Tired of being tired

I wake up every single day tired, I am tired all day long yet still go to work and university with a smile on my face. I go to the gym with a smile on my face, I see my friends with a smile on my face but all the time I just feel like crying because of this horrible disease. No one understand what it feels like to be tired all day long every single day and to not be able to concentrate on anything for more than 10 minutes, or to be in so much pain that you can't physically get out of bed some days and even when you can the pain is still there and still draining the life out of you. I'm tired of hearing 'it will get better' 'the tablets will start working soon' because no they won't and no it won't. I'm doing everything the Doctor's say, changed my diet, taken the medication and even still I feel the same if not worse than before. So sick and tired of feeling like this day in, day out and having to put a smile on my face and pretend everything is ok.

28 Replies

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  • Totally understand. I'm the same but luckier than you because I'm retired on medical grounds and basically do nothing. Despite this I'm still tired with little if any energy. It's an awful way to be. Sounds like you are doing amazingly well somehow.

  • I'm 20 years old and want to be out having fun with my friends but instead I spend most evenings in bed at home because I'm exhausted from being at work all day, it is so so frustrating!

  • You should indeed be having fun. Can only hope things can improve for you.

  • Yup

  • Hi km1996

    I am with you there! . All I can suggest is com i ng on here for support, as others don't seem to really understand about fibromyalgia symptoms.

    I got so down recently as been of work for ages and can't get back to feeling like me me, although today has been better so far.

    This disease does give us up and down days, I've had more down days lately, but, been here before and did get easier, so I'm hopeful will be able to manage soon but this flare has been hard.

    I decided to see a counsellor (my work pay) and then decided to start sessions with the charity MIND as I felt I was not getting better and feeling anxiety and depression, and felt I needed a bit more support than just medication. (And came a cross a few comments saying fibromyalgia in mind, so thought what the heck give it a go). I have been to 3 sessions and do feel helping. I wanted to get my confidence back up and stop feeling so anxious and I think the sessions have really helped me, (especially to come to terms with having an illness and not imagining it), not with tiredness or pain, but with mindfulness and that seems to help. It also gets me out of house and gain i ng confidence in my socialising skills again, as I was shutting myself away due to moaning about pain,"I can't do that, can't go there," etc.

    Wishing you pain free days.

    Carol x

  • sames as,,i really dont know myself anymore ,i feel like i have to put this face on everyday ,but when you think about it if we did'nt put that face on i think that would say we have really givan up ,im not sure if im ready for that just yet ,im hoping that they will find some sort of cure one day ,lets hope they do and sooner rather than later suzey X ps do they call fibro a disease ..

  • I don't know but to me it is a disease, it's something that effects me every single day!

  • ok ,i didnt know what to call it ,thanks for that suzey X

  • Hi hun, I.m not sure how you manage gymn exercise with fibro!!! There are better ways of exercise if you need it, I wouldnt advise doing any during a tired or fatigue period that will make you worse..Your g.,p should forward you to a specialist physio who will advise on what your body needs, tonight I will go to hydro pool, do my routine then have a short swim after, its warm water that is like stepping into a warm bath, my physio is also trying some acupuncture on my cocxy area and it is relieving the pain so far. Pills alone are not always the answer, I have changed over to high protein foods and loads of fish, I avoid red meat and changed to chicken, al my food needs to be liquidised to get it down but it tastes just as good!

  • I've got an appointment at the end of the week for acupuncture but all my doc has said is to take amitryptiline or however you spell it! Feel like I've had no support from them!

  • Hi _KM1996 I'm sorry you are feeling like this my friend & to be so young & feel this way must be exasperating for you. Have you been refered to a pain clinic ?. Have you talked to your gp about how you feel because there are lots of options to help you manage pain, acupuncture helps a lot of people, hydrotherapy is very good for Fibro, gentle excersizes, yoga stretching & meditation helps, breathing excerizes can help with sleep.

    It is vital to your health when you have fibromyalgia to pace yourself and this is extremely difficult to do if you work, well it's difficult anyway because our mind wants to do all the things we would normally do but our bodies don't. You should maybe have a look at the Spoon Theory, it is very useful in understanding how to pace yourself & a lot of members say it's very helpful in their daily struggle.

    I do really hope you can get some relief from it all my friend but I would deffo go back to GP & tell him exactly what you have said here.

    Peace, luv n light

    Jan xx

  • Thank you Jan, I'll look up the spoon theory and make an appointment at the go xx

  • Wow good on you know wounder your tired, I am supprised you manage all that.

    Might be an idea to slow down a little bit and let your body catch up.

  • I don't want to have to change my life because of fibro, I don't want it to take over!

  • So glad for you take my hat off to you. all I know is I wish I had your strength.👍

  • Hi, I know exactly how your feeling. I work part time and have a daughter to look after and feel there is no support for me at the moment. I find I go to work, come home, make sure my daughter is OK and go to bed for a very painfully disruptive sleep which doesn't help. Whilst at work, I put a brave face on but really I'm struggling with pain and fatigue but can't afford to be off work. I try to exercise as they say energy makes energy but find it makes me worst. I'm having a rough episode at the moment and went to the Dr's this morning to be told continue with amertripline and pain killers like that really helping at the moment. I'm just constantly tired and in pain and feel like crying at the moment.

