The 3 Best Diets for Fibromyalgia, According to Science

Learn about 3 diets that improve fibromyalgia symptoms: plant-based, low FODMAP and gluten-free –including an explanation, the science and resources for each diet.

The 3 Best Diets for Fibromyalgia, According to Science

Is Food Really Medicine?

Is there such a thing as a diet to treat fibromyalgia?  While there is no consensus on a single diet to treat FMS, research does point us in a few intriguing directions– specifically, symptoms improvements from plant-based vegetarian diet, a low-FODMAP diet and a gluten-free diet.

Fibromyalgia is difficult to treat. Presently, there are only three prescriptions that are approved by the FDA for fibromyalgia (pregabalin, duloxetine and milnacipran). Unfortunately, although these medications can provide partial relief for some people, none are a magic bullet for treating fibromyalgia. That’s why specialists recommend a multidisciplinary approach to FMS treatment. We know that diet plays an important role in preventing and managing many diseases, such as diabetes and autoimmune diseases, so why not fibromyalgia as well?

In this article, I want to lay out the scientific evidence for three different diet approaches to improving fibromyalgia: plant-based, FODMAP and gluten-free. My hope is that this article can serve as a starting point for you to explore how to use food as medicine to improve your symptoms.

Nutrition can be empowering. That might sound overblown. But, unlike prescriptions or appointments with doctors and physical therapists, there is no intermediary between you and what you choose to eat. Food is personal and what you decide to eat is ultimately up to you. For a person living with fibromyalgia, having the ability to make decisions over something as important as nutrition really is empowering. However, changing daily habits can be a challenge, which is why I have included several free and affordable resources for each diet if you are interested in making any changes.

Fibromyalgia and Plant-Based Vegetarian/Vegan Eating

At least three studies have shown that people with fibromyalgia benefit from a plant- based vegetarian or vegan diet.[1] It’s important to stress the plant-based focus of this dietary therapy. It is possible to eat a diet that is vegetarian, but primarily made up of processed, nutrient-poor, junk food. This won’t improve your general health or your fibromyalgia symptoms. Plant-based foods, including fruits, veggies, whole grains, beans and nuts, contain vitamins, minerals and antioxidants that provide crucial nutritional benefits. It’s quite possible to also obtain balanced macronutrients (carbs, protein and fats) from these plant sources. While vegans and vegetarians both eat plant-based foods, vegetarians also consume dairy, eggs, honey (and sometimes, fish). Vegans do not eat any animal-sourced foods.

Studies have shown that fibromyalgia is linked to high rates of oxidation (damage to tissues caused by particles known as oxidants). Antioxidants neutralize oxidants and serve an important protective function in the body. Researchers hypothesize that consuming a diet rich in antioxidants might help to improve fibromyalgia symptoms.[2]  One study showed that fibromyalgia patients on a vegetarian diet had an improved antioxidant status; 70% of participants also reported lower pain levels and increased well-being.[3]

Another benefit of eating vegetarian is weight loss. Carrying extra weight worsens pain, sleep, depression, and other fibromyalgia symptoms.[4] However, it can be very difficult to lose weight when you have a condition that makes moderate exercise painful. If you have struggled unsuccessfully to lose weight, could it be time to consider going vegetarian or vegan?

A recent study of diabetic patients found that, compared to a conventional low-calorie diet, a vegetarian diet was almost twice as effective in reducing body weight.[5] In a separate investigation into the effects of eating vegan on fibromyalgia symptoms, research participants who were overweight had a significant reduction in body mass index, as well as cholesterol levels.[6] This 3-month study found that eating vegan resulted in significant improvements in FMS symtoms: reduced pain levels, and joint stiffness and improved quality of sleep and quality of life.

After my diagnosis, I ate a lot of processed, packaged food because of the convenience. But it cost me a lot in terms of my symptoms getting worse and gaining weight. After I switched to eating plant-based vegetarian, I lost about 20 pounds and found that some of my symptoms improved, including more sustained energy, no low blood sugar crashes and greater ease of movement.

