Why I chose my team name.
April 03, 2016
EVENT: Together Walk | Virtual
I feel I need to tell my story so others truly understand what it is like for me since my fibromyalgia diagnosis. I have never been truly honest with others about this. When I start to explain, I can feel others think it is all complaining and that I exaggerate my condition. The only way that I can improve is for funding for research for comprehensive treatments and the NFMCPA continues their advocacy. This is why I am imploring others to contribute to the “Together Walks”, the proceeds are going for research and the NFMCPA. I am not wanting piety; I am looking for support!
I was diagnosed with fibromyalgia June 2005. It took one year of many medical tests, doctors and treatments. I was experiencing lower and upper back pain, only sleeping a couple of hours each night along with headaches, anxiety, depression and chronic fatigue. When I woke each morning I felt that I was ran over by a truck. I felt worst sometimes then I did when I tried to fall asleep. I would lay awake at night in so much pain. I was on the verge of going to the ER, but I knew that they could not help me. I was working at the time over 60 hours a week with lots of stress. I loved it! At times I would go home from work in tears. I did not want to leave work, yet the pain would be too great and I was no good. This was really hard for my ego. My job meant everything to me.
In May 2006 I left my dream job to change to a more manageable job. I moved closer to my parents and family to help ease my spiritual, emotional and physical pain. When I finally had a diagnosis they put me on a prescription cocktail that I still continue to this day. This only takes the edge off my pain, depression and anxiety. There are nights I lay wake because I can feel my fingernails sides growing into my skin. Sometimes I feel the seams in the toes of my socks pushing on my feet when I walk. I feel and hear my spine going up and down my skull when I walk almost daily. After a day of work, I am too tired to even lift a fork to my mouth, let alone chew. Many nights I just don’t eat dinner because of the fatigue. I had pelvic pain almost daily for a year before I told anyone. And the list goes on and on, I haven’t even talked about the brain fog, IBS, TMJ, cognitive dysfunction, carpal tunnel, neck pain, low immunity, chemical sensitivity (even smells), and restless leg. I am sure I am forgetting a few more.
But I am one of the lucky one with fibromyalgia. I am still able to work 40 hours, but just barely. I also own a condo, well a mortgage. This is very hard with my condition and I fight every day I keep it. In the last 12 years I have spent close to $20,000 to find relief and if I could I would have spent more. Fibromyalgia is such a diverse condition that a western and an eastern medial approach helps the most. But this is not feasible for most including me. I am only doing as well as I am because of my parent’s financial support and credit cards. My parents would and have offered to help more but I like to pay my own way and being independent is very important to me. Yet when you are in such debt I am lucky to know I won’t lose my home. Many others with fibromyalgia are not as lucky and blessed as I am.
Every day I am grateful for how I am doing. Yet this can change very quickly. I even had doctors tell me I am doing as well as can and there is nothing they can do to help. I am not doing better. Each year there are new complications, new medical diagnosis and new pains for me. Yet I will continue on as long as I have a voice to be an advocate for fibromyalgia and chronic pain. Again I am not looking for piety, I am looking for support. Please donate to my fundraiser so there can be a future, a light of hope for those with fibromyalgia.
Be part of something bigger. Grab a pair of walking shoes, roll up your sleeves, and meet others who want to make a difference. It’s time to make fibromyalgia visible in your community!
The National Fibromyalgia & Chronic Pain Association is joining forces with people like you across the U.S. to launch TOGETHER WALKS in 2016 to raise fibromyalgia awareness and research funding. Passionate Leaders have already taken the lead for 2016 in Richmond, Portland, Coral Springs, Louisville, and a Virtual Online Walk.
We’ve organized a virtual Together Walk so you can form teams online, or with whomever you want to connect, even while you are at home. Everyone can participate regardless of their health status or ability to travel to specific locations. Your voice matters in changing how fibromyalgia is perceived, treated, and researched.
Fibromyalgia is a life-altering condition affecting 2-4% of women, men and children of all backgrounds worldwide to suffer. (That’s 10 million Americans alone.) The illness can strike suddenly or occur as a gradual increase in symptoms, indicating changes in the central nervous system (neuroplasticity). Sensory information (such as light, sound, and touch) becomes amplified by the CNS, causing the brain to respond with increasing pain and symptoms. FM severity waxes and wanes; often increases over time; and may become disabling.
Through research/innovation seed funding raised at Together Walks, new exploration in areas such as small fiber neuropathy, cervical cord compression, and myofascial release may bring promising new treatments.
What is the Virtual Together Walk? It is pretty simple. Follow these easy steps to participate:
1. Register (Click the Join button above at top of page.)
2. Set a goal for yourself and set up your fundraiser. Raise awareness and funds in your local community to support the efforts of the National Fibromyalgia & Chronic Pain Association.
3. Form a team of your friends, neighbors, support group members, and family. Or choose to participate on your own, knowing you are part of something bigger! You make a difference!
4. We will send you a link to order the official Together Walk T-shirt.
5. A virtual walk can be done in two ways: online or in your community. Choose your distance: you may walk around the block, do a 1K walk at the local mall, or even try a longer walk or run around your neighborhood. Do what you can. There is no distance too short. Be creative if you are unable to walk by forming a team online and fundraising with friends.
6. Strolling, walking, or running is best scheduled during the week of Fibromyalgia Awareness Day (May 12).
7. Take a photo of you and your team with a “Together we make a difference” sign and share it with the hashtag #togetherwalks on social media and tag us @togetherwalks on Twitter, Instagram, Facebook and YouTube. Use your imagination – your voice matters!
This is an opportunity for people with fibromyalgia to have an action-oriented, healthy event for their friends, family, neighbors and healthcare providers to support them in a positive and uplifting way. These walks are foundational for the NFMCPA to continue strengthening its four tenets: increase of support, awareness, education and research globally.
As a participant, you will have access to educational materials about fibromyalgia and enjoy live-streaming of presentations from medical professionals with expertise in fibromyalgia and pain disorders at other Together Walks across the nation.
The NFMCPA thanks you for your continuing support and looks forward to walking with you.
Can you imagine what can be done together when there is a walk in every state and across the globe? If you are interested in hosting a Together Walk in 2017, please contact the NFMCPA at firstname.lastname@example.org.