Sufferers of chronic fatigue, fibromyalgia have hope in new diagnostic tool

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  • Janet Komanchuk Brandon/Hillsborough, FL
    Aug. 18, 2014 1:30 p.m.

    Every bit of research that helps to dispel the myth that fibromyalgia is "all in your head, a woman thing, hormonal, the ticket to full time disability..." is a step in the right direction. My pain was real, as was the fatigue, insomnia, irritable bowel syndrome, depression and all of the other horrid symptoms that just kept getting worse. I tried everything I could find. I did everything and anything to get my life back. Being labeled a malingerer, a drain on society is no fun. I often told the naysayers that if every part of my body that was hurting was bleeding, then they could begin to understand what I was feeling.
    Thankfully I did receive help. Finally I found Joy of Healing. Because of their unique mind/body/spirit wellness work I have been in remission, both pain and prescription free for more than thirteen years.
    You know your body better than anyone else. Do not ignore your symptoms. Keep researching until you find the help you need. Do not be afraid to examine complementary and alternative approaches to wellness along with the medical.

  • Kjirstin Youngberg Mapleton, UT
    May 21, 2014 2:36 p.m.

    I was FINALLY diagnosed with CFIDS (chronic fatigue) in 1985 and fibromyalgia in 1993, along with MCS, allergies. etc. So from about 1980 to 2009-nearly 30 years-I was in bed. I managed to have five children, including a set of twins, because, oddly enough, the hormones during pregnancy made me feel much better. I even joked I'd be happy to be a surrogate if the actual labor and birth hadn't been so bad. I was able to run a photography business because I could sleep for two days prior to the wedding, work all day, then crash for three days, then work on the photo albums. Even something as simple as attending church took two days of rest to accomplish, and two to recover. That's what was hard for others to understand, because on my up days, I looked and felt fine. Nobody knew the amount of struggle required to achieve one day of normalcy, or why two days in a row were impossible for me to manage.

    Now, at 60, I feel like I finally have a life. Remission? I say I'm cured, and pray it continues. How? Menopause? Who knows?

  • Bob Pomeroy Bisbee, AZ
    May 20, 2014 7:45 p.m.

    And for the doctors, doubters and disparagers, I'd sure rather have the income I can generate as a trial lawyer, than live at 30% less than the poverty level on SSI. I didn't exactly choose this as a lifestyle.

  • Bob Pomeroy Bisbee, AZ
    May 20, 2014 6:49 p.m.

    In my long-term middle-age onset case, I have discovered that, for me, I seem to have a dysfunction in my cerebellum resulting in an inability to produce enough neurotransmitters from ordinary B vitamins. The cerebellum is a fairly unknown, until very recently, part of the brain with a completely different structure than the cerebral cortex which is the much larger bilobal which sits on top of and forward of the cerebellum. I wish I could have access to the described program, but it is the rare MD who will do more than prescribe huge amounts of pain-killers -- morphine in my case.
    would like some feedback
    It is a humiliating frustrating existence on the remote edges of what life used to be like.

  • Susan in VA Alexandria, VA
    May 20, 2014 4:23 p.m.

    Wow.... what a freeing feeling it is to know that someone is really looking into this and finding answers. It gives me hope.

  • Lasvegaspam Henderson, NV
    May 18, 2014 12:52 p.m.

    Because massage generally helps me feel better when I am fatigued and have sore muscles, I presume it helps everyone. Not so for those with fibromyalgia. For them massage of the type that I enjoy can be tortuous.

    Why is it so hard for people to simply admit that their own experience may be unlike others'?

  • morpunkt Glendora, CA
    May 18, 2014 12:09 a.m.

    You are absolutely correct. Graded exposure can be incredibly harmful to people with ME/CFS. Most of the time, these patients of mine have relapses, due to pushing past the safe limit. No debate there. Please don't construe my comments as judgmental. I don't consider my patients who don't comply as "lazy" or "crazy". On the contrary, if they were that, they wouldn't be in the program and would have not made the screening process to enroll, in the first place.
    However, the first step needs to be taken to try it out. Otherwise, nothing will be accomplished. Many times our patients don't see the results until after the second or third time around. The group of Australians I take courses with have patients who are in such pain, they have allodynia, which is pain so great, that even a breeze on their bodies is painful.
    With these people, even they get eventual success. If you have already tried a similar program, which it sounds like you have, please, don't give up.

  • Dprestwich Riverton, UT
    May 17, 2014 7:33 p.m.

    "Graded Exposure" exercise therapy can be incredibly harmful to people with ME/CFS. Pushing past the safe limit, no matter how small that envelope is, can cause severe relapse. It's so frustrating to be labeled as a "non-compliant patient", or someone who is "lazy or crazy" when even a little bit of activity can put you in bed for days. I'm not seeking disability or pain meds or attention. I just want my life back! I hope tools like these yield better care for patients sooner than later, including better care from health care practitioners for those who so desperately need it.

  • N Holladay, UT
    May 17, 2014 6:46 p.m.

    It is interesting that on an article that is finally validating for those of us suffering so massively, people have to comment with their disbelief. It is really easy for those who are well to say others are making things up, when they've had no experience with this kind of debilitating fatigue or pain themselves. It is unlike anything normal people experience, and nothing like the tiredness and pain I had when I was well. I really hope you don't ever get something like this, but if you could feel how I feel for even a day, you would change your position.

    Maybe the fact is that these illnesses are becoming rampant in our society and that is why we are becoming more aware of them. Maybe we need to look at why this is, instead of blaming ill people for getting disability or needing help.

  • LovelyDeseret Gilbert, AZ
    May 17, 2014 1:22 p.m.

    The problem many of us have with fibromyalgia is that after it became an acceptable ticket to full-time disability the number of cases skyrocketed. After there was a definitive test for chronic back problems, the number of cases plummeted. Fibromyalgia is now the new chronic back pains with regard to full-time disability.

  • morpunkt Glendora, CA
    May 17, 2014 12:13 p.m.

    As a health care practitioner myself, who works on a weekly basis with chronic pain patients, I am curious to know how they exactly connect it with genomes, when other new research shows objective data for chronic pain being modulated from the brain, through what's called the "exititory response pathway, to the varying areas of pain, with the fibromyalgia patient. In that sense, the brain still controls the pain. It is the central processor. Does this new theory postulate that certain individuals have genes, that cause this pain process, as the "chicken, before the egg"? Many scientists who do research in Oxford, England may challenge this "fatigue" theory, as they believe that certain individuals push themselves much too hard, in the first place, then get out-of-control pain. Therapy to improve these individuals is with "graded exposure", to eventually get them rehabilitated. It has been working with my compliant patients for several years now. I am interested to hear more about this new theory though.

  • Aggie5 Kuna, ID
    May 17, 2014 10:12 a.m.

    I have worked in the pain medicine field for 13 years. While there are Some with this disease, it's is highly over diagnosed and also an excuse for many people. Fact.

  • gee-en Salt Lake City, UT
    May 16, 2014 10:14 p.m.

    It's very sad when those on the outside don't believe those that are suffering from these kinds of terrible diseases.