If you are interested in going vegetarian/vegan, or just incorporating more meatless main dishes into your diet, here are a few resources to get started:

Fibromyalgia and the Low FODMAP Diet

This is a weird sounding diet, right? FODMAP stands for several types of short chain carbohydrate and sugar alcohols. Research has shown that a diet low in FODMAPs is the most effective diet plan for managing Irritable Bowel Syndrome (which includes symptoms like bloating, nausea and changes in bowel movements). In addition, a low FODMAP diet (LFD) can reduce fatigue, lethargy and poor concentration.[7]

Based on these findings, a new study investigated whether reducing FODMAPs in your diet could improve your fibromyalgia symptoms.[8]  The results were positive – a statistically significant reduction in body pain and gastrointestinal symptoms, as well as an improvement in quality of life. I find it interesting that these results indicated improvements beyond only G.I. symptoms . Research into probiotics and dietary interventions has been pointing to a gut-brain connection. Since fibromyalgia involves a sensitized nervous system, perhaps one way to dial down the sensitivity could be via the gut? It’s important to note that this was a pilot study, with a small sample size, and further research needs to be done. However, if you have IBS or significant G.I. issues along with fibromyalgia, a low FODMAP diet might help you manage digestive symptoms and reduce your pain!

How Does a Low-FODMAP Diet Work?

For some people, FODMAPS are poorly absorbed in the small intestine. When they pass into the large intestine, they are quickly fermented, which contributes to gas, abdominal bloating and pain. They also attract water into the large intestines through osmosis, which can alter bowel movements. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols. These can be further divided into five groups called fructans, galacto-oligosaccharides, lactose, excess fructose and polyols.

Foods that contain FODMAPS include:  onions, garlic, mushrooms, apples, lentils, wheat, rye and milk. Importantly, not everyone is triggered by all types of FODMAPs. Instead, the FODMAP diet takes an elimination approach. Initially, all FODMAPs are removed from your diet. Gradually, they are re-introduced one by one so you can determine which ones cause you a negative reaction. Only your FODMAP triggers are permanently removed from your meals.

If you are interested in learning more, you can check out these resources:

Fibromyalgia and the Gluten-Free Diet

It’s impossible to have escaped the gluten-free diet fad that has swept the mainstream in recent years. The evidence is seemingly in every grocery store and on every menu. While it may seem like only a fad, there is a scientific rationale behind why some people may benefit from a gluten-free diet, even if they don’t have celiac disease (CD): “Non-celiac gluten sensitivity is increasingly recognized as a frequent clinical condition with symptoms similar to CD in the absence of the diagnostic features of CD.”[9]

Without getting too deep in the weeds on this topic, gluten is a protein found in wheat, rye, barley and similar grains. In some people with a weakened intestinal barrier, consuming gluten triggers an inflammatory immune response. Some of the symptoms of a gluten sensitivity include gastrointestinal problems like bloating, constipation, diarrhea, abdominal pain, and vomiting, as well as muscle and joint pain, brain fog and chronic fatigue. Although the clinical markers of gluten sensitivity are different from celiac disease, scientists have uncovered markers of intestinal cell damage and increased immune activity, which normalized after eliminating gluten for six months.[10]

A small pilot study investigated whether fibromyalgia patients with gluten sensitivity improved after beginning a gluten-free diet. Patients with confirmed gluten sensitivity experienced an improvement in pain, fatigue, neurological and gastrointestinal symptoms after beginning a gluten-free diet. Of the 20 participants in the study, fifteen experienced a significant reduction in body wide pain – some shortly after beginning the diet and others after a few months. The authors conclude that this pilot study suggests non-celiac sensitivity may be a treatable cause of fibromyalgia, but that further research needs to be done.

If you are curious whether gluten might be worsening your symptoms, it’s best to begin with a trial elimination diet. This means eliminating all sources of gluten from your diet for several weeks. During this period, keep a food log of what you eat and what your symptoms are each day. Then reintroduce gluten into your diet, and observe whether your symptoms change or worsen. Since more than half of FM/CFS patients see their symptoms improve when they eliminate certain foods, including corn, wheat, dairy, citrus and sugar, you may want to add other foods to your elimination diet.

