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diamond

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DX FIBRO
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anywhere
Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!

In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.

Have a nice day!! (ROFL),
 

medicmurphy

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Can
State
Alberta
Very good willow. I really like this one. Especially the " stealing the dignity" part.
 

anna42

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Joined
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oxfordshire
very well written and totally true
 

Sagey

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Joined
Nov 20, 2014
Messages
209
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Diagnosis
06/2011
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Us
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NY
Can relate to the part of telling the doctor how you can't function on a daily basis,and not being taken seriously! Sad but true

Good Letter Willow




Sagey
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
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UK
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I had hoped more people might relate to this letter about how fibro feels...although the other one posted by Sagey was excellent.....i know many people post here wanting to know how to let family or partners know how it feels and i thought this explanation was pretty good and could be used to show loved ones as it explains in simple terms from our perspective .... not just the pain but the response we get from medical profession friends and family.

I for one have had endless hurtful dismissive comments over the years.
 
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John M

New member
Joined
Apr 12, 2017
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7
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DX FIBRO
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00/0000
Country
Us
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Az
I'm new to this forum but can I just say thank you for your post. I'm glad someone else understands.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
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UK
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anywhere
Welcome John M ..i hope you find the forum helpful..many nice people here and always support and advice if needed. No one has the magic pill to cure us all but at least we all get each other on so many levels.
 
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