Re: -Fibro Facts-Other

[Guest guest]

kmabba wrote:

> Some of this battle is mental and not allowing the disease to define

> you or limit you beyond the reasonable physical boundaries.  You have

> to work hard at being as well as possible just like you said and do

> everything you can, using all the tools available to you like the ones

> you listed. 

>

> I am very fortunate to live in NC and therefore have 2 of the greatest

> of the great legendary pioneers to work with. Your advice is the best

> there is, the journal.  Especially if fibro fog is a major issue for

> you because you'll forget your whole life ever existed if you don't. 

>

,

I know I excised longer sentences to reply to, but it is important to

know. You are so right. If you keep a journal or pain diary, you have

it for the doctor, ssi, or any situation that comes along.

My pain specialist demands it along with a functional assessment to

protect him and myself. Drug Enforcement Agency guidelines make it

hard for pain specialists to stay in business and the amount of

physicians doing this is less and less.

The pain diary, functional assessment, and other tools help to find out

things such as times of years,days, months that we may have more pain.

My pain specialist just forwarded me an article on estrogen and pain

control. Just as Vitamin D, estrogen and hormones play a role in pain

intensity.

I had taken myself off my estrogen replacement therapy because of the

scare years ago. Since I recently had heart scans and work up, my

internist said I could go back on it.

I am determined to make sure that I do everything I can to make my pain

less. Nutrition and supplements play a huge role in this, and as you

say, when you get an auto-immune disorder, along with intractable pain,

it makes a ongoing attack against the body.

Age, weight, and body condition effect pain. I am not young anymore

and cannot overcome bouts of disease as I used to, and I seem to pick

up every virus I come in contact with !

I found that fighting is more effective than withdrawing but those

periods of withdrawal teach us to fight! Such a Catch 22. Each time

you do something for yourself, you become empowered so these remarks

are not intended to be harsh.

Find out everything you can, ask questions incessantly, and when you do

document something, show your doctor. Be truthful, put down what you

are feeling.

I look like I am not in pain unless you take my blood pressure or look

in my eyes. Some medical personnel do not have this skill to assess

pain patients.

They look at a well dressed, make up, and someone who articulates as

someone who is faking. This is not true. I do have my days I complain

some and If I do, my pain level is 10 plus. Some medical personnel are

so concerned with getting their feelings hurt, they do not realize the

patient in pain are sometimes the ones cussing up a storm and well

dressed.

We have many medical personnel in this group and they know what I am

talking about. Sometimes, dying patients feel the only dignity they

have is the ability to dress nice and put their make up on. How many

times have you seen a medical personnel say, " I don't know what their

problem is " .

Well, they hurt and cannot control it. That same person out of pain

would be the one that would go to the end of the earth for you.

So, if you have it written and well described, it is easier to

understand. We have done a fun topic of describing our pain besides

the old adages of burning, stabbing, gnawing etc.

Descriptions of I feel like a porcupine with the needles going inside,

being beat up with a base ball bat with the bruises not showing,

someone put gasoline on me and set me on fire, and some more colorful

ones. I one time told a physician about my pinched nerve, imagine

someone placing a clothes pin on your private part and you cannot take

it off,or having a knife stuck in your hip and having to sit on it

about my SI injury, that's how it hurts. He was very hard to reach so

I became more descriptive. He understood then.

As you say, you must become your self advocate and there are many

resources out there. Becoming a member of this group has helped me

through my toughest times as there are people who understand and will

encourage you. I am having to find another pain specialist as my

insurance is not paying, so you guys keep me in your thoughts.

I am going to have to call back the practice who has for my medical

records and ask them if I can make an appointment. This is how hard it

is to find a pain specialist in our area. I cannot see traveling three

hours and paying over two hundred and fifty dollars a month instead of

twelve anymore. We are self paying to get our son through college.

I know there are others out there in worse situations but I know I will

have to walk that line of being ever so nice but insistent on following

up without offending office personnel.

It is a reality that shouldn't be. It should be that the office

personnel follow up, medical personnel understand pain, and that we are

not overcharged. Reality bites !

Bennie