If you suspect that gluten may be impacting your fibromyalgia, it’s good to rule out celiac disease first. Start by making an appointment with your doctor (and bringing your food log). In order to rule out non-celiac gluten sensitivity, you may want to consider working with an integrative medical doctor, naturopathic doctor, or nutritionist. Although research supports the existence of gluten sensitivity, the mainstream medical profession lags behind when it comes to accepting this condition, so alternative and complementary health professionals may be better to work with during this process.

Here are a few resources to check out if you are interested in going gluten-free:

 

References

[1] https://vegetarianprescription.org/2016/11/01/the-treatment-of-fibromyalgia-with-a-plant-based-diet/

[2] https://vegetarianprescription.org/2016/11/01/the-treatment-of-fibromyalgia-with-a-plant-based-diet/

[3] Høstmark A, Lystad E, Vellar O, et.al. Reduced plasma fibrinogen, serum peroxides, lipids, and apolipoproteins after a 3-week vegetarian diet. Plant Foods for Human Nutrition. Jan 1993;43(1):55-61.

[4] http://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/obesity-fibromyalgia.php

[5] https://www.sciencedaily.com/releases/2017/06/170612094458.htm

[6][6] Kaartinen K, Lammi K, Hypen M. Vegan diet alleviates fibromyalgia symptoms. Scandinavian Journal of Rheumatology. 2000; 29(5): 308-13.

[7] http://fodmapfriendly.com/what-are-fodmaps/

[8] Marum, A.P. et al. (2016). A low fermentable oligo-di-mono saccharides and polyols (FODMAP) diet reduced pain and improved daily life in fibromyalgia patients. Scandinavian Journal of Pain 13:166-72. http://www.scandinavianjournalpain.com/article/S1877-8860(16)30084-2/fulltext?mobileUi=1

[9]Isasi, C. et al. (2014). Fibromyalgia and non–celiac sensitivity: a description with remission of fibromyalgia. Rheumatology International , 34 (11), 1607-16.

[10] http://www.medicalnewstoday.com/articles/312001.php

Massage for Fibromyalgia: A Complete Guide to Getting the Most Out of this Healing Therapy

Massage for Fibromyalgia_A Complete Guide

If you have fibromyalgia, could massage be the effective, natural and drug-free treatment you have been looking for to treat your muscle pain?

If there is one hallmark symptom of fibromyalgia, it has to be sore, aching muscles. Chronic body-wide pain is one of the most limiting features of this chronic illness, because it reduces our ability to participate in the activities we love. Unfortunately, muscle pain is also one of the more difficult symptoms to treat. Medications for fibromyalgia offer only partial relief from pain. So with no magic bullet available, many patients consider alternative treatments. I don’t know about you, but painful muscles often lead me to think about massage. But is massage therapy an effective treatment for fibromyalgia?

For someone who doesn’t have fibromyalgia, that might seem like an odd question. The reason people with fibromyalgia are cautious about massage is because of another common symptom called ‘allodynia’ – painful sensitivity to pressure or touch on the skin. If putting on a blanket hurts you or wearing clothing feels like sandpaper on your skin, then you probably experience  allodynia. In cases where this is severe, massage is probably not the best treatment option.

However, a common misconception is that when it comes to massage, the attitude should be ‘no pain, no gain’. This is untrue. It is entirely possible to have a therapeutic massage that is also gentle. In fact, research shows that “Manual therapy, and any exercises prescribed as part of it, should … take into account the fact that our bodies react strongly to sensation. Basically, they should be gentle and appropriate to what we can handle without increased symptoms.”[i] If you can tolerate light pressure, then massage might well be the effective, natural and drug-free treatment you have been looking for to treat your muscle pain.

Personally, once I found the right therapist, massage became one of my go-to treatments for muscle pain. It’s crucial that you find a practitioner who has the right training and experience. In this article, I’m going to share the different types of massage and the essential questions you need to ask in order to get the most out of your treatment session.

Infographic on massage for fibromyalgia

What are the Different Types of Massage Therapy for Fibromyalgia?

 Swedish massage: is the most common type of massage therapy. It is based on Western medical concepts of anatomy (compared to the focus on energy therapy in Asian forms of massage). Swedish massage uses techniques like ‘effleurage’ (long smooth strokes), as well as kneading, rolling, circular and rocking motions.

