Fibromyalgia Action UK
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So tired ,my tired is tired 💤

So tired ,my tired is tired 💤

Hi , hope everyone is as well as they can be.

I’ve had fibromyalgia for a long time but in the last two years it’s got a lot worse. I’m just wondering how people manage their energy levels? I can still work as I work from home I also have two children 8 and 9. I seem to keep myself going all week but when it comes to my day off I am totally wiped out. Which means I can’t do any thing with my family. My doctors are less than helpful and just said that how it is. I’m so sick of explaining myself to friends and family why I’m so worn out from just showering.

Luckily I’v got my my fur baby who rests as much as me ! 🐈

Thanks Gail x

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Hi Gail76 I am worn out after a bath too and other half doesn't seem to understand although he says he does. I need to try pacing more and leaving chores I think as it is making me worse but then I look at the mess and that bugs me! My GP isn't helpful either, glad I found this community as need to be in touch with others with Fibro. Love the puddy cat btw Pen 🤗

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I have a fur baby too.

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I have 4 fur babies

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I have a fur baby too.

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All the Same it is a very Frustrating Illness!! I have had Super Stress With Elderly Relative.

And the Powers To Be Have Cut Her Care. Very Hard So Today my Body has Collapsed under All the Stress. I feel for You Especially with Youngsters!! Hopefully Feiends Could Offer Some Support To You. Take Care. 😀👍💕💕

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Sending love. I think that’s what’s happening with me. I’m trying so hard to be well that my body is just shutting down at times. It’s so frustrating on top of all the pain. Xx

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I hear ya! Socks on the cat paws to clean the floors maybe?!?! LOL 🤗💜 Pen

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🐈😂

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and a duster on the tail for the dusting, now just have to work out how to get them to use the hoover!!

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HA HA ! 😂 Isn't that what the partner is for!!

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Thank goodness for this group and fur babies. My partner is the same. I just think they can’t imagine the pain and tiredness. Send love to u 💕

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Sending love & hugs back 🤗💜 No fur babies for me :( Definitely hard to get them to understand isn't it? Yes the community seems to be really nice to chat about it all :)

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I am the same but I can't work. if I go for a break away, I come back wiped out. getting showered and dressed is such an effort. just drag yourself around. not with it at all. fatigue has got worse. got no life or energy to do anything. the things I loved doing, can't do much anymore with fear of wiping myself out. feel like a wilted flower. xx

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It’s so hard isn’t it. I’m worried everyday about how much worse this can get. I feel like I’m letting everyone down xx

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Don't beat yourself up about it, or you will become even worse. Don't apologise, either. It's nobody ease's business!

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I can empathise with you as I was the same when I was working full-time. I was working long hours in addition to my responsibilities at home so was using all my energy reserves to keep going during the week. By the time the weekend came I would collapse in a heap and just spend my time off resting and catching up on sleep so that I was able to start it all over again on Monday. I had no social life and was also popping pills (prescribed painkillers) like smarties to keep me going but it was impossible to sustain and I finally crashed. I ended up having to take a 2 year break from work which was difficult but also gave me the chance to step back and concentrate on finding ways to manage my condition. I am now back working in a different less stressful job which is part-time. I have a lot less money but I do feel better, less anxious and have more quality time to do things I enjoy which I never had the time or energy to do before. I know it's not possible for everyone to change their working hours for financial reasons etc. but if you can, you may want to consider reducing your working hours as it does help relieve the pressure and free up time. I have never regretted it even though I am financially worse off, as I'm no longer the constantly bad-tempered, worn out grump that I was and now have some of semblance of my life back. Having children does make it more difficult as you naturally put them first but you do have to make sure you're okay before you can take care of others so I hope you manage to find some balance. Take care. x

P.S. Lovely pic - I love cats and yours is a little cutie. x

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I know. we are all of us in the same boat. x

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Thanks for the advice. I’ve cut back as far as I can for but money reasons that as far as I can go at the moment. Thanks she’s a sweetheart, she’s called Coco 🐈 xx

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Hi Gail, I have FM for 10 years diagnosed and about 2 years prior to that. I learned to manage my fibro and as I worked for myself I could work when I could. I led a good life but it took constant management. About 2 years ago I started feeling very unwell. It was something new and it was sudden. My constant management of FM was not being active in getting well- it was just trying to survive.

I was diagnosed with Polymyalgia Rhuematica and likely Giant Cell Arteritis (problems with the arteries going to the eyes and head). I was so shocked, as I thought nothing could be worse than having Fibromyalgia, but this was awful. I decided then and there I would not get worse. I have put much effort into getting well the last 2 years. I have done much research and took measures to improve my health and now am getting better.

So my advice is do your research. Go search for answers. You will not find the answers on here. Here is an OK place but support is not going to get you well. You will not get well whinging on here and having people say they like your cat.

There is a reason millions of people around the world are getting FM and many other diseases. Find the truth. Get tough! Get well!

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I’m am doing all those things. Including yoga cbd oil and a positive mental attitude. I wouldn’t say I was whining on here. Just looking for advice and tips. Its a shame your answer has came with a negative tone.

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Hi gail76 😊🌸🌿🦋

I understand what you mean dear. I love the pic of your fur baby.

🌸🌸🌸🌹🌹🌹🌸🌸🌸

Isn’t it terrible that you have to push yourself so hard until your day off and then you simply collapse like a deflated balloon 🎈?! I thought I was the only one that is absolutely worn out after showering. How can something that refreshing/cleansing be so taxing on us??? I simply don’t get it!!! 🤷‍♀️😳

I’m sooo sorry that you are suffering/struggling sweetie. I hope it helps a little to know that you’re not alone.

