New Study Supports Accuracy of Fibromyalgia Blood Test

New research results have upheld the validity of a blood test that can diagnose fibromyalgia, according to the chief executive of a Santa Monica-based company that began offering the test earlier this year.

“We’ve proven that fibromyalgia can be diagnosed unequivocally through this test, a test that remains highly sensitive and specific,” said Bruce Gillis, MD, founder and CEO of EpicGenetics.

512px-USMC-110316-M-OU013-004The FM test looks for protein molecules in the blood called chemokines and cytokines, which are produced by white blood cells. Fibromyalgia patients have fewer chemokines and cytokines in their blood, according to Gillis, and have weaker immune systems than healthy patients.

But critics said the blood test was unreliable because the same immune system biomarkers can be found in people with other illnesses, such as rheumatoid arthritis.

The new research, which was conducted by EpicGenetics, involved nearly 500 people. The blood test was given to 160 fibromyalgia patients, 100 lupus patients, 98 patients with rheumatoid arthritis and 119 healthy people who served as a control group.

Over 93% of the patients who had fibromyalgia were correctly identified by the blood test, according to Gillis, and over 89% of those who did not have fibromyalgia were correctly identified.

“What we found is that the biomarkers do not occur in other rheumatologic diseases, it’s only in fibromyalgia,” Gillis told National Pain Report. “I cannot tell you if these biomarkers are the cause of fibromyalgia or if it’s a byproduct from fibromyalgia. We don’t know that yet. But these findings are the first objective methods to prove a patient has fibromyalgia.”

The National Institutes of Health estimates that 5 million Americans suffer from fibromyalgia, a poorly understood disorder characterized by chronic deep tissue pain, fatigue, headaches, depression and lack of sleep. There is no known cure and many patients go for years before being diagnosed – often dealing with skeptical doctors and family members who doubt the severity of their pain.

“The test does two things. It doesn’t merely give you the diagnosis of fibromyalgia, it legitimizes the diagnosis of fibromyalgia,” says Gillis.

“It proves it’s a real disease. It’s not a bogus affliction of neurotic, crazy, hypochondriacally people. They really are sick. There’s something wrong in their immune system processing.”

Much of the new research was conducted Daniel Wallace, MD, a rheumatologist at the Cedars-Sinai Medical Center in Los Angeles and a professor of rheumatology at UCLA. Wallace, who has written a number of books on fibromyalgia and other autoimmune diseases, is on EpicGentics scientific advisory board.  He could not be reached for comment on this story.

Dr. Gillis says the research results were well received when he presented them last month at the annual meeting of the American College of Rheumatology in San Diego.

“It now I think eliminates the last criticisms by any naysayers regarding the test. It says that we listened to their criticism and we approached it in a direct fashion to answer the question,” Gillis said.

But some critics remain.

“I wish Dr. Gillis well in his quest to establish even a shred of scientific credibility for his test, which has been vitiated by what Sir William Osler referred to as ‘the corroding influence of mammon,’”  wrote John Quintner, MD, a prominent rheumatologist in Australia, in an email to National Pain Report.

Quintner has been skeptical of previous research conducted by EpicGentics. So has Fred Wolfe, MD, a rheumatologist who has called the fibromyalgia blood test “junk science.”

Critics are waiting for the new research to be published in a peer reviewed medical journal. Gillis says a report on the new study is still being written and he hopes to get it published in the next few months in a “highly regarded, well respected, peer reviewed journal.”

The FM test kit costs $744 and is not covered by most insurance companies. Blood samples are shipped to an EpicGenetics laboratory for testing and results are usually available in about a week.

Tags: , ,

74 Responses

  1. Bobbie says:

    Dear Angie:
    DO Not Give Up on finding the right doctor for you! Even if it is someone out of your medical coverage network. If you think that Cymbalta and/or Lyrica would help you, try contacting them directly about using their drugs for your fibromyalgia and depression. If you are not seeing a counselor, please do find one to help you through your illness. Or if there is a fibro support group check into it; it would most likely help you find some good resources.
    I wish you well. You are your own best advocate.

  2. angie kenney says:

    This is all fine and great but what God is the test when the health community still will not or refuses to treat the symptoms. I have had the symptoms since I was at least 26 yrs old. I am now 41, and finally officially diagnosed last year by my Rheumatologist. It has done absolutely nothing for me! He has done nothing! He hasn’t listened to a single thing I’ve said. The only med he had been willing to ever put me own has been methotrexate, which nearly killed me! I cannot take DMARDS or biologics because I’ve had MRSA in the past, so he refuses to try any medications. I’ve tried to find another doctor but the choices have been very limited. I feel like they think I’m making it up or looking for pain meds, they treat me like a drug seeker. I was always a very active outgoing person and the frustration and depression is taking it’s toll. I get tired of explaining it over and over constantly. I have to records sent over, I bring them with me, I type up a history and hand it in before they see me. They never even bother to look at it. It’s like we are an inconvenience to be there, so why constantly put ourselves out there. I hope this test helps ours, but here in the midwest… It’s not likely to help any time soon. :(

  3. Anita Friedenberg says:

    I have much to say, but right now at 5:23 p.m. I am falling asleep, still in great pain from the Fibro and my Migraines which are severe, and the daily headaches I also suffer from. My own family thinks I am a lazy person. That in itself hurts me very much. I always was able to give 125% or more to whatever task I handled. I have so much to add to these comments. I just right now am so tired, I can’t. I have some unusual ideas about where the Fibro initially comes from, also. I have suffered from it since 1995, and actually a bit earlier when I was working in the 1980’s and developed Carpal tunnel from all my computer work. From there, it spread, until I laughed at Carpal tunnel when I became more and more in severe pain with my Fibromyalgia. Thanks to God that the first Neurologist who tested me, said I had all the symptoms of Fibro, and every trigger point was extremely sensitive and were all Fibro trigger points. He also had some explanations of my Migraines and how they operated. I will write later, perhaps some of my comments will be helpful for others. So, I actually have suffered immensely for almost 20 years, and right now I am a bit frightened at how my health is quickly declining even faster and even more pathetic. Anita Friedenberg

  4. Terri Palmer says:

    I was part of Dr. Gillis’ study. I had been diagnosed with Fibro about 5 years prior to being a part of the study. I was tested on two different occasions (during the study) and both were positive for Fibro. I tried to read all of the comments above, but just got tired. I also have Lyme Disease. Reading many of the comments above makes me wonder if some of the people commenting have undiagnosed Lyme Disease. I believe that Fibro is always accompanied by other autoimmune disorders. By the way, I live in Southern CA. None of the doctors I have seen since the test results were published has even heard of the test. I mention that because Dr. Gillis was in Santa Monica. They are also extremely unaware about Lyme Disease.

  5. Sahara Diana says:

    Greetings All,
    Originally diagnosed in 1994 with rheumatoid arthritis, I was treated with Methotrexate for two years. It wreaked havoc on my liver, and I was told I’d need a transplant in 3-4 years. I finally realized it was time for me to participate in my health, that I was my own worst enemy. At 305 pounds I could no longer even walk up the stairs to my apartment. I found a new Rheumatologist who diagnosed the FMS and talked straight to me. I started with water exercise until I built enough stamina to start walking. Paying close attention to my body I found that stress was a huge contributor to the flare-ups. That’s when I discovered meditation, yoga and Reiki Japanese Healing. Today I’m taking Lyrica 3 times a day, am 135 pound lighter and have the FMS relatively under control. The really bad days are down to 4 or 5 a month, and I feel like I’m my best defense. I say “Be proactive, not inactive”. Blessings and healing energy for you all. Namaste. ~Sahara

  6. MRK says:

    Well, if I am crazy which I KNOW I’m not, I’m in good company. Or we must be the most screwed-up young, middle age, and higher must really be the crazy ones.

