Patients, Power, Participation: How Enrolling in Clinical Trials Can Help Ensure That The Future of Pain Medicine is Now

Clinical trials

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials.

“It’s a USB port for your brain, and it’s going to help you manage your fibromyalgia pain.” Imagine your doctor explaining this to you at your next appointment. She hands you the device – it looks like a headband with an electrode in the centre. “When the electrode makes contact with your forehead, it stimulates a nerve that connects directly with parts of the brain which regulate your nervous system. By wearing it twice a day for 20 minutes, your pain will be reduced and your mood will improve.” No drugs. No side effects.

Does this sound like science fiction? Amazingly, it may soon be a reality, thanks to a new clinical trial being conducted at the University of Cincinnati on an external Trigeminal Nerve Stimulation device. Research on these this device has shown positive results already for migraine, depression and PTSD.

Or how about sitting in a chair, drinking a cup of coffee, while a coil placed against the side of your head directs magnetic waves at areas deep inside your brain that are affected by fibromyalgia? This is called transcranial magnetic stimulation, and recent clinical studies have found significant pain reduction in people with fibromyalgia after twenty sessions spread over one month. These are just some of the next generation treatments for chronic pain currently being studied.

Since my diagnosis six years ago, I have tried dozens of treatments, prescribed by multiple specialists, with very limited results. I’m still unable to work full-time because of my chronic pain. The possibility that a new device, strategy or medication could reduce my pain so significantly that I could regain my activity levels seems like a dream just out of reach. I know that I’m not alone in this experience.

Given how critical it is for there to be safe and effective treatments for chronic pain, conducting new research has never been more urgent. I believe it is vitally important that people living with chronic conditions understand the research process and learn how they can advocate and participate in it, so that one day we can realize a world where chronic pain is easily treatable.

Participating in Research Trials: How to Ensure that the Future is Now

Treatment trials are necessary to get the gold stamp of approval for new medical interventions from the US Food and Drug Administration (FDA). Research proves that a new drug or approach is effective and safe. This validation is necessary for doctors to find out about new treatments and for insurance companies to cover the costs.

Ultimately, the only way that new treatments can be developed is if patients join clinical trials. Participating in medical research is the most proactive way patients can contribute to improving how fibromyalgia is understood and treated. Personally, I find the thought of channeling my frustration at the lack of treatment options and taking action by enrolling in a research study exciting and empowering.

Participants in clinical trials have the opportunity to access cutting-edge therapies before they are made widely available, often at leading medical facilities. Experimental treatments can be appealing to individuals who have failed to benefit from conventional treatments. There is no cost to participate in medical research and health insurance is not required. Additionally, some studies compensate individuals who join the clinical trial.

What Safeguards Are in Place to Protect Participants During the Research Process?

Many people are reluctant to consider enrolling in clinical trials because they worry about the safety of being a research “guinea pig”. This is a natural response when confronted with the unknowns of a new treatment. When I did my own research into the safety of clinical trials, I was reassured by the rigorous process that is in place to protect patients. It’s important to be aware that all experimental treatments come with the risk of side effects – and these can range from unpleasant to life-threatening, depending on the nature of the medical intervention being studied. You should discuss any potential treatment trials you are considering enrolling in with your healthcare provider first!

Before a study can be conducted, it has to be assessed by an Institutional Review Board, which is made up of doctors and laypersons. They evaluate the design of the study to ensure that participants have their rights protected and are not exposed to undue risk.

In order to participate in a treatment trial, you must give informed consent. This means you have had the purpose and process of the study explained to you, including any and all potential risks, and that you understand you can leave the study any time.

When you think of clinical trials, you probably think of pharmaceutical drugs. But, did you know that many clinical trials focus on alternative and complementary therapies (like massage or acupuncture), mind/body therapies (like meditation), lifestyle changes (like exercise) and medical devices? Some people may be interested in participating in research studying these non-drug pain management strategies (like these arthritis clinical trials that don’t explore new drugs).

However, research on new pharmaceutical drugs is required to follow a lengthy series of trials and evaluations – actually more so than for any other medical intervention. New medications are only tested in human participants after years of research on tissues from animals and human cells, followed by testing in animal subjects to evaluate safety. The US Food and Drug Administration (FDA) reviews this data before approving human testing of a new pharmaceutical. Clinical trials involving human participants must progress through three phases of testing before the FDA approves a new medication for widespread use. It’s no wonder that it takes years for new treatments to get approved!

Phase 1 – healthy volunteers are administered the medication in order to evaluate the safety of the medication on the liver, kidneys and other organs

Phase 2 – a group of participants who live with the targeted condition are administered the medication in order to assess its efficacy

Phase 3 – large-scale trials are conducted in order to demonstrate that the medication offers statistically significant benefits for the particular disorder, as well as assess its safety profile and adverse side effects

I hope that by having a better understanding of the research process, and the safeguards that are in place to protect participants, people living with poorly understood and undertreated conditions like fibromyalgia will consider joining clinical trials. It’s a very personal decision, and may not be right for everyone. But those who do participate will be helping others by contributing to new insights and better treatments for chronic illnesses. If you are interested in learning more about participating in clinical trials, or looking for research studies recruiting volunteers in your area check out Clara Health, https://www.clinicaltrials.gov/ or http://www.centerwatch.com/.

References

Cort Johnson. (2016). ‘Coils, Lasers and USB Ports to the Brain: the Fibromyalgia Clinical Trials Overview.’ Health Rising. Retrieved June 1 2018 https://www.healthrising.org/blog/2016/12/17/fibromyalgia-clinical-trials-overview-2017/

NFMCPA. (n.d.) What are Clinical Trials and What to Consider about Participating. Retrieved June 1 2018 https://www.fmcpaware.org/what-are-clinical-trials-and-what-to-consider-about-participating

Mindfulness Meditation for Fibromyalgia and Chronic Pain: Does It Really Work?

Meditation for Fibromyalgia & Pain: Does it Really Work?

Meditation is a way to practice being present. According to Jon Kabat-Zinn, a pioneer in the field of meditation and medicine, meditation is a practice of cultivating mindfulness, which means “paying attention, on purpose, in the present moment, non-judgmentally.”

For this post, I wanted to look at some recent research on mindfulness meditation programs involving participants with chronic pain. The purpose of these studies was to assess whether mindfulness can lower pain, reduce depression, and improve quality of life.

The Mindfulness Based Stress Reduction (MBSR) program created by Jon Kabat-Zinn to teach mindfulness meditation to patients had demonstrated remarkable benefits for reducing chronic pain as well as anxiety and depression. I personally have found that this approach has helped me to reduce my anxiety, improve my quality of life, and manage my pain. The MBSR intervention is structured so that participants attend weekly sessions where they learn “different types of formal mindfulness practice, mindful awareness during yoga postures, and mindfulness during stressful situations and social interactions” (p. 227, Grossman et al., 2007).

