NFL Player Pushing Fibromyalgia Awareness

NFL Player Pushing Fibromyalgia Awareness

If you or a loved one has fibromyalgia , let me suggest that you now have a favorite NFL football player.

His name is Dominque Easley, a defensive lineman for the New England Patriots. You may or may not know that he was a first round draft choice of the Super Bowl champions out of the University of Florida just a year ago.

He’s making news this weekend because he’s trying to raise awareness about fibromyalgia.

Easley’s 16-year old sister, Destinee, suffers from the disease. She’s had it since she was 11 (although it took a bit longer to actually diagnose).

“It’s when you have chronic pain all through your body,” Easley told the Boston Globe. “She’s had it since she was 11 years old. Sometimes it’s where you can’t get up in the morning and walk – two weeks ago she was in a wheelchair.”

“I’m just trying to raise awareness because a lot of people don’t know about it, how serious it is.”

Here’s the website he’s created (www.easleysawareness.com). He’s holding a football camp on July 26 in Medford, Massachusetts and will donate the proceeds to the cause.

As many of you know, May 12, 2015 was proclaimed Fibromyalgia Awareness Day and the theme promoted by the National Fibromyalgia and Chronic Pain Association was “Make Fibromyalgia Visible”.

Dominque Easley, or more factually, his sister Destinee, is helping with that.

“I’m fairly certain that I’ve had fibromyalgia since I was a teenager,” said Anna Flynn, a retired Houston area teacher who shared her story recently on the National Pain Report. “Doctors then didn’t know as much about the disease then, so my condition went undiagnosed.”

I’m so happy that Mr. Easley has decided to make awareness and education about fibromyalgia a goal. The fact that his teenage sister is suffering from it is a reminder that this disease can strike anyone at any time.,” she said.

Fibromyalgia impacts nearly six million people. It can manifest with chronic widespread body pain, moderate to severe fatigue, sleep disorders and disturbance and can result in psychological distress like anxiety and depression.

Recent research indicates that the disease burden on fibromyalgia patients is worse than it is for chronic pain patients without fibromyalgia. (Here’s a recent National Pain Report story on the topic).

There’s quite a bit of research on the disease. Fibromyalgia is now considered to be a lifelong chronic nervous disorder which causes chronic pain. Dr. Daniel Clauw of the University of Michigan presented those findings at the American Pain Society Annual Meeting in Palm Springs last month. (Here’s the National Pain Report story on it.)

“Fibromyalgia can be thought of both as a discreet disease and also as a final common pathway of pain centralization and chronification. Most people with this condition have lifelong histories of chronic pain throughout their bodies,” Dr. Clauw said.

 

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Authored by: Ed Coghlan

There are 35 comments for this article
  1. Angel Hullinger at 10:07 am

    I just want to say thank you!!! I suffer from this debilitating disease. There are days that, as a single mother, taking care of my 2 kids, is close to impossible. And all I hear is that I am lazy. I got a new Dr who called me an addict yesterday at my appointment and told me that bc I need pain killers, I’m going to end up on heroin. Even though I’ve never taken an illegal drug or even smoked a cigarette in my entire life. I am so sorry for your sister. Its heartbreaking for such a young girl to be riddled with such an awful disease. I’m so thankful you have gone above and beyond to bring awareness to such a debilitating disease. Thank you!!

  2. Lynn at 10:03 pm

    The author of this article incorrectly described fibromyalgia as a “nervous” disorder, however it is actually a neurological disorder. There is nothing at all about mental illness involved with fibromyalgia. Please be accurate when writing about this very difficult health condition that affects millions of good people. You don’t help our cause be using just a incorrect reference. Thanks for being more responsible and accurate in the future.

  3. Cerys at 5:46 pm

    So glad to see a real story, real advocate! Too many think fibro is a “take a med” and go on to lift heavy bakery flour bags and trays syndrome – from images portrayed in those pharma commercials for a fibro med. I think fibro impairment needs to be rated on a continuum bc being judged against “fibro standards” based on fibro patients still able to stay active is disheartening. Much more research and understanding is needed, maybe this NFL player’s efforts will help.

  4. Alicia Jackson at 2:49 pm

    I’m so happy to see someone helping the Fibromyalgia community and his sister to find a cure & make awareness. I’m a 27 year old disabled single mom of 2 struggling because I have a severe case of Fibromyalgia & Chronic Pain Syndrome while now losing feeling in my legs causing numerous falls & injuries. Its very hard to explain to individuals because our illness is invisible and deals with our central nervous system & is debilitating. Thank You Domique Easley for the support to your family & the Fibromyalgia Community. Most importantly never forget your not alone.