  7. Emmie Gorrell says:

    P.S. I, too, had a mother who at one point in her life, was told she had Fibrocitis. Hers wasn’t nearly as severe as mine was, thank goodness, but she had enough health problems to deal with. She was bedbound for the last three years of her life, went to bed and never got up again, and everything hurt.Thank God I have drs. who all believe in these diseases(FMS and CFS) and that keeps us from even really thinking about moving to another place. Plus, I wouldn’t be able to ride far and wouldn’t be able to help much with packing. Take good care, Marie and the folks who don’t yet have drs. who understand. I told my dr,the last visit, that if I had to live like this, I didn’t think I could stand it, and she told me that they were going to fix me as much as possible, to help me as much as possible.Which is why I’ve been getting so many tests lately.

  8. Emmie Gorrell says:

    I went to one of the most reputable rheumatologist in the entire metro area where we live and he examined me, and told me I had one of the worst cases of FMS that he had ever seen. I didn’t just have the pressure pt. pain, I had pain in every cell, and it has only gotten worse as it’s continued for these last 15 yrs. I also have CFS and don’t believe it’s part of FMS. I can tell which illness is predominant on any given day, and many,many days, they both are. I have tried everything to get well and nothing works. I think I may have gotten some toxic DNA from my father, as he was a Chemical Engineer in the Army, during WW2,and taught the troops about all the various toxins so often used as weapons.My father got early onset Alzheimer’s, and he had been one of the most brilliant people I have ever known. I so wish he were here with his clear brain, and could give me the feedback for what he thought when all the chips were in.It took me FIVE years to get Disability because my case had to go to the Federal Court in Fairfax, VA, and it takes them two years to process your case, as they have so many cases to go through. They totally discounted and disagreed with the Hearing Judge, and had pages of things that he had done wrong. I called an ace attorney to represent me as this was my last chance, and he figured out that I had left teaching after 25 yrs., which I could’ve done, anyway, w/o going thru all of the disability game.He also knew to ask me yes/no questions, as I’d get so confused by the questions, that I couldn’t answer for a very long time, and for the first time in my life, I was found to be not credible. NO one here had heard of Fibro or CFIDS/ME at that time. The attorney who won the case for me was terrific, and he used to be a hearing judge, himself! I get sleep and wake up for awhile, then have to get sleep, then wake up for awhile. To go to a dr’s appt. is an all day affair for me. And I’ll be completely wiped out for the rest of the week. I suspect that there are governmental trials going on, and Fibro does seem to occur in clusters. I won’t even put in a vote to win the HGTV home, because it’s on Lake Tahoe, which is where the first group of people had CFIDS/ME. I have lost most of my friends, and I don’t really blame them, because I can’t get out and do anything. I was born sick, inside and out, couldn’t keep food down, and didn’t get to develop an immune system, by being so sick the first six weeks of my life. I also have some strange orthopedic issues, that remind me of kids who have inherited those types of things at birth. I no longer wait for a cure or even treatment to come, as we’ve gotten our hopes up so many times, only to have them crushed. It is very difficult to live with these illnesses, and when the pain is so severe that I don’t think I can stand it, I wonder how in the world I will be able to live out my life, as that severe pain is generally with me. All over.Thank God I have a terrific husband, who is so willing to help in any way he can. He is a true gift from God. When I first got sick, I made the rounds and was tested by different drs. at different hospitals, and no one knew about Fibro. My then orthopedist yelled at me one day, because he yelled that he had told me he didn’t know anything about treating FMS. Then, my neurosurgeon brought him in to help with a badly needed spinal fusion that took 14 hrs. And the yelling doc came and apologized to me! Jacqueline, I just read your post, and I, too, have spinal stenosis, to the pt. that when they tried to get any fluid to rule out MS, not one of the drs. who tried for about an hr and a half, could get the needle between any two of my vertebrae. No disks in this back. My regular dr. was bowled over when she saw the x-ray, let me tell you!! I’m currently(after 15-16 yrs) having nerve function tested, we go for the results tomorrow-I know already I have Carpal Tunnel Syndrome, which my mother had, and it was very painful for her, and I already know that there is nerve entrapment in my left arm, and sensory neuropathy in my back. There’s a lot more, I know, but the dr. will talk with us tomorrow. I’m so sick of drs. even when they help, because I feel appointed to pieces. My dr. saw an x-ray of my back, which she’d seen before the fusion, and was concerned about thinning of my bones. I went for a density scan and was ok, no osteoporosis, but I know I have osteo-arthritis in this body, too. I lost my job after I tried to hang on till the school year’s end, all my drs. were telling me to stop at Christmas, don’t go back, and naturally, I didn’t listen, and by the end of April, I went to work one day and couldn’t move.All I could do was cry and cry and cry, over lots of things, including leaving my kids, I couldn’t care less about leaving the administration, the overwhelming fatigue and pain every am when I woke up and tried to get ready for work. I cried every single morning, because it hurt so bad. Take good care, all.

  9. John Quintner, Physician in Pain Medicine says:

    @ Kim. When canvassing solutions to complex health problems, why not throw in some of the old favourites such as reflexology, iridology, acupuncture, colonic irrigation, ear candling, Bach flower remedies and, for those who are partial to having needles inserted into their anatomy, you could add the latest pseudo-scientific fad – Neural prolotherapy (or “sugar-coating your nerves”)?

    I know this is said with tongue-in-cheek but there are many people who pay good money for this “treatment”.

  10. Ina says:

    Having new diagnostic tools is good, but I am more concerned with coping tools. I was finally diagnosed in about 2000, but had been searching for answers since a car accident in 83.
    Another accident in 2012 really kicked my fibro into high gear (no physical injuries, but my brain has turned into scrambled eqqs) I’m not sure what is the worst, intense, never relenting pain, fibro fog, lack of sleep, or just being forced into isolation because it it too much trouble to explain why I seem to be “crazy”. I’ve already tried every recommendation with different levels of success.
    I think I just wanted to vent here, partly because I knew I would be understood, and partly because there is a remote possibility that someone has a magic wand. If you do I want to rent it for a while.

  11. Kim Knight says:

    What does it matter if you can see it in a test or not, if you don’t know how to deal with it? Why does the scientific community spend so much time looking for the problem when the solution is already here? Multiple therapies including Mickel Therapy, Lightning Process, Advanced Clearing Energetics can all resolve fibromyalgia. Wake up world and start focusing on the solutions WHICH ARE ALREADY HERE for everyone to take advantage of.

  12. Melinda Curry says:

    My story is similar to Maryanne’s Rheumatic fever at 5, 6 and 7. Severe pain and joint inflammation for years with no RA only high sed rates. Various health issues with no explaination or diagnosis. Just suffered until recently because I was tired of being called a hyperchondriac. Glad to see that some of my “insanity or need for attention” is finally being recognized by someone. If this were imagined or otherwise I would have been smart enough to imagine a cure and not be in so much pain.

