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)

Could a Treatment for Herpes also be Effective for Treating Fibromyalgia?

Could a treatment for herpes also be effective for treating fibromyalgia?A recent study investigated whether it would be effective to  treat fibromyalgia patients with an anti-viral and anti-inflammatory drug combination that is normally used to treat the herpes virus (cold sores or genital herpes). The anti-viral drug used in this study also treats the shingles virus (which additionally causes chickenpox). Specifically, researchers tested a famciclovir + celecoxib drug combination called IMC-1. The study was based on the hypothesis that life stressors could re-activate latent viral infections  (viral infections from earlier in life that become dormant), which in turn cause fibromyalgia to develop. This hypothesis is based on anecdotal evidence of patients who develop fibromyalgia after experiencing infections and/or periods of stress. Does that sound familiar?

The results of this double-blind, placebo-controlled study were positive: participants receiving the anti-virals had significantly less pain and fatigue compared to participants who received a placebo. Encouragingly, IMC-1 was well tolerated by study participants, with few side-effects. Researchers concluded that the effectiveness of the anti-viral drugs suggests that the herpes virus may play a role in the development of fibromyalgia for some patients. Interestingly, this conclusion was based on the efficacy of the drug rather than testing the study participants for the herpes virus. I wonder whether this line of investigation could be expanded to include other potential viral triggers.

This hypothesis resonates with me because in the months before I developed fibromyalgia, I had a mumps infection, which I always attributed as a trigger for the onset of my fibromyalgia. In addition, I have had shingles, which the anti-viral used in the study also treats. This is a fascinating new area of research that will hopefully provide more answers and solutions to the treatment of fibromyalgia. In the meantime, if you have the herpes virus (or other significant viral infection) and fibromyalgia, I recommend taking this study to your doctor to see if IMC-1 might be an effective option for you!

Reference:

Pridgen, W. et al. (2017). A famciclovir + celecoxib combination treatment is safe and efficacious in the treatment of fibromyalgia. J. Pain Res., 10, 451-460. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5328426/

Beginning Again: Living with the Ups and Downs of Life with Chronic Illness

Originally published on ProHealth.com

Beginning Again: Living with the Ups and Downs of Life with Chronic IllnessI’m sitting here at home, in the middle of the afternoon, still in my pyjamas.  All I have accomplished today is breakfast and coffee.  Over the past, week my schedule has gone completely off-track.  It started with a significant increase in my endometriosis pain, then worsening insomnia/daytime fatigue, and finally, my neck and upper back decided to get in on the fun by seizing up.  This runaway train was accelerated by lack of exercise, increased anxiety and cabin fever.

Watching my goals, plans, and self-care routines careen out of control is sometimes harder for me to accept the symptoms that come with a flare-up.  Maybe it’s because I have always been a bit of a control freak, but the sense of helplessness, frustration and self-doubt that accompanies this situation is one of the most difficult aspects of living with fibromyalgia for me. This time, as I was venting about how it felt like my daily life had come tumbling down like a house of cards, a question occurred to me: What if the problem isn’t a failure to control or manage my schedule during a flare-up, but a failure to understand that living with chronic illness inevitably involves ups and downs?

Beginning Again: Living with the Ups and Downs of Life with Chronic Illness

The practice of mindfulness meditation offers some answers to this question.  Renowned mindfulness teacher Sharon Salzberg writes that, in contrast to our conditioned belief that self-blame and fear of failure help us succeed, “ease in letting go and kindness in starting over is a lot more effective”.[1]  Repeatedly focusing on negative self-judgment and regret is draining, discouraging and ultimately unsustainable.  Meditation can help us practice being compassionate and non-judgemental towards ourselves, helping us to let go and begin again when things don’t go our way. During meditation, the aim is to focus our attention in the present moment, by concentrating on breathing, scanning the body, or repeating a mantra. Inevitably, we lose focus and become distracted by thoughts, worries, plans or emotions. When we realize this has happened, we gently bring our awareness back to the present moment – this breath, this step, this repetition.

