What does sharing about health experiences and donating #dataforgood mean to her?
“I’m hoping that my contribution is going to help others who come behind me who have these conditions have an easier time of it.” -Becca
If you missed our video interview with Ed, a Parkinson’s disease member, you can catch that here.
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I have had Fibromyalgia for over 20 yrs, I diagnosed myself after reading an article in Reader's Digest, they didn't even have a name for it before that!!!! I have recently gotten away from a lot of dairy products & the pain has let up 90% to what it was!! I have Neuropathy in my toes bad, take meds for that, it helps some but not entirely!! 3 discs in my lower back are deteriorating, I get epidurals for that pain, both knees are week, have had surgery in both knees, a Neuroma in my foot that I need surgery on but won't do that again. fatigue, can't sleep w/o sleeping pills. I guess it all comes with my age of 68. I'm just thankful that it's nothing more serious!!!! I try to stay positive & pray everyday! How can I expect to be healed at my age if I have abused my body by carrying extra weight & bad eating habits!!! I only have myself to blame!!!
Sherry, you don't only have yourself to blame. You have classic symptoms of what may turn out to be chronic mercury poisoning, and/or chronic Lyme disease. I recovered at 58 from 20+ years of fibromyalgia, mystery symptoms, and a year of escalating medical misery in which the wheels came off the bus. You can get healthier again. In fact, I have recovered the health I had 25 years ago, which is absolutely amazing.
My recovery journey began when one of the doctors outside of my health plan heard a presentation at a conference that symptoms like mine could be caused by reactivity to dental materials. Mind blowing. At first I was incredulous. Then I spoke with patients he had worked with all around the country with symptoms like mine, who recovered. They were written up in case report journals, which nobody ever reads, and are ignored by most medical professionals, pharmaceutical companies, chronic disease associations, government agencies, and patients.
So began my journey into the alternate, but most helpful universe of biologic dentists (which I’d never heard of) and functional medicine specialists, which I immersed myself in to learn more, expanding into the fields of genetics, toxicology, biocompatibility, and regulatory science. Not bad for an economist, with no real scientific background or training (except in my gene pool).
As I got healthier, I made a commitment to learn enough along this journey to engage, share and help others, and to unite with others to address the gaps in policy and regulations that allow this to happen in the United States – overlooking some of the biggest source of toxins that harm people with common genetic susceptibilities.
The factors triggering inflammation and escalating multisystemic chronic disease in my case were mercury off-gassing from dental amalgam “silver” fillings, compounded by Lyme not sufficiently treated, and mold exposure from a one week visit to a FL condo that was not remediated properly. It turns out I have genetic susceptibilities to these toxins due to glitches in something called the methylation pathway, and a glitch in my immune system so I don’t fight things off well. I knew about the latter from life history, not about the former.
Everyone with any health issues whatsoever should look into these factors, and all researchers and pharmaceutical companies should look incorporate them. Instead of just focusing on patented silver bullets to alleviate symptoms, first screen patients systematically for genetic glitches and for toxins, and identify and separate out the toxins that are not good for us. This must be done safely, when a regular dentist drills out old amalgam with only a dental dam, it increases one’s exposure and bioburden of neurotoxic mercury.
Why don’t we hear about this from the ADA and our dentists? It turns out the ADA had patents on it, and put a gag order on dentists in the ADA Code of Ethics. The FDA? NIH? I’ve written an Issue Paper, For Good Health, Integrated Whole Body Care, and Making Chronic Diseases History, on the science, economics and regulations, with recommendations, posted at http://www.hiddenriverhealthchallenge.blogspot.com.
It turns out we don’t just need to be advocates for our own health, but advocates for others.
Most people I know who have strugged with Fibro do in any case turn out to have adrenal and thyroid problems, the majority, this is why there is a world wide drive to improve the testing, allow the banding to be less narrow and also give people a choice of treatments, not just big pharma synthetics. I do not know one person with Fibrio who has not got better from their ME if their Thyroid is brought into line.
I love this website but unf don't visit it often enough....When I do it gives me such consolation & hope..
Thank you. .
My step mother has fibromyalgia and I know some of the symptoms are unbearable sometimes, and taking pain killers has no effect, she has now got to the point where she has lost a lot of her mobility as it is painful to walk short distances, she has also symptoms of depression due to the pain and lack of mobility, her condition seems to be stable at the moment, but this seems to fluctuate, hoping that you are able to find some relief from your symptoms.
