People taking the high-priced fibromyalgia drug Cymbalta (duloxetine) could soon have a less expensive option - the U.S. FDA in December approved a generic version which is expected to cost a lot less once it hits the market.
However, a possible risk has emerged in Australia, where generic duloxetine is already on the market. Doctors there are reporting 21 confirmed cases of serotonin syndrome, which is a potentially deadly condition that doctors often miss.
For more information, see:
- Generic Cymbalta - Is Duloxetine Safe?, by my friend & colleague Marcia Purse, About.com Expert on Bipolar Disorder
- Serotonin Syndrome in Fibromyalgia & Chronic Fatigue Syndrome
Are you looking forward to switching to the generic? Have you had problems with generic drugs after doing fine on the name brand? Leave your comments below!
Photo © Seth Joel/Getty Images
My heart sinks every time I hear about a young person with fibromyalgia or chronic fatigue syndrome. These conditions are devastating at any age, but for people who haven't had a chance to establish their lives, there's an extra layer of tragedy.
I recently read an article focusing on the difficulties of being young and chronically ill, and it's by far the best thing I've ever read on the topic. You can read it here:
- The Extra Burdens Faced by Young People with Chronic Illness, by Toni Berhhard, J.D., Psychology Today.
For more information specifically on these conditions in young people, see:
How old were you when you first became chronically ill? Do you think you faced additional hardship because of your age? Leave your comments below!
Photo © Photodisc/Getty Images
The tough thing about CAM is that we don't have a lot of reliable evidence for what works, which makes it hard to know what may be worth your time and money. Just like everything else, one CAM treatment may be effective for one person and not for another.
CAM treatments can include anything that can be used along side or instead of conventional medicine. I've had a lot of luck with CAM. I've used acupuncture, massage, chiropractic, supplements, dietary changes, yoga and meditation. All of them have helped me substantially. (Some, such as chiropractic, were for some of my other diagnoses and not specifically for fibromyalgia.)
Here are some resources to help you get started with researching CAM treatments for these illnesses:
- Myofascial release
- Bodywork: massage, rolfing, Reiki, etc.
- Finding the Right Manual Therapist
- Mind-Body: Hypnotherapy, Biofeedback, CBT
- 7 Things You Need to Know About Supplements
- Supplements by Symptom
- Your Diet for Managing Symptoms
A lot more are out there - homeopathy, naturopathy, Ayurveda, aromatherpy, reflexology ... the list goes on. To learn more about CAM treatments in general, you can explore the About.com Alternative Medicine site, run by Expert Cathy Wong, ND. All of the articles there are medically reviewed to ensure accuracy, just like they are at all About.com Health sites.
What CAM treatments have you tried? What has worked, and what hasn't? Take the poll, and leave your comments below!
Photo © Mel Yates/Getty Images
EBV is in the herpesvirus family. All herpesviruses stay in your system forever, but generally remain dormant most of the time. When they do become active, specialized cells in the immune system, including B-cells and T-cells, typically don't have a problem knocking them back down again. Most people aren't even aware that this process is going on. That's because B- and T-cells, in a healthy immune system, remember the virus and can rapidly assemble an army of antibodies to keep it in check.
In this study, however, scientists found evidence that the B- and T-cells of many people with ME/CFS were unable to remember EBV, meaning a reactivated virus would be better able to gain a foothold and cause symptoms.
Researchers found this impaired cellular memory in 76% of the 400+ study participants. Along with showing what may cause and sustain some cases of ME/CFS, researchers say this work could lead to a long-sought diagnostic marker.
More About EBV
EBV is a nasty bug. It's best known for causing infectious mononucleosis, called mono or the "kissing disease." Symptoms of mono include:
- Sore throat
- Muscle aches
- Swollen lymph nodes
- Sensitivity to light
- Shortness of breath
Recovery from mono is known to take a long time, and recurrences are marked by extreme fatigue.
Some researchers have long believed it's no coincidence that those are also symptoms of ME/CFS, but since a large portion of the population carries EBV and only a small portion develop ME/CFS, it's been hard to explain (until now) how EBV could contribute to the illness.