Shiatsu massage: this Japanese form of massage incorporates acupressure points from traditional Chinese medicine.[ii] Essential life energy, called ‘qi’ (chee) is believed to flow along channels in the body called meridians. Acu points are mapped along meridians. Stimulating acupressure points restores the flow of qi along the meridians, improving the health of the individual.

Deep tissue massage: this type of massage focuses on knots, or adhesions,  in the deeper layers of muscles, which are associated with chronic pain or injury. Techniques include deliberate strokes or friction across the grain of the muscle. As the name implies, this form of massage uses a greater degree of pressure, so fibromyalgia patients should communicate closely with their therapist to ensure that the massage is not painful.

Myofascial release massage: focuses on muscles and fascia – the connective tissue membrane that encompasses your muscles like a sheath. When the therapist feels that myofascial tissue is tight and constricted, including finding trigger points (painful contractions of muscle tissue), they use techniques to lengthen and restore elasticity using stretching and manual pressure.[iii] In my personal experience, this kind of therapy can be intensely painful if the practitioner applies direct pressure to trigger points. However, finding a practitioner experienced in treating fibromyalgia makes all the difference – in my case, the therapist used gentler, more indirect techniques, making the massage much less painful.

What are the Benefits of Massage for Fibromyalgia?

In general, massage increases blood circulation, encourages cell oxygenation and nutrition, relieves muscle tension, and releases natural painkillers like serotonin.[iv]

Massage has been found to improve pain levels, sleep and mood in people living with fibromyalgia.[v] One study found that levels of a neurotransmitter, called substance P, which stimulates pain receptors in the body, were reduced after twice-weekly massage therapy sessions over five weeks. As a result, the “patients’ physicians assigned lower disease and pain ratings and rated fewer tender points in the massage therapy group.”[vi]

Another study investigated the effects of shiatsu massage for managing fibromyalgia symptoms. It found that participants who received a twice-weekly 40 minute shiatsu massage for eight weeks had reduced pain intensity and decreased sensitivity to pressure, as well as improved sleep, compared to a control group .[vii]

Researchers have also investigated whether myofascial release massage improves fibromyalgia symptoms. A randomized, placebo-controlled study found that the experimental group (who received massage) had improved anxiety levels, quality of sleep, pain levels and quality of life, as compared to the control group (who did not have myofascial massage). However, six months after the study concluded, only sleep quality remained significantly better for the experimental group than the control group. This suggests that massage needs to be continued on an ongoing basis to see the full benefits of the treatment.[viii]

 How Do I Find a Qualified and Experienced Massage Therapist?

Finding the right massage therapist is the key to getting the most benefit from this treatment for fibromyalgia. I have had healing, therapeutic massages and painful, flare-inducing massages. Through trial and error I learned that the primary difference was the training and experience of the massage therapist. Training matters because regulations for massage therapy vary across states in the US and provinces in Canada. Unfortunately, some massage practitioners have very little training or clinical experience and could do more harm than good if they treat you.

However, in order to increase standards and build consumer confidence, a number of professional massage therapy organizations have created certifications with a higher standard of training and clinical experience. In order to receive this certification, therapists voluntarily meet these standards. Before seeing a potential massage therapist, make sure you ask:

  • (In the US) Are you board certified by the National Certification Board for Therapeutic Massage and Bodywork?  The NCBTMB is the regulatory authority for massage therapy professionals in the USA, and responsible for ensuring that massage therapists follow best practices and uphold the codes of ethics, quality and legality. A helpful website is NCBTMB.com, where you can locate a Nationally Certified Massage Therapist in your zip code.
  • (In Canada) are you a member in good standing of your provincial massage therapy professional organization? Massage therapy Association self-regulate standards of practice in six Canadian provinces, while four have established massage therapy as a regulated health profession. You can utilize provincial massage therapy association websites to find a therapist near you.

