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Longlongmeri

New member
Joined
Sep 20, 2014
Messages
4
Reason
DX FIBRO
Diagnosis
08/2012
Country
US
State
Utah
I have experienced pain for 6 years now. Even though my doctor says I "probably" have it, he has not formally diagnosed me. We have r/o all other things through blood work. I tend to go in to him when I am not flaring, so think that makes a difference. i tend to feel it in my shoulders, elbows, sitting bones, hips, and inner knees - like the kind of pain that I will growl at you if you touch. beside the tender points, my pain is burning - like acid is under my skin. I find lack of sleep and stress bring it on. The only med I have taken is amytrytyn, but weening off because it out 30 pounds on. Besides that, try to keep it under control by sleep, diet, walking, and breathing. I am a mom to two kids and work full time at a job that makes me be on my game (public speaking, etc), which exasperates things at times. At least it helps keep the mind off of the pain. The hardest part of fibro is that I used to be so athletic and am married to an athlete. This has changed both our quality of lives. And finally, happy to find this board since I am a silent sufferer and would be nice to commiserate with others. . Not even my parents know. Just my husband and 2 friends. I have a hard time letting people know that I live in chronic pain. And also, I don't feel totally supported by my husband, so fearful what others will think.:(
 
Hello and welcome to the forum. I have found it is not so hard to tell people, but the hard part is getting them to believe that 1. I am in pain. And 2. that fibro is a true illness. If family and friends are not believers and are not supportive then we are reduced to putting on a brave face and charging forward even if the pain is overwhelming. I wish I had a answer for this problem. You know a one size fits all that would make others listen and believe, and understand. But as you know things are never that easy.

I hope you will read through the different forum sections and post your thought and opinions on different members posts. We all try to be helpful and supportive and sharing how we handle things in our lives effected by fibro helps make the forum work and grow. Look forward to reading your posts. :)
 
🎭Amen! Thanks for your encouragement.
 
Hello there Longlongmeri. Welcome to the fibromalygiaforum. I hope you enjoy your stay here.
 
longlongmeri I am so sorry that you are not only in pain but dealing with it silently while standing on an impossibly high pedestal. If I could turn back the hands of time I would not have opened up to my family when I did as they couldn't deal with it nor accept it. I took an early retirement from Walt Disney World in Imagineering just as my nest emptied and I received my first diagnoses and took on free lance work so I could still work when I was on my game. With Fibromyalgia there is no one size fits all regime, we all have to find what works for us and tweak it when necessary as no regime may work forever. I firmly believe that what is in motion stays in motion and so I believe our lives depend on some exercise as much as we can tolerate if only to sustain our muscles and keep our bodies as best we are able. Please find a decent Rheumatologist and Neurologist to work with you. Keep on knocking until you find the right ones as long as you stay with the wrong doctors you will never find the right ones. Like you, I was worried what other people would think until the "ah-hah" moment that I realized they didn't have to wear my shoes and then I quit caring what they thought and that was one brick off my back that I couldn't afford to tote. We all hope for those we love to accept what they do not understand, illness is not who you are but it is what you survive with and there are many that won't be slowed down by those that just can't keep up anymore - you don't need their kind as there is no kindness or empathy in them to spare as they will show their true colors but focus on those who stay and be grateful for them as they are worth more than all the gold in the world. I wish you all the best and hope you come away from this group richer for the experience as I have.
 
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