Category Archives: Fibromyalgia

Updating The Tramadol Diaries Resources List

If you haven’t checked out the list of web resources for chronic pain survivors here on The Tramadol Diaries, I’d like to encourage you to do so now. Take a look, and tell me what I’ve left off. I know there are tons of sites out there, but I need your help identifying the best, most reliable, and current blogs and websites that pertain to chronic pain, or to any individual chronic pain condition.

Today, I updated the list with a few medical information sites pertaining to fibromyalgia and ME/CFS. I’m especially interested in hearing from patients of other illnesses who can tell me what sites have helped them in particular.  So, take a look at the resources list, then drop me a line through the contact form on this site and tell me: what did I miss?

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Savella, Third FDA-Approved Fibro Drug, To Be Released Earlier Than Planned

Fibromites will have a third FDA-approved choice next week, earlier than anticipated. Savella(tm), the new drug, is produced and licensed by Forest Laboratories, Inc., and Cypress Bioscience, Inc. Originally scheduled for release in March, following a January 2009 approval decision, the manufacturers went back to the drawing board for what was described as a minor cosmetic change (i.e., they didn’t like the way the pill looked). That change also had to receive FDA approval, and release was anticipated sometime in the middle of the year.

But the approval came more quickly than expected, and shipment of Savella is scheduled to begin this Friday, with availability in pharmacies as early as next Monday, April 28, 2009.

About Savella

Savella is the tradename for milnacipran HCl. It’s classified as a selective serotonin and norepinephrine dual reuptake inhibitor; both neurotransmitters are believed to play some part in the biochemical dance that becomes our fibromyalgia symptoms.

Safety Concerns

As milnacipran is similar to antidepressants and other medications prescribed for psychiatric disorders, there is some concern over an increase in suicidal thoughts, especially in individuals under the age of 24. Contraindications include simultaneous MAOI use (or use within a 14-day period following the last dose of the MAOI) and patients with uncontrolled narrow-angle glaucoma.

Another Times Article?

Is perhaps now a good time for another NY Times article taking back all the crap about this being a “real” disease? How many drugs do you need on the market to establish that this is not some modern-day hysteria (I’m looking at you, Elaine Showalter) or BS need for attention?

Of course, the unbeliever responds: “No number of medications will convince us, because all it means is that there are a lot of you out there deluding yourselves, and the pharmaceutical companies don’t care where their bucks come from.” All right, that’s fair enough, I suppose. But here’s my question: what on earth gives you the right to decide that anyone else’s pain is not “real” in the first place?

Nobody (well, nobody sane) thinks a cancer’s patient isn’t real. Yet, until the X-ray and later the MRI and PET scan technologies were commonplace, no one could “see” the cancerous cause of the pain inside the body — at least, not until the autopsy. And yet, with fibromyalgia and CFS, we have a whole host of otherwise intelligent, educated men and women ready to dismiss the reports of thousands of other intelligent, educated men and women simply because … why, again? You can’t “see” a cause?

You mean you can’t see a cause yet.

And even that’s not the whole truth, for of course there are observable, measurable differences in the fibromyalgia patient’s biochemistry.

But, no. We’re the cranks. We’re the crackpots. We’re the ones who need attention. Frankly, I think it’s quite the other way around. I think the unbelievers are the ones who are a little unbalanced — or at the very least, incapable of rational thought — and greatly in need of some attention. I think that’s why they go against the great majority of doctors and researchers who understand the quite simple truth: that even when we don’t understand a disease’s origins, cause, or mechanisms, the fact of our lack of understanding has nothing to do with whether the disease exists.

In other words: just because you don’t understand fibromyalgia thoroughly, it doesn’t mean fibromyalgia isn’t real.

Other Resources

More information on Savella from the manufacturer

Here’s another article on Suite101 about Savella.

Did a UK Woman Commit Insurance Fraud By Claiming Fibromyalgia?

I have a Google news alert for “fibromyalgia or chronic disease or chronic pain” (and some other search terms related to this blog’s purpose), and that’s the only way I would have ever found the following snippet from a site called No Claim Discount. This seems to be a news site in the UK for the insurance industry.