Broadly speaking, I have found that massage therapists often focus on either relaxation, sports medicine or injury rehabilitation/chronic pain. Spas often employ a ‘masseuse’ for relaxation massage, who are typically poorly trained in therapeutic massage techniques. Sports or athletic focused massage therapists often use more aggressive techniques. This makes sense, given that athletes are anxious to get back on the field, but it is not appropriate for fibromyalgia patients who have a high sensitivity to pressure or touch and a low threshold for pain. This makes massage therapists who have experience in rehabilitation and treating chronic pain the best choice for people living with fibromyalgia. Always ask:

  • What is your experience treating clients with fibromyalgia?
  • What type of massage do you practice?
  • Inform them that you are looking for a gentle therapeutic massage, not a painful or intense massage

As we have discussed throughout this article, each individual with fibromyalgia has a different level of sensitivity to touch. It is critical that your massage therapist asks for your continual feedback to ensure that they use the right intensity and amount of pressure for you. Once you’ve selected a therapist,

  • Ask that they use light pressure during your first appointment
  • Tell them that it is important that you have an ongoing dialogue about whether the pressure or technique is comfortable for you
  • Don’t be afraid to speak up if something feels painful or uncomfortable!

References:

[i] https://www.verywell.com/fibromyalgia-chiropractors-massage-therapists-715646

[ii] http://www.prevention.com/health/health-concerns/fight-fibromyalgia-shiatsu

[iii] http://www.mayoclinic.org/diseases-conditions/back-pain/expert-answers/myofascial-release/faq-20058136

[iv] http://www.prevention.com/health/health-concerns/fight-fibromyalgia-shiatsu

[v]http://journals.lww.com/jclinrheum/Fulltext/2002/04000/Fibromyalgia_Pain_and_Substance_P_Decrease_and.2.aspx

[vi] http://journals.lww.com/jclinrheum/Fulltext/2002/04000/Fibromyalgia_Pain_and_Substance_P_Decrease_and.2.aspx

[vii] https://www.massagemag.com/shiatsu-improves-fibromyalgia-symptoms-2-13210/

[viii] https://www.hindawi.com/journals/ecam/2011/561753/abs/

Real Life with Chronic Illness: Inspirational Blog Posts from Spring 2017

Real Life with Chronic Illness: Inspirational Blog Posts from Spring 2017

How reading chronic illness blogs helps me navigate life with chronic illness

Living with a chronic illness can feel isolating. How many people do you know who even have a chronic illness? Our daily challenges are unique, and it can be difficult to find someone who really understands.. Even when it comes to positive changes, I find that friends and family can have a difficult time relating to the treatments or lifestyle changes that I’ve made in order to improve my health and well-being. For example, starting a meditation practice or taking supplements was considered equivalent to fraudulent ‘snake-oil treatments’  by some of my more skeptical relatives. Even more broadly, living with chronic illness changes your perspective on life and your priorities. While you might see working towards acceptance as part of healing, other people around you might see it as ‘giving up’ on getting better. For all of these reasons, it can be difficult to find your way through the realities of life with a chronic illness

This is where the community of chronic illness bloggers comes in. Reading about shared experiences can help reduce that sense of isolation –– knowing other people out there can relate to what you are going through. Chronic illness blogs can help to suggest treatments or self-care strategies, which is important given the lack of research, medical treatments or adequate pain management supports out there. Most importantly, chronic illness blogs can inspire their readers with the wisdom of experience and the power of insight.

Here, I wanted to share a few of the inspiring posts I read this spring about navigating real life with chronic illness:

Inspiring blog posts from Spring, 2017

 

You are miracle.
You are harmony.
You are 90 trillion cells weaving new tapestry.
Each one testifies to the mystery
That even on the worst day
Even at your worst
You are still your best
You are miracle

  • The Beauty of the Story Your Life Is Telling by Stacey from Chronically Whole An inspiring take on the narrative of being a person living with chronic illness. My favourite lines: “Some may say it’s telling a story of failing by not getting better faster [but]… Let your life keep telling the story of adapting, overcoming, loving in spite of loss, being unafraid  to face the uncertain future head on…”

 

  • What can fairy tales teach us about living with chronic illness? That we have to be our own heroes, for one.  Rhiann, from My Brain Lesion and Me, writes:  “My experience of living with a permanent neurological condition has also taught me that we all have the power to rescue ourselves from our own battles in whatever form that they take.” Read more at Life is Anything But a Fairy Tale. 

