ISFN

Originally posted on www.ProHealth.com • January 24, 2018

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If 2 heads are better than one just image what 6 determined advocates can accomplish when they put their heads together.

What is the ISFN? “The International Support Fibromyalgia Network is a non-profit movement dedicated to educating, informing and inspiring the fibromyalgia community. Although, it is a new fibromyalgia network the advocates behind it are all well known in the fibromyalgia community. Our founding advocates all have fibromyalgia and represent a wide variety of ages. The advocates will be focusing on 6 areas of advocacy.  They are medical education, adolescents with fibromyalgia, veterans & fibromyalgia, families & fibromyalgia, men & fibromyalgia and advocacy.”

Who are the faces behind the ISFN?

Melissa Talwar  Founder / President 

https://www.facebook.com/melissanerdtrepreneur

twitter@moshpitqueen

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Melissa is a tech and marketing nerd on a mission to increase education and advocacy for the fibromyalgia community. Her passion to advocate for patients with fibromyalgia stem from her own struggle with chronic pain that began in her teens. Like many living with fibromyalgia, it took years of going to multiple doctors and experimentation with various treatments. That struggle took an emotional toll. She started volunteering and advocating in 2002, but never felt like she could do enough. With her health continuing to decline in 2016, she set-out on a mini-fibro tour to meet other advocates, doctors and support groups. “After many discussions on the road, a few of the advocates banded together to form the International Support Fibromyalgia Network.” ~ Melissa T.

 

Brandi Clevinger  Secretary and Fibro & Families Program Director

 Being Fibro Mom

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In 2013 Brandi created  Being Fibro Mom and My Fibro Journal  with the intent of helping fibromyalgia sufferers become fibromyalgia thrivers and advocating for parents enduring the hardships of fibromyalgia. She hosts a live show each Friday called Fibro Live in which she discusses the latest fibromyalgia topics, news, research, and more. In addition, she is a regular writer for the international magazine, The Fibromyalgia Magazine. In 2016, she created a closed Facebook group, Fibro Parenting. The group is focused on any parent or guardian looking for support while parenting with fibromyalgia. “My goals as program director are to create a support group – online and offline – for fibro thrivers and their loved ones as well as working with the other founding advocates of the non-profit to establish accurate, up-to-date information regarding fibromyalgia.” ~ Brandi

 

Norman Hanley    Men’s & Veterans Program Director

Men with Fibromyalgia

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In 2008, Norman a USMC veteran was a traveling salesman, seeing his sales decline due to fatigue. In 2012, it came to the point where he could no longer travel, so he took a local job. After 4 months of a part time position he was bumped to a FT salaried position that started strong and well, by the end of 2012, early 2013, his production was such that he was in a quit or be fired situation. During this time, he had been going to the VA looking for a reason for his pain and fatigue. A couple of years and several doctors later he was finally sent to the Pain Clinic within the VA and was diagnosed with fibromyalgia along with a few other co-morbid conditions.  In 2015, he came to the conclusion that he could no longer work and had to file for SSDI. In seeking out other Men with Fibromyalgia, Norman started his website MenWithFibromyalgia.com & facebook support page Men with Fibromyalgia to share his experiences with others. In addition he is a speaker and well loved Advocate in the Chronic Illness Community. As Norman say’s “I feel like Job from the Bible. Using my illness, pain and suffering to help others”

 

 

 

 

 

Kristin

Kristin Sciarappa Teen & Family program director

INSERT  ———————————————————————–Kristin has been advocating for Fibromyalgia since she received her official diagnosis in 2014. She is the founder of the online support group “Fibro Fighters Under 40”, which as the name suggests, is a group specifically for young adults and teens who live with Fibromyalgia.  Kristin uses her love for writing and passion for advocacy on her newly-named blog Living Invisible (www.living-invisible.com), where she shares her experiences and opinions regarding Fibromyalgia and mental illness. She is a frequent contributor to the popular website “The Mighty”, as well.

