Response to AP Article on ‘Murky’ Disease

Well, I knew it might happen: I stopped writing for a bit. Winter hits and I hit the couch.

While I am going to work to get back to writing here frequently, right now I need to share news with you all.

Last week, the Associated Press ran an article about Fibromyalgia suggesting that it was possible not really a disease and just pushed by drug companies to make money As someone with a journalism degree, I was appalled that the AP would let something like this get out — the tone is that Fibromyalgia isn’t real and that drug companies are faking it. To try and “balance” the piece, the author quotes a drug manufactuer VP to say FM is real. Why he didn’t call one of the thousands of doctors who treats Fibro patients or the College of Rheumatology, I just don’t know.

As a Fibromyalgia patient, I’m hurt. The article is setting us back. With this story running in newspapers across the U.S. it’s hard to take back the false information.

The National Fibromyalgia Association is trying though. Read their reaction, as well as other FM community members, here.

Testing Neurontin Relative for Restless Legs Syndrome

Neurontin making a comeback? Kind of. GlaxoSmithKline is on the cusp of beginning a Phase III clinical trial of a “novel prodrug of gabapentin” (brand name: Neurontin) for the treatment of Restless Legs Syndrome and related sleep disturbances. While not every Fibromyalgia sufferer experiences RLS, it’s a common component of the syndrome.

Neurontin was highly prescribed seven to 10 years ago, off label. Then it came out the company marketing it had been lying to doctors about the drug’s off label uses. However, some doctors still prescribe the medicine for FM. In 2007, Pfizer released Lyrica, which is structurally related to Neurontin and is FDA-approved for the treatment of Fibromyalgia.

Identifying Fibromyalgia Subgroups

While Fibromyalgia patients all have at least 11 trigger points of centralized pain, body aches and stiffness, we all experience symptoms to varying degrees. Some can be predisposed to anxiety, IBS or migraines. (The latter used to be a significant challenge for me, but I learned to keep it at bay via Biofeedback.) So, it’s not too surprising to hear that researchers are looking to define the subgroups within Fibromyalgia.

To begin to determine classification criteria, researchers are using the Fibromyalgia Impact Questionnaire. The short quiz asks about daily tasks inhibited by FM and levels of pain, fatigue and stiffness.

Thus far, two groups have been identified:

Type I: Lowest levels of depression, anxiety and morning tiredness
Type II: Elevated levels of pain, fatigue, morning tiredness, stiffness, anxiety and depression

Though, I wonder about the overall effectiveness of the questionnaire. I have really progressed in coping with my FM in the 10 years I’ve had the condition; yet, according to the test I’m well into the “severe” section. That said, in the last few months I have definitely been a part of the Type II subgroup – especially the pain levels and stiffness.

Has anyone else tried this questionnaire? How accurate did you think your results were?

It should be noted, others have been attempting to identify Fibro subgroups for a few years now by testing pressure-pain thresholds and genetics.

FDA Considering Another Drug for Fibromyalgia Treatment

Is Cypress just grabbing at this tree?

Looks like we may have a third option for “official” Fibromyalgia drugs. A San Diego-based biotech company, Cypress Bioscience, and its lab partner Forest Laboratories put milnacipran up for FDA approval, and expect to get a green light by the end of the month.

Milnacipran has been used outside the United States to treat depression. That lineage comes as no surprise, especially as the second drug approved for Fibro treatment was Lilly’s depression medication Cymbalta.

Cypress says its drug works by blocking serotonin and norepinephrine, both pain- and mood-related chemicals in the brain. However, the numbers from its clinical trial on the drug cause some doubt. In the study, 25 percent of respondents said they felt their pain level had “much” or “very much” improved, compared to 13 percent on the placebo.

Perhaps the FDA will ask Cypress to do more extensive studies. I like the fact that more companies are looking into the causes of our condition and ways to alleviate symptoms, but I feel like this company is just trying to grasp at the money tree from a group of desperate people.

Poem Reminds Fibro Sufferers We’re Not Alone

When you wake with stiffness in the morning and Fibro fog clouds your mind, it can be easy to forget you’re not alone. I read a poem posted over at Gather.com, and this writer’s simple words may reflect some of your daily struggle.

Here’s the first few lines:

I wake up to feel the pain,

It’s presence numbs my brain.

For this pain seething and pure,

The experts have no cure.

I hope to see more poems, stories and writing online from real Fibro sufferers like Christine K., who wrote the aforementioned piece. If you have poems you would like to share with others, e-mail me at fibrospot@gmail.com, and I will post them on FibroSpot.

