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Tune In: How Listening to Music Improves Fibromyalgia

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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 fibromyalgia. Front. Psychol. 5:90. 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 Society, 19(2), 97–101.

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

Book Review: ‘Memory of Health’ by Edie Summers

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book review_memory of health

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I was recently given the opportunity to review a new book by Edie Summers called Memory of Health. Edie Summers is both a wellness coach and chronic illness patient expert, with 20 years of experience in the alternative health field.

 

If I had to sum up Memory of Health in a sentence, I would say that it is essentially a manual of self-care for people living with chronic illness. The approach that Edie Summers takes to health and healing is truly holistic, which I think is perfectly summed up by a quote she includes: “Health, wholeness and holiness … all three share the same root word and all three share the same state of harmony or disharmony (Deepak Chopra).”

So what can you expect to find in this book? First, Summers shares her personal journey living with chronic illness, including how she recovered. She emphasizes the power of storytelling for well-being. Many of us with chronic illness can feel very alone in our experiences living with these conditions. Connecting with each other over our shared experiences is empowering. From making us feel less isolated in our experiences, to learning from each other, storytelling is very impactful. And there is much to learn from Summers’ story. One thing that really resonated with me was her relentless detective work to find what helped her to heal. The other was how Summers identified mental, physical and spiritual causes that contributed to her illness, and then made changes to effect her recovery.

Secondly, this book covers a wide range of factors that may contribute to chronic illness, and how to address each in turn, including:

  • identifying and removing environmental toxins that may exacerbate your condition
  • causes of chronic fatigue, including changes to the thyroid, anemia, microbiome, immune health, inflammation, depression, etc.
  • improving nutrition, restorative movement, relaxation, mindfulness, improving sleep etc.

In covering all these topics, Edie Summers keeps her focus on the systems that keep the body in balance. In her own words: “This is why I’m fascinated with systems biology which notices patterns, watches for the surfacing of self-organizing models, and observes healing from a holistic point of view. The thing is, nature is a dynamic system, which learns, evolves, and grows (p.120).”

In the final sections of Memory of Health, Summers provides a roadmap to self-care in order to help readers improve their well-being. The book includes detailed summaries of tips to improve physical health including diet modifications, supplements, super foods, relaxation, de-stressing, sleep support, yoga and many other important topics.

I think the most powerful section of the book is dedicated to mental, emotional and spiritual healing. Summers writes “The problem is, you cannot heal if you are not present in your body. This is your first step: get back into your body and stay there. It bears repeating: health resides in your body (p. 336).” Summers believes the road to greater presence is founded in self-love. Finally, she emphasizes connection– to loved ones, to activities that give us joy and to a sense of purpose.

Ultimately Summers sees all these different threads of wellbeing being woven together to effect synergy. She explains: “Synergy, then, is how health occurs, when the total is greater than the sum of “its” parts. A great example of synergy is the experience of listening to a symphony orchestra vs. hearing each individual instrument played on its own (p.280).”

At times I found reading this book challenging because the way it is written is very dense. Some sections interweave scientific explanations, personal observations and spiritual reflections in a way I sometimes found hard to digest all at once. I think the best way to read this book is to focus in on the sections you think are most applicable to your situation, rather than trying to read the entire thing in one go. There is a very detailed Table of Contents to help you identify the sections that you feel are most relevant to you, which is very helpful.

The other caveat is that all of these suggestions are based on Edie Summers’ personal experiences and should not be taken as medical advice. Make sure you consult with a healthcare practitioner before trying to implement any of these tips.

So, ultimately, who is this book for? I think it is ideally suited to anyone living with a chronic illness who feels like they have tried everything and nothing has worked. Memory of Health opens up many new avenues to pursue and can provide hope to people who feel stuck. It is also an inspirational read. If you are feeling in need of guidance on how to live with more purpose, joy or connection, even if you have a chronic illness, then I think this is the book for you.

Click here to see more reviews on Amazon

Click here for a 40% discount on Memory of Health from Lulu.com

Click here to visit Edie Summers’ website

The 3 Best Diets for Fibromyalgia, According to Science

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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

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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

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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. 

 

Breathe Safe: A Review of Enviroklenz Everyday Odor Eliminator

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although this product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. This post contains affiliate links.

What are the health concerns about indoor air pollution?

A few years ago, I learned that there was formaldehyde in my conditioner (DMDM hydantoin). My jaw dropped open for a good 30 seconds. How was this possible? I used to think that government safety regulation prevented anything too harmful from being used in personal care products. That was before I began reading ‘There’s Lead in your Lipstick’ by Gillian Deacon. Apparently there is virtually no industry regulation on what ingredients companies can put in their products.

