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Adrienne Dellwo

Fibromyalgia & CFS

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Some Fibromyalgia Cases May be Autoimmune, Demyelinating

Wednesday April 23, 2014

Is fibromyalgia more like multiple sclerosis (MS) than we thought? A unique line of research is making it look that way.

First, a few things about MS. It's believed to be an autoimmune disease. Symptoms are caused by something called demyelination, which means destruction of myelin.

Myelin is a specialized cell that covers some nerves and is necessary for them to function properly. It's similar to insulation on electrical wires. A predominant theory is that, in MS, the immune system malfunctions and destroys the myelin sheath. Areas where the myelin is destroyed are called lesions.

Fibromyalgia & Demyelination

The first study of fibromyalgia and demyelination came out in 2008, and the follow-up was just published this month.

The 2008 research suggested that a subset of fibromyalgia involved autoimmune deymyelination and polyneuropathy (pain from damaged nerves.) It compared fibromyalgia to a neurological illness called chronic inflammatory demyelinating polyneuropathy, which is often treated with intravenous immunoglobulin (IVIg.)

In fact, in that study, they used IVIg to treat people from this fibromyalgia subgroup. Granted, it was a small study and that was only 15 people, but researchers say those people had significantly less pain and tenderness plus improved strength, along with smaller improvements in fatigue and stiffness.

This is a good example of how a preliminary study can have seemingly huge implications and yet have little or no impact. Yes, some doctors have used IVIg on patients, but it's far from a widespread treatment and demyelination in fibromyalgia is almost never discussed.

Fast forward six years, and at last we have a follow-up study that appears to confirm the earlier findings as well as advancing them. It's also supported by other work that's been done in the past few years.

Newer Findings

First, the researchers wanted to explore whether the demyelination of large fibers (bigger nerves,) found in the earlier study, is caused by autoimmunity. Then, they also wanted to explore small fiber neuropathy, which has been suggested by other studies to be a part of fibromyalgia.

Small fiber neuropathy is painful damage to structures in the of the skin, organs, and peripheral nerves that provide sensation and help regulate automatic functions like heart rate and body temperature. Researchers were interested in it because it's known that small fiber neuropathy is sometimes associated with demyelination lesions on large fibers.

They found indicators of small fiber neuropathy, including diminished feeling in the lower legs. Also tested were multiple markers of immune activation and autoimmune activity.

Researchers discovered high indicators of small fiber neuropathy and therefore large fiber lesions, in the legs of people with fibromyalgia. They also found that these indicators, especially in the calf, appear to be linked to a marker of immune activation (interleukine-2R.)

They concluded that small fiber neuropathy likely contributes to our pain, and that some of our pain comes from immune-system activity, such as autoimmunity.

In Context

This follow-up study comes at a time when the interest of the fibromyalgia research community appears to be shifting toward small fiber neuropathy, inflammation, and possible autoimmunity. Taken in context, this work adds to the emerging picture that we do have damaged nerves after all, that our peripheral nervous systems are definitely involved, and that autoimmunity or another aspect of immunity is at work.

This was still a fairly small study, but the fact that it furthered earlier work and appears to gel with other recent research could mean that it'll have a bigger impact than its predecessor. At the very least, it seems that this is a worthy line of study that should continue.

Going back to the similarities with MS, I have a couple of thoughts: 1-If fibromyalgia is a close cousin to MS, it could really up the credibility. People know what MS is and they respect it. 2-Would MS treatments work for us? It would be great to see some of these established medications investigated for fibromyalgia. 3-The similarity makes sense, since we both can have flares and remissions and our symptoms are extremely similar.

Do you have or suspect neuropathy in your legs? Have you been treated for it? Has a doctor ever suggested IVIg as a treatment? Leave your comments below!

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New Info: Juvenile Fibromyalgia & Chronic Fatigue Syndrome

Tuesday April 22, 2014

Research Briefs

Three recent studies enhance our understanding of juvenile fibromyalgia (JFMS) and chronic fatigue syndrome (JCFS).

#1: Gender Differences in JFMS

Researchers looked at 172 cases of JFMS at their initial appointment with a rheumatologist and identified several differences between male and female patients:

  • Girls had more numbness and tingling (paresthesia);
  • Boys were more likely to have taken the drug gabapentin;
  • Girls were more likely to have used massage and yoga;
  • Boys were more disabled based on subjective reporting, but doctors' measurements of disability were the same for both genders.

Researchers said that, overall, JFMS wasn't significantly different in the different genders. However, they point out that doctors may perceive complaints from boys and girls differently, possibly resulting in an under reporting of how disabled the boys actually were. It may also account for differences in treatment approaches, and the researchers urge more study in this area.

#2: Predictors of JCFS

Looking at 300 teenagers recovering from infectious mononucleosis (mono,) researchers sought the elements that were most likely to result in post-infectious JCFS at six months after the original illness.

They looked at autonomic symptoms, days in bed since the original illness, stress levels, difficulty functioning and attending school, and psychiatric disorders.

Researchers found that early autonomic symptoms and days spent in bed since the illness - both of which speak to the severity of the mono infection - were the only significant predictors of who met the criteria for JCFS at six months.

#3: High Cortisol in JCFS

Researchers wanted to learn more about the role of the stress hormone cortisol in JCFS since all previous research has been done on adults.

They measured morning salivary cortisol levels in 108 participants with JCFS along with healthy controls and found the JCFS levels were significantly lower in JCFS. They then began treatment with cortisol replacement and re-checked participants' levels after six months of treatment.