The moment we realize our mind has wandered is the crucial moment of the practice. We have a choice: do we berate ourselves for ‘failing’ and force our attention back to the task at hand? Or do we react with kindness towards ourselves and patiently return our attention to the present moment? Salzberg explains “The invitation to begin again (and again and again) that meditation affords is an invitation to the practice of self-compassion – to heal through letting go rather than harming ourselves with cycles of self-doubt, judgment, and criticism.” From this point of view, meditation is like a playing field where I can train for how to cope with the ups and downs of life with chronic illness. I have realized that I can’t control these fluctuations, but I can change how I relate to them. Instead of reacting with self-recrimination and a sense of helplessness, I can respond with compassion and focus my attention on beginning again in this moment.

There is something incredibly hopeful about knowing that “Always, we begin again”, as St. Benedict wrote. It can also be daunting to think that you will have to begin again…and again…and again.  Recently, I was introduced to the concept of tapas in yoga philosophy.  The word is derived from the Sanskrit verb “to burn” and is often translated as “fiery discipline.”[2] Nobody other than those who live with chronic illness can understand the degree of strength it takes to wake up and try again in the face of all our daily challenges.  We are experts in tapas without even knowing it!  I believe that we should direct the fiery discipline that living with chronic illness cultivates in us towards starting over in each moment – instead of cracking the whip and pushing ourselves harder. If we are fiercely dedicated to beginning anew after each setback, then we can change our relationship to the difficult experiences we encounter.

For me, the unpredictability of living with fibromyalgia is one of the hardest parts. Life with chronic illness is an extreme form of constant uncertainty. As people, we tend to prefer stability to uncertainty. Pema Chodron, a Buddhist nun and author, calls this the “fundamental ambiguity of being human” – the longing for predictability and permanence despite the reality that life means constant change (in other words – “this too shall pass”).[3] Chodron argues that resisting this reality leads to suffering and accepting it means freedom. Opening ourselves to the dynamic, changing nature of our experiences releases us from expectations that things should be this way or that way.

For example,  When we try to run away from difficult feelings or hold on to pleasant feelings, we only create more challenges for ourselves.  I feel a sense of freedom by accepting that living with chronic illness means inevitably fluctuating between better and worse days.  Struggling against this by trying to control for every potential outcome is exhausting.  Blaming myself for failing after every flare is depressing.  This doesn’t mean practicing self-care or pacing is pointless!  It just means that I accept that I can’t control every situation and I am not responsible for every setback.

Here is my new intention. Tomorrow, or the next day, or in a few weeks, I’ll have another flare up.  I will try to understand this as part of the natural cycle of living with my illness. I will be compassionate towards myself when my schedule goes off track.  I will focus my attention on the present moment and the next best thing I can do for myself.  I will draw on the tapas that I have cultivated for strength. And I will begin again.

[1] Salzberg, S. (2015). The fractal moment: An invitation to begin again. On Being. Retrieved Nov 10, 2016 from http://www.onbeing.org/blog/the-fractal-moment-an-invitation-to-begin-again/7589

[2] Lasater, J. (2007, Aug. 28). Cultivate your connections. Yoga Journal. Retrieved Nov 10, 2016 from http://www.yogajournal.com/article/philosophy/cultivate-your-connections/

[3] Chodron, P. (2012). The fundamental ambiguity of being human. Tricycle Magazine. Retrieved Nov 10, 2016 from http://tricycle.org/magazine/fundamental-ambiguity-being-human/

When the Forecast Calls for Fibro Fog: PillDrill Helps You Remember Your Medications

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 am an absent minded person.  I should have a beeper on my glasses, my phone and probably my mind, to help me find where they wander off to.  Fibro fog has made my memory even worse. Forgetting where you put your cup of coffee is an inconvenience, but forgetting your medication can be dangerous.  As you can imagine, I sometimes forget whether I took a prescription or accidentally take two doses.  I haven’t  found a reliable solution.  Using a medication reminder app is just another thing to forget. The PillDrill is different.  It is a unique medication tracking system that has actually worked for me.

pilldrill

What is it?  The PillDrill hub looks like a digital clock (which it is, too).  When it is time to take your medication, it flashes, beeps and shows the name of the medication(s) you have programmed it remind you about.  These reminder features are customizable, in case you don’t want it to make noise or to flash. The PillDrill has a scanning function. The device comes with scanning tags that you attach to your pill bottles or a weekly pill strip provided with your hub.  Once you have taken your medication, you scan it on the hub by touching the tag to the scanning button and it logs your dose as taken!  The PillDrill is managed using an app from your mobile device or computer.  It syncs using your wifi network.  The app is used to create and edit your medication schedule, get reminders, and log doses on the go.  You can set it up so that a loved one can also get notifications about your medication adherence.  The PillDrill comes with a “mood cube” that lets you track how you’re feeling during the day so you can monitor your daily health patterns.

