Cripples of BT, need some serious help.

[butchbird]

Resisted sharing this, but holidays being here and having more time to relax has given me clarity of thought, so I'll crack.

Last spring, me wife started feeling rather bad. Now she'd had pains since I knew her and passing years weren't doing her any good, but till then she was still fit enough to go hiking across rough and steep terrain as a family activity, getting helped by our bastard malamute on the hardest slopes.

Then suddenly she started hurting real bad after her work shifts. Being a cleaning lady (a worker status that is unfortunately considered "independant work" and hence excluded from all "disability wage" programs) might not look like much but scrubbing dirty bathtubs is hard work. She started being unable to sleep due to the pain, then one day my parents call me and tell me that when she came home from work (they were baby sitting our kid), the wife looked "unlike anything they'd seen from her before". Talk with her, says she'll keep keeping on.

Next day, I come back from work, she's crying, standing in front of a chair, holding onto it, unable to move from pain. Now me wife, she ain't one of them sissys. Hard girl, tough girl, used to box in her twentys, lived in the streets for a few rather long spells. A survivor.

Managed to get refered to a clinic by the pharmatian (pain was too evident to ignore), sees a "super nurse" (with the doctor draught in my region of the world, seeing a full blown MD is nearly impossible but yakking about it will bring forth the dreaded "rule number 4).

About 15 years ago, my wife had been diagnosed with...I don't know the english word but a minor form of artrithis. Super-nurse says it's full blown arthrithis. Gives her pills, schedules a check-up with a rhumatologist. Ain't artrithis, its fibromyalgia.

They've tried all kinds of pill cocktails, the only one managing to ease the pain gave her suicidal tendencys and brought back the spectre of alcoolism. Nothing works, she's out of job, out of money. Thank Blake we're not folks used to much luxurys.

So yeah. Stuck with haywire neurons sending accute phantom pain signals all the time with her body actually reacting to it. Probably for the rest of her days.

Recently she had a new spike, some of her articulations actually swolling horribly. Goes to see the super-nurse who's convinced there's real arthrithis in the deal. Sends her back to the rhumatologist for a counter-expertise, but he stands his ground. Gonna run her a few more tests during the holidays in case he'd missed something. All we can do is hope for the best.

We do our best to keep morale up. Ain't always easy. 'Least she's kept occupied with the kids school (which ain't the local school, it's an altetnative program necessiting quite the few hours of volunteering on behalf the parents) and what chores she can do (that end up taking 3x the time it used to). 'Tis quite hard for her to be stuck this way, with a debilitating cripple-like state whithout actually having PHISICAL wounds.

Damned be our weak fleshling bodys and minds.

[rebs]

From what I gather, things are made worse by the fact that a not insignificant amount of doctors believe Fibromyalgia to be a disease that exists only in a patient's head and in the terminology of what they regard as crooked doctors.  I've known people who suffer from this, and I've heard.

[worktroll]

Medicine can, at times, be very conservative.

I was lucky enough to get Chronic Fatigue Syndrome in the early 80s, before it was called that; I got genuine treatment (which did nothing), support, and eventually got better. Once they called it "Yuppie Flu", so many people got ignored.

At the time, their best theory was "You've probably got leprosy for parrots, or something like that. It's not getting a grip on your body, but your body is spending all its energy trying to get rid of it."

[Wrangler]

Sorry to be late chiming in, but I endorsed the surgery and rehab.

You have youth on your side so you'll heal much quicker than some of us older folks. The sooner you do it the better as long as the doctors feel that it's needed. Good luck!

[DOC_Agren]

From what I gather, things are made worse by the fact that a not insignificant amount of doctors believe Fibromyalgia to be a disease that exists only in a patient's head and in the terminology of what they regard as crooked doctors.  I've known people who suffer from this, and I've heard.

also speaking from the input of friends who have it, 1 of the big issues that some doctors and "sciencist" have is that there is no formal diagnostic testing for it.    Some feel it is mostly a psychological issue, as each person responds to it differently to physical problems.  And I know most of the people who have really issue getting doctors to listen are women.

[rebs]

also speaking from the input of friends who have it, 1 of the big issues that some doctors and "sciencist" have is that there is no formal diagnostic testing for it.    Some feel it is mostly a psychological issue, as each person responds to it differently to physical problems.  And I know most of the people who have really issue getting doctors to listen are women.

Indeed.  It seems to affect women most.  And being dismissed so callously by somebody they sought help from is enough to piss me off just reading about it, I can't imagine what it's like to be in their place.

[mechnut450]

It's not getting a grip on your body, but your body is spending all its energy trying to get rid of it."

I can contest to this with my back and legs discomfort( pain, there days I can do almost what I want and by mid day I pushed to hard.  but there also days I feel so bad I don't want to get out of bed.  I can use this weekend as a example.  started off mildly sore and pushed to myself to help with some unpacking, and lifting  by 3 rd hour of our day. I was ready to go crawl in bed and just cry till I crashed.  Woke up the next 2 days barely even able to move and fell many times.  One of the times was not even out the bedroom door 3 steps and down I went hard.   today I was still sore and super stiff but i managed to keep up right ( so far lol) and i only gotten about 2/3 of my to do list for today done on top  of other things I been trying to get done in last few weeks.