Take care dear. Best wishes and abundant blessings.

😊🌸🌿🦋🤗💗😘

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It does, thank you for your reply and understanding. 😊💜

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You’re welcome dear 😊🤗💗😘

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Good morning well done for doing the best you can I am the same mine has got progressively worse in the last few years so have needed to reduce hours at work and had to look for alternative therapy as well keep doing what you are doing and for many of us our fur babies are our little bit of heaven xxx

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So true 😊xx

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I have given up trying to explain it to other people they don't understand and really don't want to hear it. if you say you are exhausted they just say I know I am as well, if they knew what real exhaustion was they wouldn't say that. I had 1 gp turn round to me and say that many gp's including him didn't believe that fibromyalgia was real and goodybye don't bother me again. complete waste of time

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I’ve had that too. It’s so frustrating! Suppose all we can do is keep fighting and hoping. Take care 😊

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I would just love that once-only once, that I can tell a friend how utterly exhausted I am and for her not to respond "so am I". It's so very rare I ever share with others (family included) how bloody awful I really feel as I know they will just never get it unless "they get it"!. I just wish to God there was something I could find to increase my energy. I have literally spent hundred's and hundred's over the years looking for something that will give me a boost. Take care xx

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Feeling it too hoe you can find some me time and chill 👌

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Thank you, you too ! 😊

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Totally empathise with you. I've had mine 10 years and after the initial shock I adapted my life, paced, still tried to exercise etc etc you'll know what I mean. However every now and again the fatigue returns with vengeance. Sunday 15th I celebrated my birthday on a beach and managed to stay feeling well all day. Yesterday breakfast wore me out. I went back to bed and slept until 4. Got up not feeling refreshed and sat with the family feeling exhausted. I didn't have the strength or breath to do the things I'd wanted to do like walk the dog or potter round the garden.

My hands feel tired just doing this text.

By the way, like you I'm no whinger. We're just using this forum to 'explain' not 'complain'. Hope you get a more energy phase soon.

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Sounds like u had a lovely birthday! It’s so difficult isn’t it.

Thanks for saying that. I try to face this illness with positivity everyday. I just need a place to be honest sometimes and I always felt that in here. 😊

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I don't think there is any point trying to explain to people. They will never understand. I have had it for 19 years. If I get anything on top of fibromyalgia it's a nightmare. Working is tough. There is no way I would qualify for any benifit. The good thing is it is not life threatening. Just try to keep going.

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Well said yes nobody who doesn’t have it get FIBRO one bit do they? It’s infuriating but not their fault. Working is tough I have had FIBRO for years and it’s very hard like you say gotta keep going and it ain’t life threatening on the positive side

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Where do you work locally? What do you do? Good to have a PMA and keep going as long as you pace so you don't fall into push & crash cycle

Keep strong

Emma :)

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A PMA? it’s all about pacing the speed you are comfortable with and I find that varies from person to person and from time to time too. Nah I travel to work jobs locally don’t offer good opportunities

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Positive Mental Attitude (PMA) Oh the travel must be hard and then the hours and back home. How do you manage to keep everything going? Have you got an other half of family to help out at home? :)

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Ah ok got you! That’s a new abbreviation! I like that one, the entire span of life isn’t easy so it’s not easy to upkeep house job life and sanity! But us humans have an intrinsic streak of willingness that keeps up going even when we think it’s impossible

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I really feel for you, Gail. I have the same problem and have spent literally hundred's of pounds on all kinds of so-called remedies. All to no avail. My fibro has worsened over the years, but it is the abject fatigue that is ruining my life. My doctors aren't remotely interested either. I cannot believe that in the 21st century that there isn't anything non-prescription that will give us an energy boost that many of us so desperate need. Unfortunately, friends & family just don't get it as I look so much better than I ever feel. Sometimes I wish the outside could reflect just how lousy I am feeling inside. Good luck, Gail. xx

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Thanks for the reply. It’s hard I know what u mean. People mean well by saying that you look great ! But I feel like saying I feel like shit every day ! That would shock a few people! 😂

Good luck to you too xx

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I hear ya! Would be so nice to have just one crap free day and feel good. :-) xx

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In this heat I do what I can early and late, when the sting of the heat has left the day. I take the Continental approach and Siesta!

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Siesta sounds like a good idea 💡!

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Hi Gail

I totally know where your coming from. I'm 39 so get so frustrated when i feel I can't do something that really at this age should be a doddle. yesterday I put together a flat packed side board and todayI can't move. I couldn't even get dressed foe work today im aching so much. I work full time and also have 2 children but as for the ex husband he left after 2 weeks of finally getting my diagnosis of fibro. so much for in sickness and in health hey. I too will have to learn how to pace myself but on the odd occasion when i have or not felt too guilty in having a lie down for an hour it actually really does help. I think we all should be a bit kinder to ourselves and try putting ourselves 1st oncein a while, but i suppose that's easier said than done, but what's an hour if it means your a bit more able to spend more time with your family.

Oh i also have eye babies 6 of the bloody things. Love them all though . If only they could help with some chores and lighten the load .

Take care and give yourself a life break now and then it helps in the long run xx

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Hi, thanks for your reply. It really helps to hear from other warriors out there.

Sorry that happened to u ! Your ex sounds awful!

I have 4 fur babies. 2 house rabbits and 2 cats ! That enough for me. 😂

Take care xx

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