  13. S Davidson says:

    I have been diagnosed with FM and I do take the Lyrica occasionally. I suggest that everyone get their Vitamin D3 level checked at the very least. Vitamin D3 (the three is the most important part) is not actually a vitamin – it is an ESSENTIAL hormone for energy and muscle health. If your levels are low it causes all kinds of havoc with almost every system in your body- especially the muscle and skeletal systems. We absorb it from the sun but in the past few decades we have slathered ourselves with sunscreen and don’t spend enough time outside. The darker your skin tone the worse it will be for you as you don’t absorb the vitamin D3 as efficiently as someone with lighter skin. A friend had hers checked after complaining of extreme muscle & joint pain and an inability to get a good nights sleep. Her level was 9 (acceptable range = 30-80)!! I drink about 2 gallons of milk a week, eat cheese sticks for snacks plus a daily multivitamin that had calcium. Mine level was 19. They give you prescription strength Vitamin D3 for 8 weeks (once a week) and then you just continue to take over the counter D3 that is very inexpensive. It will change YOUR life! Please do not attempt to self diagnose (although taking Vitamin D3 @ 2000 IU’s would be OK). Go to the doctor and ask for your Vitamin D3 level to be tested! It could absolutely change your life and is not expensive (the test and the cure are both inexpensive). LOW LEVELS OF VITAMIN D3 CAN ALSO CAUSE ANGER AND AGGRESSION ISSUES!! Get your Vitamin D3 level checked!!!!

  14. John Quintner, Rheumatologist says:

    @ maryann. Yes, it is indeed an uphill battle for many people in pain. But the more knowledge you have, the better able you will be to stand up for yourself in what otherwise can be an unequal power struggle.

  15. maryann kelly says:

    dear dr John Quintner, doctors in new york do not want to be educated. i started working for docs when i was 15 yrs old in the 60’s after school and went on to become a lab tech. worked for docs for years. if you try to tell intelligent to them they dismiss you as a hypocrondriac. i am too tired to try anymore. going to a doc now is my worse nigthmare.

  16. dianne h. says:

    i have been told i have fibromyalgia since 2000 looking back i believe it started a couple years before i take very little pain meds my dr. put me in aqua therapy a few years ago i have found that swimming or just walking in a pool 3 to 4 times a week helps alot and a few minutes in the jaccuzi is very relaxing sleep isnt a major issue anymore

  17. John Quintner, Rheumatologist says:

    @ Maryann. No, I do not know any such person in the Bronx. The best advice I can give you is to explore the website and, until you have understood the evidence base, stay away from doctors (and do not listen to those who claim to be “experts” in Fibromyalgia). In the current state of knowledge, there is no cure. What we do know is that drugs alone are not the answer.

  18. maryann kelly says:

    thank you dr.Quintner, but i was wondering if you knew anyone in new york city, i live in the bronx who would be helpful with this condition.

  19. I have SUFFERED with fibro since 1999 after an auto accident that was thought to be mild but soon learned I had more injuries than thought, torn esophagus from the seat belt, knee cap knocked off, whip lash which was the 1st thing cause my neck was hurting so bad but the pain would NOT go away. After surgeries to fix the knee and esophagus the pain kept getting worse. I was thought to have kidney stones but soon the urologist realized there was more and was found to have IC which is ulcers in the bladder. For 2 yrs I never slept more than 20-30 minutes I had to urinate all the time and the pain from the bladder spasms was like being 9 mths pregnant and the baby about to fall out. I was told by my urologist I had auto immune things going on In the end I had Fibro, IC, IB and chronic fatigue. I had an inter stem implanted in my hip to help with the bladder spasms my unit wore out after 5 yrs they had said it would last 12-15 yrs I am on year 6 with the 2nd one and pray I don’t have to have a new one soon. My 1st doc that got fibro was an internist and the reason she got the auto immune diseases was her husband had them he ended up having to have a kidney transplant she was WONDERFUL she got my pain under control and we worked til we had it low as I could go. She left and a doc who came in to replace her took me and she said just keep her pain managed like this and he did and I have been fine that was 4 yrs ago he has no left and NO doc in our town will take me since I take a controlled drug they don’t want the “problems” with controlled substances is what I am told. I refuse to go back to being a home bound patient suffering with pain 24-7 my pain meds have given me a some what normal life I can go do some things I have learned my limitations. I have never abused my meds I take them like clock work every 12 hrs and my pain is some what controlled NEVER am I totally pain free but I manage. I missed so much of my children’s functions when this began. I would LOVE not to have to take this medicine but it makes life bearable that is all. I am so thankful for that. I finally found a doc but he is out of town so that is what I didn’t want to happen my prescriptions have to be picked up since they are controlled so every month I will have to drive 60 miles round trip and that is expensive with gas. I am so glad they have found this new test but if insurance will not pay for it and it is so expensive what good is it going to do most patients I know I have fibro and I even went to a highly respected teaching hospital Duke in NC to see if they could find something else wrong with me I didn’t want to have fibro I even didn’t believe in it. The doc there said he knew I was a type A personality and was always on the go, was involved in everything, made sure my kids were involved and spent my life working, volunteering, hauling kids from here to there and if I didn’t go home quit my 60+ hr a week job that was stressful and get my life under control that I could manage I would end up with completely bed ridden and then possible death because my body was screaming now to slow down and I had to listen. I don believe fibro is genetic I have been told my great grandmother had something what they didn’t know and when I got sick no one was alive that could even answer questions they said she was bed ridden and was for many years and when someone even touched her she would cry in pain so I do believe it came from my genes. I also was told mono had some link I had it numerous times and my son has too and he says now he hurts in his joints when it is cold and damp I fear I have passed these bad genes to him possibly and it scares the HELL out of me I could be the one who gives him this horrible way of life if he does get fibro. I do hope all those mean ugly hateful docs who said it was all in my head and those of the others too will get theirs paid back when they find out this stuff is very REAL I know how real it is every day of my life. Thanks to the docs and medical personnel who have worked to prove that this is a real disease that we are not a bunch of crazy lazy people. Thanks to you all…………..

  20. John Quintner, Physician in Pain Medicine says:

    @ maryann (and all others with similar sad stories). For some time I have believed that an important role for informed health consumers is to educate their physicians and other health professionals.

    From what I have read on this and other websites over the past 12 months, my belief has been strengthened. Accordingly, let me direct you to this wonderful website that has been specifically designed for health consumers with persistent pain and associated issues:

    http://painhealth.csse.uwa.edu.au/

    Painhealth boasts impressive endorsements within Australia and, since its launch some 8 months ago, has received well over one million hits from people in many countries.

    The website was developed “on the smell of an oily rag” by a team of dedicated health professionals and volunteers (including consumers).

    If you find it helpful, please spread the word to your fellow pain sufferers.