Researchers investigated the effect of MBSR programs for participants with mixed chronic pain conditions and the significance of at-home practice for pain management. The study measured results in terms of bodily pain, quality of life and psychological symptoms for each chronic pain condition (neck/back pain, arthritis, fibromyalgia, chronic headache, and two or more coexisting conditions). The researchers discovered that the degree of benefit of participating in mindfulness programs varied depending on the chronic pain condition, but that overall improvements were seen in almost every category (Rosenzweig et al., 2010).

Rosenzweig (2010) suggests different possible causes for how meditation practice can improve chronic pain conditions:

  • First of all, nervous system pathways to parts of the brain associated with stress can be inhibited through mindfulness practice.
  • Secondly, reducing psychological symptoms like anxiety and depression can help because those symptoms can amplify the perception of pain.
  • Third, mindfulness practice can help improve emotional regulation and coping skills in stressful situations.
  • Fourth, mindfulness contributes physical self-awareness which could help lead to better self-care.
  • Finally, mindfulness can help activate nervous system function associated with rest and calm (parasympathetic nervous system), which in turn can lead to deep muscle relaxation that may reduce pain.

Similar results were found in a study of the effects of participating in an MBSR course for people with fibromyalgia (Grossman, et al., 2007). Significantly, the researchers interviewed about half of the original participants from the mindfulness training group 3 years later, and found sustained long-term benefits among those who continued their mindfulness practice (Grossman et al., 2007).

One research review compared 38 studies involving a total of 3500 participants. It examined previously published studies which investigated the effectiveness of mindfulness meditation as a treatment for chronic pain. They found that “mindfulness meditation was associated with a statistically significant improvement in depression, physical health-related quality of life, and mental health-related quality of life” (Hilton et al., 2017). In this review, participants showed promising outcomes on pain symptoms, but the degree of improvement was limited.

Research reviews like this are limited in their ability to compare and contrast different studies. Different meditation techniques were used in the different studies, such as Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy. In addition, the studies investigated outcomes in patients with different conditions, like fibromyalgia and migraine – which is like comparing apples to oranges. This highlights the need for more high-quality studies that include a greater number of participants with the same condition, using the same type of meditation program.

When it comes to trying mindfulness meditation, for people with chronic pain, there is nothing to lose and everything to gain. Prescriptions rarely offer total relief, and come with unpleasant side effects. The only cost to meditation is a little bit of time. while the potential benefits are less pain, better mood, and a greater quality of life.

 

References:

Paul Grossman, Ulrike Gilmer, Annette Raysz and Ulrike Kesper. 2007. Mindfulness Training as an Intervention for Fibromyalgia: Evidence of Postintervention and 3-Year Follow-up Benefits in Well-being. Psychology and Psychosomatics 76: 226-233.

Steven Rosenzweig, Jeffrey Greeson, Diane Reibel, Joshua Green, Samar Jasser and Denise Beasley. 2010. MIndfulness-based stress reduction for chronic pain conditions: Variation in treatment outcomes and role of home meditation practice. Journal of Psychosomatic Research 68: 29-36.

Hilton, L., Hempel, S., Ewing, B. A., Apaydin, E., Xenakis, L., Newberry, S., Maglione, M. A. (2017). Mindfulness Meditation for Chronic Pain: Systematic Review and Meta-analysis. Annals of Behavioral Medicine51(2), 199–213. http://doi.org/10.1007/s12160-016-9844-2

Hormonally Challenged: What You Need To Know About Adrenal Hormones, Fatigue, and Fibromyalgia

If you have fibromyalgia and want to reduce your fatigue, this is what you need to know about the critical link between your sleep/wake cycle and adrenal hormones. Your adrenal glands play a vital role in determining your daily energy/fatigue cycle because they produce the important hormones cortisol and DHEA.

The Critical Link Between Adrenal Hormones, and Your Sleep/Wake Cycle

When I got the results of my adrenal function test, I found the explanation for my daily energy and fatigue cycle. This test measures the functioning of your adrenal glands, which are responsible for regulating the production of several critical hormones, including cortisol and DHEA. It can help you figure out your daily energy/fatigue cycle so you can modify your treatment and pacing decisions to best effect.

To be clear, I am not suggesting that the diagnosis of adrenal fatigue,  a controversial condition among medical doctors, is the same as fibromyalgia fatigue. Instead, I believe that research has demonstrated the important role hormones, like cortisol, melatonin and DHEA, play in your daily circadian rhythm (sleep/wake cycle).

Abnormality in circadian rhythm of hormonal profiles has been observed in [fibromyalgia]. Moreover, there are reports of deficiency of serotonin, melatonin, cortisol and cytokines in FMS patients, which are fully regulated by circadian rhythm (Mahdi, et al., 2011).

These hormones are often deficient in people with fibromyalgia. Since cortisol and DHEA are produced by the adrenal glands, I think it is correct to say that ‘adrenal hormones’ are part of the fibromyalgia fatigue puzzle.

What is an Adrenal Function Test?

The test involves taking saliva samples four times during one day (before breakfast, lunch and dinner and at bedtime). My naturopath gave me a kit with four test tubes to spit into, and a plastic envelope to mail the samples across the country to Rocky Mountain Analytical labs (weird, right?). They tested my saliva for the cortisol level from each sample and graphed how it fluctuated during the day. I also had my overall DHEA level tested.

What is Cortisol and Why Should You Care?

Cortisol, also known as the ‘stress hormone’s is produced by the adrenal glands (endocrine glands that sit on top of the kidneys). You may have heard of cortisol and its role in the ‘fight or flight’ response to stressful situation – when the body releases high levels of cortisol , alongside adrenaline, to initiate that heart-pounding mode, pumped up feeling you get in a crisis.

But cortisol also plays a vital role in day-to-day functioning.  Cortisol is released in the morning to help you become alert and focused. It is supposed to decline gradually during the day so that by evening you feel sleepy and ready for bed. Melatonin, the ‘sleep hormone’, rises before bedtime and reduces cortisol production by the adrenal glands. However, in women with fibromyalgia, night-time melatonin has been found to be abnormally low and night-time cortisol abnormally high, probably leading to poor sleep quality.

The green shading on the graph in Fig. 1 shows the ideal downward curve from morning to night. There is a normal range in the population, with people on the upper end going from 7.0 to 1.3 ng/mL from a.m. to p.m. and people on the low end of the range going from 1.0 to 0.2 ng/mL.

In some studies, a pattern of low daytime cortisol and high night-time cortisol is characteristic of a disordered circadian rhythm in some people with fibromyalgia.