 

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

Acceptance, Grief & Chronic Illness: The Top 4 Ways I Learned to Cope After my Diagnosis

Acceptance Grief and Chronic Illness:THE TOP 4 WAYS I LEARNED TO COPE AFTER MY DIAGNOSISYou probably vividly remember that moment when you sat in a doctor’s office and were told that the explanation for all your confusing symptoms was summed up in a word: fibromyalgia. For some of you, this diagnosis was the first chronic condition you were diagnosed with. For others, it was the second. And for those who had already been diagnosed with multiple chronic illnesses, this one was just another to add to the collection. The reality is that fibromyalgia is one of ten conditions the National Institutes of Health recently labelled Chronic Overlapping Pain Conditions (COPCs ).[1] These include chronic migraine and headache, interstitial cystitis, vulvodynia, IBS, low back pain, endometriosis, TMJ disorders, and chronic fatigue syndrome,  In addition, fibromyalgia is commonly diagnosed alongside autoimmune and inflammatory conditions, like rheumatoid arthritis and osteoarthritis.[2]  Finally, anxiety and depression are much more likely to be co-morbid (found simultaneously) in people living with fibromyalgia.[3]  Many fibromyalgia patients will have the déjà-vu experience of sitting in a doctor’s office and being diagnosed with yet another chronic illness.

I recently relived that experience myself. I sat in my OB-GYN’s office and was told that a recent laparoscopy confirmed that I have endometriosis alongside my fibromyalgia. I told myself that after years of dealing with chronic pain, this was no big deal – same problem, different location. All I needed to do was learn what my treatment options were and then go home and use the self-care skills I have developed over the years to manage my pain. A few days later, while I was examining my incision scars, I broke down in tears. “Get a grip,” I told myself, “this is nothing new“. But as the pelvic pain returned, despite the laparoscopy, and I confronted the reality of dealing with another hard-to-manage chronic illness,  I had to acknowledge my feelings of anger and sadness over this new diagnosis. Intellectually I know that being diagnosed with endometriosis will not change my life as dramatically as my fibromyalgia diagnosis did. I’ve already had to leave my career because of my disabling fibro symptoms. Instead, I stay at home pursuing hobbies, like writing and calligraphy, while I look after my health.

So I wondered, why is this second diagnosis affecting me so much?  To answer this question, I needed to remember what I experienced after my first diagnosis.  As anyone who has had a significant diagnosis knows, you go through a period of grieving afterwards. Grief is the “primary emotional process of reacting to… loss” (Absenger, 2015).[4]  The stages of grief after a diagnosis include: numbness-disbelief, separation distress, depression-mourning, and recovery.[5] While there are similarities to the stages of grief that people generally experience after any loss, the grieving process for people diagnosed with a chronic illness has unique characteristics.  In an article for social workers helping clients with chronic illness, Kate Jackson (2014) explains the difference:

Most often, grief is a reaction to a single, time-limited event… Grief associated with chronic illness, however, is more complex for many individuals.  For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses.

The scope of losses due to chronic illness are broad and complex, and they can change during the course of an illness.  The loss of health and ability can, in turn, cause losses in a person’s career, social life, sexual function, body image, relationships, parenting ability  and daily functioning, among other areas.  Most fundamentally, these secondary losses caused by chronic illness can fracture self-identity and diminish self-esteem.  The fact that many people with chronic illness feel that their experiences are invalidated by stigma and disbelief can further their sense of isolation.

The concept of infinite losses helped me to understand why a second diagnosis brought up so many difficult emotions. I have had to acknowledge that the grieving process over one, or multiple, illnesses is not a ‘one and done’ kind of thing. Grief comes in waves. If your illness changes, or you develop a new illness, your emotional response will also change because, correspondingly, the losses you experience are new and different. Prior to the pelvic pain that led to my laparoscopy, my fibromyalgia symptoms had stabilized and I had reached a state of acceptance about my illness. I wanted to believe this was a permanent state. I resisted the idea that a new condition would cause me to grieve again (because who wants to go through that once more?). However, I have come to recognize that the losses caused by endometriosis in my life are significantly different than those caused by fibromyalgia.  For me, endometriosis is entangled with my desire to start a family and be a mother, my body image and my sense of femininity. In contrast, fibromyalgia has primarily affected my career aspirations and the part of my identity that was defined by my professional accomplishments.

