It's almost May 12 -- the National Awareness Day for Fibromyalgia and Chronic Fatigue Syndrome. Our wonderful advocacy groups have organized events around the country, but millions of us can't be a part of them due to illness, geography or both. But that doesn't mean you can't do something today to raise awareness!
If you're on Twitter or Facebook, you can raise awareness very simply -- make lots of posts on Thursday. You can also re-tweet, share or copy and paste the posts I'll be making, or those from other people working to get the word out. You can email articles to people in your life who could use a better understanding of our illnesses. Here are some recommendations for you:
- A Simple Explanation of Fibromyalgia
- A Simple Explanation of Chronic Fatigue Syndrome
- When Someone You Know Has Fibromyalgia or Chronic Fatigue Syndrome
- Fibromyalgia Fact Sheet
- Chronic Fatigue Syndrome Fact Sheet
Additionally, you can print articles and hand them out, or post them in public places.
I know many of us run into people who don't believe in our illnesses and can be downright cruel about it, and I certainly don't want you to put yourself in that kind of position, but think of how much easier it will be when fibromyalgia and chronic fatigue syndrome are better understood and accepted by the public. At least 7 million of us are diagnosed and many more are living without a diagnosis. If each of us helps 2 people gain a better understanding each year on May 12, before long we'll wipe out the ignorance that causes so many problems for us.
How do you raise awareness, on May 12 or any other day? Leave your comments below!
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The adds selling the fibro drugs have helped raise awareness more than anything else. I guess if there is a drug for our disease it suddenly becomes real. The explanation about the over active nerves has helped more than anything else. Finally TV adds have helped as much as they have harmed.
I have had Fibromyalgia since 2005. It all started with a low carb diet that included lots of aspartame. Suddenly I was in constant pain. I was so tired and my legs felt like I had just ridden a bike up hill for miles.I can’t think of words that are on the tip of my tounge.I can’t consentrate and I feel foggy.People think I’m on something or just stupid. I manage my pain without codine.Im allergic to it. I am in college full time and have a 4.0.,but it’s a struggle. I hate it when I don’t have the energy to go hiking,or just for a walk.Today I felt very foggy,I didn’t want to drive but I had to. I backed my husbands jeep into a tree while looking at another tree!!!
I tell my friends to stay away from Aspartame.
Teresa, While I sympathize, it’s important to note that Aspartame is not the cause of Fibromyalgia. We’re better off without it but stopping it doesn’t cure or clear up or symptoms. However, good nutrition and a healthy eating plan can dramatically improve it. Take good care and I hope you’re feeling better soon.
I too came down with fibro after a strict no carb diet laced with sucralose and aspartame.
For Fibromyalgia Awareness Day I sent emails to my friends with a link to the magazine FM Aware. I also told “my story” with FM. FM is slowing getting into mainstream. Recently on the show “Bones” one of the characters had FM, although she was also the murderer! They always say all publicity is good publicity! FM needs a pink campaign as was done with breast cancer. Pink is so synonomous with cancer. The butterfly is the sympbol for FM – is there a ribbon with a butterly on it so we can show our support of FM? There is hope with FM. I’ve gone through 4 very tough years, but I seem to be in a remission since the last 6 months. I’m enjoying my newfound wellness. I still need pain medication along with my supplements and afternoon naps, but it’s much more managable now.
May 12th International Awareness Day for MCS, ME/CFS and FM will be here less than a month! We need everyone to participate this year to help make it the biggest year yet! Please check out our Facebook page for ideas and to post your plans. Every little bit helps – nothing is too small! We hope to hear from you.
http://www.facebook.com/pages/May-12th-International-MECFS-FM-Awareness-Day/220534562160?ref=nf
I have been dealing with pain for over 10 years. I have had dopplers, nerve tests and even back surgery. I can’t seem to get anyone to understand the pain. It started years ago in my legs like a tooth ache and it has progressed to pain in my neck, shoulders, arms, elbows, hands, hips and legs. I have trouble concentrating and with memory. I am also very sensitive to noise ( not sure if that matters) I am told it’s from my arthritis. I have been on celebrex for 10 years. I have also been of 2 different pain meds.I know people with arthritis and they are not going through what I do .It is so bad that I can’t sleep, exercise, walk around a store, do housework and I dread stairs. and sometimes don’t want to be around people at all. It started when I was about 50 years old. I see my Dr AGAIN 5/24 is there anything I can tell him to make him understand my pain
I have a purple ribbon on my Facebook profile picture. There are many people in my life who don’t understand.
I was diagnosed one year ago with fibromyalgia. Now the doctors are saying that I may have chronic fatigue syndrome also. I went through several traumatic experiences one right after another for twelve years, and I believe the stress has caught up to me. Some people do look at me like it’s “all in my head.” I cannot let other people’s reactions affect my self-awareness. I will fight to live the best life I can and love those around me while they are still here, lessons I learned during the twelve years of “situations.” Thanks so much for what you are doing; perhaps someone who reads about these debilitating illnesses will one day find an answer.
I was looking for an appropriate blog entry to leave my comment and CFS awareness seemed like a good one. This website and Adrienne’s work is the most informative and uplifting I have ever found. Thus, it is quite jarring when I open the page to have a flourescent coloured ad blinking at me! One of our symptoms: light sensitivity! I often have to quickly scroll down and end up missing the first part of the article. Perhaps something could be passed along to the folks in the ad department at about.com.
Sad to say that we need to bring awareness to the CDC and the NIH. If they don’t put their stamp of approval on literature about ME/CFS, its pretty much disregarded.
Fibromyalgia people are lucky that they have drugs that get advertised to millions of people every day.
But those of us with primary ME/CFS don’t have a drug. There is one but we can’t get it made available. Its been stuck in limbo for decades. There are drugs for other uses that could be sold under a different name with a different chemical makeup but since we have more than pain that causes our symptoms, it will take a century until our goverment lets drugs be used as treatment for ME/CFS.
I’ve been sick for nearly 3 decades and I know people who have been sick even longer. When we could, we fought the fight with awareness activities. There were a few TV programs, etc. But to what end. I’m not sure it accomplished a whole lot.
I’m not saying that its useless, but I am saying that the responsibility lies with people in government who are “intentionally” preventing us to get the help we need.
GrannyCFS
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Hello! I’m a fellow fibro survivor and my husband and I are getting ready to launch a great smartphone app specifically for fibro /cfs and me. We’re working with charities and organisations around the world to help their members with this tool (it tracks everything from pain to sleep, meds to journals and can be completely personalised to fit each person’s unique needs and requirements). We will be launching in June. Anybody interested can register on the main website and we can email you once released. Www . Bodymap apps.com. Our beta testers have found the app not only very helpful for gaining more insight and control with their illness but as an excellent backup tool for not only doctors but for insurance and benefits purposes. So, although it won’t be released for May 12th, it is to help peeps with FM! Just wanted t share this with you! A. X
I’m amazed that the only info on About regarding my illness – Chronic Fatigue Syndrome (CFS) ICD-9-CM Diagnosis Code 780.71 – is titled “Fibromyalgia & Chronic Fatigue”.
Calling this distinct illness “chronic fatigue” and lumping CFS with any other illness is a big mistake and adds to the confusion & misdiagnosis.
I’ve had CFS for 10 years now. The more I learn about it the more strongly I feel that it’s a mistake to talk about CFS and Fibromyalgia together.
The tricyclic drugs & other treatments for fibromyalgia that my doctor insisted I try exacerbated my CFS symptoms & sent me into a terrible relapse.
There should be separate About pages for each illness.
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