  21. maryann kelly says:

    dear dr quinter, thank you for your kind words. i have been sick most of my life. i am 67 yrs old now. as a child i had rheumatic fever at 3 yrs old and at ten put in hospital again for 105 temp, joint pain and they never knew what it was. i was put on bed rest for three months. i have been hospitalized many times with weird things and high fevers, enlarged spleen and liver. many allergies too once hospitalized in my thirties for epoglotatis (spelling). each time realeased with no diagnosis. also at one point i had wbc’s of 24,000 and high sed rates. there is more i can go on. i used to be a lab tech that is why i know the tests. after having my first and only child (which was twins, lost one early) i was 35 and went straight into menopause. that is when things got worse. two doctors have asked me never to come back and another told me that i cry pain like the boy who cried wolfk. i seriously need help. oh once in a flare up i had no insurance and was in a clinic setting and the doc did some tests and it came back positive for RA with a sed rate in the 80’s. he told me it was a lab error and repeated it a month later and it came back neg. the neuropysciatrits thought i presented as sjdromes (spelling). the gastro thought i had chron’s which was dismissed after testing. on and on. my famiy tells me if something was wrong they would have found it. in the past couple of years i even thought i had giant cell arteritis and dismissed that. i am at my wits end. please help me.

  22. John Quintner, Rheumatologist says:

    @ Maryann. I know it will not help you but please accept my apology for the ignorance and associated unethical behaviour of so many of my medical colleagues.

  23. maryann kelly says:

    i live in new york city and it seemed to be one of the last states to even possibly consider fibro. i was told by a doc thirty years ago that he had just read about this and i probably had it. new york is not active with this diagnosis. i cant even go to docs anymore because they put me down so much. two shrinks one even a neuropsycharist told the medical docs something was wrong. the last shrink i went to saw me in a bad flare up and said i can see you are sick and in pain what are the medical doctors doing for you. my answer sending me to you. unfortunately in this time and date many docs do not stay long in one place and starting over is a nightmare. even my family does not believe me. they say i am lazy. i am now starting to be diagnosed with several other things but no one can put a finger on it. i am so tired. when the weather is changing i am in agnony. someone needs to really help us in new york. by the way two rheumotolgists have diagosed it but do nothing, one told me i have people worse than you in wheel chairs. when i was not looking he touched my leg bone and i actually flew off the table in pain. just touches hurt me. help help help new york sucks when it comes to fibro

  24. Jodi Huckaby says:

    I miss playing with my kids, my two youngest boys don’t even know the mom I used to be. I was so active, hiking, backpacking, canoeing, and now I am obese and bedridden more than not. I can’t play ball or ride a bike or do anything little ones like to do and it makes me so sad.

    I hope someone can help us.

  25. Bobbie says:

    Dear Lauren: I am sorry to hear of your situation. You sound quite desperate but you need to keep thinking straight to handle all that is going on. Some ideas: if you are part of a union, contact them about your situation with your employer; get a new doctor – call your medical provider and ask for an internist, someone who knows about fibromyalgia and chronic pain; research on the computer about drugs used for fibro pain and think about what might work for you; consider going to a chiropractor and an acupuncturist; take daily soaks in the tub with Epsom Salts; find an attorney who would help you file for disability for chronic pain through Social Security; find a fibro/chronic pain help group in your area – they will be a good resource for help with your condition; start psychological counseling for depression and anxiety, both side effects of fibro; be your own advocate and don’t feel you must do this on your own; contact family and friends and ask for their support in whatever way you may need them!

  26. Gay Rudolf says:

    I was dign. in 1994. It has been hell ever since. I cried in the dr. office, He said I would be in a wheel chair 2 to 3 years. I have the neck spurs, spinal stenosis. lord only knows how many surgery’s I have had, fingers, feet, back, shoulder. I try not to take a lot of pain medicine, I can sit or stand for any length of time. riding in a car hurts. My house is a dump to me. But god is good to me. I try to go to church, this morning I could not go. I want to help people but I am failing to do what I want. Thank you for letting me find this web site. GOD BLESS ALL OF YOU.

  27. Lauren P says:

    My doctor wont give me any pain med.. I am in pain since.. DR said go therpy and excercise. it full of crap! They dont know what hell pain I am having.. My job gave me last warning if i miss one more day then i will be termial.. noone help me.. if I lost my job .. or wont help me.. I will blow my head out.. I am very tired to stay up working with my damn pains..

  28. Diane says:

    We are all in the same boat but I dont recall which one of you stated about wishing your daughter knew you before, Wow, I am always thinking the same thing about my son. I pray that something is done to help us so that we can enjoy and do the things we want to do with our children. So I am ecstatic to see that there are doctors researching, even if it is just a blood test to dx, I believe once this is done more doctors will jump to figure out a cure, Thank you Dr. Quintner!

  29. Carole Cosenza says:

    I have had fibromyalgia since 12/89. I cannot believe that people are still claiming it is all in our heads.
    I take very few meds, only when at my wits end will I take the pain pills. I have seen to many people become addicted and I have enough problems.
    In my experience gentle stretching like Tai-chi and yoga helps. Walking, treadmills, and biking are to strenuous.
    As some have commented, if I could be a mermaid life would be wonderful. Warm baths, with vanilla and/or lavender bubbles also help.
    Massage and chiropractic adjustments help as long as they are not to aggressive.
    Sleep is miserable, I am sure I crave sleep the way an addict craves drugs. Melatonin taken 1 hour before you want to sleep will give you 4 hours of sleep. Then I take a second pill and 1 hour later I get 4 more hours of sleep.
    So in 10 hours of time I usually manage 8 hours even though they are not in a row. This system usually works but there are still times when I am awake for 3 days. Why? Who knows?
    Lavender scents in the bedroom help promote sleep. I use a wax candle that I melt with a warmer – no open flames!
    I take a probiotic, cinnamon, omega 3 oil, and a baby aspirin as well as a prescription grade multivitamin each day.
    B12 injections boost energy but docs do not like to prescribe them. B12 under the tongue melts also help but aren’t as effective.
    I have tried the expensive meds for fibro. and I was a zombie so for me they are useless.
    I have tried the diets: protein only, vegan and everything in between – no real difference,
    Do I have days when I crawl to the bathroom and end up on drugs to wake up the next day – yes.
    I have noticed that these seem to be closely related to the weather and barometric pressure changes.
    I also consider that with each activity I pay a price in pain and suffering. I decide to participate or not based on the importance to me and if I am willing to pay the price after the event. Some things are just not worth it.
    A dose of reality, you will never be able to do all of the things you used to do in a day. Expecting a return to “normal” is unrealistic.
    You have a new normal, probably 25% of your old live BF ( before Fibro). You need to adjust to your slower pace and do not be a martyr.
    You need to let your loved ones that you hurt all of the time. Pain is a normal part of your day and since constant pain is wearing you need to rest more often and take things slower. No one can actually understand your misery but not telling them and expecting them to just know that you are miserable all of the time is unrealistic.
    I had this disease for 2 years before I told my husband that I was always in pain. He thought I only had a problem when I actually gave in and took pain meds.
    He was much more understanding once he realized the enormity of the problem.
    You really need to be kind to yourself. Treat yourself with care as you are really very fragile like fine porcelain. Good luck hope this helps someone in their AF( after fibro) life.
    I lost my career and my hobbies are limited but since the brain can only process so much information at one time I try to keep my mind busy to crowd out the pain. It does help to push it to the back on a regular pain day.
    I cannot afford to try exotic and cutting edge treatments that may or may not work. They are to hard on the body and the wallet.
    Since 1989 the development of a blood test to prove I am sick seems like very little progress. So many people are now afflicted that you would think that there would be an interest among drug companies because there is now a large payday for them. Maybe they will wake up ad take note, soon!

  30. MICKEY says:

    I think a Reputable test for FM and CFES would be wonderful!!! But, in the meantime, could some researchers TWEEK, researh that has already been done for treatment, and remission:
    1. Chemical Induced Coma to rest and reset our Autonomic
    Nervous System.
    2. The new treatment being used on War Vets with Brain
    Injuries, and Phantom Leg pain.