Over time, I also learned that the same lack of health safety regulation is true for scents, fragrances and chemical air pollutants. I bought a new area rug and the smell gave me a serious headache. I did some research and learned that unhealthy odours are caused by “Volatile Organic Compounds” (VOCs), which are gases emitted from indoor materials. VOCs are emitted from furniture, drapes, carpets, foam insulation, particle board, and other common items. Other VOC sources include personal care products like hair spray or perfume, as well as paints, lacquers, and cleaning supplies. Health concerns caused by VOCs include: “eye, nose and throat irritation, shortness of breath, headaches, fatigue, nausea, dizziness, and skin problems. Higher concentrations may cause irritation of the lungs, as well as damage to the liver, kidney, or central nervous system. Some VOCs are suspected to cause cancer in humans and have been shown to cause cancer in animals.”[1]

VOCs are of particular concern to many people with chronic illness, who may have fragrance allergies and sensitivities. For people with a condition called Multiple Chemical Sensitivities (MCS), in particular, VOCs pose a daily threat to health and well-being.

How can Enviroklenz products help you breathe safer?

Even though I knew about the health concerns associated with VOCs, I didn’t know if there was much I could do about these risks. That’s why I was excited to have the opportunity to review a product by a company called Enviroklenz. This company is focused on producing a range of products that improve the indoor air quality of people who live with fragrance allergies/sensitivities, MCS, and environmental allergies/sensitivities, as well as anyone concerned about reducing their daily toxin exposure.

Enviroklenz

Since I was buying a new mattress protector, I decided to review the Everyday Odor Eliminator. This product deodorizes and cleans carpets, upholstery, furniture and flooring. The ingredients include water, magnesium oxide, zinc oxide and titanium dioxide. These earth minerals, which are non-toxic, attach to pollutants and either neutralize or destroy them. There are no fragrances or masking agents.

My experience testing the Everyday Odor Eliminator:

Applying the Everyday Odor Eliminator is easy enough – directly apply it to the fabric or flooring, undiluted, or spray with a pump sprayer. I used a spray bottle. Test it on an inconspicuous spot first. A white residue forms after application. Removing the product is a little more difficult. After leaving it for 15 minutes, the liquid can be removed by wet extraction, wet vacuum, spot extraction or carpet shampooing (but don’t use it in place of soap or detergent). I used a shop vacuum. If any white residue remains, it can be removed by brushing, vacuuming, wiping or washing.

The Everyday Odour Eliminator worked well. There wasn’t any remaining “new mattress smell”, meaning a reduction in VOCs emitted after the treatment. The white residue was removed after two vacuuming sessions. Overall, I was happy with this product and I would recommend it for anyone worried about unhealthy odours coming from furniture, carpets or flooring.

I am interested in trying other Enviroklenz products like the laundry enhancer, odor neutralizing granules, and the odor neutralizing hand soap. Although beyond my personal needs, for people severely affected by multiple chemical sensitivities, Enviroklenz also retails a medical grade HEPA filter air purifier. You can find the Everyday Odor Eliminator and other products here. 

Here are a few additional tips for reducing exposure to VOCs in your home[2]:

  • Make sure you get enough fresh, clean air into your home.
  • Increase ventilation by opening windows and doors after you bring new VOC sources into your house, such as new carpets, furniture, or drapes
  • Do not allow smoking in or near your home; smoking is a source of many pollutants, including VOCs.
  • If it is not possible to remove the source of VOCs, reduce exposure by sealing surfaces like particle board or paneling with an impermeable sealant, such as polyurethane varnish or latex paint.
  • Allow gases from new furnishings and building materials to be given off in storage for at least a few weeks before you bring them into your home. If this is not possible, increase the ventilation by opening windows and doors in your home for a few weeks.
  • Buy only enough paints, cleaners and solvents for immediate use to prevent the need to store these products in your home. Follow instructions on the product label. Keep lids on tightly. Store products in a separate room; preferably an outdoor shed, or in areas with proper ventilation.
  • Do not bring recently dry-cleaned clothing into your home if it still has a strong smell. Leave the clothing at the shop, or take it out of the plastic wrapping and hang it in a ventilated area until it is properly dried.

[1] https://www.healthlinkbc.ca/healthlinkbc-files/air-quality-VOCs

[2] https://www.healthlinkbc.ca/healthlinkbc-files/air-quality-VOCs

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

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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!

