Archive for July, 2009

Five Things to Know About CFS

July 21, 2009

Five Things You Should Know About CFS
by Amanda Rinkel
May 7th, 2009

I’ve already kicked off International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day on May 12 a little early with my post on Five Things You Should Know About Fibromyalgia, and I’ve returned with more information, but this time about the chronic illness Chronic Fatigue Syndrome. Once again, no hilarity, no breaking news stories, just some information I think you should know.

Five Things You Should Know About Chronic Fatigue Syndrome

1. The hallmark of Chronic Fatigue Syndrome is fatigue, but it isn’t “normal” fatigue. When a healthy person is tired, they can rest or sleep to relieve fatigue, but a person with CFS cannot. Sleep and rest don’t help and activity can make the exhaustion worse.

2. Up to 75 percent of patients with Chronic Fatigue Syndrome potentially have or have been diagnosed with Fibromyalgia as well. That is up to 3 million people.

3. There are 4,000 confirmed abnormalities between a CFS patient and a healthy individual, yet none of these abnormalities have been identified as a cause or as a diagnostic marker.

4. 1-4 million people in the United States have CFS yet only 20 percent have been properly diagnosed with the illness and are receiving the proper treatment.

5. Chronic Fatigue Syndrome has been said to be as functionally disabling as Multiple Sclerosis, AIDS, End-stage Renal Disease and Chronic Obstructive Pulmonary Disease.

To learn more check out


Five Things to Know About Fibromyalgia

July 21, 2009

Five Things You Should Know About Fibromyalgia
by Amanda Rinkel
May 5th, 2009

International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day is next week on May 12th. I’m going to take a break from articles on internet wastes of time, movie reviews and news updates. Instead I’m going to take a moment to highlight these illnesses and the necessity for awareness.

Five Things You Should Know About Fibromyalgia

1. 3-8 million people in the United States have Fibromyalgia and up to 80% are women.

2. Fibromyalgia most commonly hits between the ages of 20-40 years old, at the “prime of life.”

3. It has been nick-named “the pain disease” because of the characteristic wide-spread, migrating body pain patients have. The pain has been described differently by each patient from dull aches to deep bone pain to burning, tearing, singeing, stabbing or shooting. The breadth of pain descriptions is what makes diagnosis difficult.

4. People with Fibromyalgia have cognitive difficulties, such as memory problems and attention issues, that has been nicknamed “Fibro fog” or “brain fog.”

5. Fibromyalgia is considered as functionally disabling as rheumatoid arthritis but is much less accepted and recognized by both the medical establishment, Social Security and the community at large.

To learn more check out


Fibromyalgia Pain at Night

July 21, 2009

Fibromyalgia Pain at Night – 10 Tips for Better Sleep
WebMD Feature By Jeanie Lerche Davis

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

FM/CFS – What Do You Miss the Most?

July 19, 2009

FM/CFS – What Do You Miss the Most?
By Adrienne Dellwo

It’s the rare person with fibromyalgia or chronic fatigue syndrome who hasn’t had to give up some activity. Whether it’s something little (like an occasional hobby), or something major (like a career), we’ve all made those sacrifices.

I’ve had to give up some things because I simply can’t do them anymore, and other things because of the toll they take on my health and functionality (and some for a combination of both reasons.) I’ve given up my TV news career, my gym workouts (a weight circuit plus 45 minutes on the treadmill? Are you joking?), occasional hiking trips, major home improvement projects, etc. Fortunately, I’ve been able to gain back long walks (on good days), gardening, a social life, and enough of my brain to write a few blogs and articles every week.

Some things, though, I still don’t have back. While I hope they’ll someday be part of my life again, there’s no guarantee. I have to say, I really miss long days of shopping. I used to spend hours wandering through shops, being inspired by things I saw and just enjoying the whole experience. I also have to admit I really miss being able to eat whatever I wanted. I was recently diagnosed as gluten-intolerant (not Celiac, though), and I’m especially missing “convenience” foods — have you ever noticed how much of what Americans eat comes breaded, on some form of bread, or wrapped in a tortilla? Earlier today I broke down and ate a single chocolate chip cookie, and now I have pain in my esophagus and intestines.

On the emotional side, I miss the feeling of freedom. I used to feel free to pursue whatever hobby, vocation, interest, etc. I wanted to pursue. Now, I have limits. I miss the benefits of the higher income I could have if I were healthy. Some opportunities are no longer available to me. I resent the limitations within which I have to live.

