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Marvis

Distinguished member
Joined
Jan 28, 2017
Messages
150
Reason
DX FIBRO
Diagnosis
05/2016
Country
CA
State
ON
Do any of you struggle with self doubt around your own illness?? It's bad enough that we have to fight the stigma of an invisible illness, but I find myself playing mind tricks sometimes. For example, just before Christmas I started Effexor, and whether it was the drug or just that the weather was nice and dry and stable, I felt like my old self for about 3 weeks. I convinced myself, unconconsciously, that I was better. I ran around like a maniac, started making plans for things I would do now that I had more energy and less pain, and really convinced myself i was better. I did it again on the weekend. I went out with my husband for an over night date on Friday. I took extra Motrin because I was fighting a headache. I did a bit of walking, went out for a late dinner, even managed to drink wine and walk the 4 blocks back to hotel and felt fine. Woke up at 1AM and thought - maybe I'm not really sick, maybe I just need to get moving and make myself do things and have a more positive attitude. Doh! Woke up an hour later to electric shocks in my feet. Another hour late to cramps creeping up my legs. Two days later I'm still paying for it. Totally worth it, but jeez, why do I keep deluding myself? Does anyone else do this?:rolleyes:
 
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Re: self doubt

Yeah I do this too! I'm very independent & don't want to waste time not doing things when I'm feeling good but end up taking 2 steps forward & 10 steps back! I'll never learn lol.
 
I sometimes think of it like depression. When the dark cloud is overhead there's no denying it's a tangible affliction. However, on the good and great days that it's not around one wonders if it ever really existed. We do tend to have short term memory when things are going well. At least you were able to move forward and enjoy the day when everything was so well, instead of worrying about when it would change for the worse. One can worry so much as to not enjoy the good days to their fullest, so good for you.
 
I hear exactly what your saying! unfortunately when you have gone from being able to carry out any activities to suddenly being diagnosed with this and having to alter your daily routine its fairly normal that when you experience bursts of energy you take advantage of it!. I find myself sometimes thinking im super women and franticly catching up on the grocery shopping, house cleaning or with friends and yes what goes up must come down (i always forget this). however i think its all worth it. Have to enjoy yourself when you can and catch up for the days when you cant. guess im guilty of this also :)
 
I am also exactly the same. Every other day I will have an ok day, and a few hours of 'feeling quite healthy and happy'. That hour I start to doubt my diagnosis, question myself whether I am exaggerating my symptoms etc. I also feel guilty, telling myself 'see, you can go out for a walk and laugh at jokes'. But then, almost always within just a few hours, the crash comes and we all know how that goes, the crippling fatigue, aches and pains. I can't seem to stop the cycle.

It also does not help that all the other people I know in real life (ex-workplace) who were diagnosed with fibro were able to look and act 'healthy'. They rarely called in sick, they all had kids/partner and a home to take care of, looked immaculate in their professional office clothes, perfect make up, perfect hair, they'd go on holidays, travel around the world, post happy facebook photos etc. And there I was, barely able to get out of bed, only being able to wear sneakers to work (and switch to ugly flats at work), despite being quite vain, I had no energy for my make up or hair, a holiday is a time spent in bed etc. So I still compare my life to theirs and feel weak.

This forum helps, knowing I am not the only one.
 
Very much so. It's crazy but every time I leave the Dr office I feel validated. My inside voice says "See? You ARE sick". Who wants to be sick? It's a catch 22.... On the one hand you hate being sick but on the other hand, it's a relief to be validated the multiple symptoms of Fibro are not imagined.
 
I lately have been feeling this way. I saw my rheumatologist the other day and she changed my medication again. Everytime this happens for a few days I feel back to my old self thinking of the endless possibilities and becoming excited about the future then bang the electric spasms occur in my feet and hands and the heavy feeling of muscles and no energy. Chronic tiredness sets in and I can't wake in the morning without water running from my eyes while I constantly yawn and take nothing in. I have learnt now that this is never going to last but I enjoy the experience while it does, accepting that chronic sleep will creep in soon.
 