 

Fig 1 My Cortisol levels during the day

Fig 1 My Cortisol levels during the day

My results: Mid-afternoon Slump and Energetic Evenings

You can see that my results are all off (above, the dark line connecting dots): high in the morning, low in the afternoon and back up again in the evening. I start the morning at 2.8 ng/ml, decrease to 1.4 by mid-afternoon, then increase back up to 2.6, and finally taper off at 1.0 ng/mL at bedtime. This explains my mid-afternoon slump and energetic evenings. Dr. Love also pointed out that I go from being in the bottom 50% of the normal cortisol range in the morning and afternoon, but by evening I am in the upper 50%, and trying to fall asleep with a relatively high level (l.0 ng/mL cortisol). This is probably contributing to my night time insomnia.

Yes, my results are in the normal range, but fibromyalgia involves increased central nervous system sensitization. My pattern of cortisol production is abnormal and I believe that a sensitized nervous system can interpret sub-optimal levels as intense fatigue.

How To Balance Your Cortisol Levels to Improve Energy

Be wary of many adrenal supplements that lower cortisol – if you have FMS your problem might be cortisol levels that are already too low.  I need to boost my cortisol levels in the afternoon and reduce them in the evening. You can read about my favorite adrenal boosting supplements here.  They include Vitamin C, B5, licorice and rhodiola. For night-time cortisol lowering, I like to use time-release melatonin to improve my sleep.

There are also important lifestyle changes you can make to balance your cortisol levels and improve your fibromyalgia symptoms (New Life Outlook). For example:

  • Relaxing music. Enya is still putting out the tunes, guys. Play it all day or take a break and get lost in it. At a nice low volume, of course.
  • Meditate. Grab your heating pad and a timer. Even just five minutes a day can keep major stress away.
  • Acupuncture. Once a week or once a month, for body and mind relief, I swear by those magic needles!
  • Exercise. Nothing too intense for me. I work with light weights and a slow pace.
  • Eat clean. The more you do it the better you’ll feel. Your body will thank you for not having to work so hard.
  • Consistent sleep schedule. Your body has a natural rhythm, just like Enya. Listen to it… Just like Enya (New Life Outlook).

 What is DHEA and Why Should You Care?

Fig. 2 The numbers

Fig. 2 The numbers

DHEA is produced in the adrenal glands, and is a precursor hormone for estrogens and androgens (male and female sex hormones). This hormone helps to counter the stress effects of cortisol in some tissues, such as the brain and heart, and supports a healthy immune system. It is an important factor in balancing your cortisol levels. Studies have demonstrated that DHEA supplementation can help improve mood and sexual interest in women with adrenal fatigue. It’s role in fibromyalgia is unclear:

A small study published in 2012 suggested that DHEA levels may be low in post-menopausal women with fibromyalgia and that lower levels were linked with reduced pain threshold and tolerance and several measures of illness severity. However, studies have been inconsistent as to whether FMS involves low DHEA levels (VeryWell).

My naturopath recommended 1 start with 5 mg per day (a fairly low dose). I found that my energy is more sustained, even on days where I slept poorly. Processed wild yam and maca root can also increase DHEA.

Update: because I have endometriosis, boosting my estrogen by taking DHEA was worsening my pain levels, so I don’t recommend it for women with endometriosis, fibroids or breast/ovarian cancer. 

Instead, I now take rhodiola when my fatigue is high. Rhodiola is considered to be an adaptogen, and studies demonstrate that taking this supplement improves stress tolerance by “influencing key brain chemicals, such as serotonin and norepinephrine, and natural feel-good opioids such as beta-endorphins” (Life Extension Magazine: Rhodiola).

A Word of Caution About Balancing Hormones

One final note: “In advanced stages of adrenal fatigue, when the body is already exhausted of nutritional reserves, it is inadvisable to take supplements that may stimulate the adrenal glands. Doing so, would be like stepping on the gas pedal in a car that has no gasoline in it. Not only will you not get anywhere, it can actually hurt the car” (Dr. Lam). It’s best to consult with your healthcare provider and to educate yourself about improving your energy by supporting your adrenal glands rather than pumping them up with a bunch of supplements.

I was  made aware of a great new book about Adrenal Fatigue called The Adrenal Fatigue Solution by Dr. Eric Wood and Fawne Hansen. I had previously read a book on adrenal fatigue several years ago, but a lot of research has been done since. This book presents the research in an accessible, easy to read way, along with naturopathic treatments. They also have a helpful website http://adrenalfatiguesolution.com/  with a lot of information there on adrenal insufficiency and treatments. (For full disclosure, the authors contacted me to review the book and provided me with a free copy. I genuinely feel it is a helpful resource on the topic, and have not been compensated for saying so).

Resources

Fatima, G., Das, S. K., Mahdi, A. A., Verma, N. S., Khan, F. H., Tiwari, A. M. K., … Anjum, B. (2013). Circadian Rhythm of Serum Cortisol in Female Patients with Fibromyalgia SyndromeIndian Journal of Clinical Biochemistry28(2), 181–184. http://doi.org/10.1007/s12291-012-0258-z

Life Extension (Rhodiola)

Dr. Lam (Understanding Rhodiola Health Benefits and Adrenal Fatigue Syndrome)

Life Extension (Stress Management)

Mahdi, AA., et al. (2011). Abnormality of circadian rhythm of serum melatonin and other biochemical parameters in fibromyalgia syndrome. Indian J Biochem Biophys.  Apr;48(2):82-7.

New Life Outlook (Cortisol and Fibromyalgia)

Teitelbaum, J. (2007). From Fatigued to Fantastic. Penguin Books: NY.

VeryWell (DHEA Supplementation in Fibro)

Probiotics for Fibromyalgia: Help Your Gut Help You to Boost Immunity and Relieve Anxiety

Can probiotics help treat fibromyalgia? According to science, probiotics can strengthen the immune system, which is compromised in people with fibromyalgia. Probiotics may help relieve stress, anxiety and depression– which are common symptoms in fibromyalgia. In other words, take care of you gut, and it will take care of you!

Probiotics for Fibromyalgia: Help Your Gut Help You

Can probiotics help treat fibromyalgia? Despite all the research being done on friendly gut bacteria, there are actually no studies to date that directly answer that question. But when you dig into the science a little deeper, you can find a wealth of studies that support the use of probiotics to treat fibromyalgia symptoms. In other words, take care of your microbiome (the ecosystem of gut bacteria), and it will take care of you!

Probiotics Can Get Your Immune System into Fighting Shape

Ever since I developed fibromyalgia, I dread getting sick. Infections trigger flare-ups at best and relapses at worst. Many people with chronic illnesses report getting sick more frequently than when they were healthy, and believe that their immune systems are compromised.

This is supported by the science. In the case of fibromyalgia, researchers were able to develop a test for diagnosing the illness by examining cellular immunity. The study proved that people with fibromyalgia have disregulated immune function at the cellular scale. Participants with fibromyalgia were found to have increased chemical messengers called cytokines, which are involved in activating inflammation in the body (Sturgill, et al. 2014).