  5. Dena Erwin at 12:32 am

    Would just like to say THANK YOU to Dominique Easley for having the heart & compassion to bring awarness of just how much fibromyalgia can effect and disrupt life that do many take for granted.I was diagnosed when I was 18 and am 38 yrs old now. It has definitely been a very rough ride day by day. I pray that your sister recieves some kind of comfort soon, maybe we all will.. God Bless you Dominique for raising awareness for all who suffer from day to day with this horrible & painful disease…. God Bless you!!

  6. Amber M. Flowers at 9:26 pm

    Dominique I first want to let you know how sorry I am that your sister is a part of our Fibromyalgia family. No one should have to go through
    all their life, especially at such a young age. You’re an AWESOME Brother Dominique! I know Destinee Loves and Appreciates your support because I have a supportive brother too. As you very well know even though it is recognized (somewhat) now, people with Fibromyalgia have received and or lived with much negativity to say the least, that being said your sister is Blessed to have you and we, her Fibro Family are Lucky to have your support for Destinee shining a National Spotlight on FIBROMYALGIA …Thank You 🙂

    Sincerely Amber’s

  7. Pamela Jessen at 9:20 pm

    I have been living with Fibro for over 25 years now, as well as having two types of arthritis, and chronic fatigue syndrome, plus Type 2 Diabetes (on insulin). I haven’t had a pain free day in so long, I can’t even think back that far. The hardest thing is that because Fibro is an “invisible” disease, people can look perfectly fine, while being in full body pain at the same time.

    Everyone says to exercise and that will make the body feel better. Well, unfortunately for us Fibromites, our bodies process exercise as simply more pain. There is never a “refreshing” benefit for us. For a lot of us, if we exercise for example on Monday, we’ll be laid up in major pain for Tuesday and Wednesday. It’s a never ending battle, and ones that more medical professionals need to be aware of. We also never have a good refreshing sleep…so our bodies never have time to heal that way.

    Fibromyalgia is not “all in our heads” – this is real. The pain is real, the frustration is real and the way our lives are affected in terms of jobs, relationships, hobbies, etc. – that’s real too. We give up so much in our lives, not voluntarily and it’s hard to see everyone around us living a fun and active life. We’d love to do that too, but until there’s an actual cure for Fibro…we just continue on the way we are, and pray for a better tomorrow.

  8. Jane bishop at 6:51 pm

    I want to say thanks soooo much for bringing awareness to fibro its going take people like you to get this on a roll to get help for all of us that suffer sooo bad my life is nothing I FEEL SO BAD FOR THE LITTLE YOUNG ONE TO HAVE IT I WOULD TAKE HER PART TO IF I COULD BECAUSE SHE’S SO YOUNG I SUFFER SO BAD that there’s days and weeks into month I think I can’t go on no more but I have a wonderful husband a 2 GRANDDAUGHTERS that I love that’s why I hate to see kids and young people have this I can’t imagine ,when my granddaughters have a bad cold I feel so sorry for them I get up all night long trying anything to help them anyway I can make them more comfotable so I can’t imagine one of them having the pain I have I pray god will touch her in all ways and all the people ESP the young but everyone there’s no way anyone but the one that got it know what we go though with we can’t explain it and no one understands so there’s no use talking to no one that’s not go it I PRAY FOR HELP TO FIND SOMETHING THAT WILL HELP US WITH THIS HORRIBLE PAIN !!!!!! THKS SO MUCH FROM BIG DOLLYWOOD PIGION FORGE TN .

  9. Goswellen Arellano at 7:16 am

    Fibromyalgia is not a real medical condition. First they usually do labs and imaging just to make sure there is nothing obviously wrong, then they pull out a survey. The survey asks yes or no if you have pain in vague widespread pain zones like upper arm and chest. If you say yes to three even a split second in the last week you’re good. Then it asks about waking unrefreshed, fatigue and cognative issues, which are all often caused by pain. If you say all of these are severe you have fibromyalgia. People need to be aware that this is not an actual medical condition. Doctors use it to say that they think it’s in your head. I hope people are able to figure out what’s wrong and get real treatment instead of numbing themselves up with Lyrica.