Joanne Kirk of Preston, is suffering from, what has been deemed as, a landmark judgement against her for insurance fraud. Initially attempting to claim £800,000 in compensation after a rear-end shunt in 2001 the claim was finally settled for £25,000. Of course, such a case will involve a level of investigation and it seems Ms Kirk had no inkling that insurance fraud investigators might be filming her driving, walking and carrying shopping despite her claiming she had developed fibromyalgia, a condition which causes chronic pain in muscles and ligaments. She originally stated she required crutches or a wheelchair to get around and could only walk a few steps without the assistance of another person.

Unlike most insurance fraud convictions which see defendants given no more than a slap on the wrists, Joanne Kirk was fined £2,500 and ordered to play the insurance company’s legal costs. The tables were certainly turned as her legal protection insurance was revoked leaving her with the cost of the entire bill – somewhere in the region of £125,000.

Realizing that:

  • We don’t know the full story from this blurb, much less have any of the details from the trial itself;
  • We don’t have Joanne’s side of the story; and
  • This piece, if not the site as a whole, is obviously biased in favor of the insurance industry (it’s titled in an entertainingly sexist way “Women, Their Handbags, and Faking It For Money”)

… we just don’t get enough information from this piece to draw any kind of conclusions. But I can tell you my first reaction upon reading that Joanne was filmed walking and shopping after claiming fibro: So what?

Is this just a case of not understanding fibromyalgia? That’s certainly a possibility. In my own experience, I frequently have days that are much better than others, in which tasks like shopping and going to the park with my child are an absolute breeze. I also have days in which I can’t get out of bed, and days that fall anywhere in the middle.

Of course, the piece also states that Joanne had told someone involved in the case that she could only get around with the aid of crutches or a wheelchair. Still, I have to wonder if what she actually said was something more along the lines of “when I have a flareup, I need crutches or a wheelchair.”

The truth is that we don’t know — we just don’t have enough information here. The only conclusion I can draw is that whoever wrote this article is a bit sexist, or at least felt comfortable pretending to be for the sake of being entertaining, and that s/he has a lot of disdain for Joanne, if not fibromites as a whole.

I’m also concerned that, even assuming Joanna did commit willful fraud here, this story will just give more ammunition to the unbelievers.

At a minimum, it’s a good object lesson in dealing with legal issues concerning your chronic disease:

  1. Be precise with your language. Don’t make sweeping generalizations. Be exact, and consider thoughtfully how your words might be misconstrued.
  2. Keep a diary of your symptoms. This is probably the best advice any chronic pain patient can take, no matter what the purpose. It helps in so many ways, and I hope to write about that in much more detail later on. But for legal purposes, a diary or log that’s kept contemporaneously with (at the same time as) your symptoms is invaluable evidence.
  3. NEVER EXAGGERATE.  No matter what. Just don’t do it.

To Sleep, Perchance To … Lose Weight? Awesome.

You’ve undoubtedly seen the headlines lately. FMS Global News (a highly recommended news site for fibro patients) shares the skinny in this post (attributed to WebMD):

Lose weight while you sleep. It sounds like something you would hear on a late night infomercial — just around the time you are reaching for that bag of cookies because, well, you cannot sleep.

But as wild as the idea sounds, substantial medical evidence suggests some fascinating links between sleep and weight. Researchers say that how much you sleep and quite possibility the quality of your sleep may silently orchestrate a symphony of hormonal activity tied to your appetite.

“One of the more interesting ideas that has been smoldering and is now gaining momentum is the appreciation of the fact that sleep and sleep disruption do remarkable things to the body — including possibly influencing our weight,” says David Rapoport, MD, associate professor and director of the Sleep Medicine Program at the New York University School of Medicine in New York City.

I highly recommend reading the entire post, because the article covers three different experts’ take on the connection between sleep and weight.

Probably the worst of the symptoms for me, personally — at least in an emotional sense — is the impact fibromyalgia has on sleep. When was the last time I slept through the night without waking up from the pain or at the very least tossing and turning? I don’t honestly remember. My new “normal” is waking up several times at night, sometimes not getting to sleep for four or more hours after I turn in, sometimes getting to sleep quickly enough but then waking up at 3 in the morning and not being able to sleep again until the next night.

