newly diagnosed, questions

JayCS

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honestly, anyone sharing any info about their symptoms is cathartic in itself. by hearing from everyone their experiences I find it easier to accept my own for what they are. does that make sense?
Yup. Just seems individual how much. Personally I quickly switch over to wanting to improve. And try not to spoil that catharsis of others by making suggestions. I also now count it as catharsis when people write without specifying "I need any help possible", "I'll try anything" or "what can I do?"
did anyone else avoid admitting to themself how bad things were? did anyone question if they were just lazy or exaggerating how they felt?
I'm wondering if anyone didn't! :cool: Tough job trying to analyze symptoms when we're used to not even look at them. But the way out now is to flick the switch, and not push thru or try to ignore. Helped me to see the reprimanding look of my wife when I asked her: "You mean you don't have some kind of pain all the time, isn't that normal?" (She sees my pain all the time, and thinks I still overdo it too much; tough for her ❤️.)
 

sunkacola

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did anyone else avoid admitting to themself how bad things were? did anyone question if they were just lazy or exaggerating how they felt?
Many people question themselves and are hard on themselves when they cannot do what they used to be able to do. This is, I think, a product of a societal mentality that most western cultures have that equates a person's worth with how much they work or are able to produce, or even how much money they make. A shift away from that way of measuring a person is very helpful.

I have also found that genuine acceptance of what is going on is the first step to learning how best to manage it. Acceptance doesn't mean complacency or approval or apathy, simply it means that you realize the fullness of the truth of the moment and rather than wasting energy denying it or saying it "shouldn't" be happening, energy is spent working out the best ways to live well with it.
 

sweetkamie20

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i am not ready to flip the switch yet :/ i just push through the best i can but it does seem to get worse almost immediately. still i keep pushing. sort of scary because that 6 week flare was horrible and i dont ever want to go through that again. ugh
 

sweetkamie20

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how fortunate that your wife gets it ❤️❤️❤️ i am sort of alone trying to figure it out. I feel a lot of pressure from people to show up for things even if there is no pressure. To be real, events are the most exhausting. I would like to be committed to fewer and often I groan thinking about going. The time/energy/health I have I would rather spend doing things I feel really good about doing. Then I feel bad that I "find a way" to do solitary things I really want to do but sometimes don't find a way to do the things other people want. I suppose if they knew how I was feeling they would want me to stay home. It's just a weird dynamic to never want to commit and to often not go...and then feel bad that I didn't just try to rest-I worked on a project...
 

sweetkamie20

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Sunkacola, I read your info for newcomers post-so amazing! You struck a super positive and super gracious tone. I found it hopeful and real. I was disappointed in some comments on it, but I am betting that in those times when we are looking for validation of a specific experience we might take our frustration out on the wrong person 😔. I love that post. I hope it always stays pinned to the top!
 

JayCS

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i am not ready to flip the switch yet :/ ........................... i dont ever want to go through that again. ugh
Hmm.... :unsure: ;)
I feel a lot of pressure from people to show up for things even if there is no pressure. To be real, events are the most exhausting. ... sometimes don't find a way to do the things other people want. I suppose if they knew how I was feeling they would want me to stay home.
Oh yes... I'm getting cheekier all the time. 😎😏 My body demands it.

A few weeks ago I was keen to take part in a weekend workshop. I said before: 1-2h stints at most, not after 6, not before 10, and no guarantees. OK, it started Friday evening at 7 and I thought maybe I'd manage one hour and I did. That (and the prospect of it all) however smashed up 2 nights in a row, making me unable to take part in any of the rest of it. Maybe still the right thing in hindsight, dunno.

The only long social event I successfully partook in in the last months was meeting a befriended couple at home for 5 hours. The car trip there was an ordeal, so I retired once we were there, and socialized and retired in 30 minute stints. That was pre-MCAS tho..
 
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sunkacola

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Sunkacola, I read your info for newcomers post-so amazing! You struck a super positive and super gracious tone. I found it hopeful and real. I was disappointed in some comments on it, but I am betting that in those times when we are looking for validation of a specific experience we might take our frustration out on the wrong person 😔. I love that post. I hope it always stays pinned to the top!
Thank you! It will stay pinned, no worries.
I understand when you say you are not ready to "flip that switch" yet. It takes a little time to get used to things and to accept it, and for each person change can only happen when it is the right time. You will find, I bet, that the degree to which you can accept what is in this moment, specifically your limitations with fibro, is the degree to which you can have peace of mind and better health. Pushing through is what we are taught to do in western cultures, but it is not the best strategy all of the time and it is counter-productive when you have fibromyalgia. You will work your way toward the management methods that work for you, and we will be here to encourage you.
 

sweetkamie20

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Elementary question but I would like to know 😬 if I rest every time my body is giving me some grief (even when it's just a little) will I find overall I have more energy and time to do things or will I find I spent more time resting and less time feeling really bad?
 