  10. Revamped Lyons at 7:07 pm

    Fibro myalgia is very hard for people to understand while you may look great but your body is in excruciating pain neck,back,knees, arms, swelling of hands and feet I was on Lyrics it helped a lot, now it’s pain management, physical therapy,changes to my diet is helping I’m eating more leafy vegetables, cut out red meat, drinking plenty of water, what ever my nutritionist reccommends

  11. Stacy Perrodin at 6:07 pm

    I also have been living with fibromyalgia for 10 years and I can’t imagine how she handles it. My days or rough but you still need to continue please don’t give up that’s your worst enemy. I also always tell everyone I’m fine but inside I know it’s a lie. There’s many times I want to cry when I get home. But I try to wait and break down once my kids or asleep because I don’t want them to know that the littlest thing of bring them somewhere or doing something with them causes so much pain. Thank you for letting the world know. My prayers are with you and your family. I take each day as a penance and give my prayers to someone who may need it more than me
    Your friend
    Stacy

  12. Catie Honeck at 10:33 am

    I’ve been SUFFERING w/ Fibro for over 15 yrs! First time a recognized figure has not only a website but is holding a football camp and donating the proceeds!!
    The disease was finally diagnosed in 1993 -that’s 22 yrs without this kind of attention. I thank you, Dominique Easley for having the compassion and love for your sister, Destinee’s life to speak out!! You will affect so many of us and I will always be grateful!! Count me one of your biggest Fans -and may GOD BLESS!!
    Gentle hugs to Destinee.

  13. Gracie Gean Bagosy-Young at 9:26 am

    Thank you for speaking out on behalf of your sister!!! While the world should be listening to ALL of us that are suffering through chronic pain, sometimes it takes a big name to step up and gain some attention for our community. And that is exactly what we are….a community! We stick together! We are all on this journey together! We genuinely appreciate your help in bringing light to this. GG

  14. Virginia Krubsack at 6:47 am

    I Would Love To Follow Dominique Easley‼️ I Just Became His FAN‼️ BUT, I’ll Also Continue To Be Die Hard
    ” PACKER FAN ” ☀️

  15. Margaret Dawson at 5:07 am

    Thank you for your support. I’ve had fibro and rheumatoid arthritis for more than 3 years now and hope with your help more awareness for help and a possible cure is possible. Thank you and prayers for your sister who is much too young to suffer this terrible condition

  16. John Quintner, Rheumatologist at 11:37 pm

    Dear lynnea1. I am sorry to hear that your former husband did not understand the true nature of your condition. In brief, our hypothesis is based upon the similarity between the “sickness response” seen in animals and those symptoms that are clustered together as “fibromyalgia” in humans. In fact, every living organism on this planet is, through evolution, capable of producing responses to factors in its environment that it perceives as threatening to its existence. These factors are called stressors. In humans, stressors can be physical and/or psychological. Our systems of stress response are tightly regulated by stress response genes that switch on promptly to protect us from threat and help us repair tissue damage. Molecules called cytokines are released when stress response systems are activated. Animals (e.g. dogs and cats) then don’t like being handled. They do not eat very much, they are listless, stop grooming themselves, and do not seek the company of other animals. In humans, we suspect that the same cytokines are responsible for complaints of feeling unwell, widespread pain, tenderness, fatigue, sleep disturbance, mood change, brain fog, memory loss, appetite disturbance etc. When the threat that triggered the response is no longer present, these systems usually switch themselves off and the symptoms resolve. In those with fibromyalgia, we suggest that the underlying problem relates to dysregulation of these stress response systems. They are no longer able to switch themselves off. Increased amounts of cytokines are produced, causing the distressing symptoms to persist. If, as we think, the problem really resides within the control mechanisms (i.e. stress response genes), then treatment directed at individual symptoms is unlikely to help – which is often the case. We are now beginning to understand what can go wrong with the stress response genes. This is an area of research called “epigenetics”. I think that further advances in treatment of fibromyalgia will come from this direction. I hope that this explanation is helpful.

  17. Tina Anderson at 11:17 pm

    Thanks so much for wanting to bring awareness to this disease. I was told I had this since 2009 and I know the pain and all that goes with this. I am praying for your sister because I am 47 and she being so young it has to be so much harder on her and your family. I will be keeping your sister and you family in my prayers and again thank you so much this is so needed. Tina

  18. Jennie Paulette at 10:15 pm

    I was first diagnosed with FM back in the mid ’90’s. I have been living with JRA since I was 14. I have a total of 9 forms of arthritis. I’m glad that more awareness is being given to FM. FM is a real disease and is not in our heads! Thank You Dominique Easley for bringing awareness to FM. If we could get Bob Kraft and the Patriots onboard it would be even better. Destinee remember one thing, never give up! Every day is a battle, but you can win that battle!

