What I want you to know about living with Fibromyalgia

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is bJanna Haynes.

In 2007, after a few years of trying to figure out why I was constantly in pain, overwhelmed with fatigue and my joints felt like a 65 year old (I was 26), I was finally handed down a diagnosis of Fibromyalgia (FMS). What? Never heard of it…

I've learned in the years since that not every doctor believes in the existence of FMS. Mainly because there is no scientific test to diagnosis it. You cannot take a blood test, a pee test or an MRI to get a diagnosis. Instead, I went through all those tests to eliminate the possibility of other diseases and disorders and then went through the very unscientific process of identifying more than 11 out of 18 pain points in my body, combined with severe joint pain and overwhelming fatigue and chronic sleep disorders.

It is hard to explain such a diagnosis to friends and family. It is hard for them to take you seriously. I can’t really blame them. When all you have to go on is your feeling, it IS hard to take seriously. I went round and round with myself trying to decide if I was just a really big baby, or if this phantom disease was real. 

The pain is real. The sleep deprivation is real. The joint swelling and soreness is real. The sensitive skin, the IBS, the “fibro fog,” it is all real. And it is all really hard to live with. Over the next five years I experimented with a concoction of drugs to manage my symptoms. Not heal them, manage them. Pain pills and sleeping pills and epileptic pills and and and and…

And I couldn't do it anymore. There were days I could practically feel my liver shutting down and I still wasn't managing my symptoms. In 2012, I pulled off everything. No more anti-inflammatories, no more sleeping pills. No more migraine medication, no more muscle relaxers. No. More. 
I would look on FMS dedicated blogs and websites and social networking groups and read stories of people that couldn't work, couldn't get out of bed, got a divorce because it was a strain on their relationship, and had given up on life because of this disease.

I decided a long time ago that I refuse to be a victim or a casualty of this disease. Though it may slow me down some days, it will not stop me. It has been eight years, a fourth of my life, that I have been living with this disease. I think about it every day. Every day something happens that reminds me of it. I almost never talk about it with my friends or my family. I don’t know what to say. I don’t like sharing news that makes people around me feel sorry for me and helpless. Every day I am tired, I am sore and I wish things were different.

But they aren't. I am living with an auto-immune disease that I will probably have for the rest of my life. But I am living. I can still do everything I want to do, I just need to learn when enough is enough. There are days my brain doesn't function exactly how I want it to, I am so sleep deprived I think I might go insane and moving takes extra effort, but I am thankful. Thankful it is me and not someone else. Thankful that through my suffering, I have compassion for others who suffer. 

What I want you to know is that even in the face of daily pain, there is so much joy, so much hope in living.



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