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  (#1 (permalink)) Old
cynefin Offline
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Any other fibromyalgia sufferers out there? - May 23rd 2013, 04:29 AM

I was looking at some quotes last night when I came upon this. I didn't write this - I'm not taking credit for it. Here's the link: http://fibrorelief.wordpress.com/fibro-sayings-things/

You have to read this:


A LETTER FROM FIBROMYALGIA
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),


10 best things about Fibromyalgia
(from Zazzle.com amazing website of super cool products)
  1. I save money on magazines. With brain fog, I can’t remember what I just read!
  2. I am a cheap date. No alcohol, no dessert and I still feel drunk or hungover.
  3. On ‘good day’s I feel wonderful. Other people need a much better day to feel that way.
  4. I am easy to find…I’m either at the Dr’s office or at home.
  5. I never have to make my bed because I’ll probably be right back in it.
  6. I have acquired a great lounging/sleeping wardbrobe. I rarely get dressed as nobody ever sees me.
  7. Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up!
  8. I feel smarter than my Doctors…all they say is ‘I don’t know’
  9. With short-term memory impairment I can hide my own Easter eggs and Christmas presents.


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Re: Any other fibromyalgia sufferers out there? - May 23rd 2013, 02:49 PM

Just out of curiosity, how did you get diagnosed with fibromayalgia? Did they test you for other things first and then conclude that you had it? I just know my mom has it, and went through hell finding a diagnosis because typically you have to rule out every other possibilty before doctors come to that diagnosis.. at least that's what her doctors all said, anyway.

Either way, I know it's terrible to deal with.. She's chronically in pain and stuff. I don't have it, but her and my aunt both do.. Doesn't seem like much fun, haha. I'm sorry you have to deal with it. /:

I have a few other physical health conditions, and reading that sounded a lot like how I feel half the time. Gotta love chronic illnesses.


"Be kinder than necessary, for everyone is fighting some kind of battle." <3


Feel free to PM/VM me if you ever need someone to talk to, or just want someone to listen. I'm also always up for making new friends.
   
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Re: Any other fibromyalgia sufferers out there? - May 23rd 2013, 03:12 PM

wow, I read through this and I'm in tears
Not sure why...but wow
I don't have it though
stay strong Cassie <3
   
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cynefin Offline
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Re: Any other fibromyalgia sufferers out there? - May 23rd 2013, 09:33 PM

Aw, don't cry, Susan

My diagnosis is a long story. This time last year, I had terrible lower back pain. I went to my doctor and she told me that I had scoliosis. My pain got worse over the summer. It spread to all of my joints, leaving me with no choice to wear support braces and use crutches. Then, my joints would throb and visibly change color. I used to scream out in pain every time this happened. I'd look over and my elbow would be blue and purple. We went back to the doctor, who explained that only one percent of teens have autoimmune disorders - some doctors don't believe in Fibromyalgia. I was ordered blood tests, tons of them; about twenty at a time until I'd nearly pass out in the chair. They thought I had cancer. Those tests came back negative, but they found out I had a odd count of antibodies. It made sense that I had an autoimmune disorder because people in my family have both MS and Lupus. I had to go all the way to the other side of my state for a doctor, and I was diagnosed with Fibromyalgia in February.

Yeah, definitely! There are some days that I can't get out of bed. Like today, I slept twelve hours plus an additional two for a nap. I'm always tired It's okay! It'll make me stronger It was in remission, and it seemed like as soon as I told people that it got worse again.

If you don't mind me asking, what kind of physical conditions do you have?


Articles & Resources Officer|Lead Moderator|Senior Newsletter Editor
The mountains are calling and I must go.
1941-2016

They whispered to her
you cannot withstand the storm
she whispered back
i am the storm.
   
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