Making fibromyalgia visible this May

Posted May 7th, 2014 by

The National Fibromyalgia and Chronic Pain Association (NfmCPA) is recognizing Fibromyalgia Awareness Month with an awesome theme – “C.A.R.E. & Make Fibromyalgia Visible.” C.A.R.E. stands for Contribute, Advocate, participate in Research, and Educate others about fibromyalgia, and that’s exactly what’s going on throughout May.

Fibromyalgia (commonly shortened to “fibro”) causes widespread body pain or aching muscles – myalgia – that can be localized to specific areas called tender points. Other symptoms include tingling, numbness, fatigue and sleep disturbances.1 In most cases, fibromyalgia is limited to women, but men and children can also be affected – it’s estimated that 3% to 6% of the world’s population has the condition, and about 1 in 50 Americans are living with fibro at any given time.2 3

So how can you help raise awareness for fibromyalgia in May?

The fibro community on PatientsLikeMe is one of the largest on the site, and it’s growing by the day – this time last year, there were about 30,000 in the community, and now, it’s more than 42,000 strong! They’re donating their data through personalized health profiles and sharing their stories in the forum to help others with fibromyalgia.

The cause of fibromyalgia is not fully understood,1 and if you’ve been diagnosed, no one understands what it’s like better than you – connect with others living with fibro today and start sharing your experiences for Fibromyalgia Awareness Month.

PatientsLikeMe is the most empowering place I could ever imagine, giving us all not just information, but courage enough to be proactive rather than sit back and hope the doctor is doing the right thing…” – Fibro member Lizupatree

 

 

 Share this post on twitter and help spread the word for Fibromyalgia Awareness Month.


1 http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

2 http://fmaware.org/site/PageServera6cc.html?pagename=fibromyalgia_affected

3 http://www.myfibro.com/fibromyalgia-statistics


2 Comments

  1. I had fibromyalgia for two decades, then a year of escalating medical hell that nobody could diagnose. Then, by the grace of god, an integrative doctor I was seeing on top of all the specialists heard a presentation that symptoms like mine could be caused by reactivity to dental materials. I felt like Alice in Wonderland falling down the rabbit hole. I found a another universe of practitioners, and got consultations with biologic dentists and functional medicine physicians, and had a dental materials biocompatibility blood test (BioComp Labs and Clifford Labs offer them).

    It turns out I had mercury poisoning from my dental fillings – several old ones had been drilled out to make way for crowns and root canals soon after I stopped breastfeeding two decades ago. I also had two exposed amalgams in bicuspids. I have an immune glitch so always had bad teeth, with plenty of “silver” fillings over the years, which contain 50% mercury.

    I rapidly improved with removal of the exposed fillings by a biologic dentist, who has special training and safety equipment well beyond a dental dam to protect from mercury vapor that offgasses with heat and abrasion, which is massive during high speed drilling. This is why most dentists don’t recommend removing them. But it can be done safely if your tests indicate.

    There are a half dozen genetic glitches in methylation and detoxification pathways that increase susceptibility to mercury toxicity and the plethora of chronic illnesses that can result from the inflammation it causes in the body, brain, cells, nerves and organs. It is important to know your genetic code, and screen for heavy metals and toxins that act as “malware” in our bodies, and work with experienced medical practitioners to remove them safely, and restore health. Toxins are synergistic, so people with genetic glitches and health impacts should also be screened for other heavy metals, chemicals, Lyme, molds, and other pathogens.

    I lost all my fibromyalgia, and a host of other serious health problems I had developed. I am off all medications except for a compounded vitamin-mineral complex that helps compensate for my genetic glitches with special forms of folate and B-12, for example. I have returned to the health of my youth, which is amazing to me. I hope others have similar success.

    We need to reboot our health system to focus on discovering and uncovering the causes of chronic diseases, and addressing them. We may not need a lifetime of medication management, but proper treatment of underlying causes, to restore healthy functioning. I hope Pharma companies get interested and explore these treatment options, using clinical trials. There is more about this issue on my blog, http://www.hiddenriverhealthchallenge.blogspot.com.

  2. I too have had so many joint problems over the years and its getting worse and worse. I stay away from meds and surgerys, but try other things. Now since I had additional crowns put in my mouth years ago I have had severe burning mouth and lips. Since my regular dentist replaced the new crowns and it got worse actually I found a holistic dentist who then worked on a more serious problem on my front bridge and now I have a partial which compounds the problem. I have had the biocomp lab blood test and finally scheduled to replace those new crowns next month with the only one dental material I am compat with that they have and that is diamondcrown. I he4ard others say it is not strong. I am wondering if that is my whole problem and if I need the C;lifford test or is that the same as the one I had. I too have had mercury fillings over the years and the ones removed were replaced with crowns, etc. It is so frustrating with all the pain and now mouth issues burning bad and the money and time involved also.,

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