Strengthening the immune system using different means, including by taking probiotics, seems like a really good idea in the face of this kind of evidence. Up to 70% of the immune system’s activities occur in the digestive tract. There are more than 400 species of bacteria in the gut, which altogether add up to more than 100 trillion bacterial cells. So how do probiotics help keep your immune system in fighting shape?

  • Probiotics protect the lining of your intestines from harmful germs and toxins (Yan et al., 2011). They promote the health and integrity of the cells that line the barrier wall of the gut, keeping germs and toxins from being absorbed into the bloodstream. In the intestines, friendly bacteria compete with harmful bacteria, preventing them from growing out of control. Some probiotics even produce substances to kill harmful bacteria – this is a take no prisoners kind of fight!
  • Probiotics communicate with the immune system to strengthen its response to infections and enhance its repair of intestinal damage. (If the nerd in you wants to know, probiotics interact with intestinal wall cells in complicated ways, such as by releasing signalling proteins that stimulate the immune system). Friendly bacteria can act like guards calling for backup, priming the immune system to prevent and treat diseases, like allergy, eczema and viral infections.

Probiotics May Help Relieve Anxiety and Depression

As people living with fibromyalgia and know all too well, the challenge of living with chronic pain on a daily basis is very stressful and raises difficult emotions. Depression commonly occurs alongside chronic pain (Holmes, 2012). Research has demonstrated that anxiety disorders are more common in patients with chronic pain conditions like arthritis, fibromyalgia migraine and chronic back pain (Asmundson, 2009).

What does this have to do with friendly bacteria? Scientists are beginning to uncover a fascinating gut-brain connection. There is exciting preliminary research on the potential benefits of probiotics for mental health. Researchers call these types of friendly bacteria “psychobiotics.” One study looked at the effect of consuming probiotics on depression versus a placebo. After eight weeks, participants who took the probiotic had significantly lower scores a depression inventory test, as well as lower levels of inflammation (University Health News). If you’re interested in knowing which strains were used so you can pick a similar supplement for yourself –this study used 2 billion CFUs each of Lactobacillus acidophilus, Lactobacillus casei and Bifidobacterium bifidum.

How can probiotics act like “chill pills”?

  • Some probiotics are able to produce the same kind of compounds that the nervous system uses as chemical messengers. For example, gut bacteria can produce serotonin, which is a feel-good neurotransmitter released in the brain and nervous system when we are happy.
  • Probiotics can help regulate inflammation in the body. As you may know, excessive inflammation is linked to many chronic diseases, including depressive disorders.
  • Friendly gut bacteria interact with our hormones, and may help to turn off the response of the stress hormones cortisol and adrenaline.

Take Care of Your Microbiome And It Will Take Care of You

It’s important to remember that research has only studied a few strains of probiotics, among the many thousands that make up the human microbiome. It’s clear that each type of bacteria causes different effects in the body. Some of these effects are contradictory – some probiotics turn up the activity level of the immune system, while others turn it down. The sheer complexity of it all makes it difficult to draw any hard and fast conclusions. What is clear, however, is that having a diverse and replenished microbiome improves overall health.

The best way to take care of your microbiome is to regularly consume fermented foods rich in probiotics, and to take a probiotic supplement. It’s also vital to consume foods that help to “feed” the probiotics in your gut. After all, friendly bacteria need to eat too. Some foods help to nourish probiotics more than others, and these foods are called prebiotics. Some of the best prebiotics to regularly include in your diet are: dandelion greens, garlic, onions, leeks, asparagus, unripe bananas, barley, oats, apples, flax seeds, wheat bran, seaweed and cocoa. Prebiotics are often better consumed raw and cooked.

The best fermented foods to incorporate into your diet are:

yogurt: preferably a natural yogurt without the high sugar content of flavoured yogurt

  • kefir: a fermented milk product like drinkable yogurt
  • kombucha: tastes like a fruit flavoured ice tea, and is a fermented black tea and sugar drink
  • sauerkraut or kimchee: both are types of fermented cabbage
  • miso: a savoury fermented soybean product, usually used to make soup
  • tempeh: a fermented soybean product with a nutty flavour

Resources:

Asmundson, G. and Katz., J. (2009). Understanding the concurrence of chronic pain and anxiety: state-of-the-art. Depression and Anxiety (26)888-901.

Healthline (The 19 Best Prebiotic Foods You Should Eat)

Holmes, A., Christelis, N., and Arnold, C. (2012). Depression and chronic pain. MJA Open Suppl (4):17-20.

Psychology Today (Do Probiotics Help Anxiety?)

Psychology Today (The Gut-Brain Connection, Mental Illness, and Disease)

Sturgill, J. et al. (2014).Unique Cytokine Signature in the Plasma of Patients with FibromyalgiaJournal of Immunology Research.

University Health News (The Best Probiotics for Mood)

Yan, F., and D. B. Polk (2011). Probiotics and Immune Health. Current opinion in Gastroenterology 27 (6): 496-501.

 

Find other fibro blog posts on the Fibro Blogger Directory Friday Link-up

Fibromyalgia Fatigue: The Top 8 Supplements I Take to Improve My Energy

Fatigue is a disabling symptom of fibromyalgia – but I have benefited from several supplements which improve my energy. This article explains the difference between adrenal and mitochondrial energy supplements, how they work and what the research says.

This post contains affiliate links, which help support this blog. I only link to products that I use and like – my opinion has been in no way influenced by the makers of the products I recommend.

Tart Cherry

My Christmas present one year was an evil cold. I had been lucky the past several years not to encounter any viruses. After reading about the  negative experiences of other bloggers with FM or CFS who have caught a flu or a cold, I was nervous about the potential consequences. My worries were realized when, after my other cold symptoms cleared up, the extra fatigue didn’t disappear too. My fibro fog and afternoon fatigue were the worst I had ever experienced!  I spent the months after trying to figure out how to recover my energy to my baseline level.

Prior to this cold, my ‘energy envelope’ consisted of:

  •  required 10 hours of sleep
  • most energetic in the late a.m. and evening, lowest in the afternoon
  • able to do 3-4 hrs of blogging per day
  • able to spend one evening per week out

Now, even 11 hours of sleep was unrefreshing. I had to drop my classes because of afternoon crashing. The strangest symptom was visual over-stimulation – for example, difficulty making sense of store displays during an energy crash. My acupuncturist explained my post-viral fatigue as a failure of my body to turn off the sickness response. In other words, your body makes you feel tired and achey when you get sick to induce rest, so energy can be redirected to your immune system. Usually that response stops when you get better, but sometimes your body fails to ‘flip the switch’ from sick mode to healthy mode.

In the last few years I have discovered that my energy is impacted by two primary factors – adrenal function and mitochondrial function. The challenge is to figure out how to best support energy production in your body, both at the cellular level (mitochondrial) and organ system level (circadian rhythm and/or adrenal fatigue).

