newly diagnosed, questions

John C

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I have definitely questioned whether or not I'm just being lazy. I tried to work through it and do whatever I could so that I could prove I wasn't just lazy but then I would be in so much pain and fatigue that I wouldn't be able to do anything for a few days.
I'm going through a tough time right now with the pain and fatigue. Couldn't get out of bed without my whole body hurting and so fatigued that I didn't want to. My hand is shaking as I type this. I also moan a lot. I definitely know what it's like to take a shower and dry off and it hurts and fatigues me so much that I'm done for half the day. I wish there was something I could do to make it better but I realize it has to run it's course. I've given up on doctors being able to help or care. I'm not sure if I'm making sense but I thought knowing you/me are not alone in this so I would share where I'm at today. We're not lazy rather in pain and fatigued.
 

JayCS

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I'm going through a tough time right now with the pain and fatigue. Couldn't get out of bed without my whole body hurting and so fatigued that I didn't want to.
Oh dear, that sounds bad. Like in my first half year where I felt obliged to "work" thru all the meds & other treatments docs were trying out on me. Not even rest was enough then. And that meant it took longer to learn how to pace myself (some meds & supps dulling my brain).
I prefer moving on out of bed tho, as I hurt more in bed, whether lying, half-sitting or sitting, and don't want circulation etc. to suffer, so I don't necessarily put my day clothes on before midday, but I do "get up" and take up the comfyest twist-stretching positions I've developed. I need to switch postures, positions and tasks regularly, and that's all harder in bed. Also really bad for my sleep hygiene - no fun in "going to bed - and maybe some sleep - at last" if I've been there half the day anyway. When I'm awake at night I get up and do something to or until I get tired, that works better for me and is more fun.
 

sweetkamie20

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I remember you saying this, but somehow your next posts slipped by me (me by? ah, dunno...).

Yep, approaching 900 daily posts now... (Via my profile.)

Hmm, we've probably gone into this somewhere else now? Yep, GABA is my mainstay. Best starting point is Trudy Scott's blog, e.g. her amino acid "questionnaire" = symptom list. Or my old posts or ask.
I went through all her stuff before and got aminos. Used GABA - at night is good. During the day makes me pass out (not surprising). Amino complex is helpful, too.

I took a break from everything yesterday because something sent me into an oh $*%# flare. It was severe ๐Ÿฅต started to panic cuz it was an 8/10 so fast! I can't help but think about MCAS or something else...lots of big words on The MCAS questionnaire but after looking up more of them I'm like, huh. Maybe yes...
 

sweetkamie20

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I have definitely questioned whether or not I'm just being lazy. I tried to work through it and do whatever I could so that I could prove I wasn't just lazy but then I would be in so much pain and fatigue that I wouldn't be able to do anything for a few days.
Somehow I missed your reply! Thanks so much for sharing this with me.

Fearing laziness has led me naively into the pit of torment many times. And sometimes the cost is 3 days ๐Ÿ˜’. I did have a 6 week flare once which is what forced me to find out what's causing this so I am more respectful of the monster now.

What if really overdoing leads to really long flares?
I'm going through a tough time right now with the pain and fatigue. Couldn't get out of bed without my whole body hurting and so fatigued that I didn't want to. My hand is shaking as I type this. I also moan a lot.
I'm so sorry you are/were in this flare right now ๐Ÿ˜ฅ๐Ÿ˜ฅ๐Ÿ˜ฅ I'm glad you are able to check in here because I think it's really helped me get through bad times and I'm hoping you, too. How are you feeling today?
I definitely know what it's like to take a shower and dry off and it hurts and fatigues me so much that I'm done for half the day.
Yup. The shower was the only thing that happened that day! And it suuuucked.
I wish there was something I could do to make it better but I realize it has to run it's course. I've given up on doctors being able to help or care.
How long is the course usually?
I'm not sure if I'm making sense but I thought knowing you/me are not alone in this so I would share where I'm at today. We're not lazy rather in pain and fatigued.
Makes nothing but sense. The fibro has an amazing way of making me fear Im lazy/guilting me into working too hard and then dumping me into a flare. Insidious.

But we do outsmart it when we listen to our body and slow down. I'm learning it is the easiest way.

Please update us when you can. Choosing the option to reply with quote I think will alert me best. I don't want to miss out on your update.