JayCS

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Elementary question but I would like to know 😬 if I rest every time my body is giving me some grief (even when it's just a little) will I find overall I have more energy and time to do things or will I find I spent more time resting and less time feeling really bad?
"Elementary" in the sense of 'basic', not 'simple' or 'easy'. So no "but".... 👐 - it's a valuable question.

Resting soon usually gets our energy back up and the pain/Ache down sooner, so is more effective for both than pushing thru.
Resting "as long as the activity has been" might be OK for starters, but it oversimplifies. I think it's better to get a body feeling for when to stop and how much I might be able to overdo it, and that varies. For practice I think it's good to stop "even when it's just a little" as often as possible. By doing this I used to come into a state where I hardly felt my fibro - on my new level of 35% activity. Whilst if I'd've tried to just go for 40% or 45% of activity, 30 or 60 minutes more per day, I would have quickly ended back up on sick leave again.

The overbearing, continual fatigue that added MCAS is now showing me is probably roughly what happens in ME/CFS. It makes me rest most of the day and often 10 to 20' of activity makes my pain grow from 20% to 50%. That's something I used to avoid. Now it's something I've decided to live with that 40' of TT 🏓 or talking 🗣️ can need 4 or 5 hours of rest and a 1h music gig 1 or 2 days. (Still working at improving of course.) What I probably could get away with Ache-wise now is 15' every 2 hours = 5x a day = 1h15/d. The fatigue now doesn't seem to vary quite as much, it's more the daily amount of "spoons" that varies(??)


It's good to attempt to end the resting too after a time. to see, if we're OK again.
After 40' TT increasing pain to 50% I took a 2h rest, but still felt tired. However hanging up some washing (10'), I just realized that I've got more energy today and can now play music etc.
 
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sunkacola

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Elementary question but I would like to know 😬 if I rest every time my body is giving me some grief (even when it's just a little) will I find overall I have more energy and time to do things or will I find I spent more time resting and less time feeling really bad?
One can only reply with one's own experience on this, really, because we are all so different.
So what you need to do is experiment, and the best way to do that is to write something down. Like: "(date) rested 1/2 hour in afternoon. Felt _____afterward and rest of day was ____"

There re also different kinds of rest. So in the experimentation you ask yourself these:
Is it an actual nap where you fall asleep?
If a nap, did you set an alarm and how did that feel when it woke you up?
Did you rest by sitting down, reading something?
Did you rest by getting on a device?
How long was the rest?

And so on.

Also, the reaction to resting will be different for everyone. For some people it only makes them feel more lethargic, for others it energizes. You just have to find out which is true for you, which could be different under different circumstances.

I cannot actually nap or fall asleep in the daytime, but I rest when my body tells me to, in the way it wants at that time, and for as long as it tells me to, if I am home and able to do that. Also for me rest never means being in front of any kind of screen, which is disruptive to me.
By doing this I am able to get things done and not pay for it with pain or fatigue later or the next day.
 

sweetkamie20

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Thank you, sun. I keep looking for a shortcut to figure my own needs out 😬 But I have heard so many of you say the same thing: each person is different and will find their own way 🙂 i will have to be patient with myself as I make mistakes along the way. I am so grateful to have found a place where I can get solid insight and quality help. Thanks everyone ❤️
 

JayCS

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a shortcut to figure my own needs out 😬
What an enticing thought! Some seem to find one, a med that keeps most things under control or just keeping to the sweet spots. Depends on tolerance of meds/supps/physio, amount of symptoms and co-morbidities, and severity of them, of the FM altogether and of flares. So no chance in my case. Even my best best bet, my GABA, working on 10 areas at once ("pleiotrope") is only 10 drops in the ocean, together with close to 100 methods = 100 drops, making my life determined by that - which however enables me to get a life, at least.... The closest I come to "a" shortcut is after discovering after many trials & errors to immediately decipher some symptoms and know exactly how to get them down quick, especially local pains. So many long roads to find some small shortcuts... 😬 But I'm very thankful at least for them. 🙏 Gives me a feeling of a certain amount of self-determination back. :rolleyes:
 

cermckinney781

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Omg I have been recently dealing with this same symptoms that you are describing. I wake up drenched in sweat my shirt and hair soaked. I’ve had fibromyalgia since 2015 though but this symptom is new like about 2 months or so.
 

cermckinney781

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Elementary question but I would like to know 😬 if I rest every time my body is giving me some grief (even when it's just a little) will I find overall I have more energy and time to do things or will I find I spent more time resting and less time feeling really bad?
I know with myself when I know I have a big event coming up I try to rest the day before and after and it seems to help me. It’s like I have to mentally prepare myself for the event. For instants my daughters prom is on Wednesday, 25 May so what I have to do is take it easy Monday because I know she has a hair appointment Tuesday so that I have enough energy to do everything that needs to be done Wednesday to get her off for her prom for her prom. It’s hard but that’s the way I try to deal with it .
 

fimi

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I think it's great you've found a way to deal with it that works for you. I find pacing myself when I've got things on the To-Do list definitely helps. :)
 
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