Comments | staxxy: an explaination of sorts -

staxxy

an explaination of sorts -

Feb 15, 2005 11:05

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"?

( Your answers are here, if you are interested in them )

Comments 37

icprncs February 15 2005, 19:45:38 UTC

I believe (please correct me if I am mistaken, I would like to know for sure) that for arthritis sufferers that pain is only in the areas the arthritis affects

This is true, for osteoarthritis. (I can't speak about rheumatoid arthritis, which I am grateful about.) I have it bad in both thumbs (as does my mother, who is probably going to need joint replacement), and it's starting to creep into my other fingers, but it's *only* those joints that hurt. But, when it's the hands, that kinda limits a lot of things. Cold = not so good on the pain scale. Cold + wet = lotsa hurt, plus limited mobility. Cold + wet + falling barometer (as in, when it snows, which is one of the reasons I don't like the stuff) = my hands are close to useless. (It's become close to impossible for me to actually write on paper in cold weather--my hands can't take it.)

I know nothing I can say will make it better. When you hurt, you just hurt, and cope as best you can. But explaining it so people understand is good.

staxxy February 15 2005, 19:55:25 UTC

thanks for the heads up on arthritis. I appreciate this knowledge ( ... )

icprncs February 15 2005, 20:10:41 UTC

Yeah, keeping my hands warm helps quite a bit. I have a pair of black spandex "compression" gloves with the fingers cut out (so I can type or write) that I wear regularly in cold weather--I look like a refugee from a Dickens novel. :) They help insulate and support the cold joints. The largest problem the past couple of years has been that I haven't been able to afford to keep my apartment warm enough all the time, so my hands are stiff and sore much of the time. I can't realistically keep my hands under blankets all day long to keep them warm, so I just have to soldier through it. (I also have a chronic injury in my left arm, soft-tissue damage from an old skating accident that didn't get proper treatment, and that can often make the pain in my left hand worse. And guess what, I'm left-handed ( ... )

icprncs February 15 2005, 20:17:08 UTC

Oh, and as a somewhat interesting tangent--don't know if you remember when my kitty-boy had some weird apparently neurological thing going on back in December, but I'm fairly sure now that what he was having was a cold-induced nerve inflammation, similar to what CFS/FM people deal with. His autoimmune condition is similar to rheumatoid arthritis, which I hear is also affected like that by the cold, and this happened to him during one of those near-freezing-for-days snaps we had in December. I actually worried about taking him to his vet appointment this morning, because it meant taking him out in below-freezing temps, but he seems to have done okay.

Thread 7

Yeowch. sg_boobookittie February 15 2005, 19:50:28 UTC

I didn't know sunburns could turn *blue*. Wow.

I have Fibromyalgia. I understand what you are saying when you state that all your nerves are screaming at you at once at the top of their lungs. I so hear that.

I don't have CFS though, but it is very similar to Fibro and I know a few people with it. It truly sucks. I feel your pain, eh, sort of. :) Let me know if you ever need an errand run or something because you are too hurty. I understand and would never accuse you of whining over it. I keep my mouth shut about it these days too and suck it up.

But it just isn't FAIR. *grumbles*

Re: Yeowch. staxxy February 15 2005, 20:23:00 UTC

it is very similar to Fibro. Thank you for the offer. I am pretty good about giving a shout out to my friends list when I need a lift or an activity done, so you may see one sometime. :)

And nope, it isn't fair. But nothing is really. *sigh*

I guess my getting it so YOUNG really made the lack of fairness in life sort of a given for me. I hadn't even reached my prime yet, when I was "cut down".

All we can do is our best. If it isn't good enough for some people, they can fuck the hell off. Because doing your *best* is just that. And you can tell them *I* said so. :D

victorianrose23 February 15 2005, 19:50:56 UTC

I understand. I have degenerative arthritis in my spine as a result of breaking my neck when I was 17. That set off a whole mess of crap that we still don't know exactly what is going on other than I am in a crapload of pain 90% of the time and it waxes and wanes. Of course, I also stopped going to the dr years ago because no one can really help and when you say FM or CFS, people just look at you then treat you like you're a big old baby drama queen whiner.

I'd like them to have to shoulder even half of this, just for a week, so they can get somewhat of an idea what it's like to live with constant pain.

