Re: Re: Fibro research..... what it does not tell you-To Jill

[Guest guest]

Right on girl. Go girl. You are telling it like it is honey. I appreciate

that post.

love and hugs,

Debra V.

jill larion jilllarion@...> wrote:

I have also done extensive research on fibro and only the non

believers say pain meds do not work. Every top fibro specialist will tell you it

is part of the equation in treating pain. The pain is very real. I have never

read anything from a top researcher that the pain is not real. As far as what

causes it, there are still a couple theories, they have NOT conclusively found a

cause. If it really is brain waves that are acting up, it's telling the body to

feel pain, so then it would respond to pain meds. Every control study has those

that respond to a placebo. There are many other conditions that go hand in hand

with fibro like a magnesium and B12 deficiency which causes muscle pain. Many

have low cortisol, thyroid and other hormone deficiencies that can cause fatigue

and pain. Plantar Faciitis, vulvodyna, cystitis, endometriosis, migraines,

neuropathy, TMJ, non cardiac chest pain (costochondritis), sinus headaches and

infections, etc. are common in fibro and can

respond very well to pain meds. Also, amny have latent infections that become

reactivated and causes flu-like symptoms. As far as it being progressive,

research does say that it is not. Mine sure does feel like it is. The only thing

I can think of is that decreased activity creates more problems, and more pain.

Another study that was recently done is that the majority of PWF (people with

fibro) were found to have been very lean and athletic until afflicted with

fibro. Some " dr.'s " believed that PWF had phobias of exercise and the complete

lack of exercise brought on pain. It also questions if PWF really have a low

threshold for pain in general, if it became that way after getting fibro, or if

they have a normal threshold for pain. I know I used to jump horses competively

and had many brutal crashes. I did cross country and stadium jumping. One time

when I was 16, I was thrown from a horse and my braces were ripped off. I've had

my nose broken, had several contusions, was thrown through the jump poles (which

are VERY heavey), have had a horse land on top of me 3 times and was paralyzed

and had a major concusion after one crash. Before fibro, I never took pain meds

even after surgeries (I had many knee and back surgeries from my jumping

career). So I KNOW I at least had a very high

threshold for pain. Also, when I hear someone else who has fibro that is not as

debilitated as I am tell me that they have a higher threshold for pain........I

call BS! People have varying levels of fibro. I know what pain is. Besides my

jumping, I've had 20 surgeries. Insurance companies won't cover you if they know

you do cross country jumping. It's what paralyzed Reeves. It's a

brutal sport and not for pansies, so I really question dr.'s who say PWF have no

tolerence for pain.

Jill

Re: Fibro research..... what it does not tell you

I don't know who did the research, but I can say that they are full

of bs!!! Mine has not only gotten worse, it has gone for happening

in the spring for 2 years, spring and fall for a few years and as the

years have progressed it is now a constant!!!

Wonder who they were doing research on?????

Oh! I can't wait!!! until sometime in May or June when I have an

appointment with my favorite psychiatrist (ever heard of anyone

liking their psychiatrisit???) But I can't find the paper I wrote

the date on!!! Oh, the joys of fibro fog, brain over load!

>

> It also says this is not a progressive illness.... that it will not

get worse with years. It says alot of places I read that it stays

the same or gets better. Not so for me and not so for a few hundred

other people I have talked to. Mine has worsened by at least triple

in the last 3 years or so.

>

> One reason they might say narcotic pain relief is not effective

is because they don't want to say it is. The reason??? this is a

chronic pain condition and it is not always practical to use

narcotics for chornic pain for the obvious reasons of fear

of " addiction " and " dependence " . When I was first diagnosed with

fibro, I asked my doctor for something for pain without taking

narcotics. Advil, Tylenol, Aleve, Aspirin, .... nothing over the

counter would stop the pain anymore. I went on Tramadol. It was

fine for about a year until the pain worsened.

>

> I did not want to go on narcotic pain meds. I found myself

thinking of how important pain relief is to me. Because I will have

this the rest of my life and I really do not enjoy the fact that I

might have to continue to take stronger narcotics for it. It is just

traditionally not a practical thing to do. Narcotics have been

reserved in the past for acute pain such as post operative pain or

broken bones. I will add cancer. No one counted on fibro actually

coming into the picture. And for those that don't need narcotics, I

think that is great. It is wonderful and I am glad you don't need

them. But for me, I have to have the pain relieved to some extent so

I can keep pushing my body to go to work.

>

> love and hugs,

> Debra V.

>

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