Vitamin D With Fish Oil, Magnesium May Bring Fibromyalgia Relief

Supplements, anyone?

I have continued to experience improvement of my Fibromyalgia symptoms from increasing my Vitamin D levels. I’ve heard of a few others who have gone the same route and experienced relief. However, I came across this item today suggesting that taking a combination of Vitamin D, fish oil and magnesium works well.

Has anyone tried this?

Considering the noticeable difference from just the Vitamin D, I wouldn’t be surprised if modifying levels of other vitamins and proteins helped as well. Personally, I’m going to hold off on trying this one until I talk it over with my doctor.

(I purposely didn’t include the dosage amounts here, because I have no idea if it’s legit. The original item includes this, but I recommend talking it over with your doctor.)

Commercials Promote Fibromyalgia as Real Disease

The Lyrica commercials help promote Fibromyalgia awareness. But the second spot is the only one featuring someone who doesn't look like my grandma.

When commercials for the Fibromyalgia drug Lyrica started airing on network television, my friends and coworkers started saying, “Hey, I saw a thing about that condition you have.” At first that doesn’t sound like much, but when people can’t see your illness and dismiss it as hypochondria, simple things like this help.

There are even some doctors who don’t “believe in” Fibromyalgia. (I still don’t understand this.) The press that has come as a result of the Lyrica launch and marketing has really helped the FM community. I was pleased to read last week that Pfizer, the manufacturer of Lyrica, is going to devote marketing dollars to promoting Fibromyalgia’s legitimacy. The more people who have heard of our condition, the easier it is for us to be open about our issues and needs.

Video: Massage Techniques for Fibromyalgia Relief

There are times where getting a massage makes an immense difference in my Fibro pain, other times it just makes it worse. I discovered this video showing massage techniques that help people with Fibromyalgia. I suggest getting a loved one to watch it, and then convincing them to employ a technique or two when trigger points are acting up.

Still Encountering People Who Don’t ‘Believe In’ Fibromyalgia

I came across an item about Pfizer’s commercials for the Fibromyalgia drug Lyrica on the Schwitzer Health News Blog, written by Gary Schwitzer of the University of Minnesota School of Journalism & Mass Communication. He was commenting on how the women in the commericals appear to have a very mild case of Fibromyalgia. I was enjoying his critique (you know my thoughts on the commercials) until I reached the end where there is an insinuation that Fibromyalgia is not a “real” medical condition. The blog links to and excerpts from a New York Times article about the launch of Lyrica, which asks if Fibromyalgia is real.

It’s disheartening to see that so many years after the discovery of Fibromyalgia Syndrome, we still encounter disbelief with such prevalence.

Tips for Disclosing a Chronic Illness to Employers

Before getting into this post, let me apologize for the break in items. I had a significant Fibro flare-up, and started a new job. Let’s just say my body has been overwhelmed. However, all of this had me thinking about how much to share with my employer about my Fibromyalgia.

Once I was offered the job, I asked about flexible hours. I told my employer that I have a chronic condition that flares up from time to time and mornings can be particularly hard. I lucked out that my new employer understands.

Figuring out what to tell bosses about chronic illnesses and when to do so is always a tough decision. While employers shouldn’t fire you because of an illness, that doesn’t mean they can’t find a way to do so.

Before making the decision to disclose your Fibromyalgia to an employer think about where your condition is at currently and what, if any limitations it causes. If it may inhibit essential job functions, wait until absolutely necessary to confide. Otherwise, it depends on your comfort level and the climate of your company. It can be helpful to ask around to see if coworkers have been in similar situations. Of course, this will have to be done delicately.

Here are a few tips for having the Fibromyalgia talk with your boss:

• Be positive. Talk more about your skills, qualifications and your ability to do your job. Reassuring your employer that your FM doesn’t affect your performance.
• Do not present your Fibro as a weakness
• Think about concerns he or she may have, and be prepared to provide information, strategies or solutions to each of those potential issues.
• Know what workplace accommodations you may need. It may help to look into the availability and funding programs that your employer can access to make these accommodations.

The University of Delaware offers a list of ideal times to disclose disabilities (or in our cases chronic illnesses) and guidelines on how to do so if electing to tell a potential employer on its Career Services center’s site.

Whatever you decide to do, know that you aren’t required to tell your employer about your Fibromyalgia. In my experience, doing so alleviates job stress and makes work life more comfortable.