All your fibromyalgia experiences, questions and answers.

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Postby Butterfly8588 » Tue Mar 03, 2015 11:26 pm

Hi everyone,
I'm so sorry to moan but I am so tired I could cry. I'm literally to the point that I am about to give up everything and not leave my bed. I have yet another horrendous week ahead of me and I just don't know how I can manage anymore. I think the worst part is that I don't get a week off because I'm a carer to 3 family members who dont live together and I really don't mind helping but I'm so exhausted cos it just doesnt stop. They are all very good and try to make things as infrequent and easy as possible bless them but they need things doing and there's no one else to do it.
To top it all I've got no hot water because my boilers faulty so thats Thursdays drama and early morning when they come to fix it which I don't like and tomorrow I've got to be at the drs for 8.40 and have another full day. Friday I'm busy to and half of Saturday and all Sunday and then we're on a new week and it all starts again.
I know people will say to say I can't do it but there is literally no one else whos willing to help. It doesnt help that I go to bed hurting, have to move around all the damn time else it hurts and when I eventually get to sleep I get really vivid and weird dreams and I wake up all the time. Its ridiculous, sometimes I swear I'm more tired when I get up then I was before I went to sleep!
Anyway I don't know what I expect anyone to do but it was nice to have a moan! Feel free to add your moans if you wish, it's nice to hear from people who understand and this pity party of mine has an open invitation!

Take care xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Fatigue

Postby Gingermama » Wed Mar 04, 2015 12:07 am

I can totally sympathise! In so many ways it is the fatigue I'm finding most debilitating! I get to 4pm and I just can't function. I have to have a nap on the sofa while the kids watch tv. I work part time but have 2 kids and I'm finding it more and more difficult to cope. I don't have anyone to help apart from my oh who helps as much as he can but he has a demanding job.

I just want to curl up in bed and not get up for a week. I also get the weirdest dreams. From zombie apocalypses (I don't watch this kinda stuff) to hunger games to aliens coming to take over the planet, I swear I've dreamt it all up! I even have dreams where I'm not sure if it was real or not... Teeth falling out and flying...

I really don't know how to deal with this fatigue! My GP is gonna refer me to a CFS clinic to see what they can do to help me learn to cope with it.

Fingers crossed it helps...
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Re: Fatigue

Postby ixel-chick » Wed Mar 04, 2015 5:08 am

Butterfly8588 wrote:I get really vivid and weird dreams

Are you on any medication? Vivid dreams are often a side -effect of medication, which made me ask.

If you are on any medication, is any of it for the fatigue? If so, and if you've been on it for long enough for the body to adjust totally (this can take months), then it doesn't sound like it's the right medication for you and your fatigue.

Gingermama wrote:I also get the weirdest dreams. From zombie apocalypses

Ship 'em over to me! I'd love to have zombie dreams... but sadly mine are all mundane, boring, everyday stuff. It's like the fun part of my brain goes on holiday when I sleep, and instead I dream about cleaning the house or going shopping for groceries. :( I used to have weird and wonderful dreams (and always knew I was dreaming), but it stopped (probably round about the time I developed fibro). Now my dreams are as much fun as watching paint dry.
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Re: Fatigue

Postby redplanetgirl » Wed Mar 04, 2015 11:42 am

Hi Dear Butterfly
Have you tried taking any B vitamins, they may give you a boost, and your doing a great job, looking after these people, you deserve a holiday good luck and your not alone, and its okay to moan
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Re: Fatigue

Postby Susan Stokes » Wed Mar 04, 2015 2:50 pm

You have my sympathy. You are a typical carer, you don't allow yourself to be ill. Do you have a local 'carers for carers' or similar organization? They may be able to give you some advice. Unfortunately, the more you push yourself the worse it becomes, trust me I know this from experience. And, NO, don't apologise for having a moan, I think you are entitled.
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Re: Fatigue

Postby Barbara H » Wed Mar 04, 2015 8:27 pm


I fully understand, and its tough, I can only suggest to talk to the Doctor in the morning about it, see if there is any advice, or if they can point you in the right direction to try and get some help, or the unwilling ones who are around, get them all together and ask if they can offer any help at all, as you are really struggling. Its not fair on you, you need others to get their fingers out and do their bit.
Good luck, I hope things improve for you.

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Re: Fatigue

Postby Zia2014 » Thu Mar 05, 2015 2:37 pm

Butterfly, I know you say there is no one else to do it but think about this - if you have a flare up and can't even get out of bed then someone else will have to make it happen. This should NOT all be falling to you, you are making yourself ill!

I second Susan's advice. Please look after yourself x
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Re: Fatigue

Postby Butterfly8588 » Sun Mar 08, 2015 1:47 am

Hi everyone,
Thank you for your lovely replies. I'm not on any regular medication, I just take some codeine every now and then when I cant handle it. Oh and naproxen to cos I find the combo takes the edge off. To be honest I find myself wishing to be ill just so I have a reason to myself not to go out.
I cleared this weekend to have some time to myself cos my headaches are bad and wouldn't you know a family member got taken ill? I've just spent 6 hours in a and e trying to keep everyone calm and find out what the bloody hell is going on because nobody was telling us anything. Not very restful I'm afraid. Oh well maybe one day I'll have a rest. My mum said to me tonight that even when I'm dead someone will be knocking on my coffin asking me to do something! She's probably right!

Thanks again for your replies xxx
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Re: Fatigue

Postby carolad » Sun Mar 08, 2015 2:02 am

You are a kind and caring person Butterfly, I hope your family appreciates you! Please don't forget to look after yourself too though. Hope everything settles down so you can rest x
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Re: Fatigue

Postby bandj » Wed Mar 11, 2015 6:40 pm

Oh, Butterfly. I am the sole carer for my hubby and everything falls to me every day and every night. I love him to bits but sometimes I get so tired of having to fight with doctors and hospitals for his care. We're both just getting over chest infections and it's worn me right out. Im saying this so you'll know that there's someone else who can understand.
You do have the right for a carers assessment from adult social care. The people you care for are also entitled to an assessment of their needs. Carers UK can offer you help and support too. By the way, you are still entitled to a carers assessment even if your carees don't want to be assessed. Please consider getting an assessment.
Caring, even when your own health is good, is a massive commitment and full credit to you for all you do.
and, you are fully entitled to have a moan now and again! Be kind to yourself.
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