At six months, researchers say salivary cortisol was normal in many participants and resulted in recovery for them. Others improved a little, but not significantly. Pre-treatment levels didn't appear to predict recovery.

Learn more:

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"Crisis Mode" With Fibromyalgia & Chronic Fatigue Syndrome

Friday April 18, 2014

Blog Classic: April 5, 2012

At the doctor's office the other day, I noticed a poster about caregiver stress that listed warning signs of being "in trouble." One of them was: Feeling that you're in crisis mode.

That really caught my attention, because my husband and I have frequently used the term crisis mode to describe how we function when I'm not doing well. At times, it's lasted for months. Of course, it's horrible for those of us who actually have fibromyalgia and chronic fatigue syndrome, but it's also grueling for the people who have to do more while we do less.

What is Crisis Mode?

When we're in crisis mode, everything has to be simplified. My husband cuts back on overtime if he can. Dinners are usually from the microwave. Only the laundry that absolutely must be done gets done. Socializing? Forget it. Non-essential appointments are canceled.

I know my husband has been exhausted and frazzled at times, working full time only to come home and do laundry, cook, clean, shop and take care of both me and the kids. He's sometimes felt like a single parent.

It's hard on the kids, too. We've gone through times where I didn't have much to give them. It hurt to hug them, I couldn't handle their volume or rambunctiousness, and they've had to learn to do a lot for themselves at a young age.

We've called in help from friends and family when we could, but there's not always a lot they can offer. Everyone works and has other commitments, and a few have health problems - and limitations - of their own to deal with. And, quite honestly, sometimes they just don't want to do things for us.

It's one thing when we're in crisis mode for a few days, but if it stretches into weeks or months, it becomes difficult to function on any level. Anyone who sees that happening does need to take whatever steps they can to alleviate the strain. Some of my colleagues here at About.com have some great resources for you:

Information to help them understand your illness is here:

You can help take care of your caretakers by understanding that they may need to take time for themselves, and allowing them to be frustrated and even angry about the situation without taking it personally. (That is, as long as they're not directing negative emotions at you, which will only make everything worse!) Mental-health counseling may help as well.

What does crisis mode mean for you? How often do you have to be in crisis mode? What toll has it taken on you and others, and how have you dealt with it? Leave your comments below!

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Metabolic Abnormalities in Fibromyalgia

Wednesday April 16, 2014

Research Brief

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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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!

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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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Transcranial Magnetic Stimulation for Fibromyalgia

Friday April 4, 2014

Research Brief

New research shows that a non-invasive, non-drug procedure called repetitive transcranial magnetic stimulation may improve the quality of life of people with fibromyalgia.

Researchers measured quality of life, both mental and physical, as well as pain, mood and anxiety over 11 weeks of treatment. They also looked at changes in brain metabolism.

They say the quality of life improvement was mainly in emotional and social areas and there was no significant difference in the other symptoms. They also found evidence of increase in the right limbic metabolism.

What is Transcranial Magnetic Stimulation?

Transcranial magnetic stimulation (TMS) involves placing a device against the head - in varying places for different conditions - that transmits magnetic pulses through your brain. Repetitive TMS (rTMS), which was used in this study, just means that you have the treatment multiple times.

The purpose of TMS is to change activity levels in relevant parts of the brain. It's believed to actually restructure some neural pathways.

In fibromyalgia, we know that some areas of the brain are over active. We have abnormal blood-flow patterns and connectivity between certain areas, as well. This could mean multiple areas could be targets of study for TMS as a fibromyalgia treatment.

TMS is an experimental treatment for a range of neurological and psychological illnesses, including:

Research on rTMS is still premature, but it's showing promise in multiple areas.

Learn more about TMS:

Have you ever had TMS? Did it help? Is this a treatment you'd like to try? Leave your comments below!

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Chronic Fatigue Syndrome & Fractures: What's the Connection?

Wednesday April 2, 2014

Research Brief

Can chronic fatigue syndrome (ME/CFS) increase your risk of breaking a bone? If so, it's it perhaps because of - as some researchers have suggested - an increased risk of osteoporosis?

Researchers who set out to answer those questions found a couple of interesting things:

  1. Yes, people with ME/CFS have a higher fracture risk than healthy people;
  2. No, the risk does NOT appear to be linked to osteoporosis.

This was a large study, involving nearly 3,800 people with ME/CFS and about 15,000 people without it, and spanning four years.

Researchers did not offer any suggestions as to why ME/CFS could raise fracture risk independent of osteoporosis but urged further study in this area.

My Perspective

I have to wonder - is this risk higher in ME/CFS because of some physiological abnormality, or because it makes people clumsy?

We have had research showing an elevated risk of falling because of the dizziness common in the condition. Two polls I've taken here (which are, of course, non-scientific) reinforce the fact that we with ME/CFS and fibromyalgia are a clumsy bunch - 95 and 96% percent of responses were either "Yes, I'm really clumsy," or "I'm somewhat clumsy."

Of course, it could always be a combination of things - a deficiency in something that makes your bones more likely to break plus a propensity to fall or stumble into things. It'll be interesting to see where this research leads.

In the meantime, knowing that you have a high risk of fracture because of ME/CFS alone means you might want to be really careful about osteoporosis. There's no need to send your risk through the roof!

For more on that, see:

Have you broken any bones since developing ME/CFS? Was it because of a fall? Leave your comments below!

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