Fibromyalgia is one of those hidden diseases that is still very much a disease that’s fighting to be recognized (Fibromyalgia debate continues ), which adds to the difficulties faced by those who live with it. They know it’s real – they have to live with its effects on a daily basis.

According to the National Fibromyalgia Association :

In 1993, May 12 was designated as the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) by Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden. Despite her illness, she managed to found the world’s first School of Nursing.

The National Fibromyalgia Association (NFA) joined the Awareness Day effort in 1997 and has led the call for increased recognition of fibromyalgia each May 12.

When different causes have national days or weeks, or even months, I’ve heard people say, “what’s the point?” And, while I can see how it can get tiresome seeming to always have a cause of the day/week/month, this is often the only way to get people to understand, to recognize, the existence of these issues.

Fibromyalgia is a complex disorder that has a range of symptoms, from fatigue to pain and more. It affects both men and women, but women with fibro outnumber men by far.

After many years of doctors not understanding what fibro was, diagnostic criteria was determined by the American College of Rheumatology (ACR) in 1990.

The vague nature of the complaints may often be mistaken for other illnesses, so doctors are encouraged to rule out other illnesses first. This is often called, diagnosis by exclusion: by excluding possible illnesses, you’re left with fibromyalgia. When a doctor is diagnosing fibro, it usually includes a history of widespread pain all over the body for at least 3 months. There is also pain in at least 11 of the 18 designated tender points – brought on when a specified amount of pressure is applied.

If you believe you may have fibromylagia, speak with your healthcare provider. While there’s no cure for the disease, there are ways you may be able to manage the symptoms, and make life easier for yourself.

For more information on fibromyalgia, you can visit:

MayoClinic.com

National Fibromyalgia Association

FM-CFS Canada

UK Fibromyalgia.com

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Image: Newscom

Post from: Blisstree

National Fibromyalgia Awareness Day

I really don’t know what to think about this. Read the blog entry, Battered Woman Imagery in Pfizer’s New Fibromyalgia Ad, and tell us what you think? Is this a good approach? Or just another way to try and sell the Lyrica that is targeted for the fibro market?

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Post from: Blisstree

Yikes – Pfizer’s ad for fibro awareness

If you’ve been living with fibro for a while, you likely know some, if not all, but it’s always worth taking a look in case there is something you didn’t think of. It’s a good resource for those who are new to fibro or know someone who has it.

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Post from: Blisstree

7 tips for living with fibromyalgia

This week, we welcome Bonnie Hensley, a 50-year-old registered nurse in the Seattle area joins us. She tells me that she works 56 hours in a 2-week period (3 days one week, 4 the next) in a community hospital operating room.

She’s been an OR nurse (”all I’ve ever done as a nurse,” she says) since 1989.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

It was about two years ago or so, don’t remember exactly when. I was tired and achy all the time, no matter what I did or didn’t do. Felt like I’d been beat up, every part of my body ached and it was frequently a deep ache.

Did you seek help right away? If so, what type of help and, if not, why not?

Put up with it for a few months, thinking it would go away (yeah, right). Finally saw my primary care doc, mostly because of feeling worn out all the time. She did a few labs and a bone scan, and referred me to a rheumatologist to see if I had Rheumatoid Arthritis or something else.

What did the doctors tell you when you did seek help?

He did a thorough exam and several labs. Concluded that I did have fibromyalgia, and a type of lupus (not RLE). He told me that fibro was real, that they didn’t really know what caused it, there was no cure, but symptoms could be managed.

What have you tried to help you with your pain?

Changing my anti-depressant helped some, as did a prescription sleeping pill (it’s really bad when I don’t sleep well). I take a non-opoid pain med when the aching gets to be too much (and when I’m at work–it doesn’t mess with my brain but helps with the pain), and a narcotic at home, sometimes supplemented with a muscle relaxant. Sitting in the hot tub feels pretty good while I’m in there; whether it’s the warmth or the relaxation, I don’t know. I’ve also tried to ‘deal with it’ and ignore it.

Can you tell me a bit about what worked and what didn’t?

“Dealing with it” and ignoring it does NOT help! Fibro will NOT go away. It took me about a year to figure out that trying to fight it wasn’t working, and that it isn’t a failure to take pain meds if it makes life tolerable. The sleeping pill (Lunesta) helps, but doesn’t always help me get a good night’s rest (however, SOME sleep is better than none!). Tramadol enables me to continue to work when the pain starts to get bad. I’ll take a Vicodan when I’m at home, and when it’s really really bad I take two Vicodan and a muscle relaxant (tizanidine) and then I’m essentially unconscious for about 3 hours (but there’s no pain!).

How does having this pain make affect you in terms of how you live your life?

I don’t do as much as I used to, and I don’t have as much energy. I have to pace myself when doing things. Sometimes I have to ask for help at work or request a less physical assignment. I’ve also had to start thinking about other options in my career for the future, because I don’t know how long I’ll be able to continue doing a job I love because of the physical demands. I’m extremely lucky in that I have a very understanding husband who looks out for me and does a lot more around the house than I do.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I wouldn’t try to fight it. Accepting this thing was probably the hardest part.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Don’t give up; fibro is REAL and you shouldn’t have to suffer because others don’t know it’s real. Yes, it does change your life, but it’s not the end of your life. Don’t try to over-do on the days you feel good, because you’ll only suffer more the next few days. You aren’t a ‘failure’ if you have to take a pain pill. Don’t be afraid to ask for help. Find a support group, either one you can personally attend or an on-line group where they all understand what you’re going thru and can give you some suggestions for different ways to do things, ideas to make every-day life better, and a place to SCREAM at people if you feel like it.

Thank you Bonnie, for adding your voice to Company’s calling. As you say, fibro is real but there are many who don’t understand it. Please come back and visit to let us know how you’re doing.

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Image: iStock.com

Post from: Blisstree

Company’s calling – an RN speaks about her fibromyalgia

The MayoClinic.com has addressed this and published Fibromyalgia myths: The truth about 9 common myths.

Here’s one: “Myth: You were diagnosed with fibromyalgia because your doctor couldn’t find anything wrong with you.”

If you have fibromyalgia, there’s a good chance you’re heard most, if not all, of these. If you don’t have fibro, have a look to see what you did know and what you can learn about the disorder.

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Post from: Blisstree

9 Fibromyalgia myths