  19. Eva Huerta at 9:54 pm

    Thank you for supporting Fibro & showing awareness on behalf of your sister and the millions that suffer with Fibro. God Bless you and your entire family. Fibromyalgia is very painful to live with 24/7. Amongst with all the other symptoms that creep up throughout the years. You are a blessing.
    Thank you from Eva Huerta
    Falfurrias,Texas

  20. Nancy at 8:45 pm

    Im so glad that others understand what its like to sit up first thing in the morning and not be able to hardly walk into the next room. My whole body hurts. When I first started feeling this way the drs thought it was all in my head and that I was trying to just get pain pills. I wish I didn’t have to take meds cause a lot of them make me sick so I deal/cope with the pain as much as I can before I break down and take something. Its horrible having people look at you and not understand. I just lost my husband last year and he was always there to help me. Now Im on my own and learning to “cope” with this by myself. Thank you for bringing awareness to this horrible disease.

  21. Gary at 8:33 pm

    Thought this was some very a interesting and thought provoking discussion about I found very informative as two of my family members suffer from this malady.

    Obstetric epidurals and adhesive arachnoiditis.

    It has been suggested that developing adhesive arachnoiditis after an obstetric epidural pain block is a very rare event, with less than 1000 cases ever diagnosed.

    Yet when we look at the adhesive arachnoiditis community, women with the disease are far more common than men.

    Why is that? Dr. Antonio Aldrete suggests that this is because 2/3 of women in childbirth opt to have spinal or epidural anesthesia, and he estimates that 4% develop adhesive arachnoiditis as a result of complications from epidural anesthesia.

    If that is true, there are many woman suffering from this complication. With an estimated 70,000,000 children born in the last 20 years, this could result in 2,800,000 women who were totally disabled with this incurable disease, that is IF the rate is 4%. There are other sources that point to higher injury rates.

    In addition, when researching common symptoms that women experience after epidural anesthesia (such as burning leg pain, which is consistent with arachnoiditis), then medical professionals need to ask some serious questions.

    There is another disease that made an appearance in recent years, which for some unknown reason, affects more women that men.

    Do you know what that is?

    Fibromyalgia

    The National Institutes of Health estimates that 10,000,000 people have been diagnosed in recent years, and at least 80% of those diagnosed are women.

    Could it be that many of these women actually suffer adhesive arachnoiditis as a result of an epidural during childbirth, and many have been misdiagnosed by a medical community afraid to admit they have affected a significant portion of the US population?

    Now that there are 100 million Americans suffering chronic pain, the indicators are pointing to significant levels of injury that are being dismissed.

    The spinal cord and cerebral spinal fluid flow system is the most sacred space, and too many doctors are sticking too many needles in this sacred system within the human body. It is time to question these outdated, barbaric procedures that are leaving millions of Americans permanently disabled.

    MRI studies are not typically ordered after childbirth, and even if they are, there are not many doctors in the U.S. who are trained (or willing) to diagnose adhesive arachnoiditis because it points to their culpability.

    No one could hide that degree of disability – or could they?

    Arachnoiditis Survivor
    Arachnoiditis Society for Awareness and Prevention A.S.A.P.
    Lolo, Montana

    Sources:

    http://abcnews.go.com/Health/epidural-steroid-injection-risk-incurable-arachnoiditis/story?id=17552260&page=3

    http://www.healing-arts.org/mehl-madrona/mmepidural.htm#medical_risks_epidurals_footnote30

  22. Selina G Mongo at 7:19 pm

    Hello Dominique & Destinee,
    First I would to send Destinee warm hugs and support from me and the many of us who suffer with this Beastly Invisible Illness…as I say it is not invisible to us it makes its presence in our lives everyday. Warm HUGS, Destinee!
    Thank you Dominique!!!!! I/we appreciate you taking out of your busy life the time and care to enhance AWARENESS for the Cause of Fibromyalgia. And thank you from the heart for believing and supporting your sister Destinee; it is more powerful than you know!
    I too am a sufferer for at least 28 years! I have started an AWARENESS facebook group called “FIBRO & INVISIBLE WARRIORS “WE ARE VISIBLE” PUBLIC AWARENESS GROUP” (https://www.facebook.com/groups/sandsfibro/397511670440988/?notif_t=like) and also a facebook page telling my story of how I am fighting “Fibro” called: “Selina Phyghting Fibromyalgia with Phytozon+ (https://www.facebook.com/sphfibrowphytozon) it is the supplement that helped me in so many ways fight this illness daily (though I am not cured) my life have improved greatly since July of 2014 and It is my hope that you and Destinee and hers physicians can find something to improve her well-being. This is not a Syndrome or Illness I wish on anyone, including my enemy….it is altogether dreadful!!!!! We have lived in shame and insults for most of the existence of this condition surfacing…because the many of the professionals and friends and family just think we are complaining, lazy and crazy and seeking attention or simply put hypochondriacs…because of the invisibleness to them, but not to us…
    Well thank you very much from the depth of my heart (our hearts) Dominique for creating more AWARENESS and supporting your sister Destinee. May God Almighty and His Son bless your journey for AWARENESS & FUNDING! (I too am starting a fundraiser with a Group & Company that sell T-Shirts (but, it is a slow process because I am along and have many other issues pressing…but, I am determined)