Once I acknowledged that I was grieving over my second diagnosis, I felt a greater sense of peace.  Resisting these feelings consumed a lot of my energy and effort. Jackson (2014) explains that “people with unresolved grief may experience more profound and difficult-to-treat depression and anxiety”.  Furthermore, the symptoms of a chronic illness can be worsened by unacknowledged grief, including pain, fatigue and cognition.  As people living with chronic illness, I think it’s important that we be on the lookout for experiencing grief when we develop a new illness, or a change in a current illness.  Understanding that grief and acceptance are fluid states can help us be more open to acknowledging grief.  It’s important to seek out support and help once you recognize these feelings. Here are a few tools and resources for coping with grief about your chronic illness, based on what has helped me:

  • Mindfulness meditation: “Mindfulness is awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn, a pioneer of mindfulness in medicine. The Mindfulness Based Stress Reduction (MBSR) program created by Jon Kabat-Zinn to teach mindfulness to patients had demonstrated remarkable benefits for reducing chronic pain as well as anxiety and depression in fibromyalgia.[6] You can find an MBSR program in your community, or there is a free version online http://palousemindfulness.com/. Alternatively, you can learn meditation using a free app on your phone. Two of my favourites include the Insight Timer and The Meaning of Life Experiment. You can practice mindfulness through meditation, body scans, mindful eating, or mindful movement like yoga or Tai Chi.
  • Cognitive Behavioural Therapy: Studies have found that participating in CBT can help reduce pain, depressive thoughts, and improve quality of life for people with chronic pain.[7] One of the core parts of the program is learning to identify negative thinking traps, or ‘cognitive distortions’.  These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves” (Grohol, 2016).[8] These programs also focus on helpful behaviour changes like learning deep relaxation as well as pacing activities. CBT programs are run in most communities and your doctor should be able to refer you to one.
  • Find a support group, whether in person or online. It can be incredibly powerful to know that you are not alone in facing the challenges caused by your chronic illness. There are private facebook groups for every condition, where you can find support and people with shared experiences. The #spoonie hashtag can help you find other people with chronic illness on twitter. If you are able to, an in-person support group can be an important source of connection if you are struggling. No matter how much support your family and friends can provide, it can help to talk with people who have the same condition(s) you do.
  • Talk with a professional therapist: Unresolved grief is a difficult issue to work through. Many people benefit from talking with an experienced therapist, one-on-one. My advice is to find a counsellor with experience in working with clients who have chronic illness- your specialist may be able to refer you. It’s critical that you ascertain that the therapist validates the existence of your chronic illness and does not tell clients that the illness ‘is all in their head’. Think of the first appointment as an interview, where you see if you are compatible and ask about their professional experience. You may wish to learn more about the therapeutic approaches used by different therapists prior to choosing one. For example, I found that the empathetic, strengths-based counselling provided by a social worker fit much better with my personality than the objective, analytical technique used by a psychiatrist.

Acceptance Grief and Chronic Illness

[1]http://www.overlappingconditions.org/About_COPCs

[2] http://www.sciencedirect.com/science/article/pii/S0025619615002438

[3] https://www.verywell.com/fibromyalgia-comorbid-overlapping-conditions-716184

[4] Absenger, W. (2015). Mindfulness and the Stages of Grief in Chronic Disease. ACEF. Retrieved 15 April 2017 from http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/

[5] National Cancer Institute. (2014, October 8). PDQ® grief, bereavement, and coping with loss. National Cancer Institute. Retrieved 15 April 2017 from http://www.cancer.gov/cancertopics/pdq/supportivecare/bereavement/patient

[6] 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

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

[8] Grohol, J. (2016). 15 Common Cognitive Distortions. Psych Central. Retrieved on December 15, 2016, from http://psychcentral.com/lib/15-common-cognitive-distortions/

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)

Nondrug, Trigger Point and Alternative Fibromyalgia Treatment

“The good news is that many therapies can ease this type of muscle pain, and for the most part, their side effects are minimal. Various movement therapies and nourishing supplements may reduce chances that trigger points will develop in the first place. Consider trying out a variety of the alternative treatment options described below, based on your needs.” Fabulous reference for non-drug options!

