Voices of Fibromyalgia

Patient Leader

Voices of Fibromyalgia is a facebook community with over 104,000 members coping better together. It was created by Haullie Volker in 2012. Bringing people with Fibromyalgia/CFS together for awareness, motivation and inspiration. We are dedicated to spreading awareness, news articles, information, inspiration, affirmation, stories, life lessons, resources and projects to those surviving Fibromyalgia; a chronic pain disorder that affects 1 in 50 people worldwide. THE DOCUMENTARY FILM: Haullie has gone on to create the "Voices of Fibromyalgia" documentary that can be found on YouTube and has become a movement among the community as it is the first documentary that actually depicts what fibromyalgia LOOKS and feels like. A film that survivors are able to share with family, friends and co-workers to educate them about this illness and has even been shown as presentations for support groups and college classes. THE FIBRO SHOW RADIO: Haullie Volker & Stacy Ihlenfeld are the hosts of the internet streaming radio show called THE FIBRO SHOW which is dedicated sharing awareness, news articles, information, and inspiration for survivors of fibromyalgia and other chronic illnesses. Just two GOOFY GIRLS with a chronic illness! We have interviewed celebrities, authors, fitness thrivers, and are committed to exposing the topics that need to be brought into the light. LISTEN TO OUR SHOW ARCHIVES AT: http://www.blogtalkradio.com/thefibroshow FIND US: You can locate us at our website, fibro blog magazine, facebook page as well as our twitter page below. WEBSITE: http://voices-of-fibromyalgia.blogspot.com FACEBOOK: http://www.facebook.com/voicesoffibromyalgia TWITTER: http://www.facebook.com/haullievolker EMAIL HAULLIE: haullievolker@yahoo.com Thank you for your consideration in nominating our plight to give hope to those who are in chronic pain. Love & Support, Haullie Volker

Nominations

Best in Show: Community or Forum Best in Show: Instagram Hilarious Health Activist Health Activist Hero Best in Show: Blog

Finalist

Best in Show: Facebook

Because she provides a way for us to share our thoughts, symptoms, treatments, and support for each other. It has helped me immensely and I know she has also helped many others.  — Jennifer

They are an awesome caring group of people, that are there to educate, listen, advise and simply care. They understand what it is like, the problems associated with the invisible illness known as Fibromyaliga as well as the chronic fatigue that comes with it. They are a voice for so many that know not where to turn when Doctors tell them their symptoms are all in their head.  — Angel

Living with Fibromyalgia is a very isolating illness, no-body understands it, no-one knows about it, and hardly anyone can tell from looking at you, that you suffer daily. Voices of Fibromyalgia is a great online community providing much needed support, encouragement and even tips to living with Fibromyalgia, I would not be able to go through the daily struggles of Fibromyalgia without this community support.  — Voices

Voices of Fibromyalgia has helped me in so many ways. It's a space to share with others with FM in a world where unless you have FM, it is so hard to understand. For years we were told "It is all in your head" only to find out that it is in our heads....our nervous system. Janice A Jones  — Voices

It is inspiring and also helps me to cope with my fibromyalgia day to day when I can talk/listen to other people who go through the same things I do.  — Sandra

Voices of Fibromyalgia truly gives those of us who suffer from Fibromyalgia a VOICE! Sharing our experiences with Fibromyalgia helps us to know that we are not invisible and we are not alone! We are free to share our experiences and in doing so, help each other. This page is the best that I have seen and it is the first that I've seen that doesn't dwell on suffering with Fibromyalgia but surviving with Fibromyalgia!  — Brenda

Haullie, Stacy and Robby inform and inspire me every day. They make me laugh when I am having a tough day. They provide me with information to both understand my disease better, and to encourage me in my quest to better inform my friends and family. They have brought together those of us who battle Fibromyalgia every day, to share our experiences and support one another. Because of them, we are no longer alone! They are my heros!

For sharing of herself and informing Fibromyalgia community of latest studies and research relevant to topic. Encouraging, proving a place, and giving a voice to people with Fibromyalgia.  — elvira

Haullie has been an inspiration to me, I have struggled for a long time understanding what was wrong with me, as soon as I was finally diagnosed with Fibromyalgia I found this web site and she has not only showed me how to cope but her "The Film" has showed me, my family and my friends what I have been dealing with for years and they finally get it! It is truly an eye opening look into someone with fibromyalgia and the daily struggles we deal with. Thank you Haullie, you are a wonderful, caring Fibromyalgia fighter!  — Kathy