My Fibromyalgia Story: Learning How to Manage One Day at a Time

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my story

Part I: From Onset to Diagnosis

For Fibromyalgia Awarenss Month, I wanted to share my illness journey here on the the blog. My story starts eight years ago. It wasn’t a climactic beginning. It was just achey low back pain that got worse the longer I sat writing my M.A. thesis. It seemed like a common enough problem to have, except for the fact that I was 23. The nurse told me to take ibuprophen 24/7 and stretch. Spoiler alert: it didn’t work. About a year later, my body gradually began to fall apart, limb by limb. My back pain worsened. My knee gave out. My shoulders become too painful to allow me to type. This is what the doctors call “gradual onset”.

I thought I was losing my mind.

My doctor at the time told me all she could do was suggest Robaxacet. At this point I was starting my PhD. The physical demands of reading and writing 24/7 began to take their toll, exacerbating my pain. Daily functioning on my own became increasingly difficult. My fiancé (now husband), who was living 4 hours away,  had to come every weekend to help me with the chores (groceries, cleaning, etc.) that I could no longer do.  In retrospect, I think the stress of the program and my fear about not being able to meet expectations, as well as not being able to understand what was happening to me, pushed my body past the point of no return. After that I developed more of the classic fibromyalgia symptoms, like insomnia, fatigue and digestive problems.

I was fortunate to have been referred previously to a pain clinic for pelvic pain. This meant I was able to see a pain specialist for my musculoskeletal pain within the same year all my fibro symptoms exploded. In March 2012 he diagnosed me with fibromyalgia.

Part II: Change, Anxiety and Trying to Cope

I was so relieved after my diagnosis that my symptoms had been validated – and given better medication than NSAIDs. I was given tramadol, which reduced my pain, and doxepin, which helped me to sleep. But I still hadn’t absorbed yet what this diagnosis would mean for my future. After my diagnosis, it became obvious that even with treatment, no amount of accommodations would allow me to continue my PhD. I had tried everything I could think of so I could stay – withdrawn from my TA position, put in place disability accommodations to allow me to submit work late, bought expensive adaptive devices and installed voice recognition software.

Feeling like my life was spinning out of control, I started having panic attacks on campus. When the spring term ended, I went back home to move in with my fiancé, and decided to withdraw from the PhD program.

With huge relief, I  went on medical leave from my studies. However, I was immediately confronted by the problem that my days were empty of activity or responsibility. I remember dragging myself out to a local cafe in the afternoons while my fiancé was at work. I wanted the anonymity of a public place, where I could feel ‘normal’ for awhile. It was the only cafe I could go to because the chairs were sensible rather than funky.  Still, I had to bring my back-rest with me, which generated stares from other patrons.  I would cover it with my coat in order to try to hide it from attention. I could no longer type or hold a book due to pain, so I was embarrassed to be sitting at a table without a laptop or reading material, like everyone else. I listened to audiobooks or free online course video lectures instead. I would set up my tablet so that it looked like I was working, rather than listening and staring around. I envied all the other people my age, surrounded by papers, purposely tapping away on their computers. The goals that I had been pursuing were on pause, indefinitely. I grieved for my old life. I pushed myself to go to the cafe, even on days I experience brain-fog or fatigue, because staying home felt like giving up. I spent that year in a state of shock. I was always someone whose identity was wrapped up in my work. I didn’t know who I was anymore.

Part III: Learning Self-Care Skills to Manage my Fibro

Gradually I started trying to put the pieces back together. When I got diagnosed with my chronic condition all the information about exercise seemed so out of touch with the reality of my life. At the time, I had trouble bending forward, which meant I needed help with basic tasks like shaving my legs. I had trouble getting up or down from sitting on the floor. I rarely took the stairs and had trouble walking or standing for longer than ten minutes. Since I was already tired, sore and busy then I wasn’t going to be able to go to the gym. I couldn’t afford a personal trainer. With my back pain there was no way I could participate in the group yoga classes I used to take in university. Even more frustrating was the fact that all the research I came across proved how beneficial exercise is to health. I knew that I should exercise but I felt like I couldn’t.

I found two at-home instructional DVDs in yoga/pilates and tai chi that I was actually able to do, which helped me to improve my physical functioning. I started seeing a physiotherapist who put together a thorough stretching routine for me to do daily. Without doubt, this is the single most effective thing I tried to improve my health and well-being. My pain decreased and my quality of life increased.