I try to keep in mind that a lot of people have had to give up much more than I have because of these illnesses, but at some moments I just have to get angry or frustrated about it. We all have to vent now and then to keep from exploding, right?

What activity do you miss most? Is it something you think you’ll be able to “reclaim” eventually? What feelings, attitudes or assumptions about life do you miss most? Vent your feelings about it here, by leaving a comment below!

Source:Fibromyalgia & CFS Blog, Guide to Fibromyalgia & CFS

I miss Amusement parks & Camping the most..
I miss the friendships I used to have where health wasn’t a factor.

10 Behaviours Patients Shouldn’t Put Up with…

July 14, 2009

10 Behaviours Patients Shouldn’t Put Up with from Their Doctors
by Lisa Copen

We will never find the perfect doctor, as they are all human and none of them are perfect. It comes as no surprise to most of us that they call their profession “the practice of medicine.” One of the leading causes of death and injury in the United States is medical mistakes.

Statistics show that medical errors result in death in the lives of somewhere between 44,000 to 90,000 people in the United States. This is more than those who are killed by the struggle of breast cancer or automobile accidents.

Regardless of whether you are generally healthy, or live with a chronic illness, you still need a physician you can trust. Though an occasional small mistake may occur, it is especially important that you have a doctor who is eager to be part of your medical team for both short-term and long-term treatment.

Are there some sure signs you shouldn’t listen to your doctor and you should seek a second opinion, or maybe even shop around for a new physician? Definitely!

1. Your doctor does not listen to all of your symptoms or ask questions about them. He is quick to write down his interpretation when you have not fully been able to explain yourself.

2. Your doctor is persistent about prescribing medicines that are recently available. He does not explain what the medication is, why you need it, how will help your situation, long-term effects, or if there is a plan to get you off of it. You can see the promotional items for the medication around his office.

3. Your doctor acts as if he knows less about your condition that even do. You leave the appointments feeling like all you did was report in your latest symptoms while he took notes.

4. Your doctor doesn’t have confidence to treat you, rarely providing actual advice or instructions, but rather says, “What do you think we should do?” or “You do whatever you think is best.”

5. Your doctor has a list of procedures or tests you need to have without taking into account the impact it could have on your current health, or your chronic illness. A good doctor keeps your entire well-being and body in mind, not just the part he is “working on.”

6. Your doctor seems to give you that look like he is humoring you. When you describe something you read, or ask a question about a new treatment you have heard about, he looks at you with skepticism and a smile and then writes some notes. It feels condescending.

7. Your doctor refuses to let you see the medical records he has on you and your condition. If you request them he says he will send them to another physician, but he seems to go out of his way to make sure you don’t personally receive them. At some point you may apply for disability financial support and the social security disability review doctors will want to review your medical history. It is important the records are accurate.

8. Your doctor is rarely available when you need his expertise the most. When you need to make an appointment at the last minute for a special reason, he is not available. He is late in approving refills for prescription medications. His office does not return calls and if you page him after hours for an emergency he doesn’t call back for a long time.

9. Your doctor doesn’t believe you are in deep pain. He is stingy with pain medication, even when your pain level is extreme and you have proven to be a responsible patient with pain medications.

10. Your doctor seems to appear threatened or annoyed when you wish to get a second opinion or see a different kind of specialist. He does not comply when you ask him to fax his notes to another physician who should be in the loop of your treatment. He seems to think he is the only one who can meet your medical needs.

The best doctor will listen to you thoroughly, take good notes, explain the benefits and drawbacks of medications, and make you feel like you are an integral part of your medical team.

We may never find the perfect doctor, and it may take a while to find someone who is a good match for both our medical condition and our personality. But don’t allow your health to be risked just because you are too afraid to speak out and be assertive about your health care needs.

Author’s Bio
Read Lisa’s newest book, Why Cant I Make People Understand? Order at Subscribe to a great weekly ezine HopeNotes and get a free download of 200 Ways to Encourage a Chronically Ill Friend. And tune in to Lisa’s weekly podcast at Hope Endures Radio at the web site. Lots of support is available


July 13, 2009

I was pleasantly surprised today.

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 to 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 neighbourhood, 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. 🙂

For her help, I again say thank you . 🙂

& I have 2 original articles of my own coming soon!