Other studies have shown that a significant number of juvenile ME/CFS cases followed mono, and many adolescents whom doctors deem unrecovered from mono fit the ME/CFS diagnostic criteria. It seems that the harder EBV hits, the more likely it is to cause prolonged illness. (Read more about these findings from Cort Johnson at Health Rising.)
In addition to mono, EBV is linked to certain types of cancer, which could explain the higher incidence of cancer-related illness and death some ME/CFS experts have observed. EBV may also play a role in multiple sclerosis. New research also suggests it can mimic acute leukemia.
With this new discovery of impaired cellular memory, we may have filled a significant gap in knowledge about how EBV could be triggering ME/CFS and contributing to on-going symptoms. While more work is needed to verify this study, it could prompt more doctors to prescribe anti-viral medications (such as valacyclovir or valganciclovir) for ME/CFS patients with high EBV titers.
Did your ME/CFS start after mono or a similar sickness? Have you had high EBV titers? Do you think EBV contributes to your illness? Leave your comments below!
Experts on our conditions have come up with certain things we need to be aware of, preparations we need to make, and special things we need to ask for in order to make surgery less of an ordeal. I've compiled the most reliable of them here:
That's a good one to bookmark in case you need it down the road, and let's face it, most of us will at some time.
Have you had surgery since developing fibromyalgia or chronic fatigue syndrome? What was your recovery like? What would you do differently? Leave your comments below!
Photo © Janie Airey/Getty Images
In a population-based study involving more than 4,300 people, 18.5% developed widespread pain between the initial exam and a three-year follow-up. Non-restorative sleep was the most frequent precursor of widespread pain, according to researchers.
Non-Restorative Sleep & Fibromyalgia
This study wasn't specifically on fibromyalgia, but the condition falls under the umbrella term of widespread pain. Also, widespread pain can sensitize the nervous system and contribute to fibromyalgia's development.
We know from prior research that many cases of fibromyalgia involve non-restorative sleep. It's been a matter of some debate whether poor sleep is a symptom or cause of the condition.
This research may strengthen the case for non-restorative sleep as a causal factor. (Fibromyalgia is believed to be caused by multiple factors in combination, and it's unlikely that one particular causal factor is present in all cases.)
I strongly suspect that sleep problems contributed to my fibromyalgia. I've rarely awakened refreshed and didn't even realize I was supposed to until my late teens. Sleep is so crucial that it stands to reason chronically poor sleep would have a detrimental effect on health.
If non-restorative sleep is a potential contributor, treatments that correct the sleep pattern could prevent and possibly also alleviate fibromyalgia, making this an important direction for further research.
Did you have non-restorative sleep before fibromyalgia? Do you believe sleep problems contributed to your illness? Leave your comments below!
Photo © Angelo Cavalli/Getty Images
The Internet is a blessing for many of us with fibromyalgia and chronic fatigue syndrome, but it can also be a curse. We all need to take steps to protect the privacy of our health information while researching and talking about it online.
You may not think you have reason to worry about it right now. However, it pays to keep in mind that health information shared online has come back to hurt a lot of people when it comes to divorce and custody disputes, searching for work, applying for disability, and in all kinds of personal ways.
Here are some key things to remember:
- Anything you say online should be considered permanent and public. Even if it's deleted later, someone may be able to access a cached copy on their browser, or they may have saved a screen capture.
- Blog comments, forum posts, and Facebook comments are accessible by Google and other search engines. Because search engines have a cache of their own, even deleted information may linger in searches for some time.
- It can be hard to get in touch with the people who can delete your comments or your name, and they may not always be willing to do this for you.
I've heard from a lot of people with problems caused by Internet activity.
One woman had an ex-husband who was using forum posts against her in a custody dispute. During the divorce and the massive flare it caused, she'd made a sleep-deprived comment about feeling like she was losing her mind, unable to remember what day it was, and even forgetting to eat. Imagine what that could look like, out of context, to a judge.
I've also heard from someone who Googled herself because a prospective employer informed her that'd he'd be doing that as part of the hiring process. She was really upset when she found blog posts that detailed her illness from a time when she was much sicker. She was worried - and rightly so - that employers would be turned off by that kind of thing. They're not allowed to ask you about health issues, but if you leave the information out there for them to find, they're probably going to consider it.