Thinking of you-
 

JayCS

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Somehow I missed your reply! -... - sorry you are/were in this flare right now
No worry, @John C wrote that this morning... :cool:
What if really overdoing leads to really long flares?
Well, maybe "my life" = apparently "really overdoing it" caused my continual full flare / the severity since Dec19... which it appears I won't get out again, be lucky to get out of the jab-MCAS-flare...
Also I'm still recovering from 5 hours (1h train there and 1h back) to an allergist on June 10th... Wouldn't've thought either possible.
The fibro has an amazing way of making me fear Im lazy/guilting me into working too hard and then dumping me into a flare. Insidious.
Waaaaaiiiit, kamie: That fear's not fibro. Fibro is reminding us we're only human with limited capacity. That's our mindset wrongly believing we have to prove ourselves, we have to justify our existence, we have to give give give, do do do, deliver deliver deliver... otherwise we won't be loved for what we are, forgetting that we are Forgiven, Justified and Loved or whatever way we want to put that.
That doesn't mean we have to now regret - we didn't know, and others get away with going full throttle - which challenged us to do the same. Praps we did know a bit - my wife always told me to slow down and stop doing so much for others. And praps we should regret a bit. But I don't really. I always thought it was cool to burn out rather than fade away. Now I'm burnt out, but realizing it isn't the quick bitter end I thought it to be, it's a new beginning to come to where I was meant to be, focus on what's really important, to realize what I'd kept thinking I don't need to fully realize, I can do it all relying on mainly my own strength. And maybe it's insidious like all suffering is. But it's all "just" the downside of the freedom life has (praps nature too) necessarily. (... "Been Given"). And accepting it will bring us peace, believing we're being tortured will torture us and bring us away from our peace. And believing we're being Tortured does so even more, puts even more sting/Sting into it.
(I hope I put this in a way everyone understands how I mean it, regardless of belief/mindset.)
 
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sweetkamie20

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No worry, @John C wrote that this morning... :cool:
I am bad at details- it says July 15 is the join date. My mistake @John C Glad I didn't miss your post long ๐Ÿ˜
Well, maybe "my life" = apparently "really overdoing it" caused my continual full flare / the severity since Dec19... which it appears I won't get out again, be lucky to get out of the jab-MCAS-flare...
You do have a particularly challenging situation ๐Ÿ˜.

Every persons life is probably some form of "overdoing it". I know you're a lively person now but I've known other lively folks that don't end up in your situation. So, then, the difference is the body of a person (not necessarily the decisions), right?

I am not sure how it all works really. Can really overdoing it trigger really long flares? That's what I wonder about ๐Ÿ˜ฌ.

Though some of us experience more drawbacks from overdoing it, no one is more deserving of the reality than another. We are all living in the paradigm. The more we climb out of the paradigm ("my value is in what I contribute"), the better we fare I think. Some can live in the paradigm and not bear these outcomes.
Also I'm still recovering from 5 hours (1h train there and 1h back) to an allergist on June 10th... Wouldn't've thought either possible.
Ooooooh โ˜น๏ธ that's disappointing.
Waaaaaiiiit, kamie: That fear's not fibro.
What I mean to say is that the physical side effects of fibro are the foundation of the emotional fear of being lazy...does that make sense?
Fibro is reminding us we're only human with limited capacity. That's our mindset wrongly believing we have to prove ourselves, we have to justify our existence, we have to give give give, do do do, deliver deliver deliver... otherwise we won't be loved for what we are, forgetting that we are Forgiven, Justified and Loved or whatever way we want to put that.
Soooooo well said! โค๏ธโค๏ธโค๏ธ.

I look at potential silver linings - immersion in the paradigm of being made to be loved and love - being one of them. I have ideas about the silver linings but I'm not sure which specifically apply to me (not yet, but I do think I will know sometime soon)...
That doesn't mean we have to now regret - we didn't know, and others get away with going full throttle - which challenged us to do the same.
I do regret decisions I make now when I know some choices will be best ๐Ÿ˜…. That regret, though, bears a better hope that I can avoid some pain in the future. It gives me a sense of agency which is the opposite of depression...

I don't even know what there is to regret in the past ๐Ÿ˜‚. Was it getting an infection? All I did was swim in a lake...