I was fortunate to be referred to a Cognitive Behavioural Therapy program by my pain clinic. I found participating in the course very valuable for learning tools to  manage the negative thoughts and feelings that accompanied my fibromyalgia. One of the core parts of the program was 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.” I learned that I tend to think in “all or nothing” terms – a cognitive distortion. I would say to myself things like “if I can no longer pursue my career, I am a failure in life”. In CBT, I learned to challenge these distortions with the reality of each situation. For example, in response to the statement above, I challenged it by saying “While being in pain means I have to do less, that does not reflect on my personal worth, nor does it mean what I can do is meaningless”.

I was also referred for a Mindfulness Based Stress Reduction course by the pain clinic. In this course, I learned to be more mindful of the present moment. I learned that worrying about the future or dwelling on the past, only makes me suffer more in the present.  It’s better for my quality of life if I return my focus to the next best thing I can do for myself in this moment. Critically, the MBSR course reminded me that, even with pain and flare-ups, there are small moments of enjoyment, if I only stop and notice them – the taste of a good meal, sharing a hug, a sunny day, or a favourite hobby. One of the key lessons I learned through mindfulness is that my thoughts, feelings and sensations, no matter how difficult, are changeable, like the weather. When I hold on to the fact that even my darkest moods will eventually lift, I feel calmer and more in control.

Part IV: Coping with Relapse

In 2014 I started a part time distance program for social work and completed the first year. But it wasn’t to be. I got a cold over the 2015 holidays and suffered the worst fatigue and brain fog I’d ever known. At the time I was just starting to look for a social work practicum placement. There was no way I could commit to working 15 hours a week out of my home. For the second time I had to withdraw from school.

I felt completely overwhelmed at the outset of my fatigue relapse last year.  First, there was the emotional reaction to a new situation: anxiety about whether it was here to stay, frustration that life was about to get more difficult, and grief at the prospect of losing what abilities I still had.  Secondly, there was the practical challenge of figuring out how I would cope, like what new treatment options to try or how to manage my daily routines and responsibilities.  Lastly, I faced the impact of a relapse on my relationships, such as the increased caregiver burden on my partner, and feeling less able to be present with family and friends.

My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life. I spent that winter using the time to learn new things. I taught myself calligraphy, I read, and I wrote more often on my blog.

Part V: Moving Forward, Maintaining Balance

That spring, my energy began to slowly improve. I found a kind of peace in accepting that whatever I do next, it needs to allow me to work with my body and not against it. I think that’s why blogging and writing has ‘clicked’ more for me now than when I first started. I have found that grieving for your old life and finding acceptance in your new life is an ongoing process, not a one-and-done kind of thing.

Being at home allows me to respond to each day as it is. I’m fortunate to be able to stay at home. I sleep in late because without ten hours I am a brain-fogged zombie. I can’t type because of shoulder pain but I can use speech recognition software. I stretch, do gentle exercise, walk, and make sure I move around during the day. I balance my activities with self-care, which is how I am able live more fully, even with fibromyalgia.

In the summer of 2015 I felt well enough to finally plan my (fibro-friendly) wedding. On a beautiful August day I married the man I’d fallen madly in love with eight years earlier and who has been my saving grace through this whole journey.  He didn’t blink when it came to assuming care-giving responsibilities – he does the housework, the laundry and the dishes on top of his full time job. He is always understanding when we have to change plans or just stay at home. Most of all he is so supportive. He celebrates the small accomplishments of my life without ever making me feel ‘less than’.

I’m grateful for how I’ve grown through encountering all of the challenges that come with chronic illness. Learning mindfulness meditation and focusing on the present has given me a more helpful perspective. I’m a happier person when I remember to ‘stop and smell the roses’. I feel like I’ve become more patient, more adaptable, more assertive and more accepting than I was before fibromyalgia.  I’m proud of making it through every day, especially on the tough days where no amount of self-care stops your symptoms, and you just have to hold on to the knowledge that it will pass. Everyone living with chronic illness should be proud of the strength they have developed to manage daily life.

My new motto is something I read shortly after my diagnosis –  “It’s not the life you imagined, but it’s a good life nonetheless.” It’s something I hope for myself and everyone who lives with fibromyalgia.

National-Fibromyalgia-Awareness-Day-May-12

A Tale of Two Types of Laparoscopic Surgery to Treat Endometriosis

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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 Gynecology. http://www.sciencedirect.com/science/article/pii/S1553465017302637

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

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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/