Re: bedbound days

Postby Dawn1501 » Sun Nov 17, 2013 4:40 pm

I have had those days for ages now. I have been signed off work since the beginning of oct and am signed off til the beginning of December but have to c the dr before I go back. My meds have all been upped to maximum dosage and am still struggling . I just think these days r part of the territory so rest when u need to. There's no point exerting urself. Microwave meals r a godsend lol
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Re: bedbound days

Postby daisies » Sun Nov 17, 2013 4:59 pm

I have not been able to work for 6 years due to fatigue and pain. Luckily enough I do not have children at home (all grown up) so do not stay in bed but sit in the living room and just potter around the house. My condition has got worse over the years. You will also find the weather affects you, the cold and damp will make you worse.
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Re: bedbound days

Postby djclall » Sun Nov 17, 2013 5:32 pm

Hi,
I don't have bedbound days as much at the mo. Like above i spend most of my days between the front room and kitchen. Trying to make myself do little chores. When feeling too sore and tired i stay in bed and watch tele. Well until the kids come home that is and then they get the remote. Just a thought for you, when i am feeling sorry for myself i try to ignore it and pick up the phone to friends to see if they have any news or if i can give advice to make myself feel useful. ( That doesn't sound right but hope you know what i mean?)I just have pj days. This time of the year i find it a lot warmer in pj's than getting dressed. Or should i say just the thought of getting dressed wears me out. The only time i get dressed is if i have to go out or when my younger brother knows that i am starting to slip into a depressive state and literally drags me out. He doesn't take NO for an answer!!.

Are you in a position to ask for help with your kids? Ie- other members of family or friends?. Are your kids of an age that you can explain how mummy feels and why she seems to be in bed a lot?. If they are of school age is there a neighbour who has kids that go to the same school?. Just take a deep breath and ask if on occasions that if you can't get them there would they mind taking and bringing home ?. I also have kids. 18, 11 and 6. younger 2 are girls and oldest is boy. My elder 2 can remember what our lives were like before fibro invaded our family but my youngest can't really remember. But the amount of support and understanding i get from all 3 is unbelievable. The list is endless for what they do. But if you ask the younger 2 to tidy their bedroom that is a different matter. Lol.

Where work is concerned, how understanding are they of your condition? Is there any room for flexibility? Or shortening your hours?. Please don't go back to work until you are ready. And don't worry about it either. Because as i'm sure you know that will only aggravate your fibro.

Could your GP or consultant not try other meds as well as the ami?. I am on Gabapentin, ami, tramadol (even though in the last year and a bit i have started to reduce. Was on 400mg a day. Now on 100mg a day), dosulepin and Buprenorphine patches. Different meds work differently for different people. How lovely would it be if we could just take 1 tablet a day that sorted all fibro symptoms out??.

I wish you good luck and send you soft hugs. Also i know it is easy to say but never feel guilty or like you are asking too much of people. They can always say no!.

xxxx
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Re: bedbound days

Postby Wackers34 » Sun Nov 17, 2013 6:55 pm

thanks djcal for your lengthy response

Just answering some of your questions -

Kids are 3 and 5 and were 2 and 4 when this first hit...they are exhausting as it is, let alone with illness! they don't really understand, see me up and about and at park with them one day and then in bed (usually crying or shouting at them) another day...Literally in last couple of days my 5 year old son has had to go and make a sandwich for his tea (as my husband was away with work)

I have great support already from my mum and dad - they look after my youngest 2 days a week as it is and live 45 mins away..my hubbie is very supportive and understanding, but I can see it gets him down. We live in a tiny 3 bed house and were planning to move this year to a bigger house for the kids sake...
Yes work know it all and have been through a rollercoaster ride with me this year...HR are very good and understanding, and its a major corporate company and yet im the only one withh fibro on their books...I already work 4 days 9:30 - 4:30 as it is and i struggle with this..trying to get less hours has been a hard fight, im nearly there just as it looks like im going down again. Im very lucky I have good friends, two have fibro also, but not as affected as me, one has M.E so sort of understands, though she had it as a child and is now a lot better.
Neighbours do have children of same age, part of my problem though as i was a working mum, i didnt get to make many friends in the playground and therefore dont now them that well.

Do you work? I think this is the hardest part of it all for me...I want to give up, but can't afford a life if I do, ive done the same job my whole life and i dont know anything else :o(

Soreness is bad, but i think I find the fatigue the hardest part. I think I have CFS also, though not confirmed by doctor
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Re: bedbound days

Postby MichelleJ » Sun Nov 17, 2013 11:29 pm

Hi Hun, both me and at least 2 of my friends who have fibro get days where we can't get out of bed. For me the longest has been a week where I literally only got out of bed to go to the toilet any needed my crutches to do that. This was followed by several days in the wheelchair where I used it round the house and just got up for an hour or so at a time. Was housebound a good month on that occasion.

I don't work anymore, I can't. Not done for 3 years now. I have a joint fibro/Cfs diagnosis, I went down very quickly with it. I have. Carer in 25 hrs a week now to help me with day to day things. On my own with my 8 yr old as husband and I just broke up.

My friend has been a lot worse than this being bed bound for weeks at a time.

It's not classed as a progressive disease cos it doesn't cause damage that gets gradually worse but as an illness it can and very often does get worse.
Dx with fibromyalgia m.e/Cfs and asthma
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Re: bedbound days

Postby zaininayah » Mon Nov 18, 2013 1:15 am

Hi. I feel your pain. Im 45 and have a 5 year old. Im off work at the moment. Just been diagnosed recently. I hate the headaches. Vomiting, brain fog, very stiff neck. Pain every where. Im also a diabetic. Im just finding it too hard to cope. In the last 5 weeks ive had 7 flare ups. Its horrible. I find it tooo upsetting to cope with. Generally people who do not have fybro. Just don't get it at all.
Actually im in shock. Pain for over 15 years. Ignored by doctors several times, putting it down to wear and tear. In april this year i stopped work, just could not carry on. Gp only sent referal in sept.
What am I going to do? Whats my life going to be like? What does the future hold with regards to this illness?
Totally lost:((((((
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Re: bedbound days

Postby painprincess1 » Mon Nov 18, 2013 3:20 pm

hiya all . well i have a 18 month old and 3 teens, so i no how u feel . i cant have rest days in bed,i trust me i would love to.but then i find the worse thing to do is rest the min i stop moving i stiffen up no end.i cant spend the rest of my life in bed and im dammed if im going to .xxxx
smiles and the world smiles with you. cry and you cry alone.
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