A MESSAGE FROM THE FOUNDER:
“The best way to understand fibromyalgia (FM) pain is to join us at our meetings, browse the files on our website for the latest research and talk to our members. FM is not a garbage diagnosis, it is a central nervous system disorder that takes years to properly diagnose by a trained medical professional. The 18-point tender point test is NOT a way to test and diagnose FM. If this is the only thing your doctor has done to diagnose you, please consider further evaluation. Pain is real. It is not in your head, but it is complicated and there are several types of pain; every person needs to understand the differences and make informed choices in their healthcare.
There are a couple things you should ask yourself before accepting you have FM: 1. Did you eliminate all other possibilities for your pain before accepting a fibromyalgia diagnosis? 2. Did your doctor run the gamut of tests to rule out other factors, such as the Epstein-Barr virus, CFS, Lyme disease or Rheumatoid Arthritis? If your answer is NO to these questions, please seek further examination by your medical team to ensure you are receiving proper care.
We will be here to help you understand your pain and we welcome all forms of pain stemming from various diseases. Although, it is helpful to understand which type of pain you are dealing with. It is likely you are suffering from both Neurological pain (the tingling and ongoing pain from the central nervous system that does not seem to have a driving force outside of inflammation) as well as Peripheral pain (ie. inflammation-based pain, RA, TrPs) and you are being treated for them the same way. Our goal is to help you learn the difference so you can make informed decisions, work with your medical team for proper care and begin a treatment regime that works!
We are not a medical group. We are not doctors or medical professionals. We do not answer to another organization or are funded by one source. What we ARE is a group of patients and caregivers who have dedicated our lives to helping others in chronic pain by learning, supporting and raising awareness. Please join me and all the volunteers who have committed to my efforts to see that we know where you’re coming from.”
Who We Are
Kentuckiana Fibromyalgia Support Group is comprised of Fibromyalgia and chronic pain survivors who are often misunderstood. We’re mothers, fathers, sisters, brothers, daughters, sons, seniors, teenagers, and adolescents; Fibromyalgia doesn’t discriminate. Our organization is recognized nationally as a husband-and-wife team offering education and support for those suffering from Fibromyalgia and chronic pain and those who care for them. Our organization is made up of volunteers who are patients or caregivers and understand your questions and needs.
What Is Fibromyalgia?
Fibromyalgia is a disorder of the central nervous system that causes widespread chronic pain lasting longer than three months. Additional symptoms that frequently exist with FM include extreme fatigue, sleep disturbances, cognitive impairment, memory loss, difficulty in concentration, heightened light, sound, and touch sensitivity, depression, and migraines. There are overlapping symptoms and conditions which are being studied and researched by science; while the science of fibromyalgia is becoming more understood, a cure is yet to be found. For additional information on Fibromyalgia, please visit the National Fibromyalgia & Chronic Pain Association at www.fmcpaware.org for details.
Our Support Group
Kentuckiana Fibromyalgia Support Group is a public support group for people of all gender, race and age suffering from fibromyalgia and similar chronic pain syndromes. Our organizers urge all members to keep shared conversations private and within our meetings and not be disclosed to another party. Privacy is of upmost importance to us and we want you to feel comfortable sharing your story. You can RSVP to any of our meetings by finding us at Meetup.com™ where you can learn more about our calendar of events and all posted meetings.
Kentuckiana Fibromyalgia Support Group is not a substitution nor do we offer medical advice.Please contact your physician for questions relating to your care. Thank you.
Kentuckiana Fibromyalgia Support Group, Inc. is a 501(c)3 nonprofit organization. Please contact us if you require further information.
Your feedback is important to us, we want to ensure we are meeting your needs as both a person with chronic pain as as a caretaker/loved ones. Please take a few moments to complete our ANONYMOUS SURVEY on Survey Monkey and let us know how we’re doing? We DO NOT track your person information nor is your IP address tracked; this is completely anonymous and we encourage transparency within our organization as well as feedback from our members.