Benefits: I have the hub on a side table in my living room. The flashing light ensures that I remember it is time to take my medications. On the go, the app notifications remind me on my phone. Scanning each medication has made sure I don’t accidentally take a second dose. Plus it’s kind of fun to scan the pill bottle! It’s helpful to have a record of when I have taken each medication for reference. Since I started using the PIllDrill, I haven’t forgotten a dose or taken a double dose.  In addition,  the device itself is aesthetically pleasing, and I like the teal and white colors.

Cons: I did face a few challenges using the PillDrill. I chose to put the scanning tags on my pill bottles rather than the weekly pill strip. The problem is that, once the bottle was finished, I didn’t have another tag for the new bottle. You are supplied with only about 25 tags. If I had used the weekly pill strip provided, I could have reused the tags (because they go on the strip rather than the pill bottle). Alternatively, PillDrill provides tag holders, which are attached to a pill bottle with an elastic band and can be used for successive pill bottles. It would have been great if more than 10 tag holders  had been provided so that I could have used them for all my supplements/medications. If you run out of tags, you need to purchase more from the PillDrill website. I recommend attaching the scanning tags to the weekly pill strip and using the tag holders.

When I put the tag on the lid of a supplement bottle that was made with metal rather than plastic, it didn’t scan. This can be avoided using a tag holder, but it would have been helpful to have been warned about this in the product help guide.

Finally, when I was attempting to sync the hub to my wifi network using the PillDrill app on my android phone, it was not effective. When I used my iPad, it worked easily. Having more troubleshooting instructions in the help guide would have been useful for this problem.

Final thoughts: The bottom line is that the PillDrill is effective at helping you remember to stick to your medication schedule and is a useful product for anyone with chronic illness who takes a number of pills each day.

The PillDrill is available here.

Should You Try Yoga as a Treatment for Your Fibromyalgia?

Should you try yoga as a treatment for your fibromyalgia?Yoga. It’s everywhere. From passers-by on the sidewalk toting yoga mats, to health headlines in the media, it seems like yoga has saturated the mainstream. But if you live with a chronic condition, like fibromyalgia (FM), you may be unaware of what twisting yourself into a pretzel has do with managing your daily symptoms. In fact, you may be unaware that yoga isn’t about twisting yourself into a pretzel at all.

Research is clearly on the side of trying yoga to manage your fibromyalgia symptoms. The Oregon Health and Science University published a study in 2010 that compared the impact of an eight week yoga program on FM patients against a control group who received standard FM treatment. Researchers found that “pain was reduced in the yoga group by an average of 24 percent, fatigue by 30 percent and depression by 42 percent”.

So what is yoga actually all about? And how can it help you manage your chronic condition?  To answer these questions, I asked my good friend and yoga therapist, Kathrin Gottwald, who also blogs at Soulicious Moments.  Kathrin explains that “A carefully tailored yoga practice can not only lead to more flexibility and muscle tone, but also more awareness and potentially a different way of experiencing yourself and life.” This mind-body aspect of yoga exercise is at the core of what makes it effective. “Yoga means union,” explains Kathrin, “it is a practice to establish a feeling of connection to ourselves, others and the world around us.”

Should you try yoga as a treatment for your fibromyalgia?

Before my diagnosis, I was a beginner yoga student. Although I was never a very athletic person, I found I craved my weekly class. Week to week, I noticed that my strength, balance and flexibility improved. I enjoyed being in my body, rather than in my head, for those 60 minutes. After my diagnosis, I assumed by yoga days were over. I could barely sit on the floor, after all!

Eventually,  I attended a pain management class, which included a yoga component led by a teacher who herself had fibromyalgia. I began to include certain yoga poses into my daily stretching routine. Finally, I found a DVD with a yoga routine designed specifically for FM (see below). The genius part of the program is that they show each pose at 3 levels of ability, so you can customize your program based on your daily level of pain. I try to do this routine twice a week. I have the same benefits as before, even though my yoga routine is much gentler and shorter than before: feeling a positive connection to my body, feeling more present, and feeling my flexibility, balance and strength improve.