Praps we did know a bit - my wife always told me to slow down and stop doing so much for others.
Well, wives and husbands in many homes sound the alarm but few end up here...
I always thought it was cool to burn out rather than fade away.
Thats an interesting perspective!
but realizing it isn't the quick bitter end I thought it to be
So true!
And accepting it will bring us peace,
Definitely true
believing we're being tortured will torture us and bring us away from our peace.
I don't really believe I'm being tortured. It's just hard to express severity of pain without a severe metaphor involving a third party (the fibro) inflicting the pain. Here, where people understand, I don't need to use the term I suppose. Outside of here it seems it could help someone understand...I run out of words sometimes and I'm terrible at choosing metaphors ๐Ÿ˜ฌ. Don't even ask me about parables!!! I still wrestle with those ๐Ÿ˜’

I'm not so good with words in this arena partially cuz i am just starting to reorient my mind and partially cuz i dont have as much ability to think through things.
 

JayCS

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Every persons life is probably some form of "overdoing it". I know you're a lively person now but I've known other lively folks that don't end up in your situation. So, then, the difference is the body of a person (not necessarily the decisions), right?
First, yeah, agreed, I think - my body wasn't strong for what I was doing. Altho here I wasn't on the topic of "Why me?", but on the topic of "overdoing it triggering really long flares". My answering being: I'd say yes, cos I see myself as an example of that - praps my whole life in a certain sense, my jabs, some recent events.
I am not sure how it all works really. Can really overdoing it trigger really long flares? That's what I wonder about ๐Ÿ˜ฌ.
So: Yes. ;-) Dunno about others, but I don't think anyone'd dispute it does so in me. Doesn't mean it's the same for you or John or anyone else tho...
Though some of us experience more drawbacks from overdoing it, no one is more deserving of the reality than another. We are all living in the paradigm. The more we climb out of the paradigm ("my value is in what I contribute"), the better we fare I think. Some can live in the paradigm and not bear these outcomes.
Purrrrr-fect, as I see it. ๐Ÿ˜ธ
Ooooooh โ˜น๏ธ that's disappointing.
Yeah, maybe, altho I'm sort of more amused by the irony of it - I try to get more help and it gets worse - another scar in my face ๐Ÿคบ . The story of my life regarding doctors I spose: Almost all have been really nice to me, but harmed me, hardly any help.
My wife argues I was overdoing it by going by train and should have got someone to drive me.
Yes, she is often right, but I do need to test myself sometimes, and just severely misjudged, especially how long it lasted, - the point I was making/answering about.
What I mean to say is that the physical side effects of fibro are the foundation of the emotional fear of being lazy...does that make sense?
I know what you mean. Lemme think. Something like we wouldn't fear being lazy if it had something visible like a plaster cast or tumour?
Soooooo well said! โค๏ธโค๏ธโค๏ธ.
Ta-daaa! :) Tumbled, fell, got up again, on we go...
silver linings - paradigm of being made to be loved and love - being one of them... not sure which ... apply to me
... regret, ... bears .. hope that I can avoid .. pain in the future ... sense of agency .. opposite of depression...
Yepp! :D
Well, wives and husbands in many homes sound the alarm but few end up here...
Really? I hear more of the alarm that their other half are doing too little rather than too much ๐Ÿ˜„
You're right of course that doing too much doesn't explain it all. Just I was on another line of thought.
I don't really believe I'm being tortured. It's just hard to express severity of pain without a severe metaphor involving a third party (the fibro) inflicting the pain. Here, where people understand, I don't need to use the term I suppose. Outside of here it seems it could help someone understand...
Hehe! Fully agreed that it's good to (be able to) express the severity strongly. And it's maybe not that different to slight continual torture, plus the long-term effect adding to that...
But I prefer to think of the fibro not being a third party and using other images like continual severe flu, wearing a lead suit, feeling on fire inside etc.
I run out of words sometimes and I'm terrible at choosing metaphors ๐Ÿ˜ฌ. Don't even ask me about parables!!! I still wrestle with those ๐Ÿ˜’...
I'm not so good with words in this arena partially cuz i am just starting to reorient my mind and partially cuz i dont have as much ability to think through things.
Welcome to the club, together we're better :cool:
Your stance like mine is to be adamant about it, and with that it'll come quick too.
I was just worried such an expressive word as "insidious" might do to ourselves, but now I'm relieved to hear you didn't mean everything I associate with it. ๐Ÿ˜Œ
 
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sweetkamie20

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First, yeah, agreed, I think - my body wasn't strong for what I was doing. Altho here I wasn't on the topic of "Why me?", but on the topic of "overdoing it triggering really long flares". My answering being: I'd say yes, cos I see myself as an example of that - praps my whole life in a certain sense, my jabs, some recent events.