Nondrug, Trigger Point and Alternative Fibromyalgia Treatment.

Fibromyalgia…it’s all in your hands?!

Fibromyalgia isn’t all in your head…It’s in your hands.

Wait. What?

A breakthrough study has found a clear tissue differentiation in the hands of women with fibromyalgia. Researchers took biopsies of palms and found an increased concentration of a type of nerve fibre that regulates blood flow through specialized shunts, found only in hands and feet (Fig. 1). **

article8-1

This study is important because it provides a biological test that physicians in the future will be able to use to diagnose fibromyalgia, rather than relying on subjective measures. It also firmly proves all the skeptics and naysayers wrong. Secondly, the research points to an explanation for what causes fibromyalgia.

So, what causes it? We need to start with a short biology lesson to understand. Arteries carry oxygenated blood to our tissues, moving from large artery vessels to smaller arterioles and finally to capillaries. Capillaries supply the local tissue with oxygenated blood and collect de-oxygenated blood which they carry to veins (via small vessels called venules). In the hands and feet there are specialized shunts (think valves), which can redirect blood flow towards or away from the capillary beds in the palms and soles. As Dr. Frank Rice, the leading scientist at Integrated Tissue Dynamics LLC (Intidyn), as part of a fibromyalgia study based at Albany Medical College, explains, “The AV shunts in the hand are unique in that they create a bypass of the capillary bed for the major purpose of regulating body temperature…Under warm conditions, the shunts close down to force blood into the capillaries at the surface of the skin in order to radiate heat from the body, and our hands get sweaty. Under cold conditions, the shunts open wide allowing blood to bypass the capillaries in order to conserve heat, and our hands get cold.” * The shunts are controlled by nerve fibres that open and close as needed. Fibromyalgia patients have an increased concentration of the nerve fibres which open the shunts. This picture does a better job of explaining how it works:

article9-1

So what does this mean? It turns out that the hands and feet act like a reservoir for blood. When blood is needed by other tissues in the body, such as active muscles, it can be diverted where it’s needed. If the blood flow is mismanaged because of the distinct tissue pathology found in the fibromyalgia patients, it could cause the muscle pain and achiness which characterizes the disease.* Furthermore, the researchers believe mismanaged blood flow could cause fibro fog and sleep problems. Dr. Rice says this research “appear[s] to fit with other published evidence demonstrating blood flow alterations to higher brain centers and the cerebral cortex of fibromyalgia patients”.*

This research really shakes up the conventional explanations for what causes fibromyalgia. It’s exciting, but I’m not quite sure what to make of it. How does it fit with recent research demonstrating immune dysfunction at the cellular level in FM patients? Or previous studies which have found altered levels of neurotransmitters like serotonin, dopamine, and substance P?

Personally, I don’t experience extreme sensitivity in my hands and feet, which Dr. Rice suggests is common for FM patients. I do find the sensation of cold objects painful when they shouldn’t be. In addition, my hands and feet are always icy cold. I’ve caused quite a few shocked yelps from my husband when my feet inadvertently touch his, or when I try to hold his hand!

Overall this is an exciting step towards finding the cause of FM and it will be interesting to see where it leads.

References:

Albrecht PJ, Hou Q, Argoff CE, Storey JR, Wymer JP, Rice FL (2013). Excessive Peptidergic Sensory Innervation of Cutaneous Arteriole-Venule Shunts (AVS) in the Palmar Glabrous Skin of Fibromyalgia Patients: Implications for Widespread Deep Tissue Pain and Fatigue. Pain Medicine, May 20. doi: 10.1111/pme.12139 [Epub ahead of print].

Posted at the National Library of Medicine (PubMed): http://www.ncbi.nlm.nih.gov/pubmed/23691965

A description of this study for the general public can be found at: http://www.intidyn.com/Newsroom/Fibromyalgia Pathology for lay people 2013-06-24.pdf