why do i feel so guilty for having fibro?

as well as myofacial pain i have fibro,and spondylosis,and really bad pelvic pain,a woman in our village a few yrs older than me has fibro also,why is it she can still work 20 hour a week ,walk about for miles okay, can move all her limbs about ok, and goes horse riding(i am not knocking her she does have fibro as i know she has been diagnosed),when i can i barely walk a few metres and feel basically trapped in my body, someone i know said it is because she hasn't let her fibro take over her life,so now i am at home feeling guilty practically for breathing and i know she is wrong,i haven't given in to fibro(i do have spondylosis as well),but from the sounds of it on here there are other people on here with fibro who also can't do much and can't like myself work,so is it my fault i can't walk far,can't dress myself ,do housework etc,feeling really upset by this and am crying...

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  • She may have Fibro but we all know it affects people in different ways. I wish I could say don't feel guilty as I know we shouldn't but I always do as well.

    I am 45 and like you i can barely breathe, can barely walk and live in dresses I can pull on as apart from being comfy i cant raise my arms to put things on over my head.

    A lot of the pain I can live with but the exhaustion and the pain in my legs so i cant walk makes me feel guilty.

    But I have accepted I cant work no more and i have to be selfish and put myself first now. You need to do the same, stop comparing yourself, as you said you had other illnesses. I bet you didnt get to this point overnight did you? She may feel as bad as you in a few years.

    I don't care what people say positive thinking doesnt always help but learning to live with it and know your limitiations does.

    Hope you feel better about yourself soon. xx

  • Hay hay hay don't let them get to you everyone is differant ok, so yeah she can do all that hah i use crutches permantly fell trapped in my body went through severe ddepression due to thoughts just like yours. Then i thought fcuk them i got enough baggage and pain to deal with i do not need add theirs too. I work but only because work help so much if i had to leave i would not make it out there.

    i am happy to talk if you want to you are not alone in these feeling and there are people worse then us so rather than feel guilty because you can not get dressed be happy you got of bed, break everything down into to task and reward. Get up good, can not get dressed stay in pjs lol.next task get out ofbedroom etc etc .

    if sound like preaching im not i hated when people did that to me. But genuinly i have been where you are and get it ....ranting helps load gets it of your chest then you do not sit and dwell on it making it bigger then it is. I do tjis alllllll the time so the more i say out what my problems the 10 stone lighter ifeel.

    Hope this helps if not delete it lol xxx soft hugs ( sorry about spellings)

  • No Electricjaws dont feel guilty. I was on dx in Feb of this year & I am trying to find kut all I can about this horrible disease.

    Everyone is different I think but my Drs tend not to believe that theory.

    I think some people have a higher pain threshold than others do.

    Good luck to lady you refer to, I wish to god I could do all those things.

    I think you need to listen to your body.

    I know mine has changed dramaticaly these past 4 yrs & has taken me that lenght of time for a dx.

    Now I feel its gonna take me that length of time for Drs to really listen & give me pain relief. I've been weaned of Tramadol as Drs prescibed me it & it clashed with my anti depressants which are venlafaxine & the two should never be used together. I ended up with too much serotonin in my body that made me ill. Now Docs say there is nothing else they can prescribe except exercise, which I'd love to do if I were'nt in pain. There is bound to be more pain relief out there than Tramadol?

    Anyway dont feel guilty as we are all built differently & feel things differently.

    I am just try to get by on a day to day basis & find it very hard most of the time.

    Luv yourself for who you are, no-one knows you like you do!

    Luv & hugs

    Jackie

  • Hi Jackie

    Just spotted this and thought maybe you could ask doctors to try Pregabalin or gabapentin, they have side effects as do lots of other meds, but they may help with the pain!

    I take the pregabalin and it helps me.

    Hope today is not to painful

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

  • Think you're right there Jackie regarding the pain threshold. I definitely think some people have a higher or lower threshold then others.Thats why I sometimes wonder if mine is low when I see other doing more than I can and I think " How". Went I used to work I remember I used to sit on the bottom of the stairs in terrible pain and then I'd summon up enough courage to open the door quickly and get to the bus stop. The B d got me in the end though and finally had to give in.

    As long as I am left to live life my way I will be able to manage, but it is hard.

    I do love myself and know its not my fault.... If people don't understand well that's their problem.

    Cheers everyone.

