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.
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.
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!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © Pasieka/Photodisc/Getty Images
Tuesday April 22, 2014
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.
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
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!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © Christopher Robbins/Getty Images
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!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © Wade/Getty Images