So: Yes. ;-) Dunno about others, but I don't think anyone'd dispute it does so in me. Doesn't mean it's the same for you or John or anyone else tho...
Thanks for clarifying - I missed connection ๐Ÿคช translation required sometimes ๐Ÿ˜…
Yeah, maybe, altho I'm sort of more amused by the irony of it - I try to get more help and it gets worse - another scar in my face ๐Ÿคบ .
Perhaps irony steals some of the sting? In my case it does. Irony somehow lifts my perspective from ground level ๐Ÿ˜. I have found a lot of irony in my life. Often takes the form unexpected outcomes. Like when I was landscaping. A man was talking to me as I shoveled. I couldn't hear him so I approached him. The slurred words alerted me that he was drunk but one word stood out: bathroom. Suddenly I realized he intended to use my lawn! And he did. Dropped his drawers, broad daylight, and peed. ๐Ÿ˜‚. Oh well.
The story of my life regarding doctors I spose: Almost all have been really nice to me, but harmed me, hardly any help.
I don't think I have enough confidence in docs to keep trying a lot more...
I do need to test myself sometimes
Me too.
I know what you mean. Lemme think. Something like we wouldn't fear being lazy if it had something visible like a plaster cast or tumour?
Exactly. The fibro creates the inability to work harder, then it becomes the mystery reason we fear we are lazy.
Ta-daaa! :) Tumbled, fell, got up again, on we go...
You are gracious, but I deduced that I stumbled ๐Ÿ˜‚. Not that it matters who. Just noticing your graciousness ๐Ÿ˜
But I prefer to think of the fibro not being a third party and using other images like continual severe flu, wearing a lead suit, feeling on fire inside etc.
I've done the lead in the veins, burning under my skin metaphors. Those are good! Got more? I'll take them!
 

JayCS

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metaphors. Those are good! Got more? I'll take them!
"run over by a truck/car/train/rhino/plane..." "been beaten up".
Or to more realistic effect: "literally like when you have just been part of an accident".

These all being clichรฉ/overused show that it's not the metaphor itself, it's the way we build it up to dramatic effect. To show it's not like having a hangover.
Like starting: You know how it is to have a cold? Do you like that? Now imagine you had one 3 days every week? What about the flu? Now imagine you had the flu the 4 other days of the week.
How about for the rest of your life? And this is normal. On top of that you get more piled on...

Another set of ideas that may help is Claudia Marek's "Love Letter to Normals". (Claudia Marek is author of books, partly together with St. Amand, that's the doc who fell in love with guaifenesin...)

Another one for fatigue and can be adapted for pain is Christine Miserandino's Spoon Theory ( - But You Don't Look Sick? support for those with invisible illness or chronic illness). Personally I prefer a sort of "battery" theory, whilst the battery gets older the recharging takes longer and discharging is quicker.

And I developed my many "percentages" from being dissatisfied with the simplicity of the Spoon Theory, using it as a starting point (10 Spoons = 100%) to try to get a handle what is actually a thousandfold more complicated in real life. There it's just considering one type of fatigue, of which I've distinguished 11.... and in my percentages I also pretend it's only one kind... We're sort of living in new dimensions as manifold as the universe... - ah, the drama... ๐Ÿ‘จโ€๐ŸŽค :giggle:

And for a hand-picked bundle of 133+ short texts & images of wisdom, humour and drama you could as said search for "Pics & Memes that visualize fibromyalgia and other invisible chronic pain illnesses" (or something like "pics memes fibromyalgia jaycs" for short) - waiting to be added to if desired, cos there's loads more...
 
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sweetkamie20

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And for a hand-picked bundle of 133+ short texts & images of wisdom, humour and drama you could as said search for "Pics & Memes that visualize fibromyalgia and other invisible chronic pain illnesses" (or something like "pics memes fibromyalgia jaycs" for short) - waiting to be added to if desired, cos there's loads more...
Because I have no shame left, I am happy to say I that I looked up "pics memes fibromyalgia jaycs" because I took you literally ๐Ÿ˜‚. By the way-found some really good ones ๐Ÿ˜
 

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