Beyond physical benefits, yoga is about developing body awareness and mental presence. Kathrin elaborates: “Yoga is not about perfecting the poses or contorting yourself into difficult positions, but it is all about how you relate to yourself and that which you encounter and experience in life. Especially for people living with chronic conditions it can be very beneficial to find skillful ways of relating to themselves and their illness.”

I also include a breathing practice three to four times a week along with my yoga routine. This is also an important part of yoga. As Kathrin notes, “In yoga the breath is considered our life force. The practice is to consciously move this energy within you and use it skilfully. Observing the breath and resting your awareness on your breath is already a yoga practice in itself.” Even if you are having a flare, and all you can do is breathe, you can still practice yoga. This practice has to do with sitting or lying quietly and focusing on the breath. When thoughts or sensations distract you, as they inevitably will, you gently bring your attention back to the breath as soon as you realize you have gotten carried away.

I find yoga helps me ‘practice’ being in the here and now, helps me to know the contents of my own mind and heart better, and increases my awareness of my body, so I can check in with what I am able to do day to day. In Kathrin’s words, “Yoga practice starts with being. We do not need to constantly strive to be different and improve. When we practice, we are just striving to be more fully ourselves.”

So if you want to start a yoga practice, where do you begin? You can work one-on-one with a yoga therapist or teacher. Kathrin explains that “in yoga therapy you work with a specific intention of finding more skilful ways of relating to yourself and your condition. This is a very personal and individual path. The yoga therapist will develop a targeted practice for you, which will be individually adapted as needed”.

More and more studios are beginning to offer targeted classes, like yoga for back pain or chair yoga, which you may be able to join. I definitely recommend asking if you can observe a class before joining, to ensure it is at your level and uses a therapeutic approach.

If this is out of your price range, several resources you can consider are listed below. These include instructional DVDs or online routines you can do at home. This is usually better for people with some yoga experience, to avoid injury.  However you start, I hope you find greater presence, connection, and health!

 

Real Life Round-up: Bloggers Share What It’s Really Like to Live with a Chronic Condition

REAL LIFE ROUND-UP: BLOGGERS SHARE WHAT IT'S REALLY LIKE TO LIVE WITH A CHRONIC CONDITIONLife with a chronic condition is a kind of quiet extreme. Often, you’ll find us resting at home, surrounded by blankets, pillows, heating pads, tea cups, pill bottles, furry friends and a tablet or tv. It may seem like a quiet kind of life, but it’s actually a constant breath-taking roller-coaster. Internally, physical symptoms of pain, fatigue, and zillion other things are in a constant state of flux. Emotionally, we react to the confusion in our bodies and the dramatic changes to our lives. An incredible strength is forged by waking up each day and trying again to not only survive, but live.

This past week, my endometriosis pain continued to worsen, with weeks yet to go on my post-laparoscopy consult. My back spasmed. I had a few dark 3 am moments of wondering if I will ever find answers or solutions. At the same time, I had a really freeing realization about my internal critic. I’m always after myself to be more productive, equating self-worth to overachieving. I listened to a meditation about radical self-acceptance. What if your internal critic became your chief encourager? I’m trying to be much more mindful of those internal criticisms- and challenging my internal critic to be kinder and more encouraging. It feels like a load off my back. Every time I grow as person because of my chronic illness experiences, it feels like a silver lining to all the difficulties.

Here is a round-up of fantastic blog posts about real life with chronic conditions – the unfiltered truth about the challenges of this life and the ways that these bloggers have found to live better despite the obstacles!

REAL LIFE ROUND-UP: BLOGGERS SHARE WHAT IT'S REALLY LIKE TO LIVE WITH A CHRONIC CONDITION

Brainless Blogger Understanding and Being There is all about the misconceptions normal folks have about chronic pain but also encourages #spoonies to be patient with their family/friends as long as they try to be there for us & to understand our reality.

Color me lyme Words for the Chronically Ill Patience. Never Give Up! Believe. This post talks about how these affirming words can help on the illness journey. “This doesn’t mean we should corral our drive or initiative…[but] there are times when we have no choice but to let PATIENCE – and faith – take the lead.   (Easier said than done, right?!)”