H-elpful E-exceptional R-espectful O-utstanding

H-elpful E-xceptional R-espectful O-utstanding  — Maey

Although I have never posted to this page, I read their posts daily. I find the posts to be very informative and uplifting. To see that there are so many suffering as I am makes me feel not so alone. Their posts from personal experiences are very helpful,things they have tried to help ease the pain and the questions from other followers have helped me so much sometimes doctors,family and friends have no clue just knowing there is some where to turn to for help and understanding is awesome  — karen

Most people, including a lot of doctors, do not think fibromyalgia is a real chronic pain disease or syndrome. Fibro suffers constantly here; "It's all in your head"...."you need to stop being lazy and exercise or work though it", " you are just crazy"! Voices of Fibromyalgia, is a great forum of education and support for follow suffers and the uneducated doubters out there. It gives Fibromyalgia suffers a "voice" we never had before to share our personal experience with this horrible disease! To share our pain and suffering, our fustration and realize " I am not alone"! To share ideas of comfort measures that might help relieve some of the suffering. Education and awareness of Fibromyalgia is desperately needed in this country and the world! Voices of Fibromyalgia has given hope to the hopeless, education to suffers, families and the public. Voices of Fibro is a great advocate of health (mind, body and soul) and an educational forum for all. Voices of Fibromyalgia saves lives!  — Judy

The one thing that sets this group apart from others is the fact that the topics that are discussed are all discussed on an open & personal level. This group truly deserves to be rewarded. The amount of personal stories and personal pictures shared by Haullie & Stacy (showing the bad days and what fibro actually does to us sufferers) is so brave & beyond helpful in making sufferers feel like we are understood, not alone & most of all not judged. It is so great to have somewhere to share with each other our stories about our day and our symptoms. Many of my symptoms have made me feel alone & crazy since I was diagnosed, until I found this group and realized that I am truly not alone.

Provides amazing information about fibromyalgia. So many of us find and learn more. Many of us are able to share our experience and help others.  — Jessica

Because she gives us courage and Hope. We are not alone with this pain disease. Worldwide there are so many people who suffers from Fibromyalgia, like me in Germany. But the Voices of Fibromyalgia on Facebook reminds me everyday that I'm not alone and gives daily information about the disease and what we can do..and most of importan... she makes me smile!!! Thank you so much Haulie!!!  — Andrea

Informational facts, makes me smile, sometimes it makes my day worth doing things.  — Julianne

It keeps me posted on my syndrome it helps me help myself... I am very active person and with this syndrome I am going down hill fast. It doesn't allow me to give up and end my life it teaches me that even though the quality of life is not the same it can work and I'm not alone. And it keeps me posted on medicines and answers any question I may have. I thought I was alone but thanks to Voices of Fibro I am looking forward to this new life of mine... Though a difficult new life but one that still will be full of happiness....  — Carry

Always inspiring and uplifting :-)  — Kit

Haullie has a great personality, kind,funny and warm hearted. At the same time she lets us know we're not alone. She is very knowledgeable about our illness and she stay's up to date on all the medical news that comes out about this illness. Before I found her page, I worried a lot more and stressed so much more not knowing what was happening to me,now I know to relax a little and let it pass. So I want to show her my appreciation by nominating her for this award!!  — therese

This site and Haullie has helped spread the word on fibromyalgia. Helped educate others about our condition. She has opened a support group for all of us to talk about medicines, treatments and diagnoses. She has given all of us a true voice to be heard!  — Greg

This site has been invaluable to me as a source of personal contacts, web Links and research.. people are willing to open up and discuss their daynto day living with this disabily disorder. Administrators and friends post links which us to oother sites. When im feeling bad this group holds my hands if necessar, which means alot to me.  — Sheri

This site has helped more people in more ways than any 10 fibromyalgia sites put together!  — Cathy

It gives us a place where we can share our story, read others' stories. We can find answers, get support, find understanding without judgement and it's a place where we can vent when needed and share what we find out from our doctors. Unless you have fibro most people just don't understand what you are talking about. Here they do.  — Cyndi

Relentless positivity and efforts towards supporting other fibromyalgia sufferers, educate, enlighten and raise awareness.  — Emilie

Voices of Fibromyalgia is, on a daily basis, constantly raising the awareness of this chronic and unforgiving invisible illness. Always there providing vital support for this extremely misunderstood and cripplingly isolating condition. Raising understanding, reducing stigma, embracing the positive and spreading smiles- what more can a Fibro Survivor ask for?  — Emma

Because Haullie gives updated info for FM as well as shares her own daily personal struggle, I get so inspired to keep fighting. I've found education, support, humor& laughter. I've suffered for 10 years and have never found a site this informative and personal. I'd be lost without thus site, it is my Fibro Rock!  — Leigh