Bitter? Why yes I am tody because it's one of those days for me, plus I'm sick and I just want to go home and work won't let me and I know the longer I sit here, the worse it's going to get and the more miserable I'm going to be.

staxxy February 15 2005, 19:58:28 UTC

I need to do some more research before I send you stuff. I am hoping that the stuff in my muscle rub is safe for non-belly parts of your body. :) It helps me a lot.

and yeah. that is a lot of why I am posting this. It doesn't make me whiney that people don't see my pain, it makes me ANGRY that they treat me like a whiner because I can't do stuff.

*gentle hugs* soon lady, soon you will be able to go home and wrap up tight in soft blankets. :) Or crawl into a bathtub.

dragons_dreams February 15 2005, 19:56:26 UTC

I'm not in pain constantly thank goodness. I have pain often enough that I am grateful when I am free of it. I am sensitive to cold. I hurt more and since I don't produce enough body heat to warm up, I keep my house at 75-80 degrees and usually have to take a hot bath before I can even function.

Have you tried Jin Sjin Jyutsu? It was one of the only things that worked on my back and migraines. Unfortunately, my practitioner moved out of state. I did find a listing for one in Seattle though.

staxxy February 15 2005, 20:27:54 UTC

Have you tried Jin Sjin Jyutsu?

I've never heard of it, or at least not by this name. What is it?

I have done:
-Medicinal Roller Coaster (wheee, it's the parade of drugs!)
-Vitamin therapy (which helps)
-food elimination diets (over and over... once every 8 years. BLEH!)
-Chiropractics
-Massage Therapy
-Yoga
-Meditation
-REiki
-Primal Scream Therapy
-Escapist Therapies (like total emmersion video games, eg.)
-Herbal/Shamanistic therapies (including Chinese herbal medicines)
-Occupational Therapies
-Positive Thinking and Actualization
-Zen
-Accupressure

So, I have no idea if I have tried it. About the only thing I haven't tried is accupuncture. But it is out of my price league currently.

kassiopia13 February 15 2005, 21:31:42 UTC

Not sure if this information helps, but acupuncture is the only thing pretty much that our insurance actually covers. Mostly because they HAVE to. There is a mandate in WA state that determines that insurances HAVE to cover it. Might want to look into that, if you have insurance at the moment.

dragons_dreams February 16 2005, 00:16:14 UTC

Jin Shin Jyutsu, sorry tired typing and not spell checking isn't recommended.

I was thinking about this while I was out and wishing I was home. I realized that I might have sounded like I had a solution, I don't, not really. I assumed that you had most likely tried everything under the sun that you could find to try. It doesn't look like you came across it from your list.

I only know about it because my back was so terrible that my yoga instructor told me that I wasn't able to do yoga and referred me to my old practitioner.

There is a book about it called The Touch of Healing written by Alice Burmeister/Tom Monte. It doesn't have nearly enough information. However, it is a good companion to Jin Shin Jyutsu treatments.

Jsut a thought and I hope that you feel at least a little better soon.

Thread 5

I write more in other people's LJs than I do in my own, because yours is better vorona February 15 2005, 20:04:16 UTC

I just got my official diagnosis. The new doc has added Chronic Fatigue OFFICIALLY to the previous doc's calling it fibromyalgia. I may print out your explanation and hand it to my supervisor so she "gets" why I have doctor's notes for this, and doctor's notes for that, and why I'm "whining" about our glitzy, callously-designed workspace being FREEZING COLD at times and subject to unshaded sun glare. And, why, yes, I'm going to file this with OSHA, and no, I'm not going to be "patient" about it. Even my time off is painful now, because conditions at work exacerbate my flareups. I don't expect pity, but I will defend myself. I'm not having extra patience with things that make this worse. I'm not being "anti-social," I'm not snubbing anyone, and I don't hate people. ARG.

I have a very high pain threshold. I ignore a lot. I'm good at sublimating pain. And this is bad, on a scale of "uh" to "FUCK THIS ( ... )

Re: I write more in other people's LJs than I do in my own, because yours is better staxxy February 15 2005, 20:34:24 UTC

Feel free to print this or link to it. I recommend doing a "cut and Paste" into word and editing out some of the swearing I do, but you have my permission to use this for your purposes. I am probably going to toss it up on the fighters group too, later this afternoon ( ... )

(The comment has been removed)

Re: I write more in other people's LJs than I do in my own, because yours is better staxxy February 15 2005, 21:21:24 UTC

add to that list anyone else you know with these problems. (drop me an email privately for a list that *I* know you know). There are at least 2 more people I can think of you want to add to this list. :)

Thread 8