While Fibromyalgia impacts between 3 and 6 million Americans, there still is too much “unknown”. You can’t say “I have fibromyalgia.” like someone might say “I have asthma.”
People just don’t get it.
Fibromyalgia pain is real. At one point in time, fibromyalgia was a diagnosis given to anyone with chronic pain that could not be explained. With new research, it is now known that people who suffer from fibromyalgia experience real pain, with associated changes in brain chemistry that may cause overstimulation of nerves or hypersensitivity to pain stimuli. Research has led to the acceptance of fibromyalgia as a legitimate condition with identifiable symptoms, and the search for treatments that can improve the lives of people living with fibromyalgia is underway.
“You always cancel last minute.”
“You ALWAYS have a headache.”
Trust me, I’d much rather be the person that was ALWAYS on the go and running circles around people. I still have fun and get out and about but I just can’t do things in “overload”. I do always say, I’ll deal with my pain when my kids are in bed.
I have very few people in my personal life that I see everyday that understand fibromyalgia. They are instead, frustrated, with my “abilities”.
It sucks.
In a quest to find answers, and those that understand, I took to facebook. Here are just some of the pages I found that are supportive of those with fibromyalgia and other chronic pain “Invisible disease”.
Facebook Support Pages for those with Fibromyalgia
- People with Fibromyalgia
- Fibro Mommies
- Frustration with Fibromyalgia
- Fibro Friends
- Fibro Faces
- What is it like to live w/Fibromyalgia & Chronic Pain/Fatigue?
- Fibromyalgia Network
- American Fibromyalgia Syndrome Association
- Fibromyalgia Family and Spouse Support
- Fed Up with Fibromyalgia
These are truly just a handful of pages that I have checked out and know I can look to for stories of those that can understand and support.
You don’t need to fight or feel alone. There are people out there that understand.
10 Comments
I can relate to your struggle with chronic pain. It is great that you are helping others find support. A support system is needed, especially, on days when other people just don’t get it. I suffer from chronic low back pain, hip pain, and it’s no fun.
My neighbors struggles with this. Never knew much about it. Thanks for the info!
My Mom suffers chronic pain and it’s horrible for me to know she suffers. I have an extended family member who was diagnosed with fibromyalgia but his wife still thinks it’s all in his head. :/
I went through years of testing for different things like lupus, RA and a ton of other conditions the doctors thought might explain some of my symptoms. I was never given a firm diagnosis of anything other than an undifferentiated autoimmune disorder. I know what you mean about people not understanding when you are not feeling well, as I have even seen it over the past few months while having treatments for breast cancer. I guess if you look OK on the outside, you really can’t be feeling all that bad, right?
Good job for helping to raise awareness:-)
This doesn’t sound like any fun, at all. 🙁 Sorry you are going through this!
What an awful disease 🙁
A great post! Thank you for the useful information Jenna!
thanks for sharing this,I have chronic pain in my head from a brain anersymn years ago,,sometimes you feel you are all alone in this,,its no fun
I’m so sorry to hear you have chronic pain. I have chronic pain, as well. Mine is Reflexive Sympathetic Dystrophy (RSD) or also called Chronic Regional Pain Syndrome. I know how it is. I’m so sorry to hear that you deal with something similar. 🙁
You know I have chronic pain. I am no longer able to do things I used to do because of it. I wish more people could understand how it is to be in pain 24/7