This site is amazing! There is always new information being posted about fibromyalgia that I wouldn't know anything about if it weren't for them. Having Voices of Fibromyalgia has helped me so much since being diagnosed. It is so nice to have a place to go to talk about my symptoms and have compassion and understanding. I would be lost and feel all alone if it weren't for Voices of Fibromyalgia!  — Melanie

They encourage those of us with FMS to continue in our battle against this dreadful disease. The FB Posts from other sufferers reminds us that we are not alone, and it gives us hope for a cure someday.  — Holly

She has brought us chronic fibromyalgia sufferers all to one place where we are not judged, can share our stories, gain information, and know that we are not alone. Medical treatments are also discussed, we may otherwise miss this information is it were not for Haullie putting this site together.  — Debra

Best outreach and community connection.  — Lisa

They are there for us when no one else is. There is nothing but understanding, caring and helpful information for those of us who suffer from this disease.  — Juli

VOICES OF FIBROMYALGIA has helped me learn how to deal with my diagnosis. They have shown me that I am not alone, and that my thoughts about FM are shared by others.  — Tracey

They are just so supportive of everyone, they don't judge, they are great on making people aware about Fibromyalgia and that everyone is different. And that different treatments work differently on each individual.  — Jackie

Always has great information... And keeps it real and keeps track of how the page is ran.... Like to hear people tell and share their stories!!  — Shelley

Voices of Fibromyalgia has made a personal difference in my life. I have Fibromyalgia myself and V of F is the only place that I have found that truly seems to know how I feel on a day to day basis. There are other fibromites who validate me in my feelings too.  — Holly

It has helped realize more about Fibromyalgia that my mother and I both have and alternative ways to deal with it!  — Theresa

They help me and so many get from one day to the next with the support and understanding that is such a blessing! They keep Fibro awareness alive!  — Jennifer

This facebook page is one of my favorite places to go when I need support or info. And the admins of this page are knowledgeable, funny, help raise awareness and are super supportive of us all. They deserve this award.  — Elicia

Voices Of Fibromyalgia has really inspired me through good times and in bad. They post a lot of really good information about the "silent illness", helpful links and information. I get a lot of inspired and uplifting posts from them when I need it. I am really grateful for all of what they have done and helped me with.  — tiffany

The page is the best at educating the user of the disease. The editors of the page offer support, open forums, and shares links to help the person who has fibro and to raise awareness to others concerning he disease, the information is also helpful to the care takers. I have learned so much from this activist page on Facebook.

I am nominating them because they inspire me cause I have severe Fibromyalgia and I can get tips and helps they post for the pain. Also they are speaking for us who have Fibromyalgia and making it more known to others who do not understand what we are really suffering with and the severe pain that we go through each and every day. That is why I nominated one because they are fighting for us fibromyalgia victims who never asked for this illness.  — Voices

This Face Book and website keep me going on days I am very low. It is full of imformation, humor and connections that thousands of people with fibromyalgia need.

They help so many through very tough times dealing with a hidden disease.  — Caressa

They give a lot of information to the community about fibromyalgia

Haulie is very inspiring and keeps me hopeful. She gives me the connectiin to others who suffer the same chronic illness so I know we are not alone. Haulie keeps a smile on my face with the motivational quotes, pictures and posts. I have learned more about my condition and symptoms through Voices of Fibromyalgia than I was informed by my many doctors. Knowledge helps us cope. Sharing helps us understand. Our community through Voices of Fibromyalgia keeps us strong and fighting for a cure. I am not alone. Haulie is enlightening and we are blessed to have her committment to our cause.  — Voices

Every day Haullie and the others inspire and inform. They do their best to keep us upbeat while fighting chronic health issues. Their efforts at informing everyone as to the disease while sharing first hand stories as to how to handle it are uplifting to say the least. They are there to answer questions as well as a sounding board most of the day - everyday. No one else understands or are there as much!  — Pamela

Always informative, not to mention, encouraging for those of us who must live with the pain of fibromyalgia on a daily basis.  — Cheri

Because Haullie and all the others are trying so hard to raise awareness for all of us suffering from Fibromyalgia! They're the best!  — B

A great place to connect with others, to show/receive support to/from others, to learn from all!  — Joyce

This page is encouraging, sympathetic, and offers hope to those of us who are survivors of Fibromyalgia.  — Voices

This group helps a lot of people with fibromyalgia by discussing issues and having group members answer questions to/from each other.