Damsel in a dress. Why I talk openly about being sick. A powerful and humorous advocacy piece on challenging the stigma of invisible illness. “I sat back and realized that my illness has taken a lot from me, but there is one thing it has given me: a voice. I knew I had to unapologetically talk about my illness because being sick isn’t something I should have to apologize for.”

Invisible Warrior Minding the Pain A thoughtful post on using meditation to manage pain, especially if the pain is always with you. In order to break the pain cycle, we need to learn how to understand and work with the pain and our reactions to it. I really like the list of guided meditations at the end, using the awesome Insight Timer app

Let’s Feel Better The Determined Weeper A funny take on the emotional and physical side-effects of changing medications. I completely relate to being in a “chemical stew” as you come off a medication in order to try to get pregnant.

Being Lydia Is it all in my head Ever wished a test result would be positive? Then you probably have a chronic illness that constantly tests negative…over and over and over in your search for answers.

 

 

 

 

The Mental Torture of Medical Waiting Lists (& How I Learned to Cope)

The Mental Torture of Medical Waiting ListsWaiting.  Before this past year, I would have described waiting as boring, frustrating and draining.  Then I spent 12 months in pain, waiting for a specialist appointment, waiting for tests, and waiting for surgery.  After all that, I’m still waiting for an answer and a solution to my symptoms.  Now I would describe waiting as suffocating, crazy-making and excruciating.  Waiting can become a form of mental torture when your health, daily functioning and quality of life are at the mercy of hospital bureaucrats.

Exactly one year ago this month, I went to my family doctor because of an increase in pelvic pain.  Not only were my periods more painful, but I was experiencing debilitating cramp-like pain more days of the month then not.  My family doctor referred me to my OB-GYN for consultation at Mount Sinai Hospital in Toronto.  I had to wait three months just for an appointment date.  Then, the appointment was rescheduled twice. The office assistant would not call me back, even to give me a rough estimate for when a makeup appointment might be rescheduled.  At one point I even broke down on the phone while leaving a message for the admin assistant. More than anything else, I felt helpless in the face of this mysterious pain that was making my day-to-day life so difficult, with no ability to control the outcome.

Finally, 5 months after the initial referral, I saw the specialist.  We decided a laparoscopy was the best course of action for diagnosis and treatment of suspected endometriosis.  Her assistant told me to call back in two months in order to book a surgery date.  When I called, she told me to call back in another two months.  I called back and left a message.  No reply.  Two weeks later, another message.  No reply.  During this time my pain had spiked significantly and was now difficult to manage, even with multiple pain medications.

I felt trapped.  If I tried to see a different doctor, it would take months for an initial appointment.  If I tried to even make an appointment with the same doctor, prior to the surgery, it would take months.  The pain was making it difficult to socialize, to accomplish day to day activities, to exercise, or to even go on a date with my husband.  I felt angry and anxious.  My mental health was deteriorating.

I’m not alone in this experience. Researchers have found the waiting period can significantly impact the health of patients.  Studies have consistently found negative effects in patients waiting for test results, ranging from adverse effects on recovery times, wound healing times, reduced immune defences, and worsening of side effects from medications.  Researchers hypothesize that these effects may be due to anxiety over test results, which is supported by the finding that waiting patients have increased levels of the stress hormone cortisol. Similar impacts have been seen in chronic pain patients waiting for treatment. The study concluded that waiting for longer than six months caused a reduction in quality of life and psychological wellbeing.

Finally, finally, I got the date for the surgery, two weeks beforehand.  It went smoothly enough.  They found and removed endometriosis lesions.  I struggled through the initial recovery.  One week later, the pelvic pain came back.  Same place, same feeling, same pattern.  Perhaps it is part of recovery, or perhaps the surgery wasn’t the solution.  Now, I have to make another appointment and – you guessed it –wait.

How you react to the stress of waiting for diagnosis or a test result may be partly determined by your personality characteristics.  One study found that a high need for closure -something I can definitely relate to- increases anxiety during the waiting period.  In contrast, if you have a high tolerance for uncertainty, you’re less likely to be anxious.  Do you tend to assume the worst?  This characteristic, which researchers called “defensive pessimism,” also increased waiting anxiety.  If you tend to assume things will work out (“dispositional optimism”), then you are less likely to experience anxiety. Constantly ruminating on the outcome of the test result during the waiting period also increases anxiety.

