an explaination of sorts -

[staxxy]

why is being in the cold *such* a big deal for me? Why do the weather changes matter that much to me? What exactly does it mean when I am having a "flare up"?

Comments

[krafen]

Wow, I didn't realize your pain was so severe. I remember you telling me you are often in pain, but I filtered that through my own experiences and didn't imagine the magnitude you describe. I'll keep in mind cold is particularly bad for you. Is too much heat bad as well? When it gets into the 80s, I find the temperature uncomfortable. Does that kind of heat sink in and feel good, or just magnify your pain in a different way?

It is good to be reminded that lack of pain is not the default condition for some people. I feel fortunate that, for me, it is.

Be well.

:) thanks!!

[staxxy]

I am glad to see that this post has had the desired effect for at least *1* person. YAY!! No you *get* it.

and yeah, too much hot is just as bad as too much cold. And it is like a different flavor of pain, just as strong. The pain I feel today is like a broken/shredded/torn sort of pain. The pain I feel in high heat is like an acid/burning/searing sort of pain. Both equally ugly, but slightly different flavors to them. Or, to put it another way, this is a purplish red sort of pain and that is a toxic yellow orange sort of pain. Both make me want to scream and claw my body apart cell by cell though. *sigh* Not that I COULD or WOULD, I just WANT TO. :)

and I am really glad that your default setting is painfree. I wish it was true for ALL Of us. :D

*and* I am being as well as I am able.

Re: :) thanks!!

[vorona]

Wow, that's perfectly descriptive. That's what I've been wording around with, trying to describe to the new doc. The little nauseated stomach in my shoulder is taking a day off along with me. I think it wants to go the museum, where it will feel at home with other surreal items. I've been feeling acid/burning/searing most of this week, and last. Over-reactive.

Re: :) thanks!!

[staxxy]

yeah, I was thinking about that nauseated stomach description you gave. And I have been feeling that in my wrists, ankles, and shoulders. It's like it hurts plus(+) potential for something else. Like it is hanging on the edge waiting for something horrible to happen. Like if you move at ALL you will upset the little cups of hydrochloric acid in there and then it will all just be horrible searing pain with no release for days. *sigh*

And that subconscious anxiety/fear is crippling.

[evaria]

I can't really add much to that so I'll just say that yeah, it sucks.

I've found certain little things that help a bit with some of the problems so that's nice but it's still always there.

I was a very energetic and healthy kid till I was 12-13. I got Mono Really bad when I was 13 and as I like to put it I just never got completely better. I can remember what healthy feels like and this ain't it. It doesn't help that I went through a lot of physical trauma as a kid that has added to the various issues.

It's interesting though, I get a lot of people who think I'm faking it because I don't act like I'm in pain all the time and I keep having to explain that I feel like this all the time, if I didn't get used to it and learn to move on with my life I'd spend my entire waking moments in tears and that's no way to live.

[staxxy]

*heh* my mother's favorite line when I was younger "If you *really* wanted to do it, you would be FINE, you're only like this becaues you don't WANT to do it".

She had gotten it in her head that because I would go and do things I REALLY wanted to do, that I didn't feel bad those times and, therefore, did not feel bad EVER and was just faking it. *rolls eyes* My mother accused me of being a hypochondriac for about 8 years, pretty much every other day. It is kind of a sore spot for me. Granted, she has apologized profusely to me for it now - and she is VERY appreciative of what my life has been like (she came down with FM about 7 years ago). But it means that I am *HIGHLY* intollerant of people treating me like I am *pretending* to be sick - nigh unto violence, as nothing makes me as mad as quickly.

*hugs* It *is* no way to live. Not at all.

[evaria]

I actually had a boyfriend(now ex of course) who accused me of having jealousy issues because I get sick all the time. In his opinion I wasn't realyl sick, I was just faking it so he'd pay more attention to me and not his friends. I broke up with him shortly afterwards and he kept asking me why I didn't want to date him anymore. Sheesh, some people to grow up and realize that not everything in the world is about them.

[staxxy]

Sheesh, some people to grow up and realize that not everything in the world is about them.

hallelujah.

[deadrose]

Hear hear

[staxxy]

actually, they have a semi-regular spa day that a bunch of the local ladies get together to go do. I have trouble with hot tubs though. They tend to get me too hot too fast and that is just as bad for me as too cold. *sigh*

The ulcers - ack. ow. ew.

I am glad you got through the worst of it. I made a community for those of us that don't let the cfs/fm stop us from having LIVES. :) you should check it out.

[corbaegirl]

Yep, fibro and osteoarthritis here. I have quite a collection of gloves that I sometimes wear even in the summer because my hands getting cold will start them cramping and then that sort of works up my arm to my back/neck and then I'm screwed.

I use a wheelchair when I go out shopping and anyplace that I'm going to have to spend a lot of time standing. I used to feel self conscious about that because I CAN walk, it's just that standing for long enough to shop does my back in. And, well, I do a lot of things that someone in a wheel chair shouldn't be able to do, like rapier fighting and working out at the gym. However, I have finally gotten over that, and now do what I have to to ensure that I continue to be able to do those things, which means using the chair. And, anyone who gives me grief (and there have been a few) can just get over themselves.

[assassinpandora]

This is going to sound weird, but this post inspired me to spend money on myself, in celebration of being healthy. I bought myself a new dress at Nordstrom Rack at lunchtime, and if Thanos gives me any crap about it I'm going to blame YOU, Stax!

[staxxy]

woot. Tell him he can talk to the CHEST. BWAHAHAHAHAHAHAHAHAH!!!

YAY NEW DRESS!!!

Is it microfiber?