Adrenal Glands and Energy Production stop scrolling down

In a previous post, I wrote about the results of my adrenal function test. The adrenal gland regulates the production of several critical hormones, including cortisol and DHEA. Cortisol, also known as the ‘stress hormone’ is produced by the adrenal glands (glands that sit on top of the kidneys). Cortisol regulates many of the body’s responses to stress, including blood sugar levels, metabolism, immune responses, blood pressure, and central nervous system activation. Although high levels of cortisol are released, alongside adrenaline, to initiate the ‘fight or flight’ response to stressful situations, it also plays a role in day-to -day functioning. Cortisol is released in the morning to help you become alert and focused. It is supposed to decline gradually during the day so that by evening you feel sleepy and ready for bed. Proponents of the theory of ‘adrenal fatigue’ argue that initially, in stressful circumstances,  adrenal glands overproduce cortisol. But if a high-stress situation persists over time, the fatigued glands begin to under-produce cortisol, resulting in low daytime levels and worsening daytime fatigue (Life Extension: Stress Management).

The results from an adrenal function test show that my cortisol curve is all off. I start the morning at the low end of the normal range, but then my cortisol slumps significantly by mid-afternoon, and finally increases to the high end of the normal range by bedtime. These results explain my mid-afternoon crash and energetic evenings (not to mention insomnia). According to my naturopath, this pattern of low daytime cortisol and high nighttime cortisol is characteristic of a disordered circadian rhythm in some people with fibromyalgia.

So how can you improve your overall energy by supporting your adrenal function?

  • Vitamin C and B5 (Pantothenic Acid): Both of these vitamins help promote adrenal function. They are inexpensive and provide a good foundation for re-balancing cortisol production. Vitamin B5 is a lesser known but still important member of the B vitamin family and it is used for energy production in the body. According to Dr. Teitelbaum, “your body’s highest levels of vitamin C are found in the adrenal glands and brain tissues, and the urinary excretion of vitamin C is increased during stress” (From Fatigued to Fantastic p. 90). Vit C formulations can be more or less potent and come with or without added antioxidants. I like Natural Factors Extra C + Bioflavonoids.
  • Licorice Root Extract:  In order to try to sustain cortisol throughout the afternoon to prevent the usual crash, I added licorice tincture on really tired days. It helps slow the breakdown of cortisol in the body, so whatever you do produce stays around longer (Life Extension: Stress Management). (Licorice is not for people with high blood pressure, so please check with a health care provider to see if it is appropriate for you and do your research first). I prefer to use a liquid extracts/tincture because I can tailor the dose – I found the average capsule dose made me jittery but with a liquid I can take just a few drops. Dr. Teitelbaum recommends the equivalent of 100 to 150 mg daily.
  • Time Release Melatonin: In order to improve my circadian rhythm, I added 5mg of sustained / time release melatonin at night.  Melatonin reduces cortisol, so it helps me with my elevated night-time levels (Life Extension: Stress Management). This stuff is quite effective! I have been sleeping through the night more regularly since I added this to my night time pill regimen. (I found regular melatonin did not have this effect).
  • Rhodiola: finally, I am also taking Rhodiola to support my nerve and endocrine system functions. Rhodiola is considered to be an adaptogen, and studies demonstrate that taking this supplement improves stress tolerance by “influencing key brain chemicals, such as serotonin and norepinephrine, and natural feel-good opioids such as beta-endorphins” (Life Extension Magazine: Rhodiola).  Rhodiola helps to promote mental focus and energy – key for those of us with fibro fog!

Fibromyalgia and Mitochondrial Function: Improving Energy One Cell at a Time 

Secondly, mitochondrial function is a critical part of increasing energy in fibromyalgia. Mitochondria are the power plants of our cells.

Studies suggest the energy factories may be running a bit low in FM. Muscle biopsies have found patterns of mitochondrial dysfunction (abnormal mitochondria, mitochondrial defects and muscle fiber abnormalities) similar to those typically found in mitochondrial disorders. Some skin biopsies have shown patterns of neurogenic inflammation and oxidative stress – two factors that negatively impact the mitochondria. Peripheral blood cells have demonstrated CoQ10 deficiency, mitochondrial dysfunction, oxidative stress and mitochondrial degradation (Health Rising: Is FM a Mitohondrial Disorder?).

I’m trying to take a combination of supplements that are factors used by mitochondria in the production of energy.

  • D-ribose:  D-ribose is a sugar produced in the body and taken to alleviate fatigue and pain in fibromyalgia and chronic fatigue syndrome. Dr. Teitelbaum contends that CFS/FMS is caused by “energy crisis” in the body, leading to a cascade of different symptoms like fatigue, pain, sleep disturbance, among others. One root cause of the energy problem, he argues, is that the ability of the mitochondria in your cells to generate energy is suppressed. Mitochondria produce the energy, called ATP, used by your cells to carry out all their functions. D-ribose is essential to the production of ATP. Therefore, taking additional D-ribose should help to support mitochondrial function and improve energy output in fatigued patients.  Dr. Teitelbaum has authored a few pilot studies that have demonstrated some promising results. The most recent study was an open-label study published in 2012. Significant improvements were found; specifically a 61.3% increase in energy, 37% increase in general well-being, 29% improvement in sleep, 30% improvement in mental clarity, 15.6% decrease in pain (Teitelbaum: From Fatigued to Fantastic).
  • CoQ10, a powerful antioxidant, is the catalyst that enables mitochondria to produce 95% of all cellular energy (in the form of the compound ATP). A Spanish research team has conducted several studies that demonstrate a CoQ10 deficiency in people with fibromyalgia, leading to mitochondrial dysfunction and increased oxidative stress. These researchers have also found that supplementing with CoQ10 improves clinical symptoms of fibromyalgia like pain, depression and fatigue (Phoenix Rising: CoQ10).
  • Acetyl-L-Carnitine, is an amino acid produced in the body from l-carnitine which is used to manufacture fuel for energy via mitochondria. This nutrient is also used in bodily processes that regulate muscle movement, as well as heart and brain function. People with fibromyalgia have been found to have low levels of carnitine. Supplementing with acetyl l-carnitine has been found in a double-blind placebo-controlled study to improve pain levels, depression and quality of life among people living with fibromyalgia (Prohealth: L-Carnitine).

Since starting this combination of adrenal and mitochondrial support, my afternoon crashing has evened out. My fatigue does not bottom out in the afternoon (less brain fog and no visual over-stimulation). I finally regained my pre-viral energy envelope. I am sharing all of this in the hope it gives some direction to others finding themselves in a similar situation! Take care of yourselves, dear readers!

 

Life Extension (Rhodiola)

Life Extension (Stress Management)

Health Rising (Is FMS a Mitochondrial Disorder?)