When someone contacts me and asks to have their posts or their name removed, I always do what I can. However, I don't check my email every day, and like I mentioned, that doesn't mean it will immediately be off the search engine. Depending on re-publication times, it may even take a while to be off of the site.
These aren't the only ways people can see what you're up to online, either. Facebook comments and page "likes" are public unless you adjust your privacy settings. And anyone with access to your computer can find out your search history unless you know how to cover your trail.
What Can You Do?
The first thing I'd suggest is coming up with a user name that you keep to yourself for blogs, forums, chat rooms, message boards, and mailing lists. If no one in your life knows that's you, they can't find what you've posted.
On Facebook, if you've liked illness-related pages, change your privacy settings so that only you can see your likes. It's harder to be private about comments, so you may want to consider a second profile under a different name for that kind of activity. (I know, it's against Facebook's rules, but since they opened themselves up to search engines, I think they owe us this measure of security.) The same goes for Twitter and wherever else you may spend time online.
As for your search history, here's some great information from my colleague Trisha Torrey, About.com Expert on Patient Empowerment: How to Search for Internet Health Information Anonymously.
Also, to protect yourself in general, never share contact information publicly, and that goes for your email address, too. People sometimes want others to contact them via email and put their address in a blog comment. I always delete the ones I see, and it's for your protection! The last thing you need is for some rabid person who doesn't believe in your illness to bombard you with harassing emails. There are people out there like that, trust me, and you don't want to make yourself an easy target for them.
Have you been harmed by health information that you've shared online? What steps do you take to protect yourself? Leave your comments below!
- Finding Support
- Readers Respond: Support Group Experiences
- Can I Get Disability for Fibromyalgia or Chronic Fatigue Syndrome?
Photo © Buccina Studios/Getty Images
Do you have tooth or mouth problems that you think are part of your fibromyalgia or chronic fatigue syndrome? A lot of people wonder about this, gauging from the amount of conversations it spawns online. Sadly, though not surprisingly, we have very little research on most of these issues.
TMJ & Bruxism
The ones we know most about are TMJ (temporomandibular disorder) and bruxism (teeth grinding.) We know those are both more common in us than in the general population, and they both can have far-reaching consequences on oral health.
Bruxism is believed to be tied to chronic activation of the fear/anxiety response, which also is involved in our conditions. It makes you clench and grind your teeth while you're asleep, which can disrupt sleep, cause excessive wear or even breakage of your teeth, and lead to TMJ, which is a potentially serious condition of the jaw.
TMJ can cause pain, ranging from mild to severe, as well as clicking and popping in your jaw, and in severe cases, a locking jaw. Because of all the muscles involved, TMJ pain can radiate around your face and down your neck, and it can also cause headaches.
- TMJ in Fibromyalgia & Chronic Fatigue Syndrome
- Bruxism, from About.com Dentistry Expert Tammy Davenport
Gum Pain & Inflammation
So far, we really don't have research on pain and inflammation in the gums and other oral tissues, but you can find people talking about this online, and some dental-health workers recognize it as a problem in us.
We have solid evidence of inflammation in chronic fatigue syndrome, and recent research on connective-tissue inflammation in fibromyalgia is pretty compelling. If we have widespread inflammation, it stands to reason we'd have it in the mouth. Fibromyalgia and chronic fatigue syndrome both involve hyperalgesia (amplified pain,) so any gum pain caused by inflammation can be extra painful. (That goes for other sources of mouth pain, as well.)
The last dental hygienist I saw was startlingly well educated on these matters. She talked to me about how that connective-tissue inflammation could cause redness and sensitivity in us as well as a likelihood of bleeding when we brush and floss.
A visit to the dentist can be especially painful for us. Good communication with your dentist and dental staff can help you identify problems and possible solutions. For help, see:
Mouth sores - like cankers and cold sores - are another thing you can find a lot of chatter about. I did find one study comparing fibromyalgia and lupus that said we had fewer mouth sores than people with lupus, but it didn't say how we compared to the control group.
However, that raises a good point - mouth sores are common in a lot of autoimmune diseases. We know fibromyalgia and chronic fatigue syndrome both involve immune dysfunction, and some evidence suggests autoimmunity. Either way, a malfunctioning immune system can allow for the proliferation of viruses that cause mouth sores, such as herpesviruses (which have been linked to chronic fatigue syndrome.)
