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Fibromyalgia Pain: The 7 Types

Adam Crowley/Getty Images

Understand What You Feel! Our pain isn't just one thing - it's actually several different types, some of which are unique to us. Learn more about your different pain types, what we know about them, and how to manage them.  

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Fibromyalgia & Chronic Fatigue Spotlight10

Drug Improves Fatigue in Chronic Fatigue Syndrome

Monday April 14, 2014

Research Brief

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.

About Agomelatine

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!


Weird Nerve Pains in Fibromyalgia

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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Sympathetic Nervous System Dysfunction in Fibromyalgia, ME/CFS, IBS & IC

Wednesday April 9, 2014

Research Brief

A new review of nearly 200 studies advances the theory of sympathetic nervous-system dysfunction in four common overlapping conditions:

  1. Fibromyalgia (FMS),
  2. Chronic fatigue syndrome (ME/CFS)
  3. Irritable bowel syndrome (IBS), and
  4. 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.

  1. 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.)
  2. 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,
  • Depression,
  • Digestive problems,
  • Dizziness and fainting,
  • Fatigue,
  • Numbness or tingling,
  • Impaired exercise tolerance,
  • Sweating.

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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Neuroinflammation in Chronic Fatigue Syndrome: Direct Evidence at Last

Monday April 7, 2014

Research Brief

New research provides evidence of neuroinflammation in chronic fatigue syndrome (ME/CFS,) thus providing support for the alternative name myalgic encephalomyelitis.

In this small study, PET scans of the brains revealed inflammation in multiple areas of the brain, the:

  • Cingulate cortex,
  • Hippocampus,
  • Amygdala,
  • Thalamus,
  • Midbrain, and
  • Pons

When comparing results to symptoms, researchers found that cognitive impairment was linked to inflammation in the amygdala, thalamus, and midbrain. Pain was linked to cingulate cortex inflammation, and depression to hippocampus inflammation.

Researchers concluded that widespread inflammation of the brain is a feature of ME/CFS and is associated with the severity of certain symptoms. They say this work is essential for understanding the pathology of the condition as well as for developing better diagnostic criteria and treatments.

The Significance

For years, some researchers have hypothesized that neuroinflammation was at work in ME/CFS. In fact, that's where the name myalgic encephalomyelitis (ME) comes from - encephalomyelitis means "inflammation of the brain and spinal cord."

Some countries have adopted ME as the preferred term for this illness. However, much of the U.S. medical community has rejected this name because there was no direct evidence of neuroinflammation.

The implications of this study could be enormous. If further research supports the findings - this was, after all, a small study - it could lead not only to better diagnostics and treatments as the researchers suggest, it would also provide the validation people with ME/CFS have been waiting for.

If the name "chronic fatigue syndrome" could be ditched and replaced with "myalgic encephalomyelitis," it could only make the illness be taken more seriously by the public. No longer would you tell people your diagnosis and have them say, "I get tired, too." (Can you even imagine someone casually saying, "I wonder sometimes if my brain is inflammed"?) Heck, the unwieldiness of the name alone will keep it from being the butt of jokes, never mind that few people will know what those big medical words mean.

More importantly, though, would be a change in the medical community. If researchers can point to an underlying pathology that correlates directly with symptoms, doctors will have to accept that yes, this is a real disease and it warrants attention. Your doctors will take you seriously, more research will be done, and drug manufacturers will have better treatment targets.

Again, this is a small study in an area that needs a lot more investigation before it'll change anything. It is, however, an important step in what could be a really right direction.

What would it mean to you if this research were borne out by future studies? What changes do you think it would lead to? Leave your comments below!


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