Wednesday, April 22, 2009

Fibro, in a nutshell

A Harrisburg, Ill., paper's notice of a meeting about fibromyalgia actually provides a pretty good description of the condition:

"Fibromyalgia is a chronic pain disorder with varying symptoms, so it is difficult to diagnose," Reeves said. "There is no definitive diagnosis for the disease."Some doctors eliminate everything else, then determine a patient must have fibromyalgia. Some doctors don't recognize the diagnosis at all, Reeves said. "

I would have liked to see a little more detailed listing of possible fibro symptoms, but they do discuss later in the article possible causes and treatments.

Wednesday, April 15, 2009

Tips to deal

A string of posts has been started on all about how we can and do deal with the day-to-day of living with fibromyalgia and related disorders. Please go by and add your own tips to help ease the pain of life!

Some already posted tips include:

"My Biggest Tip is that You Take Care of Self First, Make sure ya Eat a Good Breakfast...Cereals, Fruit...nothing Heavy, but Healthy...Look into Juicing...or home made Smoothies...Good stuff for you !! and Lots of Good Healthy Clear Liquids thru out ur Day...Apple juices, Cranberry Juices, lemon water...Teas...Good stuff to Help flush Any Toxins !! Taking Care of Self First, Insures that you will be better able to Take Care of your Babies !!"

"Another one that I use, is that when I am in the 'resting' mode, and watching t.v., I make myself get up and DO SOMETHING during the commercials. It is just a short time and then I get to sit back down again. It helps to get the 'chores' done in short spurts, without wearing yourself out. Plus, who likes to watch commercials anyway. "

"3. Do up 3 of 4 meals at a time. Spaghetti sauce freezes up nicely as does a lasagna and chili. Cut up raw veggies for lunches and suppers and keep in a bucket in the fridge. Salads will last a few days too.

"4. Don't be too hard on yourself. You have an illness..that doesn't make you worthless."

There are lots more, though. Pop by, check them out, then add your own.

Tuesday, April 14, 2009

Shrinks "get" fibromyalgia

Fibrohaven includes a review of a Current Psychiatry article about treating fibro patients. It was a good review -- and a lengthy post.

"Sharon B. Stanford, MD is the Assistant Professor of Psychiatry and Family Medicine, Assistant Director, Women’s Health Research Program, University of Cincinnati College of Medicine. The article is partly an examination of the current drugs approved and used in the treatment of Fibromyalgia, and Dr. Stanford discloses that she receives grant/research support from several drug companies, but beyond the drug exploration, Dr. Stanford has written a very accurate and empathetic report on Fibromyalgia. She even touches on a recent conversation we had here on FibroHaven - which came first, the pain or the emotion."

Read more of the review here.

Fewer wrinkles, less what's a little poison??

Yeah, Allergan, the company that owns and distributes Botox, is trying to find new ways to use the drug. One of those possible uses is to reduce fibro pain:

"But Mr. Gal, the analyst, devoted his Christmas vacation to unearthing about 90 patent applications worldwide by Allergan. These included Botox for sinus headache, fibromyalgia pain, ulcers, inner ear disorders and uterine problems as well as appearance treatments like “buttock deformity.”

Botox is a form of botulism, which can lead to muscle paralysis (hence why it works so well on forehead wrinkles) and even death if overused. I don't think I want a nerve poison injected into me for the sake of relieving some pain...let alone to rid myself of the wrinkles I have earned by living life.

Perhaps I should be grateful my fibro pain is controlled enough with lyrica and cymbalta that I can't imagine wanting to poison my nerves to rid myself of the pain.

Read more about other possible applications for Botox here.

What to do when people don't understand

I'm quickly becoming a fan of Adrienne Dellwo on She's the fibromyalgia & CFS guide, and I've enjoyed the last coupleof her posts I've been alerted to.

The most recent has to do with WHAT to do when you run into someone who is insensitive about FMS or CFS, or someone who just plain doesn't believe in it. I have been so fortunate that this has not yet happened to me -- pretty well everyone I have told I have FMS has reacted with either curiosity or sympathy. Her advice makes sense, though:

"These comments can put us in an uncomfortable position, and I've found that it pays to think ahead of time about how I'll respond.

