Re: Disappointed and unsure (long reply)

[Guest guest]

ee’s letter was great. This list is a wonderful, international support

group where we can share and know… know a lot of stuff. As she says, we do need

to educate ourselves about these DDs and we need to be proactive in our health

care and rights. I think we must take on the responsibility of educating not

only ourselves, but a Lot of MDs, social workers, bureaucrats, officials, etc,

And the general public as well.

I think we need to collect information about our DDs and put it together into a

research paper that is written in a scholarly way, and to submit it to some of

the journals for the MDs to see. We need to be more recognized as a group with

problems as troublesome to us as are groups with other DDs, Unfortunately, ours

is virtually invisible. We need to start an education process so we can be Seen.

We need to be connected with all the similar groups, so we can share more info &

healing...

There are a few studies that I have conceived, looking at the possible causes. I

want to find people who have been exposed to dangerous chemicals repeatedly, for

example, or to those who have had many surgeries—especially removal of the

tonsils and the appendix. I had chelation for a while, done in a roomful of

people, and there were many there who had neither appendix nor tonsils, and we

were all there because we had pain syndromes, fatigue, allergies, reactions to

environmental pollutants, or something similar.

I would like to write papers about our situation, in order to have more going on

to help us. If we all get together and pool our information, then it can be

processed and documented, cited properly, and send it around. No names, only

correlative information, data.

Think about it. Please let me know if you want to answer some questions. I don’t

want to know anybody’s weight, either, lol, it’s the same thing anyway, skinny

or fat and in between. I want to help all of us, while I can still type.

Aloha from Iris

ee’s letter was great. This list is a wonderful, international support

group where we can share and know… know a lot of stuff. As she says, we do need

to educate ourselves about these DDs and we need to be proactive in our health

care and rights. I think we must take on the responsibility of educating not

only ourselves, but a Lot of MDs, social workers, bureaucrats, officials, etc,

And the general public as well.

I think we need to collect information about our DDs and put it together into a

research paper that is written in a scholarly way, and to submit it to some of

the journals for the MDs to see. We need to be more recognized as a group with

problems as troublesome to us as are groups with other DDs, Unfortunately, ours

is virtually invisible. We need to start an education process so we can be Seen.

There are a few studies that I have conceived, looking at the possible causes. I

want to find people who have been exposed to dangerous chemicals repeatedly, for

example, or to those who have had many surgeries—especially removal of the

tonsils and the appendix. I had chelation for a while, done in a roomful of

people, and there were many there who had neither appendix nor tonsils, and we

were all there because we had pain syndromes, fatigue, allergies, reactions to

environmental pollutants, or something similar.

I want to write papers about our situation, in order to have more going on to

help us. If we all get together and pool our information, then it can be

processed and documented, cited properly, and send it around. No names, only

correlative information, data.

Think about it. Please let me know if you want to answer some questions. I don’t

want to know anybody’s weight, either, lol, it’s the same thing anyway, skinny

or fat and in between. I want to help all of us, while I can still type.

..

..

ee Meade wrote: Dear Em,

The responses you've gotten to your post are on the mark! Be happy that

your bloodwork is normal--you have enough to deal with! Fibromyalgia won't

show up on bloodwork, because it doesn't involve malfunction of organs. It

is more a neurological illness.

I don't think your doctor fully understands Fibromyalgia, and I found some

of his comments a bit sexist. You don't need a boyfriend to feel better!

Sheesh!

There are some excellent websites about Fibromyalgia that will give you a

better understanding of what is going on in your body, and give you more

information to take to your doctor.

You need to be very careful of what sort of exercise program you start.

Your doctor's advice on that topic may not be the best advice to follow.

Understand that one of the main problems and causes of pain in Fibro is

muscle contractions. Therefore, *gentle* stretching may be the best

exercise. Be careful of activities that increase muscle contraction.

I remember reading something on a website about lactic acid buildup, and the

Fibro body processing this differently (?). This seems to account for the

pain that I experience with mild exercise (walking across a parking lot, or

up a flight of stairs, for example).

Is there a physical therapist in your area who has *successful* experience

working with Fibro patients? If so, perhaps your doctor would refer you to

that person for help in designing an exercise program to meet your needs.

I've heard that very gentle Yoga (there are different types--be careful) is

good, and maybe Tai Chi. Someone else wrote to you about water

exercise--I've heard that is good, too.

When I first sought help for my pain 15 years ago, I was told by a

rheumatologist that there was nothing wrong with me physically, but I was

probably depressed. He prescribed anti-depressants, which did not help me.

It's easy for us to be made to feel like fakers and malingerers. We don't

*look* sick or disabled. Our symptoms are diverse (I didn't know that my

irritable bowel, irritable bladder, TMJ, and panic disorder were all part of

the Fibro syndrome). Our symptoms change from moment to moment.

I told my boss a few weeks ago that getting to work on time for me is

difficult because of my symptoms. I told him that I know I might sound like

I'm making excuses--one day I might be having panic attacks, while another I

might be too stiff to move, or having irritable bowel attacks, or even

vomiting. But these are all part of the syndrome. Now he understands my

challenges and is much more patient with me.

You are doing all the right things. You eat well, you take care of

yourself, you watch your weight (weight gain is a symptom, naturally).

> So why do I feel like a complete idiotic hypochondriac failure?

Society tells us that if we take care of ourselves, eat a healthy diet,

exercise, and get plenty of rest, we will be healthy. For years I have been

told that if I got more sleep I wouldn't be tired. Duh!!! The problem is,

if you have Fibro it doesn't *matter* how much sleep you get, or how well

you eat. You're going to feel bad!

Years ago I went to a " lecture " given by my chiropractor's boss on " Chronic

Fatigue. " He basically said, " It's all your fault for not eating right or

sleeping right, blah blah blah. " I left before he was done, feeling very

angry.

We expect our health care givers to know more about illnesses and diseases

than we do--they're the ones who went to school and read the professional

journals.

Unfortunately, in the case of Fibromyalgia/CFS, *we* are all too often more

educated than our health care providers. This needs to change, but it won't

change on its own. We have to seek out or *demand* proper care, not to

mention recognition of our illness. (It wasn't until I got educated about my

illness that I could convince husband and boss to accommodate my needs.)

This list is a wonderful, international support group, where we can share

and learn and *know* that we are not odd or lazy or hypochondriacs or

malingerers. I'm also coming to feel that local support groups are a good

idea--find other people in your area who have Fibro/CFS and get together to

share your pain, frustration, and good ideas.

Find the websites with great information, print them out, and share them

with your doctor. If he shrugs it off, you need to find another doctor

(which may not be easy).

We've made progress over the decades. We now have a diagnosis! But we

don't yet have a comprehensive treatment plan for this illness. We all need

to find out what works for us, and share it with our fellow sufferers. I

think it's too dark in this tunnel to see any light at all, but I can almost

feel a little breeze--like there might be light up ahead.

Em, hang in there! Don't let that turkey get you down!

[We now return you to ee's regularly scheduled brain fog. <G>]

Love,

ee