@Laura Henze Russell-
I CONCUR!!!!! I just turned 50 & am devoting the rest of my life in sharing what I've learned about the truth behind getting diagnosed w/any of the following; fibromyalgia, CFS/ME, MS, Parkinson's, Alzheimers, RA, ALS, Lupus, and/or any of the sclerosis; these diseases are caused by a combination of metals toxicity & pathogens (bacterial, parasitic, viral)
In the 90's I was told by 4 MD's to just take Pepcid, & then prilosec/nexium for my stomach pain & advil for my migraines. After years of Dr appts I was finally told I had CFS/fibromyalgia. In 2012 when chronic pain turned acute; I had my gall bladder removed and that was 4 years AFTER being told to go gluten free & diary free and that ALL my joint pain/stiffness, muscle aches, pinpricks, fatigue, sinus pain, headaches, vertigo/balance issues, ringing ears, tingling arms, brain fog, ADD, shortness of breath w/asthma-I was told would all go away w/diet change and correcting Vitamin/mineral deficiency. Well, 4 years of strict diet and supplements did NOT solve health issues (it helped somewhat)! And then as I neared menopause, my MD, who claims to be 'integrative', just focused on attributing all my symptoms on menopause and hypothyroidism (which were NEW symptoms)!!!
June of this year, I finally found an awesome holistic ND who FIRST discussed & tested me for environmental toxins and pathogens. Proper testing revealed HIGH levels of mercury, lead, & aluminum! It's due to having a broken thermometer in my purse in 1983, getting a mouth full of 'silver'fillings also in 1984 & then in 2006, having an old filling drilled out; that was the last straw that broke this camels back. The metal toxicity suppressed my immune system=the inability to fight off bacterium & virals became reactivated!!! I am being treated for Lyme co infections and will then get chelation treatment. I'm SO looking forward to feeling like a normal human being again vs feeling like an alien is inside roaming around!
Sharing personal information to others with the same health problem can aid them in living day to day in a much better atmosphere.
I'm still not sure that fibromyalgia actually exists as an independent pathology. It may be part of a complex of rheumatic symtomology engendered by various auto-immune factors. It is a very convenient fall back for internists and other primary care providers when other diagnoses prove untenable. When the middle age man or woman comes in with "I have severe muscle pain or joint pain" and doesn't have a readily diagnosable condition the ultimate universal catch all muscle condition fibromyalgia normally comes to the fore. Just like many other diseases such as type 2 diabetes that are caused by or aggravated by lifestyle choices there is no cure for it. After one has been a fattening hog (like me) for years, the body simply rebels at the stress that morbid obesity, cigarette smoking, hard drinking, recreational drugs and other no-no's place on the body's systems. If one doesn't overeat, smoke or use tobacco, drink excess alchohol or use recreational drugs one is not normally bothered by the pernicious chronic wasting diseases. But if one is 100 lbs. overweight, smokes like a chimney, drinks a six pack or more of beer a day or enjoys his daily dose of grass, cocaine, herion, or crystal meth he or she is doomed to have a chronic disease of one type or the other some diagnosable like diabetes mellitus or undiagnosable like fabricated myalgia.
So good to hear other people like me, I don't feel so pathetic and useless knowing it's not just me.changed my diet and taking magnesium supplements,thanks to the people who thought of this blog.please keep it up.will let you know how I get on.
I have suffered with Chronic Pain, and been diagnosed with Fibromyalgia 25 years ago, and recently again at a Pain Clinic by a Doctor specialising in Pain.
I live in Australia and we are always watching research and development in the U.S. in regards to treatment of FM. I follow one blog of a person with Fibromyalgia based here who feeds lots of information, but suffers greatly.
I do think a small percentage of Pain Suffers diagnosed with FM are wrongly done so, but all I can add is the more people stand up and say it is real, it needs to be researched ongoing, the better off we Fibromyalgia suffers will be.
My condition, and I will add that I am Male, is disabling. I cannot work but do look at the small things that are so wonderful each day like being able to talk, See, and simply see Beauty in things.
Peace anf Love to all who are suffering, may there be joy in whatever way you can achieve.