Wednesday April 16, 2014
Many fibromyalgia experts have long believed the condition is associated with an abnormal metabolism, which can lead to weight problems and difficulty losing weight. A new study gives us an idea what may be going on.
Researchers looked at indicators of what's called "adiposity," which is the clinical term for being overweight or obese. These include:
- Leptin: a protein produced by fat in the body and believed to regulate fat storage, and
- Acylated ghrelin: an enzyme that stimulates your appetite.
Researchers examined leptin and acylated ghrelin levels in a small group of women with fibromyalgia as well as a control group, and compared the results to the women's pain intensity and physical activity levels.
They say the fibromyalgia group had higher leptin and lower acylated ghrelin levels than controls. The leptin levels were not linked to the weight of the fibromyalgia women, which is unusual and leads researchers to conclude that it's somehow linked to symptoms.
Fibromyalgia & Metabolism
For years, we've had a group of fibromyalgia experts who've said we had metabolic problems that contributed to weight gain and made it especially hard for us to lose weight. Meanwhile, the rest of the medical community has told us that we'll feel better if we lose weight. However, the researchers who churn out studies showing increased weight leads to increased pain and disability don't ever seem to offer solutions - or even ask why we're overweight to start with.
Why would we be overweight? So many reasons!
First, in the U.S., a whole lot of people - including those without health problems - are heavier than the medical community says they should be. On top of that, you'd expect a group of people with chronic pain to be on the heavy side: pain limits function and leads to being more sedentary. Then, consider that a large portion of us are women in child-bearing or post-menopausal years. If you've just had children, you're more likely to be heavy than before having kids. And if you're post-menopausal, it's natural to put on a few pounds.
Fibromyalgia is also associated with thyroid disease and, to a lesser degree, problems with blood-sugar regulation. Those both cause weight gain. So do some of the drugs we're prescribed.
Now, add to that evidence that we have high levels of a protein responsible for fat storage. What does that mean, exactly?
Picture a waterfall. Say ten people go out to catch water in buckets and dump that water into a pool. That's a healthy person. Now imagine that ten more people join them. The pool fills up twice as fast even though the waterfall hasn't changed, right? That's us.
So yes, as a group, it's probably true that we're heavier than our healthy counterparts, and possibly even heavier than similar disease groups (i.e., people with lupus or rheumatoid arthritis.) I'd imagine it's true that extra weight leads to even more pain, as our muscles and connective tissues work harder to perform basic functions.
My hope is that this kind of research will continue and eventually lead not only to answers, but to treatments that regulate our metabolisms.
My Weight Issues
This is a problem I'm all too familiar with. On my 29th birthday, I weighed 125 pounds (I'm only 5'2, so no, I wasn't emaciated!) I looked and felt great. A year later, I developed a thyroid condition and suddenly gained 25 pounds in a month - without changing anything about my life. That was scary.
I got treatment, upped my exercise and cracked down on my diet. What happened, weight wise? Nothing. Then I had two babies and kept about ten pounds from each pregnancy. Then fibromyalgia hit and took my activity levels down to almost nothing, and I gained more.
Since then, I've wrestled my fibromyalgia into remission and increased my activity levels. I've gone on an incredibly restrictive diet with no gluten, no sugar, and no red meat. I eat mainly whole grains, fruits, and vegetables. How does my weight compare to when I was in agony, spending most of my time on the couch comforting myself with sugar binges? It's exactly the same. All those changes for the better, and I haven't lost a pound.
No one can convince me that is normal. It just isn't.
This research really resonates with me. We need these researchers to keep pushing forward on this issue, and maybe someday we'll be able to lose weight like our doctors (and other critics) want us to!
Do you believe you have metabolic dysregulation? Have you made positive changes but been unable to lose weight? If you have lost weight with fibromyalgia, how did you do it? Leave your comments below!
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Monday April 14, 2014
The drug agomelatine improves the perception of fatigue in people with chronic fatigue syndrome (ME/CFS,) according to a recent study out of Italy.
Agomelatine is a melatonin agonist, meaning that it's similar enough to the neurotransmitter melotonin - which is involved in sleep - that your brain reacts to it the same way. It also blocks the neurotransmitter serotonin, which is involved in wakefulness and alertness.
For the first twelve weeks of the study, one group of participants with ME/CFS took agomelatine while another group took melatonin supplements. Researchers say the agomelatine group had a significant reduction in perceived fatigue and an increase in quality of life while the melatonin group did not.
For the second twelve weeks, all participants took agomelatine, and researchers say the former melatonin group then experienced reduced fatigue as well. They say the drug was tolerated well by all subjects.
Researchers conclude that agomelatine could be a useful treatment for ME/CFS. This is a preliminary study, meaning more work must be done.
If you're in the U.S. and wondering why you've never heard of this drug before, it's because agomelatine isn't approved here. It's been used for years in Europe and Australia, where it's classified as an antidepressant.
Several years ago, the patent holder sold the U.S. production rights to an American company that started working toward a possible New Drug Application to the FDA. However, when initial trials didn't satisfy the company, it stopped pursuing the drug.
That was as a treatment for depression, which is a crowded marketplace, so it stands to reason that mediocre results against established antidepressants made the company lose interest.
However, the good news is that, if studies continue to show this drug could be effective against ME/CFS, that company could well be eager to get the first ME/CFS drug to market in this country.
Because agomelatine targets a universally recognized ME/CFS symptom - unrefreshing sleep - it may face less political opposition than the anti-viral Ampligen, which has so far failed to gain FDA approval for this condition. Even in the best-case scenario, though, it'd be years before this drug could be available in the U.S.