We're also likely to have allergies and sensitivities to foods, and some of those can cause cankers and mouth pain. I get cankers from pineapple, tomatoes and walnuts, and gluten burns my gums and tongue.
- Cold Sores/Fever Blisters, from About.com Health's Heather Brannon, MD
- Canker Sore Remedies, from About.com Dentistry Expert Shawn Watson
Which of these problems do you have? Did they develop after your fibromyalgia or chronic fatigue syndrome? Take the poll, and leave your comments below!
Photo © Colin Anderson/Getty Images
A recent review focuses on of evidence on central sensitization in fibromyalgia and related structural changes in the brain. The review largely validates the work that has been done and the conclusions that have been reached as a result.
What is Central Sensitization?
More and more, central sensitization is being considered a primary factor of fibromyalgia, as well as a host of related conditions. The theory holds that the central nervous system (the brain and nerves of the spinal cord) becomes hyper sensitive to pain and other noxious (unpleasant) stimuli, and this results in the myriad symptoms we experience - including bright lights, loud noises, and chemical smells.
The review looked at the structural abnormalities in the brain that research has suggested may be linked to central sensitization. Out of 61 articles that they found, they determined that 22 were of high enough quality to include.
The reviewer concluded:
- Moderate evidence supports the theory of reduced gray-matter volume in specific brain regions, especially the anterior cingulate cortex and prefontal cortex, without a change in total gray-matter volume;
- Evidence of a higher activation of the brain's pain matrix, but with a similar pattern to that of healthy people;
- Evidence of decreased functional connectivity in what's called the "descending pain-modulating system," which involves the message the brain sends down to the pain-signalling structures in the spinal cord;
- Moderate evidence for a significant connectivity imbalance in the pain network when the brain is at rest.
The reviewers say more work is needed on which of these issues are causes of the condition and which are effects of it.
This review provides validation of physiological changes in the brain, showing that fibromyalgia is a a physiological illness. It also helps clarify new directions of study that could help identify better treatments, underlying mechanisms, and causes.
- Central Sensitivity Syndromes
- What the Difference Between a Disease and a Syndrome?
- Neurotransmitter Dysregulation in Fibromyalgia
Photo © Oliver Cleve/Getty Images
New research demonstrates the negative pain-related impact of exercise on some people with chronic fatigue syndrome (ME/CFS) and comorbid fibromyalgia (FMS) and suggests that drug treatments may help lessen the effects in some cases.
Please note: this study looked at the pain response to exercise, not the full breadth of exercise-induced symptoms that are common in ME/CFS. Myriad studies have examined post-exertional malaise, which is the symptom flare following activity, and have demonstrated multiple abnormal physiological reactions to exercise. The intent of this study was to compare two chronic pain populations to see how they differ.
Researchers had a group of women with ME/CFS/FMS, a group of women with rheumatoid arthritis (RA,) and a group of healthy women exercise on a bicycle and looked at several measures of pain before and after the sessions. Half of them received a placebo while the others were given the pain drug paracetamol.
Exertion levels were below maximums and exercise sessions were a full week apart.
Their analysis showed:
- The RA group had reductions in pain after exercise, both with the drug and with the placebo;
- In the ME/CFS/FMS placebo group, some measures showed worsening pain while other measures were in conclusive but seemed to indicate worsening;
- In the ME/CFS/FMS paracetamol group, some people had a decrease in pain measurements, but the decrease was not significant.
By comparing two chronic pain populations, researchers are able to show that the different response between the ME/CFS/FMS group and healthy controls are not merely due to the presence of chronic pain.
This was a fairly small study, but it and any further research it spawns could add to our understanding of this hallmark symptom of ME/CFS. (My assumption is that they included people who also had FMS because not all cases of ME/CFS involve significant pain.)
Also, it shows that medication may be able to help alleviate exercise-induced pain, at least in some. (However, paracetamol results in this study were not terribly impressive.)
What does exercise do to your pain levels? Do you have ME/CFS alone or with FMS? Does anything help your post-exertion pain? Leave your comments below!