Re: (Long) Letter to the Healthy World Annie

[Guest guest]

Annie:

This was great - thank you for sharing this with us.

I have had fibromyalgia for a few years now, and also

RA, OA, and Raynaud's, and I have not seen fibro

explained so well before. I think that, even though

my family has been going through this with me for the

past few years, they could get something out of

reading this too, so I will be printing it out for

them. Sometimes it is easier to get them to read

something, take it in on their own speed, and I think

this will really help. I loved it.

Kathe in CA

--- Annie <ahightower@...> wrote:

> This is the letter I gave to freinds and family that

> treated me like

> dirt when i told them I was sick. I got this from

> www.fms-help.com

>

>

>

> If you were born with healthy genes, you may know me

> but you don't

> understand me. I was not as lucky as you. I

> inherited the

> predisposition to chronic pain, fatigue and

> forgetfulness. I was

> diagnosed with fibromyalgia (FMS) after months,

> years or even

> decades of mysterious physical and emotional

> problems. Because you

> didn't know how sick I was, you called me lazy, a

> malingerer, or

> simply ridiculous. If you have the time to read on,

> I would like to

> help you understand how different I am from you.

>

> WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

>

> 1. FMS is not the newest fad disease. In fact, it

> isn't a disease at

> all, and it isn't even new. In 1815, a surgeon at

> the University of

> Edenburgh, Balfour, described fibromyalgia.

> Over the years,

> it has been known as chronic rheumatism, myalgia and

> fibrositis.

> Unlike diseases, syndromes do not have a known

> cause, but they do

> have a specific set of signs and symptoms which,

> unfortunately for

> the patient, take place together. Rheumatoid

> arthritis and lupus are

> also syndromes.

>

> 2. The many physical and emotional problems

> associated with FMS are

> not psychological in origin. This is not an " all in

> your head "

> disorder. In 1987, the American Medical Association

> recognized FMS

> as a true physical illness and major cause of

> disability.

>

> 3. Syndromes strike life-long athletes as viciously

> as they do couch

> potatoes. They can be disabling and depressing,

> interfering with

> even the simplest activities of daily life.

>

> WHAT YOU SHOULD KNOW ABOUT ME

>

> 1. My pain - My pain is not your pain. It is not

> caused by

> inflammation. Taking your arthritis medication will

> not help me. I

> can not work my pain out or shake it off. It is not

> even a pain that

> stays put. Today it is in my shoulder, but tomorrow

> it may be in my

> foot or gone. My pain is believed to be caused by

> improper signals

> sent to the brain, possibly due to sleep disorders.

> It is not well

> understood, but it is real.

>

> 2. My fatigue - I am not merely tired. I am often in

> a severe state

> of exhaustion. I may want to participate in physical

> activities, but

> I can't. Please do not take this personally. If you

> saw me shopping

> in the mall yesterday, but I can't help you with

> yard work today, it

> isn't because I don't want to. I am, most likely,

> paying the price

> for stressing my muscles beyond their capability.

>

> 3. My forgetfulness - Those of us who suffer from it

> call it

> fibrofog. I may not remember your name, but I do

> remember you. I may

> not remember what I promised to do for you, even

> though you told me

> just seconds ago. My problem has nothing to do with

> my age but may

> be related to sleep deprivation. I do not have a

> selective memory.

> On some days, I just don't have any short-term

> memory at all.

>

> 4. My clumsiness - If I step on your toes or run

> into you five times

> in a crowd, I am not purposely targeting you. I do

> not have the

> muscle control for that. If you are behind me on the

> stairs, please

> be patient. These days, I take life and stairwells

> one step at a

> time.

>

> 5. My sensitivities - I just can't stand it! " It "

> could be any

> number of things: bright sunlight, loud or

> high-pitched noises,

> odors. FMS has been called the " aggravating

> everything disorder. " So

> don't make me open the drapes or listen to your

> child scream. I

> really can't stand it.

>

> 6. My intolerance - I can't stand heat, either. Or

> humidity. If I am

> a man, I sweat...profusely. If I am a lady, I

> perspire. Both are

> equally embarrassing, so please don't feel compelled

> to point this

> shortcoming out to me. I know. And don't be

> surprised if I shake

> uncontrollably when it's cold. I don't tolerate

> cold, either. My

> internal thermostat is broken, and nobody knows how

> to fix it.

>

> 7. My depression - Yes, there are days when I would

> rather stay in

> bed or in the house or die. I have lost count of how

> many of Dr.

> Kevorkian's patients suffered from FMS as well as

> other related

> illnesses. Severe, unrelenting pain can cause

> depression. Your

> sincere concern and understanding can pull me back

> from the brink.

> Your snide remarks can tip me over the edge.

>

> 8. My stress - My body does not handle stress well.

> If I have to

> give up my job, work part time, or handle my

> responsibilities from

> home, I'm not lazy. Everyday stresses make my

> symptoms worse and can

> incapacitate me completely.

>

> 9. My weight - I may be fat or I may be skinny.

> Either way, it is

> not by choice. My body is not your body. My appestat

> is broken, and

> nobody can tell me how to fix it.

>

> 10. My need for therapy - If I get a massage every

> week, don't envy

> me. My massage is not your massage. Consider how a

> massage would

> feel if that charley horse you had in your leg last

> week was all

> over your body. Massaging it out was very painful,

> but it had to be

> done. My body is knot-filled. If I can stand the

> pain, regular

> massage can help, at least temporarily.

>

> 11. My good days - If you see me smiling and

> functioning normally,

> don't assume I am well. I suffer from a chronic pain

> and fatigue

> illness with no cure. I can have my good days or

> weeks or even

> months. In fact, the good days are what keep me

> going.

>

> 12. My uniqueness - Even those who suffer from FMS

> are not alike.

> That means I may not have all of the problems

> mentioned above. I do

> have pain above and below the waist and on both

> sides of my body

> which has lasted for a very long time. I may have

> migraines or hip

> pain or shoulder pain or knee pain, but I do not

> have exactly the

> same pain as anyone else.

>

> I hope that this helps you understand me, but if you

> still doubt my

> pain, your local bookstore, library and the internet

> have many good

> books and articles on fibromyalgia.

>

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

You're very welcome Kathe!

I thought it was a nice letter. I have found it on several fibro sites

since and I think that all patients diagnosed should be given one so

they can make copies to give to family members.

I have fatigue and Raynaud's and a bunch of other junk but it

describe's me to a " T " I think.

Annie