THIS IS THE NEGATIVE IN MY LIFE

**FIBROMYALGIA** ...to you I dedicate this page...

I've had fibromyalgia syndrome, or FMS for short, for over ten years, quite possibly more. FMS is a debilitating, chronic condition. If you were to see me you wouldn't know anything was wrong. Most of the time I'm able to function just like you.

This insidious THING has made my life on earth more like hell. Not only because of the chronic symptoms but because it's an invisible illness, syndrome, disease, whatever, no one wants to believe I'm ill. They think it's all in my head or I'm just plain lazy.

Nothing could be farther from the truth!

I've decided that I need to keep a journal of my good and bad days... A history of my own fight with FMS. It's a struggle with an invisible enemy but if I try hard enough, fight tough enough, maybe, just maybe, I can win a battle or two.

This page is for me mostly but could, in the long run, help others to see that they are not alone. Click here to read my journal.

Look at the following list of symptoms in order of likeliness. If you have any or all of them go find an understanding doctor and get diagnosed. That is the most important step.

After you have read the list check out the links that follow. They are very good sites that will further explain FMS. And even offer some much needed support.


Symptoms

90% - 100%
  • generalized pain
  • fatique
  • stiffness
  • morning fatique
70% - 90%
  • post-exertional malaise
  • sleep disturbances
  • morning stiffness
  • headaches
  • tenderness
  • swollen feeling in tissues
  • numbness and tingling
  • cognative impairment
  • dizziness
  • sensitivity to noise, smell, stress
  • menstrual cramping
  • dry mouth
50% - 70%
  • irritability
  • blurred vision
  • mood swings
  • heart palpitations
  • cold extremities
  • feverous feeling
  • allergies
15% - 50%
  • restless legs
  • muscle twitches
  • itchy skin
  • hearing disturbances
  • night sweats
  • migraines
  • breathing problems
  • infection proneness
  • rashes
  • interstital cystitis
  • multiple chemical sensitivities
Below 15%
  • major depression

That's an impressive list.



Now here are the links I promised. Please check them out. They are impressive as well.



This will take you to "Living With Fibromyalgia".
This site is terrific for genereal information and for online support. I highly recommend it whether you know you have FMS or even suspect you have it.



This will wisk you away to "Information on Fibromyalgia".
Everything you should know in your quest for knowledge.



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The following is a letter that I found at the above site. The first time I read it I cried like a baby. It said everything I had always wanted to but just couldn't find the words. Please read it, and print it out to share with those you love. It may just make that little bit of difference in how they see you.

It may even make a difference in how you see yourself.

LETTER TO NORMALS

Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS/MPS and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...

- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

- Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

- Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

- Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what FMS/MPS does to you.

- Please understand that FMS/MPS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

- Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

- Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.

- If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would KNOW.

- If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me then I might not get to see you.

... and, as much as it's possible, I need you to understand me.







***************************************

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