  31. diane says:

    This test seems to be worthless as far as I am concerned. I wonder what they are going to prescribe after they get the $ for it? Maybe just go to a reputable FS/CFS Center, like I did. Took 31 vials of blood and then went from there. The Doctor who started the Clinics had this himself. He has a few books out and I can’t remember his name right off and I am looking for the book for a friend, can’t find it either. There is a website, just look up “Fibromyalgia & Fatigue Centers Inc.” The 1 is in Middleburg Heights, Ohio (Cleveland) and another is in Texas. Hope this helps as FS/CFS is a multitude of issues, not just inflamation. God Bless O:)

  32. John Quintner, Rheumatologist says:

    @ Debra. Not so, at least for this rheumatologist. I suggest you acquaint yourself with our “Evolutionary stress-response hypothesis for chronic widespread pain (Fibromyalgia Syndrome). We have transcended the body/mind substance dualism that has proven so unhelpful to so many people suffering from chronic pain. You can freely download our paper from the website of our peak body for pain -Painaustralia.

  33. Debra Huff says:

    And so the evidence progresses. There are certain doubters, rheumatologists included, that absolutely want Fibromyalgia to fit into a psychological diagnosis. That is so old news, I say, to those people. They are so afraid their ideas will be proved wrong, they’ll do everything they can to see a definitive biological diagnosis fail. Not going to happen, and they should join the land of reality.

  34. John Quintner, Rheumatologist says:

    Apologies – I should have said ACR and not ACA! The former stands for American College of Rheumatology.

  35. John Quintner, Rheumatologist says:

    @ D Lewis. Therein lies the problem. There is no gold standard for a diagnosis of Fibromyalgia. This situation is reminiscent of that which existed in 1990 when the ACA formulated Classification Criteria for Fibromyalgia. The unanswered question was – if your pain is widespread but your tender point count is below 11 out of 18, then what was to be your diagnosis? Well, they would let you in provided you had the “characteristic” symptoms – fatigue, sleep disturbance, mood changes, disturbed cognition etc. How could a diagnosis of non-fibromyalgia ever be made? Meanwhile, as the comments on this website demonstrate, many people are desperate for answers and will clutch at straws. This is not a new situation. Dr Gillis and his co-researchers have promised to submit their work to a reputable peer-reviewed journal. I hope they prove me wrong to have cast considerable doubt upon their extraordinary pronouncements made in the social media.

  36. D Lewis says:

    The test seems to be great at confirming diagnoses, but what’s the rate of false negatives? I would like to see the complete research statistics.

  37. Susan White says:

    I was diagnosed with fibromyalgia in 2010. I believe it does exist and am glad to see research for a test. I also have other issues including early onset osteoarthritis in several places, hypothyroidism (only shows up in antibody tests not tsh), COPD (even though I’ve never smoked but I have chronic brocnhitis, allergic asthma and such).

    My doctors could still not figure out some of my symptoms though and in January of 2013 I was sent to U of Michigan. I was diagnosed with the hypermobile form of Ehlers Danlos Syndrome. After some research into family history, I discovered that my Dad must have had EDS but never knew. The symptoms are all over that side of my family. My sister, nephew and sons are showing EDS signs but they’re milder than mine so less noticeable.

    EDS is a genetic connective tissue disorder that causes the body to make bad collagen. Basically, my “glue” is broken. I experience random subluxations and dislocations multiple times a day because everything stretches more than it should (tendons etc.). Swan neck deformity of my left index finger is also present. The Physiatrist handling my EDS issues said I was lucky that my joints relocated on their own. Also it’s important to note that joint dislocation is not a fibromyalgia symptom from my understanding. I don’t have the link but a study of fibro patients found that at least 50 percent of the participants had Ehlers Danlos.

    EDS shares symptoms with a lot of other conditions but here are a few to look for, though not all EDSers have all of the symptoms and there are quite a few more I’m omitting. I have these: blue sclerae (the whites of my eyes have a blue tint), high palate, crowded teeth, levido reticularis (a lacy pattern of blood vessels visible under the skin), skin that tears and scars easily, easy bruising, and much more.

    I’m also lucky in that most doctors here find me “fascinating” instead of not wanting to deal with my incurable issues. The nephrologist told me I was “one tough lady”. Others I know have had a much harder time with medical care. If any of these issues (and others such as mitral valve prolapse and organ prolapse) seem familiar, people might want to look up Ehlers Danlos Syndrome. There are several good sites out there and several support groups. I’m not a doctor and can’t help with issues but I wanted people to be aware that some fibromyalgia patients could have EDS and not know it. Many doctors know little about EDS. Thank you for reading my long post lol. A hug to all who need one.

  38. maryann kelly says:

    i go thru all the above with also loss of balance. doctors are horrible to me and there are days i wish to die. my family also calls me lazy and it did get worse after childbirth at 35. docs are extremely rude here in new york.

  39. Beth C says:

    My fibro started to get bad after I had my only child at age 38. She was about 3 or 4 when I began to notice my pain. I read an article in a magazine in a Drs office that said that fibro often acts up after having a child. I as familiar with it because my (adoptive mother) has it. The one Dr. – Dr. Kapila in South Florida treats Fibro. She suggested Cymbalta, but my insurance doesn’t cover it and I cant afford it. It was recommended that I applied for disability but Dr. Kapila was not willing to back up my claim. She said that I should go for the ADD and depression condition. I was turned down for disability. I have been vegetarian for over 25 yrs – now I’m borderline vegan (still eat a little cheese and seafood), but I recently bought a juicer and I am doubling up on juices, fruits and veggies. Whenever I try minimal exercise I end up injuring myself – have tendonitis too. Hot showers feel good while I’m in the shower, don’t have access to Jacuzzi or tub.

    So here I am, 52 yrs old, a single mom with a 14 yr old daughter. It’s so true that the symptoms go unnoticed – even by close family and friends. I hide my pain because I have to work and keep going – I don’t have a choice. I am constantly exhausted so I am considered “lazy” or inconsiderate by family members. The only people who understand are those that have it too. I wish my daughter could’ve known me when I was thin, active (rode my bicycle 100 miles a week) and not suffering all the time. Seems now, all I want to do is sleep. Sometimes I don’t have a choice because I will fall asleep anywhere, anytime – except at night when I have insomnia. I am extremely stressed out all the time – finances, living with family members, raising a teenager (who also complains of aches and pain) and trying to find a job I can do and find a place to live on our own.

    My body has always told me what it needs. Due to the fibro pain my body is asking for: long hot baths, warm stretching or yoga, swimming and most of all – deep tissue, full body massages. I really don’t want to take expensive drugs. I would rather my insurance cover the above and I would be happy with that – other than a cure, of course.

    I have found that “tiger balm” with moist heating pad works great on my lower back pain and Ibuprofen does help but I can’t be taking it all day and night – I use it sparingly. I have considered moving to Colorado, California or another state where cannabis is legal because I believe it has beneficial properties for those with fibro.

    I do not go anywhere for pleasure, I have no social life, I gained 40 lbs, out of shape, headaches, severe fatigue, depressed – a totally different life than I had 15 yrs ago.
    I am in constant pain and discomfort.