[butchbird]

also speaking from the input of friends who have it, 1 of the big issues that some doctors and "sciencist" have is that there is no formal diagnostic testing for it.    Some feel it is mostly a psychological issue, as each person responds to it differently to physical problems.  And I know most of the people who have really issue getting doctors to listen are women.

What I find to be the crazyest about this illness is how different people "contract it". Besides my wife I know another person who has it. In her case its genetic, passed down from her mother. Or so is the best theorie of the experts.

But yes, it is truely distressing how people suffer from hand waving of doctors. While how we got there is a shame, I find that's the big advantage of our super-nurse program (plus, gotta dig the name), They're less "detached" from their patients. While getting basically ignored by the doctor is unfortunately too common, I've never heard of a bad comment on a super-nurse. Heck, in our case, we can only be grateful, and we're more and more tempted to follow her judgement over the specialist's.

From all sorts of pill cocktails to none, and now so much backpain she hurts breathing. What the heck?

 

[Red Pins]

Breathing?  I go to a chiro, nice chap who straightens out a vertebrae that twists or something in my back and hurts like shit.  He just suggested physio to me, says my back is weak and the ribs subluxating (sp) or whatever.

Your friend look into a chiro?  I thought they were just another quack like acupuncture until I needed one.

[guardiandashi]

Breathing?  I go to a chiro, nice chap who straightens out a vertebrae that twists or something in my back and hurts like shit.  He just suggested physio to me, says my back is weak and the ribs subluxating (sp) or whatever.

Your friend look into a chiro?  I thought they were just another quack like acupuncture until I needed one.

chiropractors like any other medical profession you find good and we will say less good ones.  one of the adjustment procedures I personally feel is more of a joke than anything else is when they offer to "adjust" your ears.on the other hand hip, spine, and similar adjustments ... we joked that my friend who is a chiro "hurts you good"

with the acupressure/ acupuncture there is some evidence and theory that it does (can) work I will say that a lot of modern western medicine wants to go with pills and /or surgery as the solution

[butchbird]

Breathing?  I go to a chiro, nice chap who straightens out a vertebrae that twists or something in my back and hurts like shit.  He just suggested physio to me, says my back is weak and the ribs subluxating (sp) or whatever.

Your friend look into a chiro?  I thought they were just another quack like acupuncture until I needed one.

Chiro wouldn't really help. The problem is, as far as medecine can figure it out at this point, mental. At this point, its considered an illness originating in the central nervous system. Brain always thinks you're locked in a torture chamber even though your resting on a comfy chair with a hot tea looking at the snow outsdide.

Physio would be an option, its apparently helpfull, but being canadians we're unfortunately not covered for that and neither do my work insurances help (though they do on medics at least). Apparently, most american insurances cover it, or so we've been told, but the canadian health care system doesn't really take fibromyalgia into account, gotta pay for everything (not that I'm critical of the theory behind our system, but commenting would surely get too close to rule number 4). Might become a possibility if my wife gets accepted on some "wage for the disabled" program.

To give you an idea of how it's a blind spot for our system, one of my wife's friend also has contracted that crap. Single mother, basically told to fend for herself by her doctor, she's had to turn to the black market for morphine to keep going. Father takes in the kids when she's too high on morphine to care for them.

The "wonder medicine" for us is cortisone, but that thing can be real dangerous to some of your organs if your not careful...only take it when you can't do any else.

But on acupuncture, I've had some real good comemnts on it actually for some ailments, but apparently it's one of those "you have to believe in it" options...might be more of a "mental" treatment.

[guardiandashi]

Chiro wouldn't really help. The problem is, as far as medecine can figure it out at this point, mental. At this point, its considered an illness originating in the central nervous system. Brain always thinks you're locked in a torture chamber even though your resting on a comfy chair with a hot tea looking at the snow outsdide.

Physio would be an option, its apparently helpfull, but being canadians we're unfortunately not covered for that and neither do my work insurances help (though they do on medics at least). Apparently, most american insurances cover it, or so we've been told, but the canadian health care system doesn't really take fibromyalgia into account, gotta pay for everything (not that I'm critical of the theory behind our system, but commenting would surely get too close to rule number 4). Might become a possibility if my wife gets accepted on some "wage for the disabled" program.

To give you an idea of how it's a blind spot for our system, one of my wife's friend also has contracted that crap. Single mother, basically told to fend for herself by her doctor, she's had to turn to the black market for morphine to keep going. Father takes in the kids when she's too high on morphine to care for them.

The "wonder medicine" for us is cortisone, but that thing can be real dangerous to some of your organs if your not careful...only take it when you can't do any else.

But on acupuncture, I've had some real good comemnts on it actually for some ailments, but apparently it's one of those "you have to believe in it" options...might be more of a "mental" treatment.

I joined Tai Ji Men this fall, one of the things they do is a "patting" exercise that is functionally self -acupressure with the theory that a lot of disorders are chi blockages or disruptions so you use your palm (which is a chi concentration point) on the body to push good chi energy into the points to disrupt and push out the bad/negative chi

[elf25s]

ok most days i am in a lot of pain but had any one been in so much pain that you tried reheating your hot drink by putting it in a fridge freezer pain?
yah i put it in a freezer closed it then wondered where the hell is the key pad...took me a minute to focus and it hit me its not a microwave...
isnt living in  pain fun? have to admit that was a first for me...