  • thanks she devil x

  • thanks jackie x

  • Hi electric jaws

    We are all different in how fibro and other illnesses affect us, take no notice of them, good luck to the other lady glad she can do so much, hopefully for her that won't change.

    Take care of you and try not to let guilt and other peoples small minded attitudes get to you.

    Take. Are gentle hugs love Sheena xxxx :-) :-) :-)

  • Hello

    Don't be so hard on yourself, today After the initial stiff body on getting

    Out of bed I felt not to bad just a bit of pain in my back. so how good

    Is this I'm not going to take medication today when I don't have much

    Pain. Also taken the dog out

    So out in the garden a little bit of weeding, and it was a little bit,

    That was a few hours ago,and now I can't move not taken any

    Pain medication yet but getting very near.

    I also work 22 hours how do,I do it well firstly I am a nurse so it's

    Very hard lots of lifting and running about answering bells, I take

    Big amount of pain medication and when I finish my shift at 15.30

    I go home and go to bed, no one notices that I can't walk by the

    End of then shift.

    My point is that we have good days and not so,good. we do

    All fight fibro although there are times when we want to give in

    This lady that does lots of things she may take lots of,medication

    She may not have fibro,,although she has had a diagnosis, doctors

    Get it wrong don't they

    I would say that if she can do all this stuff she has not got fibro you also have other

    Medical conditions

    Dont be so hard on yourself

  • I was like that woman. For 18 of my 22 years with fibro I was fine just occasional flare ups that I could control with codyramol. Then arthritis set in and codyramol stopped working. It's taken me the last 4 years to come to terms that at 47 I am now less than half the woman I was at 43. I had a small breakdown, depression and even now I have accepted my lllness has taken hold of me I read on here of people who can still drive and take dogs for walks and I admit I get such mixed emotions... Jealous, sad , then I feel guilty cos I had 18 ok years with fibro. We are all different . I just take every day at a time now so don't ever feel guilty that you can't do as much as another person with fibro we are all different.

    Helen x

  • Hi JessieLou

    I did ask about them at my last appointment but they are more keen on getting me off medications except for BP & getting me down to lowest dose of venlafaxine which would be 37.5mg form 300. That in itself is goin to be very hard as the withdrawal is horrendous. I have tried before only to have dosage increased. Physciatrist told me I'd be on them all my life. I wish I'd been told that before I took them.

    So Doc says she'll think about Lyrica once she gets me down which in my opinion will be never! The more I think about it the angrier I get.

    Thank you.

    Luv & hugs

    Jackie xx

  • Try not to let it upset you too much, it's possible she only has a mild case of Fibro to contend with whilst you have the addition of spondylosis and myofacial pain to contend with as well.

    My younger sister has fibro as well but although she has her flare ups, she's still able to work. Everyone is different and everyone will be affected differently for some it will be a minor inconvenience but for others it takes over their lives.

    I worked for a while with Fibro, even had my own business, but had to give it up when the OA and Spondylosis decided they were fed up being in the background and ignored. They made their presence felt a couple of years ago when they put in a spectacular appearance & for good measure the Fibro flared up as well. I was becoming totally stressed out with it all which of course just made matters worse. In the end my GP said to me that I should seriously consider giving up work for the sake of my health and eventually I had to agree with her - that was 4 years ago.

    I seriously doubt I could hold down a part-time job let alone a full time one as I don't know from one day to the next if I'm going to be even able to find the energy just to put one foot in front of the other. I used to do a lot of crafty stuff too but my fingers haven't been too good lately - it's really frustrating. When I stopped working I had just started having to use a walking stick and now 4 years on I have my own scooter for going shopping as I'm unable to walk very far at all.

  • sound like me lima,i feel so hopeless at the moment and it isn't as my partner says feeling sorry for myself,i am not a pair of curtains i can't pull myself together, to the outside world i am putting on a show ,but inside i feel i am falling to bits, and i don't know how to put the brakes on the runaway train that is inside me...