"When it's a non-medical person, we each have to decide for ourselves whether it's better to respond or not. It's normal to get defensive and fight back, but that could lead to an even more stressful confrontation. If you feel like you need to say something, be prepared to put the offender in the hot seat."

Read more of her tips here.

Monday, April 13, 2009

Who should treat us?

I'm fortunate that I have a good relationship with my physician -- he knows me outside of the clinic well enough to know that when I speak to him inside the clinic, I either know what I'm talking about, or, if I don't, I tell him I don't.

I've thusfar only received treatment for fibromyalgia from my primary care physician. This entry in the Rheumatology Journal Club's blog discusses what type of physician should or should not retain "ownership" of FMS treatment.

"The discussion focus around the fact that recent discoveries in the field of fibromyalgia have linked its mechanisms of pain generation to central nervous systems abnormalities. With that in mind, some authors are starting to question why should Rheumatologists retain “ownership” of this condition.

The argument was made to let Primary Care Physicians primarily manage Fibromyalgia. Recently, Internists have became better at making the diagnosis and are certainly more equipped to coordinate the multi-disciplinary approach needed to treat most fibromyalgia patients. In addition, the work up and drugs used for the treatment of this condition are well in the realm of Primary Care Physicians. "

Read more about the debate here.


Adrienne Dellwo has a great blog entry about how to prepare ourselves for stressful situations before hand, because any of us who have fibromyalgia knows that stress is enemy number one a LOT of the time. Her entry takes a semi-comical look at taking the kids to Chuck E. Cheese.

"This time was better, though - I went in prepared. Here's what helps me deal with these kinds of situations:

Something to Focus On: I find I can avoid that panicky feeling if I have something to focus on right in front of me. It can be a book, magazine, hand-held video game, whatever. If you're crafty, something like knitting or cross stitch might be good, too."

Read more of her tips on handling stress here.

Taking to the waves

A Kansas news outlet has a story about a fibro sufferer who uses physical therapy, but especially water exercise, to get the exercise all fibro patients are told is neccessary to help them live a more pain-free life, but is so hard to do because of constant pain.

"A few months ago, fibromyalgia had Lois Area thinking exercise was the last thing she could do. She says the condition tenses her muscles and makes it a lot harder to function.

But Lois dove into rehab, bypassing the gym and heading to the pool.

Kansas Rehab Physical Therapy Assistant Gustavo Ortiz says water gives a person a sense of lightness. He says the deeper the water, the less stress on the joints so there's less stress on the body."

Read more about her exercise regime here.

Friday, April 10, 2009

Get your "Om" on

An article in the Baltimore Sun describes a study using yoga to help reduce stress-related pain perception:

"A small but intriguing study further characterizes the effect of yoga on the stress response. In 2008, researchers at the University of Utah presented preliminary results from a study of varied participants' responses to pain. They note that people who have a poorly regulated response to stress are also more sensitive to pain. Their subjects were 12 experienced yoga practitioners, 14 people with fibromyalgia (a condition many researchers consider a stress-related illness that is characterized by hypersensitivity to pain), and 16 healthy volunteers.

"When the three groups were subjected to more or less painful thumbnail pressure, the participants with fibromyalgia -- as expected -- perceived pain at lower pressure levels compared with the other subjects. Functional MRIs showed they also had the greatest activity in areas of the brain associated with the pain response. In contrast, the yoga practitioners had the highest pain tolerance and lowest pain-related brain activity during the MRI. The study underscores the value of techniques, such as yoga, that can help a person regulate their stress and, therefore, pain responses."

Read the article here.

Pot vs. Pain

Apparently a new referendum passed in Michigan in November allows people to use marijuana for medicinal purposes. The article I read about it quotes a woman who was so affected by fibromyalgia, she now "smokes 3-4 joints a day." The recent news story included this comment:

The Cass, Van Buren and Berrien County health departments' Medical Director Dr. Rick Johansen said a lot of local doctors don’t support the new law.

“I really am worried about the slippery slope,” he said. “Will there be more marijuana use by others because of the start of this?”

I agree. I've personally seen people go from "Oh it's just a joint every now and then" to hardcore drug use, which included theft among other crimes to support the habit.

Not me. I'll choose pain.

See the full article here.