    I wonder how I am going to care for my child, how I will ever be in a romantic relationship again, how I am going to work to support my child and myself and participate in her life.

    I just heard about this discovery on Facebook last night – and again on a different page today. I hope this is the beginning or understanding what fibro is – and I hope the US government will consider it a crippling disease for some – like me and not refuse disability coverage the next time around. I am worse now than the last time I applied.

    Good Luck to all.

  40. Marie strasbaugh says:

    This is also inherited.I was diagnosed in1997,Doctors have to rely and try meds that help to deal with it,keep life as productive as possible.It is very sad to attend Support Groups,to see persons in wheelchairs,living in shelters, because of divorce by spouses, who get donot believe the illness, because most of us look fine.Well, people who have serious illnesses look just fine too.If we wore body casts they would believe it.Society is unjustified in calling it false or in our heads” I kept hearing, You are out of shape,just excercise and it will disappear, Well, I was in shape when diagnosed,normal weight, eating well, financially alright.That doc told me right off I should quit my job,make some changes.But! The last he said to me was” I am so sorry.” That told me that this was serious, and it has been.I do the best I can every day,always substituting things I can no longer do.

  41. Debbie Mortenson says:

    Any research on this retched disease is welcome. This is early research and will need more studies but looks promising. What a stupid blood test will do is give bureaucrats their concrete proof of the existence of FM that they can feel and touch. We absolutely KNOW it exists and so do our doctors (the intelligent ones). What is frightening to me is that after 9 years I am beginning to develop other autoimmune diseases and so is my sister-in-law. According to my neurologist, this is not uncommon. FYI, I use Cymbalta and no narcotics or otc pain relievers. I do use acupuncture, relaxation exercises, meditation, prayer, deep breathing, distraction, and stretching. Exercise has not been helpful for me because of co-morbid conditions. Reduction of stress, staying on a routine, and eating more veggies/less meat and juicing have helped incredibly.

  42. Alice says:

    If Fibro show markers of a depleted immune system and infection… ? everyone suffering from fibro + multipule system problems should look into Lyme Disease and other Tick Borne illnesses as a probable cause. Lyme has been called ‘The Great Imitator: because ti mimics diseases like Fibro. Its hard to diagnose and treat and often go undiagnosed. most tests are unreliable and it takes a doctor who is experienced with these. see this website for more info -> http://www.ilads.org

  43. This new test explains why rheumatologists throw us out from their offices: because their standard tests for inflammation show NO INFLAMMATION in our fibro bodies! Now we know why. Let’s hope that these specialists do some reading. Even without the teat I always knew that my body simply does not do inflammation and that we simply cannot produce fever. Our primary set of immune defenses is totally screwed up.

    …”The term “cytokine” has been used to refer to the immunomodulating agents, such as interleukins and interferons. They are regulators of host responses to infection, immune responses, inflammation, and trauma.[2] Some of them are proinflammatory; these are necessary to initiate an inflammatory response necessary to recruit granulocytes, and later on, lymphocytes, to fight disease. Excessive inflammation, however, is sometimes the pathogenicity of certain diseases. Other cytokines are anti-inflammatory and serve to reduce inflammation and promote healing once the injury/infection/foreign body has been destroyed.[2]…

  44. John Quintner, Physician in Pain Medicine says:

    @ Lesley. Experimental animal studies have shown that mice with artificially depleted levels of white cells can still mount an immune response to infection. Cytokine levels are increased in these animals. However, levels of nitric oxide are low, which may explain why such animals cannot kill invading bacteria.

    In humans, T-lymphocytes are major players in host defense against infections. Patients with therapy-induced leucopenia (from treatment of their leukemia) can respond to activation of T-lymphocytes with a broad cytokine response during complicating infections.

    So, as far as I can ascertain, the answer to your question is NO.

  45. Leslie Beacom says:

    Since Dr. Quintner seems to be reviewing and responding to posts, I’m hoping he’ll see mine, or maybe one of you has an answer.

    The article states: “The FM test looks for protein molecules in the blood called chemokines and cytokines, which are produced by white blood cells. Fibromyalgia patients have fewer chemokines and cytokines in their blood, according to Gillis, and have weaker immune systems than healthy patients.”

    I have a low white blood cell count (and have for many years – I get tested every 6 months). Does it logically follow then that I would also have fewer chemokines and cytokines? I would assume so.

    I have been diagnosed with Fibromyalgia, and see a pain specialist for it. It is covered on my insurance, for anyone who might be interested (Kaiser).

  46. Jodi Huckaby says:

    this Question is directed toward Debra Kelly Greene,

    If a person were to change one thing in their diet, what is the first thing you would suggest? I am desperate for some relief from this pain I am in. If changing something in my diet will help I am hoping you might share this.

    You have inspired me to not give up my own research, which I did because of so much frustration, I am going to resume my tai chi and hope for a response from you.

    My New Year’s Resolution came early this year! Thank You for that!!!

  47. Debra Kelly Greene says:

    I had made a comment on this forum previously and would like to make an additional statement regarding finding a blood test for fibromyalgia. While it may not be helpful if it is not covered by insurance at this point in time, I am still indeed encouraged that there are researchers working toward finding out definitive way(s) to DX this disorder. From my own personal experience of the school of hard knocks many if not most doctors are still scratching their proverbial heads regarding how to treat FMS. My back ground is a philosophy of Osteopathic medicine. I believe it is imperative to find out the cause for chronic pain disorders from a molecular level and then treat the individual for with what they lack in their diet or help them eliminate things that are toxic in their diet or environment that is making them ill. I am a Vocational Rehabilitation Counselor and have studied on this now for more than a decade. I found out I had FMS in 2000 but I had had the symptoms since I was 27 and went all through my thirties not knowing why I would be hurting sometimes and unable to sleep well. As my own personal path has taken me in to a new understanding of how to take care of my body. Through healthy lifestyle changes, as in diet changes, moderate low impact stretch exercise like Thia Chi and ballet poses, simply keeping my mind off the pain, and last but not least some specific supplements that I have begun taking after much research. FMS may never be something that will ever go away completely but it is joy to me to have my productivity back to 80 to 90 percent capacity when at come points in my forties I was semi-invalid not out of the house for two weeks at a time due to uncontrolled pain. I will say again I am glad to know that there are researches looking for a way to figure this all out! For my own personal path or walk through this quagmire of FMS pain I am glad I have had a great GP who has in a way “muddled through” with me the best he knew how. He is a wonderful doctor and has been there for me through some hard painful times. I have gone from taking a dozen prescription medications at one point and now I take NONE!!! I do not even take OTC over the counter pain meds!! None of it really seemed to help so why mess up my liver was and is my thought!! I have found my diet is the KEY for me and exercise interventions has made all the difference. Many prayers were sent for me as well. I really have my life back now and that is a true blessing. I am writing a book about what I have done to turn my health around. It did not happen over night but withing the past three years I have made many changes in my lifestyle that has made all the difference. I hope to be able to share this with others by writing my experience and my reasoning for some of the things that I have done. I hope that it could help others climb out of their personal pit of pain. I was hospitalized several times with uncontrolled pain. Thankfully those days are so in the past. I continue to keep on researching. My own research has changed my life. I had an “Epiphany” some three years ago. I took a hard long look at my situation and have made some changes due to my research and nonstop studies. I had to do something as I had NO LIFE. My family can tell you I am a completely different person now! There is hope for a cure for this yes and I encourage the scientists to continue on with studies in that regard. Those of us who have walked in the shoes of this horrible pain disorder must do our best to work through it. Yes I still have some pain but I can manage my life just fine while it stays down around two most of the time. Yes I can handle it at that level and thankfully it rarely spikes very high. If it does I study on why it is that way and look for reasons that it did spike and chalk it up sometimes to eating something I SHOULD NOT HAVE!! As a Vocational Rehabilitation Counselor well versed in understanding medical information and terminology I learned how to rehabilitate my own body. Yes I still do have some pain, but NOTHING like it was. I know now how to handle a flare better and they are much more short lived. I must write my book in the next few months and share how I have done my rehabilitation of my health. Respectfully and with continued hope for a cure for this horrible malady, Debra J. Kelly Greene, MS Edu V R Counselor

  48. Bobbie says:

    Julie: try getting meds directly from manufacturer; let them know you are strapped financially. Switch to generic meds and try Costco pharmacy for their prices.