 

Rick Malta Mens & Family Co-Coordinator

Dastardly Dad

26855376_10204139451324629_762561836_nRick, is a single dad that has been blessed with a remarkable young man to raise.  Together, we go through life one day at a time.  “Dastardly Dad is our perspective on family life and how my chronic pain affects our lives. It is our journey as we attempt to move past the loss of my ex-wife (Jack’s mother), coping with my chronic conditions, and share some laughs.” states Rick “We have our moments, both good and bad.  We are hoping to be able to share a piece of our lives with the hopes that we can help others who face similar situations.”

 

Melissa Swanson  Advocacy program director

Fibro Warriors Living Life

bookcoverMelissa Swanson is a chronic pain patient, advocate, and author. Through her Fibro Warriors ~ Living Life Facebook page and blog, she offers positive encouragement, medical information, resources, and support. In addition to writing for ProHealth.com she is the author of Ravyn’s Doll:  How to Explain Fibromyalgia to Your Child. She is a NFMCPA Leaders Against Pain Advocate and a Certified Fibromyalgia Advisor thru the International Fibromyalgia Coaching Institute. “I understands and try to help others with the struggles of trying to balance family life and work while living with the challenges of fibromyalgia and its “evil sidekicks”.” Melissa

 

 

The new chapter in fibromyalgia education and advocacy begins now!”, says Melissa Talwar .  Learn more about ISFN at https://supportfibromyalgia.org/ & https://www.facebook.com/supportfibromyalgia/

Journey to a Diagnosis 

www.ProHealth.com • Originally posted on  February 10, 2018

For many people, symptoms begin after an illness or emotional or physical trauma. They  do not likely cause fibromyalgia but may trigger the onset in people who are already at risk.

If you ask most fibromites what caused their fibromyalgia, what was their “trigger” they can usually tell you. In fact, their may have been more than one. Before I was 25 I had experienced several events that could easily have triggered my fibro. I was in 2 severe car accidents, a devastating unexpected loss of my grandfather and a move away from everyone that I knew. Yet, none of those events triggered my fibromyalgia.

However, 17 years later the combination of a stressful job, unexpected family loss and a year of weekend travel with physical and emotional stress dealing with the family members estate was as they say “the straw that broke the camels back.”

It began with migraines, insomnia, lower back pain, jaw pain and body stiffness. I went to a my GP, chiropractor, dentist, radiologist, physical therapist and counselor. Each test would come back with a new diagnosis but nothing to show the why or what I could do about the increasing pain and fatigue. The worst feeling in the world is when no one believes you.  Not only your doctors do not believe you but when your own family agree with them, “It is all in your head.”  I began my own researching. I plugged in all of my symptoms and diagnosis to find out if they had anything in common. There it was, Fibromyalgia.  The more I read, the more I was certain that I had it.

I needed someone who would be willing to look at all of my symptoms and run the tests needed. I decided to see a new Doctor. I wanted a fresh start and new perspective with someone that had no idea about my previous health history.

I researched physicians in the area looking at their specialties. I found a young doctor who listened and began running blood work and every test she could. At last, she decided to send me to a rheumatologist.  Although, he was very rude and made it perfectly clear that he would not treat me he did tell me that I indeed did have fibromyalgia.

I had never been so happy to get a diagnosis in my life. Finally, someone believed me. Wouldn’t everyone else need to believe me now as well?  It gave me validation and hope.

It all made sense to me now. This is why I had all of the following: Headaches, Exhaustion, Insomnia, Chronic muscle pain, Stiffness, Fevers, Emotional rollercoasters, Anxious and Depressed, Jaw tenderness, Difficulty remembering, concentrating (Fibro Fog), Increase in urinary urgency, and feeling of swelling (without actual swelling).

I did not deal with my diagnosis on an emotional level but a cognitive level.

Now that I knew what I had I could begin my research.  I wanted to learn everything, talk to everyone who had it or knows someone who does. Thankfully we live in an era where information is at our fingertips and social media allows us to connect easily with others.

I never would have guessed that not only would this be the moment I would look back at and see what kind of person I was to become. Would I roll over and let this illness take over my life or would I stand up and fight?

The search for answers and desire for positive support led me to create Fibro Warriors Living Life. My facebook and website for others who are like me. We are trying to continue to live our lives in spite of the pain, fatigue and other “evil sidekicks” that are co-existing conditions of fibromyalgia.

Although, there are days when I feel like I am losing the battle I am fortunate that I have an army of warriors that remind me to keep on fighting.