Oh wow i soo agree with all this..on my good days i used to think how come i cant push through and do this every day..maybe i dont try hard enough or maybe its not as bad as im saying ..then bam a few hours or days later i can barely stand up long enough to brush my teeth.....then i think how does this happen...i know ive done a bit of walking..out and about for an hour or two with family or done some house work which btw I ve sooo enjoyed it feels like youre in heaven doing these normal activities.....but i havent even done half of what ii would pre fibro and then your body jusy dies like a flat battery and riddled with pain.

I think we all feel the same to varying degrees...and i think it makes it hard for others to understand when even we doubt ourselves on our good days.

Also Vickythecat, I think there are many levels of fibro...i have a friend who holidays, drives fairly long distances paints large canvasses and only gets fatigued and mild pain..whereas many of us struggle to walk and even talking causes pain and weakness ..so huge variant...its hard for the more afflicted to be validated when some peoples idea of fibro is just a few extra aches and pains and a little more tired.

Dont beat yourself up or compare ...we are all individuals doing our best.
 
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Thanks all. Nice to know I'm not alone. I feel crazy sometimes!! lol. I think some of it is guilt -- I want to be that bright, energetic, helpful person and can't be anymore. So whenever there's a glimmer of energy, I imagine myself well. And as to levels of fibro, remember to, that we're all diagnosed at different places in our journey. I was only diagnosed two years ago, but I'm pretty sure I've had it since my 20's. So, now at 47, only two years into diagnosis, I'm in really rough shape and declining at a frightening rate. Compare me to someone else only two years in to a fibro diagnosis and I might look like a hot mess comparatively.
 
Yes Marvis i had signs in my late 20s early 30s but was not pain just bad fatigue that came and went away for long spells...i kept thinking i must be over doing it..but lol you cant really over do it in your 30s just going to work in an office and living a normal life looking after your family..another case of am i imagining this..whats wrong with me..oh lets just push on and try and ignore it.

We have had threads before discussing if fibro is progressive..some think it is and generally gets worse as we get older, for others they find coping skills and life is more even with just occasional big flares.
 
I've just assumed it's progressive - unless there's something else going on that we haven't figured out. Just seems like I've always been unwell - with low energy teen, migraines, mono at 20, endometriosis in my 20's and 30's, post partum depression, etc etc. This just feels like a culmination of everything and my body running down. The migraines became chronic daily, the pain steadily increased over the years, things I associated as being part of my 'migraine', like that feverish feeling, body aches, fatigue, began to look like symptoms of something larger.... It just feels like one long path looking back.
 
I don't think you really think your better,I think u just can't beilive you feel so good,and run around trying too be like normal ppl.catching up on anything or everything.its almost like going into shock,can't remember the last time I felt good lol.
 
Thats hit the nail on the head Forgetmenot..it feels so unbelievable when you feel good like youve won the lottery x thousand!

Ive forgotten those days too ...was about 3 years ago when i had good days and could get out and about pretty well for a couple of hours or more.
 
Thank you all so much! I've had fibromyalgia for several years and have always said "it's a very mild case" and it has been, but this past year, I have just completely hit a wall, physically, emotionally and mentally. I have started having an onslaught of medical problems, so much that I am now unable to work. I can't concentrate on anything and I "zone out" completely. There are times that I just sit and stare into space. I know I should get up and do something but I’m truly not able to will myself to move. I've also found myself unable to put my thoughts into words and just completely mix up what I'm trying to say. I can't say I'm glad this is happening to others but I'm thankful to know that it's not just me!
 
I hate that - not being able to get the words out is the worst! I used to be well-spoken with a huge vocabulary. It's very frustrating to have to say 'you know that thing...' and describe its function because I can't find the word.
 
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