  49. Julie says:

    I was diagnosed with advanced Lyme and have been dealing with FM since the pain from my car accident increased. And it was because of the Lyme and having a barely functioning immune system that led to the FM diagnosis. This is good, but what will it take for insurance companies to start covering some of this stuff? As far as I’m concerned, Obamacare is not going to help the insured get these things covered. In the meantime, I’m giving up going to the doctor because I can’t pay the $5000 owed on medical bills, nor for my medications any longer.

  50. Angela says:

    Right on!

  51. Bobbie Cruzen says:

    My internist came to the conclusion that I am suffering from the condition of fibromyalgia given the symptoms I have displayed for about 2 years now. I have for the past 18 months changed my diet, lost weight, been on prescriptive drug treatment, and joined a walk club. I also made a choice to retire early by quitting my extremely stressful job because I felt it necessary to make my health my number one priority! I have no regrets about these choices and am now much happier and healthier than I have been in years. Everyone has their own story and I read many of them on Facebook. Each person diagnosed with fibromyalgia needs to take charge of their own life and be as informed as possible about their symptoms and the treatment options for those symptoms. Prioritize your health and find doctors who will work with you in discovering ways to manage your fibromyalgia with their support. I feel certain that the medical community is beginning to pay more attention to fibromyalgia sufferers but we will continue to be our own best advocates in determining how we live each day of our lives!

  52. Marian says:

    I was diagnosed in 2000 with Fibromyalgia after most of my life being healthy! After seeing probably 16 Drs. and being to the ER 3 times and admitted to the hospital 2 times within a 4 mo. period, 3 Drs. finally together decided I had Fibromyalgia! A Cardiologist, Gastroenterologist and a rheumatologist looked a the numerous tests I had and made the diagnosis. I even had catherization- a prominent Cardiologist thought I had a heart attack- EKG was off because of the severe pain!
    I seriously believe that it is a disease of the nervous system, even had a MRI of brain but showed nothing.
    Right now, I am on Lyrica- It DOES help me! I am also on Zoloft, this is being studied at Duke for Fibromyalgia! Actually Paxil was in the study, I tried to get in the study and was denied. I told the researcher that she had to tell my why- I was already on Zoloft and the study was Paxil so I couldn’t participate.
    The good news is that there are many studies going on for Fibromyalgia!!! I believe Baptist ( Wake Forest) is also doing a study.
    There is a fibromyalgia network newsletter that you can get updates on all the studies!

  53. Angela says:

    Paula,
    I’m not saying that these “doctors” are “professionals” – because obviously they are not!! I’m so sorry for your experience – I have had a few of my own! YIKES! I’m only saying that this other doctor with a supposed blood test for fibromyalgia is a shot in the dark. Please, please, please keep looking for a doctor worth their salt! They are out there, perhaps in Internal Medicine even. You may have to travel to another town unfortunately because stories of these doctor nightmares are far and wide. None of us should have to suffer like you have – but the answer is not a “for cost” blood test that could be a false-positive and make things worse. WE know what we are suffering and it has nothing to do with being overweight or being underweight or anything of the sort.

  54. Paula says:

    Angela- In this town, Lynchburg, VA, not just psychiatrists laugh at people who are already diagnosed by other doctors with Fibromyalgia, rheumatologists treat them rudely and actually tell them to get out of their office because they are wasting their time. I was sent by my GP who completed the pain checklist of the 18 sensitive spots plus the several other synptoms of the syndrome that I presented: poor sleep, restless leg syndrome, IBS, depression related to feelings of worthlessness from not being able to do all the 100 s of things I used to do, etc. My GP refered me to a rheumatologist at the Central VA Orthopaedic Center for further treatment and to rule out RA. The Rheumatologist was about 45 minutes late for the appointment. When she finally did get there, she was extremely rude. She spoke very poor English. She did no testing. She looked at me and stated in a very loud voice, ” You fat! You no have RA! You just fat! You need go on Biggest Loser! You get out my office! You just fat! You waste my time! Dont come back! ” She then stormed out of the room leaving me in tears and shock. How’s that for professionalism?

  55. John Quintner, Rheumatologist says:

    @ Angela. I agree with you regarding the diagnostic value of the “test”. It does not seem to be generally understood that Fibromyalgia has the status of a poorly defined syndrome. Furthermore, there is considerable overlap with other poorly defined syndromes, e.g. Chronic Fatigue Syndrome, Irritable Bowel Syndrome, Myofascial Pain Syndrome. In fact, Fibromyalgia Syndrome can co-exist with any other painful condition. If you think this is a diagnostic quagmire, you would be quite correct. To date I have seen no evidence that Dr Gillis and his co-researchers have addressed or even acknowledged the existence of this fundamental problem.

  56. Angela says:

    Even without this expensive (out of pocket test) I STILL have Fibromyalgia. My doctors Know I have Fibromyalgia, as well as Lupus. I don’t need one more blood test out there (out of pocket!) to tell me that I have Fibromyalgia after all of these years. Why can’t we get a researcher to work on valid treatments for the disease? I don’t mean anti-depressants that many of us have chemical sensistivities to either – I mean a real medication that actually treats the disease. Having the disease is obvious and easily tested for. A good quality Rheumatologist can figure out the diagnosis. A Phsyciatrist does not “laugh” at a patient who presents with Fibromyalgia symptoms! If they do, the patient should immediately find another doctor! Fibromyalgia symptoms are not “all in the head”. It’s impossible. So, let’s stop wasting money on guess work and get to work with a cure that isn’t worse than the disease. While we are at it, let’s work on a cure for Lupus that isn’t worse than the disease!

  57. Susan Slater says:

    I was one of the first diagnosed with fibromyalgia . after a car crash, in my opinion it was from the Prescription Drugs, that poisoned my body. , I left the Western Medical Mafia who poisons people with drugs that were bogusly passed through horrific animal testing that is only 37 % accurate, a coin toss is 50 % ! No I used herbs to clear my liver, acupuncture, massage, water therapy,got educated on what chemical crap in foods to avoid & studied all the real, authentic, ways of CURE & I have long been free of “fibromyalgia” am over 60 & am in NO pain at all !a medical, toxic products, environment, chemicals in food, pesticides, fungicides, crap that is pushed on us ! Stop animal testing it is only a front to pass evil ingredients that profit the medical mafias.

