The month of May is recognized as Fibromyalgia Awareness month, with May 12th being the official Fibromyalgia Awareness Day. So what does all this awareness mean? And how is it really benefiting us?
If you have been diagnosed longer than a few years, you most likely recognize the shift in the awareness and overall understanding of fibromyalgia. Yes, there are still uneducated nay-sayers out there, but the gap between reality and perception is definitely closing in and this is a very good thing. Awareness is key!
So again, what does all this Fibromyalgia Awareness mean and how do we benefit? Here is my take on the matter:
5 Reasons Fibromyalgia Awareness Campaigns are a Good Thing
1. No longer having to give a medical dissertation every time someone learns I have fibromyalgia.
Even if their understanding of FM is only as “that pain thing,” most people have heard of FM, know someone with FM, and have a general understanding of the debilitating symptoms of FM. I no longer feel like I am fighting a losing battle in trying to help people understand this complicated condition. Every day there are more and more resources out there, which generally give sound explanations and advice – like the American Pain Foundation, and their campaign to spread awareness. Good stuff!
2. A greater understanding and awareness of fibromyalgia in the medical community.
And again, yes, there are exceptions. We all have our doctor horror stories, but more and more I am hearing stories of wonderfully helpful and compassionate doctors; doctors serious about addressing the complex and highly individualized symptoms of FM; doctors determined to find ways to bring their patients relief and improve their quality of life. There is an ever increasing number of doctors out there determined to take on the ugliness that is FM, and this shift is a direct result of a growing compassion due to growing awareness.
3. New diagnostic criteria.
One of the main reasons fibromyalgia has not been easy to diagnose, treat, and even understand is there is no definitive diagnostic test. The fibromyalgia tender point test is so subjective that many medical professionals did not place any value in it as a means to diagnose FM (and therefore avoiding dealing with FM patients altogether). The results can vary from day to day with each FM patient, and each practitioner brings their own subjective understanding to the process. Too much variance! But now that FM is widely accepted as a legitimate chronic illness, clearer and better diagnostic criteria are being developed, and this is a very good thing. There is hope that eventually there will even be a definitive diagnostic test, possibly Brain Imaging, saliva, or blood testing. Better understanding and treatment are on the horizon.
4. A greater understanding of what can and will help alleviate symptoms of fibromyalgia.
While there is no clear cut – “Do this, Don’t do that” – we do have a better understanding of the lifestyle changes we can make that will help improve our quality of life. We understand that mindful movement is important for our bodies, with the key word being mindful – mindful of our own unique bodies and limitations. We understand that nutrition plays a large role in exacerbating the symptoms of FM. I have yet to meet a person with FM that did not benefit from eating a healthier diet. We understand that relaxation and stress management play a huge role in the severity of our symptoms and our ability to cope. Yes, our minds and bodies are clearly connected. We understand that we have a measurable amount of control over the suffering involved in living with a chronic illness. We have choices!
Happiness is a choice, not a condition. ~Carlos Santana
5. Hope and Community.
HOPE: More and more I am reading and hearing success stories of people learning to live well with fibromyalgia. This is not the same thing as living symptom free of FM. Living well generally occurs after a period of emotional exploration leading to eventual acceptance – acceptance that we are whole, despite all that is different – we have options, despite all that has changed – we are valuable, despite all we have had to let go. With acceptance, we are free to explore the potential of today and the promise of tomorrow. And we are all full of potential!
COMMUNITY: More and more I am seeing new bloggers in the fibromyalgia community, more facebook groups, and just a general outreach and community building effort. I have said it before and I will say it again – Community is Everything! Where else would we turn for understanding, support, information, education, encouragement? Some of my dearest friends have come to me through my FM community. I love when I see friendships form between people who have connected on a blog, or facebook page , or twitter. It is happening everyday, and it is a beautiful thing!
So this is what awareness looks like. This is how awareness creates change. And this is how we each benefit from the continued awareness of fibromyalgia created by campaigns like Fibromyalgia Awareness Month, and Fibromyalgia Awareness Day. Get involved. Do something to help spread awareness – talk about it, write about it, leave a comment on your favorite blog, send an article or a great online resource to your doctor or your loved ones. Do something. Be a part of the change.
Thank you for helping me see all the reasons awareness is important! Your words are, as always, inspiring. 🙂
This disease is already recognized by the doctors and from there is a great step forward. The concern is the large index – vicodin, lortab, or legally – prescribed medications that doctors use to counter the pain.
I am an RN working in an ED. Although this condition is recognized by many doctors, I would
caution anyone that among ED doctors we are, for the most part,recognized in a very negative
sense.
I was treated to an extended rant a few days ago by one of the doctors where I work about how
this is a bogus condition and we are all drug seeking lazy neurotics. Unfortunately, I hear that
sort of comment DAILY from docs and nurses. We are prejudged in the ED setting even when
the problem is a broken arm or a kidney stone
There needs to be a lot more awareness education aimed at staff in that setting.
The ED Doctor that said Fibromyalgia is a bogus diagnosis needs
To go back to med school. My husband said that in the late 70’s and thru part
Of the 80’s that’s what doctors were taught. They were taught that fibromyalgia was just
A term to use when there was not anything else to diagnose someone with.
It makes me angry when people judge those with fibromyalgia, calling them
Lazy, drug seeking neurotics. They are uneducated ignorant comments. Karma will come back around and bite them in the ass. The drug seeking comments come from the Addicts that do use the term that they have fibromyalgia when they really don’t or have not even been diagnosed with it. The addicts have pretty much ruined it for those of us who could benefit from pain medication. Especially when prescriptions like Lyrica, Cevella. Neurontin and Cymbalta cause too many adverse side effects to take. I had problems with my face, neck, hands and feet swelling. And Cymbalta caused too much dizziness to even function. If Fibromyalgia patients go to a true pain clinic (not a pill mill) where they will drug test you and pull levels to make sure you are taking your medications as prescribed and using nothing else, it will benefit. You have to be very careful with Opiates. Remember though opiates do have a tendency to cause dependency if used over a long period of time. Never take more than you are prescribed. Infact a lot of doctors are trying not to treat Fibromyalgia with Opiates. However, there are some people who don’t have any other choice when everything else has failed. Some of the most common opiates doctor will use is Butrans and Tramadol.
Looking forward to see what you have to share about this awful disease.
I hate that others think those suffering from fibromyalgia are lazy. I am a 17 year old girl who got diagnosed a year ago. My life had changed a lot from it. I have daily horrible pains, I just graduated but through the year had loads of stress from high school. People don’t understand we need to relax, stay away from stressful situations. And change our lifestyle to cope with the pain we constantly live in. I’ve had to change jobs because of the stressful environment and the heavy lifting I couldn’t handle. Because of this I have people calling me lazy. Fibromyalgia isn’t a joke. It’s a serious condition and I feel there needs to be more awareness for it. Sure it’s not cancer, we won’t die from it. But we feel chronic pain that others don’t go through on a daily basis. I hope there will be a fibro campaign in Washington because me being so young with it would love to take part. Please help raise fibro awareness.