Fibromyalgia

With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.

National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”

Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.

Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the http://www.invisibleillnessweek.com web site.

If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see http://www.invisibleillnessweek.com for details. Invisible Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.

Copen is also the founder of Rest Ministries which sponsors the event and http://IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.

Media Relations Contact

Lisa Copen
National Invisible Chronic Illness Awareness Week
858.486.4685
http://www.invisibleillnessweek.com

Do you toss and turn at night because of fibromyalgia pain or discomfort?

“People with fibromyalgia tend to have very disturbed sleep,” says Doris Cope, MD, director of Pain Management at the University of Pittsburgh School of Medicine. “Even if they sleep 10 hours a night, they still feel fatigued, don’t feel rested.”

Research shows that with fibromyalgia, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles don’t heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with fibromyalgia wake up feeling tired and fatigued.

The result: The body can’t recuperate from the day’s stresses — all of which overwhelms the system, creating a great sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of fibromyalgia.

Insomnia takes many forms — trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Smoothing out those sleep problems — and helping people get the deep sleep their bodies need — helps fibromyalgia pain improve significantly, research shows.

Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally.

Tips to Get Better Sleep With Fibromyalgia

Creating a comfort zone at home is key to better sleep, whether you have fibromyalgia or not. It’s all about easing into bedtime feeling relaxed — and staying relaxed so you sleep through the night.

These 10 tips can help people sleep better:

* Enjoy a soothing (warm) bath in the evening.
* Brush your body with a loofah or long-handled brush in the bath.
* Ease painful tender points with a self-massage device (like a tennis ball).
* Do yoga and stretching exercises to relax.
* Listen to calming music.
* Meditate to tame intrusive thoughts and tension.
* Sleep in a darkened room. Try an eye mask if necessary.
* Keep the room as quiet as possible (or use a white-noise machine).
* Make sure the room temperature is comfortable.
* Avoid foods that contain caffeine, including teas, colas, and chocolate.

Therapies to Treat Insomnia When You Have Fibromyalgia

If you’re still having sleep problems, several therapies can help, including biofeedback, relaxation training, stress reduction, and cognitive therapy. A psychologist who specializes in sleep disorders can discuss these therapies with you.

The therapies help people handle stress better, which helps control fibromyalgia episodes, Cope says. “Fibromyalgia comes and goes,” she tells WebMD. “When you’re stressed out, that’s when it’s worse.” That’s when you’re most likely to have insomnia, too.

Medications can also help ease fibromyalgia pain at night, or directly treat insomnia. Medications to ease fibromyalgia at night include antidepressants, anticonvulsants, prescription pain relievers, and sleep aids.

No one therapy will control fibromyalgia pain 100%, Cope adds.

“Medications help some. Exercise helps some. Stress reduction helps some. Cognitive behavior therapy helps some… If you can get restful sleep, you’re going to function better when you’re awake.”

Source: WebMD

Today was one of those days where I needed a cane for support, or at least I felt I would before I got home. I went to the post office, then the grocery store next door. They didn’t have what I wanted so I crossed the street & went to the other grocery store. I left there with a little more than I was expecting to purchase, so I had two bags that I was carrying, one of which had a heavy bottle of pop. I went a near by restaurant to order & take home supper. This gave me another bag to carry with my cane, the other two bags and my purse.

What was I surprised about? There was a lovely young lady who not only opened the first door out, but also the second door out. And she went out of her way specifically to help me. This is a rarity in my neighborhood, even more so that she was black and young. (I’d say Africa-Canadian, but she would have been Jamaican). Either way, I was pleasantly surprised that someone gave me assistance, unprompted.

I was told the other day by the person who I look to most for help & support with my fms & everything else, exactly that. He doesn’t believe me. He thinks I’m either making it up & have fooled all the doctors and specialists, Or it’s all in my head. He said he’s never really believed me since he met me.. He thinks I’ve been lying to the world this whole time, that I have been putting myself through test after test after test, several invasive just to play sick? He thinks I’m a leach on the government rolls because I get disability (and we all know how easy that is to get). That it’s my self esteem that’s screwing me up. He’s thinks that I’ve got nothing of value.. Nothing to offer.. I’m nothing of value.. *sigh*

How much more of a stab in the heart is that?? How much more hurtful can one person be??

Some widgets will be added down the side.. I still need to update my links, and I apologize for that.. I didn’t get much notice that I was changing my look.

I will still be adding posts when I can.. & as you can see by the NIN post below, they are not always health related *g*.. Enjoy!

Nine Inch Nails man blames ‘Metal Sludge’ for ruining social networking

Nine Inch Nails‘ Trent Reznor has taken a vow of silence on Twitter.

The singer had been using the mirco blog site to banter with fans, give his opinions and infamously declare that Chris Cornell’s last album was so bad it made him feel “uncomfortable”.

However Reznor has now decided he will not be using his account anymore, except to make announcements, and he will not be replying to anyone.

According to Musically.com, the singer blamed spammers and haters for his self-imposed silence.

“I will be tuning out of the social networking sites because at the end of the day it’s now doing more harm than good in the bigger picture and the experiment seems to have yielded a result. Idiots rule,” he wrote.

He also blamed hardcore fans who were targeting him, adding: “Looks like the Metal Sludge contingency has discovered Twitter! Finally! For those of you that don’t know what this is, please let me explain. Metal Sludge is the home of the absolutely worst people I’ve ever come across. It’s populated mainly by unattractive plump females who publicly fantasize about having sex with guys in bands. Kind of like a role-playing game where people nobody will f**k make up stories about their incredible sexual encounters with people they wish they could f**k.

“It would be kind of funny in a sad and pathetic way except the fun doesn’t stop there – hate and good old-fashioned outright blatant racism are also encouraged to spice things up and remind you how truly ugly these scourges are. Truly ugly on the inside (the outside is obvious).”