Phoenix Rising: (CoQ10)

Prohealth (L-Carnitine: Typically low in fibromyalgia and ME/CFS; Promotes healthy mood and energy)

Teitelbaum, J. (2007). From Fatigued to Fantastic. Penguin Books: NY.

Chronic Illness and Money Pain: The Honest Truth About Coping with Lost Jobs, Less Income and a Tight Budget

 

Chronic Illness and Money Pain: The Honest Truth About Coping with a Lost Job, Low Income and a Tight Budget

Chronic illness hurts all over, and that can extend to your budget. It’s not polite to talk about money, and that can lead to a cone of silence around this difficult subject. When I developed fibromyalgia five years ago, I was forced to leave my graduate program because I could no longer keep up. In the process, I lost my scholarship and my teaching assistant position. Now my husband and I live on a single income. I think it’s important to be open about how illness and disability impact income. First, it is vital to break down the stigma that ‘people who live on a reduced income are lazy.’ Second, I think it can be helpful for people living with long-term health problems to share their experiences and support each other with advice on how they cope with the challenges of life with illness.

Unfortunately, my inability to work is far from being an exception.  According to a Community Health Survey, 14% of people with fibromyalgia report being permanently unable to work (Parlor, 2007). That rate is 25% for working-age people with arthritis (Arthritis Society, n.d.). In Canada, only 51% of working-age people living with a disability are employed, compared with 75% of non-disabled working-age people (CCD, 2013). In addition, people living with a disability are two times more likely to work part-time than non-disabled people (CCD, 2013).

Not surprisingly, the reductions in employment levels among people with illness and disability lead to reductions in income. For example, 43% of people living with fibromyalgia reported their annual personal income to be below $15 000, compared with only 29% of the general population (Parlor, 2007). Overall, 20.5% of Canadians living with disabilities live below the poverty line  (CCD, 2013).

In addition, there are out of pocket medical expenses. This is bad enough in Canada, my home country, where many people may not have extended health insurance for medical drugs or treatments like physiotherapy or massage. In the U.S., there is no public medicare (national health insurance), so the medical expense of just seeinge a doctor can be prohibitive. The CDA (2013) reports that, in the U.S., medical problems are behind 62% of personal bankruptcies and almost 50% of home foreclosures.

Finally, for those who qualify for social assistance, income support is severely limited. In Ontario, Canada, the maximum financial support for a person living with a disability is $1151/month, for all expenses (Community Living Ontario, n.d.). In the U.S., the average monthly benefit for a family paid by Social Security Disability Insurance is $1,130 (CDA, 2013). Since this amount would barely cover rent and food, it is hard to imagine how anyone could even begin to pay for vital medical expenses or enjoy any quality of life.

Those numbers can look pretty bleak and do not capture the strength and resiliency shown by so many living with chronic illness!  It is important for those who do not live with chronic illness to understand that we work harder than anyone you know, everyday, to manage debilitating symptoms, earn a living if we can, participate in our family and social lives, and advocate for ourselves and others.

If your politics tells you that social assistance should provide only survival support for medical and living expenses in order to “incentivize” recipients to work harder, then you are condemning to poverty people whose only ‘crime’ has been to develop a chronic illness. Working harder is not a cure fore a chronic disease or permanent disability. I believe a compassionate and farsighted society should provide adequate medical and income support to people living with illness and disability, because inequality wastes human ability and restricts the freedom of people to participate fully in society. Appropriate accommodations can be put in place so that we can work, including flex hours, remote work opportunities, and many others. We all have something to contribute, and many of us would be able to do more if adequate social supports were put in place.

I’ll get off my soap box now. It’s time to get practical. Since we are where we are in terms of reduced income for people with chronic illness, what can we to do?

  • Build a budget. No matter how limited, every dollar will stretch further if we spend it on what we need. For a simple and practical approach, I like using Gail Vaz Oxlade’s budget builder http://www.gailvazoxlade.com/resources/interactive_budget_worksheet.html
  • For your weekly expenses, use cash! If you also suffer from brain fog, then you will sympathize with how hard it can be to remember how often you swiped your plastic this week. If getting out to the bank is a hassle, then get cash back at the grocery store, so you can do two chores in one.
  • Put your cash in labeled jars or envelopes, keep your receipts, and record your expenses. Clear glass jars work best for me. My budget jars are labeled: groceries, entertainment, drugstore, pet, clothes, transportation and allowance:  http://www.gailvazoxlade.com/articles/budgeting/magic_jars.html.
  • Don’t be too proud to get the help you need. Whether asking for financial advice, applying for social assistance, buying second hand, or going to a food bank if the fridge is bare, remember this isn’t your fault and you deserve the best quality of life possible.
  • Coping with debt and bankruptcy when you have a chronic illness, by Lene Andersen https://www.healthcentral.com/article/when-the-money-runs-out-chronic-illness-and-bankruptcy
  • Here is some advice on winning your fibromyalgia social security case, by Donna Burch: http://nationalpainreport.com/winning-your-fibromyalgia-social-security-disability-case-8831202.html
  • If you are interested in extra ways of making money from home, here are a few resources from Being Fibro Mom:     http://www.beingfibromom.com/category/financial/make-money/

References:

 CDA (2013) Disability Statistics

CCD (2013) Low Household Income and Disability

Parlor (2007). Canadian Women’s Health Network: Understanding Fibromyalgia

Community Living (n.d.) ODSP

Arthritis Foundation (n.d.) Arthritis Facts

Arthritis Society (n.d.) Facts and Statistics

 

Tune In: How Listening to Music Improves Fibromyalgia

Listening to music can reduce pain, improve functional mobility, increase sleep quality, and reduce depression in people with fibromyalgia.

How Listening to music improves fibromyalgia

It is a truth universally acknowledged that we may not all like the same music, but we all like music. Our favourite artists help us celebrate the good times, express our emotions in the difficult times, and while away the time in between.

I’ve seen many article headlines, written by authors with chronic illnesses, acknowledging the role that music has played in helping them get through flare-ups, and other health problems. I’m not going to lie though, around the time that I was diagnosed, I mostly stopped listening to music on my own. You know how a song can carry you back to a moment in your past, like a soundtrack to your memories? Well, I didn’t want to be transported back to a time when I was healthy and free, by listening now to the music I played then. I also didn’t feel like finding new music. I’m not sure why, except that I didn’t feel that certain joie de vivre it takes to explore new things in life.

Research on the Impact of Music on Fibromyalgia

Then, I came across a study that made me rethink this choice: Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter.[1] Researchers found that when people with chronic pain listen to music for an hour a day, they experienced up to a 21% reduction in pain and a 25% reduction in depression. Another important finding was that listening to music made participants feel less disabled by their condition and more in control of their pain. It did not appear to matter whether individuals listened to their favourite music or relaxing music selected by the researchers.