Agomelatine appears to have a lower risk of side effects than many other antidepressants. A major plus is that it doesn't have any discontinuation symptoms, meaning you don't have to taper off of it or risk adverse effects. If you don't want to take it any more, you can just stop. It also has no risk of abuse.
It's discouraging that people here don't have off-label access to this drug. Let's hope our European researchers keep their eyes on this one so that the U.S. company will have a reason to get it back into trials.
Have you taken agomelatine? Did it help with your fatigue? Leave your comments below!
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Friday April 11, 2014
I once had a neurologist tell me that he and his colleagues see all kinds of nerve-related weirdness from those of us with fibromyalgia. He indicated that nothing really surprises him anymore.
I wish I could call him up whenever something weird happened to me, because now and then something can still surprise (and scare the heck out of) me.
Last week, I was yawning and stretching with my arms above my head when suddenly my right arm collapsed to my side and started twitching like crazy. Then it went numb and I couldn't move it for a minute. When I could move it again, it was weak and shaky. Then I got dizzy and the whole right side of my abdomen got tingly.
At first, I thought I was having a stroke - and so did the paramedics! Turns out, it's nerve compression. In fact, there's a spot I can press right where my shoulder meets my chest that makes my arm dance like crazy for a few seconds. The other night, every now and then my arm would flail around and wake me up. Fun!
For now, I'm resting it, gently stretching it, using heat (irritated nerves really don't like ice,) and stepping up the pain meds. I'm using topical creams and patches, NSAIDs, Flexeril (cyclobenzaprine, a muscle relaxer) and a bit more Vicodin than usual. It seems to be getting better. If it doesn't go away soon, I'll be looking at other alternatives such as massage, physical therapy, and acupuncture.
This is the most painful nerve issue I've had since developing fibromyalgia, but it's certainly not the first. When something brushes the back of my left calf, I feel the sensation around the side, going in the opposite direction. (Even the neurologist said that one was bizarre.) I've had nerves shoot pain down my legs, or give me a shivery sensation up and down my lower body in waves. I get odd "jumps" in my abdominal muscles when nerves misfire. I also get a tremor in my thumbs, and sometimes my entire left hand. Massaging the arch on my left foot gives me a profound itch in my big toe.
That's the thing with fibromyalgia - our wiring is all messed up. Research has long pointed to dysfunction in our central nervous systems, and more recently in our peripheral nervous systems. (BTW, for those keeping track at home, that means our entire nervous system is messed up!) Some nerves send pain signals in triplicate, some nerves interpret moderate temperature as painful, and some nerves are extremely touchy.
Add to that the possibility of inflammation in the fascia - a thin layer of connective tissue that surrounds pretty much everything in the body - and you have a pretty good recipe for nerve impingement, especially in the narrower passages.
I do have to make this point - if you start having severe pain, tingling, or numbness, especially on one side, please, please, please get it checked out right away. Just because something could be a fibromyalgia symptom doesn't mean it is. When I was having possible stroke symptoms, I called 9-1-1. I have enough issues without permanent brain damage or paralysis, and I know you do, too. (Learn more about stroke symptoms here.)
What weird nerve issues have you had? What treatments have helped? Have you ignored symptoms only to have them be something new and serious? Leave your comments below!
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Wednesday April 9, 2014
A new review of nearly 200 studies advances the theory of sympathetic nervous-system dysfunction in four common overlapping conditions:
- Fibromyalgia (FMS),
- Chronic fatigue syndrome (ME/CFS)
- Irritable bowel syndrome (IBS), and
- Interstitial cystitis (IC, bladder pain).
Researchers day that the body of literature demonstrates sympathetic dysfunction in all of these conditions, suggesting that something called "dysautonomia" could be the triggering factor for them.
What is Dysautonomia?
To understand dysautonomia, we have to look first at the autonomic nervous system (ANS).
The ANS regulates all of the automatic systems in your body - breathing, heart rate, digestion, hormone production and excretion, etc. It's divided into two parts with opposite jobs.
- The Sympathetic Nervous System: Takes over in times of stress, speeds up your heart, dumps adrenaline into your blood, raises your blood pressure. These are all things designed to help you deal with or get away from danger (your "fight-or-flight" response.)
- The Parasympathetic Nervous System: Dominant at times of calm, slows the heart rate and lowers the blood pressure after fight-or-flight response, takes care of digestion. Often called "rest and digest."
Substantial research on these four conditions shows that our bodies are stuck in the sympathetic mode - fight or flight. That explains why we're anxious, jumpy, and unable to sleep.
One term for this is "hypervigilant," which means always looking out for a threat. It's typically associated with war-zone soldiers or big-city police officers, who truly are facing danger at every turn. It also explains why new parents wake up at the slightest sound from a sleeping baby. However, these are learned responses to a situation and generally diminish when the situation ends.
When it's a medical state that's not warranted by the situation we're in, the term is dysautonomia, or dysfunction of the ANS. Symptoms of dysautonomia are generally familiar to people with FMS, ME/CFS, IBS or IC:
- Aches and pains,
- Anxiety attacks,
- Digestive problems,
- Dizziness and fainting,
- Numbness or tingling,
- Impaired exercise tolerance,
I asked about these and other dysautonomia symptoms in a poll a few years ago and got a staggering 36,000+ responses, which tells me this is a topic people with these conditions related to. You can see the responses here: Dysautonomia Poll.
This new review could help the medical community recognize that these "unexplained" syndromes do have a physiological basis and that they're related to each other. That could help some doctors identify treatments and new research targets, as well.
Dr. Rich Fogoros, About.com Expert on Heart Disease, has some great articles on dysautonomia:
Do you believe you have dysautonomia? Which of the four conditions (FMS, ME/CFS, IBS, IC) do you have? Has a doctor ever mentioned dysautonomia to you? Leave your comments below!
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