  58. Joyce Holbrook says:

    My take on this is the same as it is with many processed foods. I think that many of the “new” diseases are due to our diets that are high in genetically modified foods. If you eat organic foods and cut down on wheat and sugar products it seems to help along with exercise. Beyond that Lyrica helps me.

  59. M Weir says:

    What ever you call it, fibromyalgia or ” I just hurt” syndrome. I know it is real and the pain is real. I don’t care what the diagnosis is, just the treatment. Studies need to be done on treatment of the deep tissue pain, nerve pain and everything else that does with it. I have suffered with this for 13 years and doctors don’t know how to treat it.

  60. Darlene McInnis says:

    It is my opinion that the reason why so many people and Doctors are skeptical, is because this disease seems to have surfaced during the era of the addiction to Percocet and then even more so when used to try to get Vicodin and Oxycodone. And now… even Social Security Disability. Which has proven true by a majority of the people who have been diagnosed with Fibromyalgia, (in my opinion).

    I believe that physical, emotional and mental fitness and a healthy diet can make all the difference in easing the pain by 75%. Without medications! I have only my own physical, mental and emotional results to go by.

    I was diagnosed with Fibromyalgia 16 years ago, and have been through it all. The pain… very real! Cure… none as of yet! The best pain reliever… Exercise! Again… my personal opinion. :)

  61. Debra Kelly Greene says:

    It is encouraging to me that Doctor Gillis and EpiGenetics are working toward an actual blood test that narrows down more specifics of what FMS is all about. It has been years ago now that I found out that is what I had but had gone for years with spikes of pain which caused problems vocationally for me. I say BROVO to the researchers who are working on finding the molecular reasons for this horrid painful disorder. Five million people in this country alone and others abroad need to have a definitive way of KNOWING they have it other than a GP poking at tender points or a psychiatrist telling them it is all in their head!! Again I say BROVO and they need to keep up the good work regardless of the uninformed nay-sayers! Debra in NC a VR Counselor djkgc

  62. Trudy Cary says:

    I would think an excellent rheumatologist would be able to diagnose fibromyalgia through a process of elimination and other tests results. At least that is what happened in my case. And insurance thankfully covered it all. I lucked out I guess by having the professionals at U of M Ann Arbor who believed something was terribly wrong even though it took quite some time to figure it out. My ANCA and ANA were abnormal along with EOS counts off the charts. I had no idea about the 18 point exam and with my labs and exams they narrowed it down to fibromyalgia, churgg-strauss vasculitis, and neuropathy. I think it would take more than a “simple” blood test to veryify these disorders and am glad I didn’t have to pay $744 to find out what “might” be wrong.

  63. John Quintner, Physician in Pain Medicine says:

    @ Rebecca. Did you know that the Department of Health, Australian Government, through its Chief Medical Officer, has established a Clinical Advisory Committee on Lyme disease to provide him with advice on the evidence for Lyme disease in Australia, diagnostic testing, treatment and research requirements?

    As a Board Member of the ME/CFS Society of Western Australia, I look forward to the fruits of the Committee’s work. Hopefully there will be less in the way of speculation and more in the way of resolving these important issues.

    See: http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/CMO-Advice-clinicians-CACLD-20130808.pdf

  64. John Quintner, Physician in Pain Medicine says:

    @ Shauna. Let me quote the above assertion: “We’ve proven that fibromyalgia can be diagnosed unequivocally through this test, a test that remains highly sensitive and specific,” said Bruce Gillis, MD, founder and CEO of EpicGenetics.

    Dr Gillis has evidently fallen into the trap of (wishfully) thinking that Fibromyalgia is a distinct clinical entity and diagnosable as such. The reality is quite the opposite.

    As I have pointed out elsewhere on this site, Fibromyalgia is said by the expert opinion leaders to be able to co-exist with any other painful condition. Such conditions might include rheumatoid arthritis, systemic lupus erythematosus, chronic low back pain, and even Major Depressive Disorder. Where exactly does one draw the line between FM and any co-existing diagnosable conditions?

    Fibromyalgia also overlaps clinically with other complex syndromes, such as PTSD, IBS, CFS etc. In his research protocol, one might ask – how does Dr Gillis control for this overlap?

    Testing 10,000 or more people in pain will only add to the confusion.

    Finally, Professor Fred Wolfe has argued that FM symptoms embrace a spectrum of clinical features of distress. If this is so, it could be that we are looking at activated evolutionarily conserved stress response systems that cannot readily switch themselves off. Anyway, this is my best guess!

    You can see why I do not agree with Dr Gillis in his above quoted statement.

  65. Rebecca says:

    I would take any speculation from professionals in Australia with a grain of salt, considering the doctors and the government are still denying the existence of Lyme’s Disease, despite people dying there with it.

  66. shauna says:

    As I see things the test group is so very small how can they get a good sampling with out 10,000 Plus people tested ?

  67. John Quintner, Rheumatologist says:

    @ Debra. The standards to be met by Dr Gillis and his team of researchers are those demanded by peer-reviewers engaged by a high quality scientific medical journal. Until such time as this has taken place and their results published, I will remain highly skeptical of their claims.

    I would be interested to learn whether Professor Daniel Wallace has altered his previous opinion that “less than 1% with FM would have any use for such testing.”

  68. Linda says:

    Thanks so much to those who are searching for to prove her !
    We are millions throughout the world has to wait…
    Linda from France

  69. Debra Huff says:

    I am encouraged, and have been following the research. If this FM blood test had been available years ago, I would not have had numerous lupus and rheumatoid arthritis, and countless other tests done (e.g. MRI, lyme disease, etc. etc. etc.) which all came back negative. There are always going to be doubters, because the conditions don’t meet “their standards”, or the process was flawed “according to them”. I say, continue the process, and Kudos to Dr. Gillis and Dr. Wallace.

  70. HypoGal says:

    I am glad that research into blood work to diagnose ME is being developed. Baby steps…

  71. John Quintner, Physician in Pain Medicine says:

    @ Squid. From the relevant research literature, it is my understanding that Fibromyalgia (aka Chronic Widespread Pain) can co-exist with any other painful condition or illness, including diseases such as rheumatoid arthritis, systemic lupus erythematosus, major depressive disorder, and even with a localised musculoskeletal condition such as chronic spinal pain. This fact alone raises some important questions of diagnosis that have yet to be addressed by Dr Gillis.

    Moreover, as Professor Fred Wolfe’s research has shown, FM occurs across a spectrum of symptoms of physical and psychological distress and, because of this, is unlikely to be a distinct, diagnosable condition.

  72. Squid says:

    Here’s my understanding of this:
    It doesn’t seem that this test can tell you that you specifically have FM, but it can tell you that you don’t. Is that correct?

  73. John Quintner, Rheumatologist says:

    @ Jacqueline. To be fair, the test being discussed is not one that would have helped diagnose your conditions – “severe osteoarthritis, neck spurs and spinal stenosis”.

    However, the fact that your complaints were allegedly not taken seriously by your Health Professionals seems to me to have been an abrogation of their ethical responsibilities.

  74. Jacqueline Schaller says:

    It is nice that they final have a test for something that I suffered from for 16 years. It wasn’t until I was diagnosed with severe osteoarthritis, neck spurs and spinal stenosis that someone finally took me serious. I hope that other people get the help they need sooner than I did and have the support of their families. I also hope that this test will be approved so that insurance companies cover it. Many of us have lost our jobs due to flare ups before we are taken the least bit seriously.

113 queries. 0.688 seconds.