I decided to do some further research to find out whether these findings applied to fibromyalgia. It seems that I wasn’t alone in asking that question. Several studies have investigated the impact of music on fibromyalgia.

A recent study looked at whether listening to a relaxing water and wave sound CD could reduce pain in individuals with fibromyalgia. There was a significant reduction in pain levels among participants who listened to the CD over a two week period, compared to a control group who did not listen to music at all. The study concluded by recommending music therapy for pain management in patients with fibromyalgia.[2] That’s an exciting finding, but since I don’t have access to the exact CD used in the study, how can I take advantage of these findings? I decided to delve a little bit deeper.

A second study investigated whether listening to your favourite music can reduce your pain levels if you live with fibromyalgia. One caveat of this study is that the self-chosen music was relaxing and pleasant. The study found that pain did indeed decrease after listening to music, becoming less intense and less unpleasant.[3] In addition, participants who listened to music also experienced improvements in their functional mobility, measured by the ease of getting out of a chair and walking. This effect lasted even after the music stopped. This suggests that music might be able to help individuals with fibromyalgia perform everyday activities more easily because of its pain relieving effects! Patients in the control group, who listened to “pink noise” (the sound of static) did not experience pain reduction.

But pain isn’t the only unwelcome fibromyalgia symptom. What about sleep? Listening to music designed specifically to improve sleep was found to be effective in a small study of patients with fibromyalgia. After four weeks of listening to the music at bedtime, individuals reported significant improvements in sleep quality.[4] The sleep music was embedded with delta sound waves, which pulsate within specific frequencies of brain wave activity that are associated with deep sleep (0.25-4 hz). Delta brain waves, which are the slowest type of brain wave, are associated with deep sleep. Listening to delta sound waves is thought to stimulate the production of delta waves in your brain. While this may sound like high tech science, unavailable to the average patient, finding this music is as simple as searching for “sleep music delta waves” in YouTube. Personally I have found this really valuable for falling asleep, getting back to sleep and resting during the day.

Why Music Improves Fibromyalgia Symptoms

The nerd in me wanted to know why music seems to have this pain relieving effect.[5] One possibility is that music is an effective distraction from pain (research has found that distraction activities, like memory tests, can help reduce pain). Listening to music is associated with the release of dopamine, a neurotransmitter that is known to have a role in the body’s natural pain relieving mechanisms. Music also produces relaxation, which in turn can help reduce pain levels.

Researchers of this last study believe it is important to listen to music you know and enjoy, because familiarity is helpful for sustaining attention. When we pay attention, where more likely to experience the benefits of listening to music. In another case of science proving the obvious, studies have shown that music has a powerful effect on emotions and mood, and that emotions and mood can affect pain. If you enjoy the music you are listening to, it may be more likely to improve your pain levels.

Needless to say, I’ve decided to put my headphones back on.

How Listening to Music Improves Fibromyalgia Symptoms

References:

[1] Blackwell Publishing. (2006, May 24). Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter ” ScienceDaily. <www.sciencedaily.com/releases/2006/05/060524123803.htm>

[2] Balcı, Güler & Babadağ, Burcu & Ozkaraman, Ayse & Yildiz, Pinar & Musmul, Ahmet & Korkmaz, C. (2015). Effects of music on pain in patients with fibromyalgia. Clinical Rheumatology. 35. DOI 10.1007/s10067-015-3046-3.

[3] Garza-Villarreal EA, Wilson AD, Vase L, Brattico E, Barrios FA, Jensen TS, Romero-Romo JI and Vuust P (2014) Music reduces pain and increases functional mobility in fibromyalgiaFront. Psychol5:90. doi: 10.3389/fpsyg.2014.00090

[4][4] Picard, L. M., Bartel, L. R., Gordon, A. S., Cepo, D., Wu, Q., & Pink, L. R. (2014). Music as a sleep aid in fibromyalgia. Pain Research & Management : The Journal of the Canadian Pain Society19(2), 97–101.

[5] Garza-Villarreal EA et al. (2014)

Real Health News: A Review of the New Life Outlook Browser Extension

Although I am a paid contributor for New Life Outlook, the views expressed in this review are entirely my own.

For the past six months I have written articles about fibromyalgia and chronic pain for the health website New Life Outlook. NLO is an online hub for people living with chronic conditions, featuring informative articles and online discussion communities.  Now they’re launching a Chrome browser extension, called NewTab, to help connect patients to online health resources.

HomeScreenGrab

I recently tried out this browser extension.  Based on my experience, I think it is a useful tool for people who want to be better informed about their specific chronic condition, as well as knowledgeable about how improve their overall health.

NewsScreenGrab

The NLO browser extension has several features, which you can customize for your specific illness. When you click on the NLO icon, you are taken to a web navigation tool with three functions.

  • First, you can scroll through recent NLO articles about your specific health condition and share them to Facebook, Pinterest, and by e-mail. You can also ‘like’ an article if you want to be able to find it later.
  • Second, after selecting your favorite health news sites (like Medical News Today, WebMD and Healthline) and mainstream media websites (like CNN, Fox and NBC), you can scroll through recent headlines in a news feed. When you customize these sites, you will be offered health sites that have specific pages for you chronic condition (ex. Science Daily Fibromyalgia News).
  • Third, NLO shares a stream of Pinterest-worthy inspirational quotes and memes about living with chronic illness. This function helps patients share humor and daily truths about the realities of life with a chronic condition.

MemeScreenGrab

The NLO browser extension has a search function that uses Yahoo search capabilities.  It also has a to-do list function, where you can list upcoming tasks you need to remember. If you are interested, here is a walk-through of how to set-up the browser extension:

Taken altogether I think that the NLO browser extension can help people living with chronic illness find “Real News” from reliable sources about their health and other general topics.  This is important in the wild west of the internet, where there are so many “Fake News” sites.  Reliable information is especially important when it comes to your health – inaccurate information is not only potentially harmful, but could be part of a treatment scam.

This browser extension is also a great resource for health bloggers looking for articles and inspiration to share with their followers. It can be overwhelming to individually search out dozens of websites to find recent articles, trending topics or funny memes.

The NLO browser extension is available in on Chrome web store. I encourage you to check it out!

A Tale of Two Types of Laparoscopic Surgery to Treat Endometriosis

A TALE OF TWO TYPES OF LAPAROSCOPIC SURGERY TO TREAT ENDOMETRIOSIS

 Learn about the most effective type of laparoscopy for endometriosis.

Last summer I had an appointment with my OB-GYN to figure out the next step for treating my internal pelvic pain, which she suspected was caused by endometriosis.  The pain had significantly ramped up in recent months and was virtually constant.  My OB-GYN recommended having a laparoscopy, which she described as a minimally invasive surgery to diagnose and removed endometriosis lesions that might be present in my pelvis.  I left that appointment believing that there was only one type of laparoscopic surgery to treat endometriosis.

I was wrong.