  • Hi electricjaws.I no I shouldn't be but I an very sceptical of people who purport to be able to do all those things, like the lady you speak about. I have the same conditions as yourself and somemore which I wont go in to. I know people say it affects them in different ways, but mine has got so bad now that I have issued my family with all their own front door keys to my house because it is so painful to walk to open the front door. Saturday I ran the mop over my kitchen floor and put some washing in machine because it was a lovely afternoon (mind you holding my back whilst I put it in the washer). While mopping floor had to sit down about 4 times and when the washing was finished was in so much pain couldn't take it out to hang in the garden so it went in the drier. So,painkillers out and rest of afternoon and evening on settee. Getting used to this now.Had it since l989 but as you get old things don't get much better. God I sound a miserable old cow,but I'm not really.When I speak to anyone you would never think I was ill. Thank God I have never lost my confidence but unfortunately, have lost my freedom. Oh well, never mind eh!!

  • i know what you mean ,i am so "trapped" in this stupid body,obviously to look at me you would not think i was ill apart from i am barely able to walk more than a few metres, i walk with a stick (rest of time use mobility scooter or partner pushes me in wheelchair, due to fibro and spondylosis, i have a rotar cuff prob in left arm socket which is not ideal as i am left handed, i hate being like this and to be honest don't see the point of carrying on,i have a partner who may miss me(sometimes hes nice to me some of the time verbally abusive) and a hamster that is it ...

  • I think it's because we tend to feel vulnerable that the guilt creeps in. Fibro can make a person feel very negative about themselves especially when our lives change so radically with it. It completely changed me as a person, I went from being a cyclone to acting like a 95 year old virtually over night. How are we expected to come to terms with that easily, it's one heck of a shock.

    I can equate with feeling "trapped", my body stopped being mine almost four years ago. I am getting used to the "revised" version but I am not impressed with it. It's too slow, it has little or no energy, and it doesn't feel as clever as it once did either. In fact I'd like to trade it in for another model! If only!

    We are bound to get fed up, anyone would. I think we're really tough on ourselves generally and we don't realise how strong we are just carrying on with it all. Give yourselves a pat on the back because every day is some sort of victory for us. Take care everyone! :)

  • libbyde, i feel exactly like you ,it is over the last five years i have degenerated,i think also one of the problems comes from medically in the u.k the lack of understanding of the condition,so it is easier for some g.ps to make out it is all in your head so to speak,and you end up feeling stigmatized which is so unhelpful when you already feel at your most confused and vunerable,i have had fibro and myo fascial pain and spondylosis for 13 years,in the beginning i believed all i read about fibro that i was going to be the one to change medical history as i was going to definately beat it,what a wake up call i had from that one!!! in fact i do believe it made the situation worse,over taxing my already overtaxed body,in the end my body wasn't shouting at me it was screaming and has been screaming ever since,like you say i feel like my body is 95 (i am mid 40's) and my mind feels about 30!! it all doesn't help having to fight with the dwp,i have to go to my appeal soon i s'pose they will talk to me as if i've murdered the queen!!scrutinize me for daring to be too ill to work, it would be nice to be able to trade your body for a new one ,or be like certain insects who if they lose a body part grow a new one!!!

  • bless you electricjaws! It seems we have to fight everyone to make ourselves heard. It's hard enough fighting when you are well, but fighting when you have Fibro and other conditions too for some of us, is even harder!

    I understand what you mean when you say you feel like your body is 95, mine feels the same some days. I try not to think too much about the future, I live one day at a time and deal with whatever I feel like at the time. I refuse to be beaten by Fibro, it really won't get the better of me. Hang on in there folks, keep fighting, what we have and feel is real and not in our minds! :)

  • everyone is different and medical conditions effect different people in different ways. I know someone who has had FM much longer than me, is much older too and has other similar health conditions but she is more mobile. none of us should feel guilty. As llong as we are all genuine to ourslelves and to others we have nothing to hide or feel guilty about. just be yourself xx (((hugs)))

  • Well said Fibro! I completely agree with you! :) :D

  • I agree with all the above, however, just as an example of however we can all react differently to different meds. A friend of mine has been taking Tramadol and Venaflaxin for quite some time and I take Tramadol plus Duloxetine which is a snri antidepressant like Venaflaxin as all of these are recommended treatments for Fibro. My friend has had two operations in the last 12 months and had a pre-op assessment for a third and has never been told that she has a problem x

  • my problem is i am so limited for taking meds its not funny, i can't even have morphine when i had my bladder removed a few yrs ago all i got was codeine,i was writhing about in agony because lots of the drugs on offer made mre soooo ill,i can't take tramadol,duloxetine,or diclofenac in large doses,asprin, and any that might help fibro,so i am in so much pain with no relief from it

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