Haullie is very personable...very giving...and truly understands the daily struggles faced by people who have fibromyalgia She is very supportive of everyone and offers insights and alternatives in dealing and coping with issues that affect many of us.  — Joyce

I get most of my information, advice and support from this site and any other.  — paula

This page gives a lot of good advice, educating links, and really encourages those that suffer with Fibromyalgia.  — Mary

This group goes above and beyond to empower and give those who have Fibromyalgia a voice; and to keep us all communicating with each other in hope of one day taking the steps necessary to find a cure.  — Brenda

Finding this site has be very helpful for me, I now know I am truly not alone, I understand some of my symptoms better and know that they are real, they are not just in my head. I now have something I can show friends and family that can help them to see and understand fibromyalgia a little better.

everyday I suffer with fibro. To find the answers to the questions I have or to be able to explain to others what I have isn't easy. these folks make it easier on me and give me tips everyday as to how to cope with this. they allow me thru photos and graphics to help my other friends and family to understand what fibro is and how it affects my life without them I would be at a loss as to how to do this. thankfully with them I am not alone  — naomi

This page gives people suffering from fibromyalgia a place to talk and learn from other sufferers. Plus it's is a place you can say exactly how you feel and know that no one is going to make you feel bad but they will encourage you and empathize with you because they have felt it before. Very thankful for this place!!  — TINA

This group gives insight and knowledge to sufferers of Fibromyalgia in a manner that is supportive and not judgmental. I appreciate what they say as well as those who respond. The questions represent a cross-section of the illness. Normally I don't participate on Facebook, but since finding them on Facebook, I check them out every day. I feel more empowered. So many symptoms I accredited to other conditions were spelled out by the others. I've also remembered things from when I was a child that was undiagnosed or was given a different name. Thank you to the tireless workers behind this.  — Tommie

The persons who are behind Voices of fibromyalgia, Haullie, Stacy and Robby are doing a great job bringing awareness on an invisible disease that is so painful and goes with chronic fatigue that lets you with zero energy!! This disease has just been reconized recently as a real illness and not an imaginary one! Sharing their life experiences helps all fibromites to be connected, feel less alone and also to share how they feel in return and it certainly helps take the steam off on a daily basis. It's become a giant therapy group that is so important for hundreds of people who respond daily on each post. It has helped me cope with my illness,help explain what we are going through to my family and helped me become a stronger fibro fighter! They deserve this award of Health Activist Hero for their constant daily work although they are ill to make our lives better and encouraging all of our community. Thanks to all three of them!  — Voices

The persons who are behind Voices of fibromyalgia on Facebook, Haullie, Stacy and Robby are doing a great job bringing awareness on an invisible disease that is so painful and goes with chronic fatigue that lets you with zero energy!! I would like for them to see our recognition for all their efforts to help others through their site. This disease has just been reconized recently as a real illness and not an imaginary one! Sharing their life experiences helps all fibromites to be connected, feel less alone and also to share how they feel in return and it certainly helps take the steam off on a daily basis. It's become a giant therapy group that is so important for hundreds of people who respond daily on each post to become a stronger fibro fighter! They deserve this award of Best in Show for their constant daily work although they are ill to make our lives better and encouraging all of our community. Thanks to all three of them!  — Voices

The persons who are behind Voices of fibromyalgia on Facebook, Haullie, Stacy and Robby are doing a great job bringing awareness on an invisible disease that is so painful and goes with chronic fatigue that lets you with zero energy but they still keep a sense of humor in to it at times who help bring a smile in the aches!! I would like for them to see our recognition for all their efforts to help others through their site. Sharing their life experiences helps all fibromites to be connected, feel less alone and also to share how they feel in return and it certainly helps take the steam off on a daily basis. It's become a giant therapy group that is so important for hundreds of people who respond daily on each post to share their own experience, it helps me in my struggle! They deserve this award of Hilarious Health Activist for their constant daily work although they are ill to keep our spirits up and encourage all of our community. Thanks to all three of them!  — Voices

Is an open forum that allows persons with fibromyalgia to post questions and share answers we may not otherwise know. Daily inspiration to boot!  — Jess

This is a forum for so many people to speak to others get support have questions answered or pointed in the right direction . This illness is debilitating life altering and invisible to to the eye. To say how important it is to connect with people who understand and can relate is difficult but, I truly believe that because it is available lives have been saved and will continue to be saved. I don't say this lightly. So do they deserve my Hero Vote the answer is YES. Thanks for reading this

It has helped me deal with FM for a very long time. Support when I need it and information as well. I would be lost without it and feel very alone. The Cdn medical industry and Disability does next to nothing for this illness and having this group is a life saver. Literally.  — Voices

Voices of Fibromyalgia

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