    Thank You Sincerely
    Selina

  23. Angie Hall at 6:42 pm

    Thank you for speaking out and sharing for awareness. My thoughts and prayers are with your dear sister. I suffer and live with this horrible illness. I was diagnosed in 2013. I have said since that time we need more awareness drawn to out fight. Thank you!

  24. christine simpson at 4:04 pm

    Prayers for your sister and much appreciation to you for bringing this horrible disease to peoples attention. I have had Fibromyalgia for 9 years now and it is just horrible. So sad for someone so young to have to handle this disease.

  25. lynnea1 at 3:57 pm

    Thank you for speaking out! I lost my husband of 20 years because he decided that, after all these years, I was lazy & just wanted to stay in bed all day. The heartache and confusion that set in afterward has been devastating.

    Dr. Quintner, how about posting an article we can understand? Your argument is invalid to me because I dont know what your point is.

  26. Kem Dean at 3:02 pm

    Thank you Mr. Easley for your support. I am so sorry to hear your sister suffers from this at such a young age. My daughter is 14 and my fear is that she will end up with Fibromyalgia. Again Thank You.
    God Bless you & your family.

  27. natalie at 3:01 pm

    Hi Janet , I would love to know how you are in remission for 15 years if there is no cure to this horrible illness, how did you heal yourself? X

  28. Beverly Kinnard-Bing at 2:15 pm

    Thank you so very much Dominique, for bringing more awareness to this painful, chronic, and invisible disease. I’ve been diagnosed three years ago, but I believe I’ve had it since 1992. I struggle daily with this disease. I pretend I’m doing fine when I’m around people, and when I’m alone I cry. I try not to tell anyone only because I don’t want to hear the comments like ‘It’s all in your head’ ‘You need to push through it’ ‘You’re a hypochondriac’ etc. it’s a blessing that Destinee have your support. Thanks for all you’re doing to bring awareness to this disease.

  29. Sue M (Canada) at 1:53 pm

    I live with Fibromyalgia myself and I agree that we all need to do more to bring awareness to it. Many suffer in silence. Thank you Dominique Easley for talking about it, and your sister, and thank you National Pain Report for writing the story!

  30. Myra Nelson at 1:28 pm

    This give me and my mother and my support groups on Facebook a glimpse of hope! Please keep the awareness going! It’s a hard life to live. Let alone being so young. So much goes along with Fibromyalgia. Depression, anxiety, loneliness are three that I know she understands. I pray for all who have Fibromyalgia. Wish for more people to see this is not a laziness issue. It’s TRUE pain and extremely debilitating. Thank you!!!!!! Myra

  31. John Quintner, Rheumatologist at 1:09 pm

    It would help me to understand the point he is trying to make if Dr Clauw would explain clearly what he means by the phrase “a final common pathway of pain centralization and chronification”. They do not make sense. Readers of National Pain Report should also be aware that not all rheumatologists accept that fibromyalgia is a discrete disease and that it is “a lifelong chronic nervous disorder”. An alternative explanation is available that offers more hope to those who have been awarded the fibromyalgia label: http://www.fmperplex.com/2013/02/12/evolution-stress-and-fibromyalgia/

  32. marty at 11:35 am

    I can’t tell you how happy this article made me. And it has nothing to do with The Patriots being my favorite team. Here’s a young guy that GETS it and is putting himself out there to make more families aware. To me he is a hero

  33. Terri Lewis at 10:01 am

    Yay for Dominque Easley. Children and teens with chronic pain are the most under represented and underserved population ever. They are the most likely to be misdiagnosed, improperly treated, and victimized by their characteristics of race, age, and gender. School is an ordeal and pediatric care is almost nonexistent. How can we help this guy?

  34. Jennifer Martin at 9:14 am

    THANK YOU! I ALSO SUFFER FROM FIBRO & HAPPEN TO LIVE IN STATEN ISLAND & AM A HUGE PATRIOTS FAN . 🙂

  35. Janet Komanchuk at 8:49 am

    Good to hear Dominique Easley speaking about this invisible, chronic and painful disease that affects so many. I am one of the fortunate ones—in remission for nearly 15 years thanks to Joy of Healing. Love and blessings to Destinee and everyone else in pain.