The impact on my pain levels from this sleep havoc is bad enough, but emotionally it’s even worse. It just feels rotten, creepy, miserable, scary, and just plain weird to be the only one in the world awake at 3 AM (or so it seems). Well, me and the kids from Paranormal State, I guess, who are busily engaged in their own version of Dead Time.

And is it any wonder that I’ve struggled mightily with my weight the entire time I’ve been dealing with this disease? No. No, it is not.

So what exactly is the connection between sleep and weight? It’s thought to be related to two hormones — leptin and ghrelin.  The first hormone, leptin, increases your feeling of satiety after you eat. Ghrelin, in turn, stimulates the appetite and makes you hungrier. So, when you lose sleep, leptin goes down and ghrelin goes up. Effect?  You get hungrier, but you don’t feel full. Talk about double jeopardy.

There may also be a link between sleep apnea (breathing difficulties during sleep) and being overweight. The article goes into more detail with this potential link, as well as other possible ramifications of the no-sleep cycle that fibro causes.

It’s not just fibro either — any chronic pain condition can be the cause of insomnia.  Although it’s obvious more research needs to be done, it looks like there’s enough information there to make sleep an even bigger priority for us all. Without proper, adequate rest, none of us are going to feel better, and too many of us are struggling with the excess weight which can just exacerbate the pain levels. Sleep loss isn’t some cute punchline to a late-night joke. It’s serious stuff.

How do you deal with insomnia? Personally, I give up early. I’ll lay there for maybe 30 minutes but no more. Then, I get up and get busy on something for at least 30 minutes. Usually I can get back to bed after a few hours. But it’s not enough to keep me out of a sleep deficit, so there are occasional naps each week.

What about you?

Is Fibromyalgia Degenerative Or Not?

When I was first diagnosed with fibromyalgia, my doctor (who, I’ll add, never-not-once implied the pain was all in my head) told me the disease was non-degenerative — meaning that as bad as it might get, it would not get continually worse over time. I clung to this like a drowning rat to a deck chair off the Titanic.

But now, I’m reading some things that suggest maybe the good doctor was misinformed. For instance: Dr. Mark J. Pellegrino. Now, in addition to being named after an awesome and overpriced imported water, Dr. Pellegrino both treats patients with, and suffers from himself, fibromyalgia. He even wrote a pretty helpful book called Fibromyalgia: Up Close and Personal. (Full disclosure: that’s an affiliate link and I’ll get, like, thirteen cents if you buy it from this link. Or something.) The guy knows fibro backwards and forwards, you might say. Dr. P. had this to say recently in an interview with ProHealth.com:

Q: Doctor, in your experience does fibro get worse over time or does it get better as you get older?

Dr. Pellegrino: In my experience from seeing more than 20,000 people with fibromyalgia over the past 20 years, I can say:

• About a third of the people do better over time,

• A third of the people stay the same,

• And a third of the people get worse.

So that means that two-thirds of the people will not get worse which is good.

Those who are diagnosed quickly after developing fibromyalgia symptoms and tried different treatments and find successful treatments are more like to do better over time. As we all get older, we tend to develop other conditions from degenerative factors, wear and tear, injuries, etc. that cause pain and can make fibromyalgia even more painful.

I think the key is not necessarily trying to get better, but trying to have a stable baseline where one’s function is good and a good quality of life is reported.

Now, obviously, this is one doctor’s experience. Granted, it’s extensive experience, but still — anecdotal. However, if a third get worse — even if it were somehow implausibly just his third — well, that’s a horse of a different color, as my father used to say.

This question is important to me personally because I have experienced such a downturn in my health in the last 12 months or so. Most of this downturn I can directly attribute to the other chronic conditions, but I also know fibro pain from my general back pain. I can tell which is which, and what I’m feeling is not just bad back pain. The fibro, when it flares, is definitely getting worse — although I haven’t seen a significant increase in the frequency of flareups, so that’s something, I suppose.

So what I want to know is this: what’s the general consensus? Is there a general consensus? Or is this disease as maddeningly unpredictable universally as it is individually?

Stupid fibro.