  • If oh need to cry then have a good cry, if there's anything I've learnt from this then it's that cry when you need to!

  • Hi _KM1996 , I think a lot on h e re know your feeling, hun.It gets very old and to me the ones we think would/should get it have no idea!!! I do wish you the very best. Peck.🐤

  • I feel the same.

  • I totally get where you're coming from but I found when I finally started to let a few things go and paced myself more I found it a bit easier to cope with. It's still hard. I had to give up my studying which I'd loved and I also had to give up going to the gym, but I no longer feel quite so exhausted as I did. I'm not saying you have to give up all the things you love but maybe you have to realise that sometimes you have to slow down and pace yourself on the days the fibro is really hitting you. I also don't dress it up anymore. I used to just smile and say I'm okay. I don't any more and I tell my friends and family when I'm having a bad day. Get back to your GP - there may be other medications you can try to help. If it's pain then there are a plethora of painkillers you can try - from NSAIDs to muscle relaxers and anti-depressants. Not sure about the tiredness bit though - that's the biggest one for me - some days it feels as if I've run a marathon. One thing for sure is something I learned from the good people on here - support is vital. You have to stop hiding how you feel and battling through it - it doesn't work. Take care and I hope you get some help/answers x

  • Thank you very much x

  • Hi _KM1996

    I really am so truly sorry to read of how you are feeling, and I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • I was young once. With Fibro undiagnosed for years. I can advise what I might try second time around if I had hindsight. Only you can decide what is good for you though.

    Put aside any shame or embarassment about your condition and how you feel your body and mind is failing you. It is not your fault. Take the slight advantage of knowing you have an actual condition and tell your tutors about your diagnosis. Tell them you have a chronic pain condition, that it is poorly understood and thus, currently poorly managed. There is no cure. Explain how it fluctuates affecting you physically and mentally and how at times, it leaves you wondering if your brain just turned to custard. Explain that every medication has it's side effects and doesn't necessarily make life or study easier. There is no magic bullet that works for all. Tell them how you feel about medication ie. Maybe you don't want to have to rely on damaging medication when it is barely taking the edge off and curing nothing? You have a long life ahead and you don't want to ruin that, for the sake of possibly slightly better grades now.

    Then if you can, carry on living your life. Enjoy your studies, enjoy your friends and social life, and carry on with the gym and swimming and keeping fit, with the caveat, don't push too hard. You want to be fit, not frazzled! Accept that sometimes you will need to rest. Always find time to do the things you love. If you find your happiness goes missing, stop for a while to reassess things. Unhappiness is damaging and will make your fibro worse.

    If your marks suffer, then so be it. There is no shame in that. You have a tough challenge just with Fibro, don't beat yourself furthur if you cant do everything perfectly. Always keep talking to your tutors so they can understand your situation and can help you.

    Keep up to date with current research. Both allopathic and alternative. Each can have merit. You need to know what you are dealing with with this condition. Knowledge is power. You could read up about Probiotics, b12 deficiency, and the current alternative ideas for treating fibro. If you have had anti-biotics or even a spot of DnV, Norovirus and the like in the past, you might have lost your good tummy bacteria. Poor digestion=poor nutrition and nutrient take up. If you let that get chronic, knows which of our systems will suffer? Maybe, in the end, all of them? It is somewhere to look.

    If you had no tummy you wouldn't be surprised if you struggled to get your nutrition and got sick. Your good bacteria is also an essential part of your digestive system but sadly they seem to be ignored, yet they can so easily go missing. My wish is that one day everyone will be told of their importance and supplimenting properly after illness will be the norm.

    You may be lucky, decide your doc has the answer for you after all, and that would be great, but many don't and the side effects of the meds or long term effects of meds cause them furthur distress resulting in having to wean themselves off them again. This condition is so unpredicatable. You need to accept that. You have to do what is right for you.

    You can live well with this condition. You need to live healthily though, because your body needs all the help it can get to stay well. I think where it is harder, is when we collect other conditions too. We owe it to ourselves to look after our physical and mental health and check out carefully any new symptoms and attend promptly to these and any injuries too. I think we are more easily damaged, as we can struggle to heal.

    You only need to be as good as you can be. That is not the same as being as good or 'better' than others. Life is better if you can be yourself, as it is so much easier then to find where you fit in the world and be useful. I wish I had understood that years ago. With no diagnosis for so long, I couldn't accept my limitations and neither could others make allowances. Best of luck with your studies.

  • Thank you so much for your reply Al10, I'm sure that with in time I will be able to come to terms with it and do all the things you mentioned! xx

  • I know how you feel. I am in the same boat. Pain, exhaustion and stress. I used to take pride in my home and in my work. Now I worry everyday about losing my job. I used to be active, now I'm slightly overweight. I feel so exhausted and 'out of sync' at work. I work in a very young and male industry and am simply not comfortable going to my young boss to let him know that I am in pain, exhausted and unable to concentrate. He may just turn around and tell me that I am unfit for the job. I think it is legal to sack someone for being physically unfit. At home I despair that I'm not giving my two young daughters the time, energy and care they deserve. Taking it one day at a time.

  • I think that's all that can be done! Just don't be scared to tell people how you feel, remember it isn't your fault you feel the way you do!

  • Hugs hun. It's very debilitating feeling like we do. Keep strong.

  • Thank you, you too!

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