The procedure I finally had this past winter (after months of waiting), with a type of laparoscopy called ablation or coagulation. During this procedure, endometrial lesions are burned away with a high energy heat source, usually a laser. This is the most common type of laparoscopy for endometriosis. Three months after having the surgery, my chronic pelvic pain has never been worse. Ablation was not effective for treating my endometriosis.

However, there is a second kind of laparoscopy for treating endometriosis, called excision. This procedure is less common than ablation, requires more skill, and is more time-consuming.

“Excision removes endometrial implants by cutting them away from the surrounding tissue with scissors, a very fine heat gun or a laser beam…Excision allows the gynaecologist to separate the implants from the surrounding tissue, thus ensuring that the entire implant is removed and no endometrial tissue is left.”[i]

The most important difference between these two types of laparoscopic surgeries, according to a new study, is that excision is more effective than the ablation.[ii]  Researchers compared three recent studies that examined the outcomes of ablation versus excision laparoscopies for treating endometriosis.  They found that excision laparoscopies, compared to ablation, resulted in:

  • a significant reduction in painful periods
  • a significant reduction in chronic pelvic pain
  • a significant reduction in straining with bowel movements
  • a non-significant reduction in painful sex

The researchers concluded that their review “showed significantly greater improvement with laparoscopic excision compared with ablation” in the treatment of endometriosis. I wish I’d known last summer. Now I’m beginning the long process of being referred for excision surgery.

What I Wish I Knew Before Having a Laparoscopy to Treat Endometriosis

[i] http://endometriosis.org/treatments/endometriosis-surgery/

[ii] Pundir, J., & Omanwa, K. (2017, April 26). Laparoscopic excision versus ablation for endometriosis-associated pain – Updated systematic review and meta-analysis. Journal of Minimally Invasive Gynecologyhttp://www.sciencedirect.com/science/article/pii/S1553465017302637

Evidence for New Fibro Drug Therapies: Options to Take to Your Doctor if Your Current Treatments aren’t Working

Evidence for New Fibro Drug Therapies: Options to Take to Your Doctor if You Current Treatments aren't Working

New research into drug therapies helps people with fibromyalgia increase their treatment options. Learning about these new medication options can help you and your doctor you find the best treatment regimen for you.

If you live with fibromyalgia, you know firsthand that one of the primary features of this condition is a lower pain threshold compared to healthy people. There are a number of changes in the body caused by fibromyalgia that increase our sensitivity to pain. One set of changes affect how the spinal cord relays pain sensations from the body to the brain. Several drugs target specific receptors, called NMDA receptors, which are located in deep spinal neurons that carry sensory information to regions in the brain that relate to pain processing. NMDA receptors are activated by signals relayed to the spinal cord by peripheral neurons that sense pressure in muscles, tendons, etc. This type of receptor is activated by the neurotransmitter glutamate. Studies have shown elevated levels of glutamate in the brain and spinal cord of patients with fibromyalgia.[i] There is a strong correlation between elevated glutamate and increased pain in people with fibromyalgia. NMDA receptors can amplify pain signals in patients with fibromyalgia because they are activated to a greater degree by the presence of increased glutamate concentrations in the brain/spinal cord, which trigger pain signals sent to the brain by the deep spinal neurons.

NMDA receptors can be prevented from firing by certain compounds. Two drugs in particular seem effective at decreasing NDMDA receptor activation. One is called memantine. Memantine blocks NMDA receptors and decreases glutamate levels. “A randomised, double-blind study in 63 patients with fibromyalgia compared memantine… with placebo over a 6-month period. Compared to placebo there was a significant reduction in pain and pain threshold and improvement in global function, mood and quality of life”.[ii] Memantine was originally developed to treat diabetes, but has also been used to treat dementia; it has been found to also be effective in treating chronic regional pain syndrome.

Ketamine is another potent NMDA receptor blocker (yes, the illegal party drug). Studies have shown that it can effectively reduce pain for a subset of fibromyalgia patients “Thus, of 58 patients with fibromyalgia in the above 3 studies, 33 (57%) responded to low dose ketamine (0.3mg / kg) infusion, as defined by a reduction of pain by 50% or more.”[iii] However, studies have not adequately investigated long term use of ketamine. However, ketamine has been proven effective in treating chronic regional pain syndrome, which shares many similar characteristics to fibromyalgia.

Another interesting tip focuses on diet changes that can help lower pain levels. Glutamate is found in MSG (monosodium glutamate). Other related compounds, called excitotoxins, like aspartame, can cause harmful over-activity in the brain. “One study showed that 4 weeks of exclusion of monosodium glutamate (MSG), aspartame, and other excitotoxins, resulted in over 30% improvement in fibromyalgia symptoms in 84% of those who completed the diet”.[iv]

What about inflammation and fibromyalgia? A number of studies have found increased levels of pro-inflammatory messengers (called cytokines) in blood collected from FM patients.[v]  A drug called low-dose naltrexone has been investigated for its potential benefits in treating fibromyalgia because of its anti-inflammatory properties.[vi] Naltrexone is primarily used to treat opioid overdoses, but when taken at a low dose before bed, studies have found a statistically significant reduction in FM pain compared to the placebo. A recent study found that “after eight weeks of LDN administration, plasma levels of a range of broadly pro-inflammatory cytokines were decreased. In addition, we found that participants reported less pain and symptoms following LDN. Combined, these results support the hypothesis that LDN may help chronic pain conditions, such as fibromyalgia, by acting as an atypical anti-inflammatory medication”.[vii] Pain reduction was found to be 15% and symptom reduction 18%. While these results are modest, for many FM patients desperate for options, low-dose naltrexone could be a valuable part of their treatment regimen.

Evidence for New Fibro Drug Therapies: Options to Take to Your Doctor if You Current Treatments aren't Working

Works Cited

Littlejohn, G., & Guymer, E. (2017). Modulation of NMDA Receptor Activity in Fibromyalgia. Biomedicines 5 (5), 15-27.

Parkitny, L., & Younger, J. (2017). Reduced Pro-Inflammatory Cytokines after Eight Weeks of Low-Dose Naltrexone for Fibromyalgia. Biomedicines 5 (2), 16.

Ross, R., Jones, K., Bennett, R., Ward, R., Druker, B., & Wood, L. (2010). Preliminary Evidence of Increased Pain and Elevated Cytokines in Fibromyalgia Patients with Defective Growth Hormone Response to Exercise. Open Immunol J, 3, 9-18.

Citations

[i] (Littlejohn & Guymer, 2017)

[ii] (Littlejohn & Guymer, 2017)

[iii] (Littlejohn & Guymer, 2017)

[iv] (Littlejohn & Guymer, 2017)

[v] (Ross, Jones, Bennett, Ward, Druker, & Wood, 2010)

[vi] (Parkitny & Younger, 2017)

[vii] (Parkitny & Younger, 2017)