Interrupt the Flow of Negative Self-Talk

So what can you do you if you have certain characteristics that may increase your stress levels during a waiting period for a diagnosis, procedure or test result?  Firstly, I learned that it is important to interrupt constantly ruminating on the upcoming medical appointment. Try to be aware of your thought patterns and self-talk during this stressful period.  I try to regularly check-in with myself during the day.  If you notice that you are dwelling on the frustration of waiting, acknowledge it.  Then make a deliberate choice to return yourself to the present.  A few minutes of deep breathing or meditation may help to relax you and create space between you and these stressful thoughts.

Distract Your Mind (or, Your new excuse for binge-watching Netflix)

Distraction is another valuable tool.  Decide to focus on something that will occupy your mind rather than ruminating on a positive test result or unwelcome diagnosis.  This might be a good time to re- watch your favorite comedies, because who doesn’t need a good laugh?

Challenge Self-Judgement

When I find myself thinking about how long I have to wait for my next doctor’s appointment, or my frustration at the lack of answers, I find it really helpful to say to myself “OK, here are those thoughts again”.  I’m trying to be accepting of these thoughts, because it’s only natural to be frustrated and stressed in this situation.  But if there’s nothing I can do about it here and now, then I try to refocus my attention on whatever I have going on in the moment.

It’s a daily struggle to cope with the mental torture of the medical waiting list. Negative emotions are natural and experiencing them is not a failure to manage your feelings. That’s a lesson I keep re-learning. I try to see it as a question of what is the most helpful response to the negative emotions, rather than getting frustrated with myself for feeling down in the first place.

Self-Care, Self-Care, Self-Care

It’s very important to practice self-care and stress management during this time.  Activities that have been proven to reduce anxiety include yoga, exercise, meditation, guided visualization, walking in nature, journaling and deep breathing.  Personally I find regular meditation really helpful for my mental sanity.  During this time, it’s helpful to refocus on the fundamentals of a healthy lifestyle, like trying to get enough sleep, eating nutritious food and connecting with your social support system.

Here are few resources for staying present and de-stressing:

References:

Hoffman, J. (2012). The anxiety of waiting for test results. New York Times. Retrieved 10 Feb. 2017 from https://well.blogs.nytimes.com/2012/07/23/the-anxiety-of-waiting-for-test-results/

Lynch, M. et al. (2008). A systematic review of the effect of waiting for treatment for chronic pain. PAIN 136(1-2): 97-116. Retrieved 10 Feb. 2017 from http://www.sciencedirect.com/science/article/pii/S0304395907003442.

Markman, A. (2014). Waiting is the hardest part, but you can make it easier. Psych Today. Retrieved 10 Feb. 2017 from http://www.psychologytoday.com/blog/ulterior-motives/201407/the-waiting-is-the-hardest-part-you-can-make-it-easier

“If It Was Me, I Would Just Give Up”: How Not to Compliment Someone Living with Chronic Illness

How Not to Compliment Someone Living with Chronic Illness

“You’re so strong. If it was me, I would just give up”

If you live with a chronic illness, you’ve heard this type of “compliment” over and over.  A well-intentioned friend, family member or colleague shakes their head at your everyday challenges, and says “I don’t know how you do it; if it was me, I would just give up and lie in bed all day“.  My stomach always twists when I hear these words.  I know it is meant as praise, to recognize the strength it takes to get through each day in spite of all the symptoms of chronic illness.  But if you say this comment to someone living with chronic illness, know that they will not feel flattered or pleased. When you express these sentiments, what you are communicating is that you don’t understand the nature of their daily struggle or how that comment invalidates their sense of worth. If you are a spoonie, I hope this post helps you find your own words to enlighten your friend or family member on how to compliment you. If you are someone who cares about a spoonie, I hope this might help you find a better way to express your admiration and encouragement.

“Where do you find the strength? I would just quit even trying”

 I frequently see social media posts by frustrated spoonies (people who live with a chronic illness), venting about how this type of comment makes them feel. It seems to be the most common way people try to praise spoonies. I think I am a stronger and wiser person after my experiences living with fibromyalgia. If my friends or family notice that change and want to recognize that fact, I wish they would say it as a positive about me, rather than frame it as a negative comparison on themselves. For example, I was discussing with my friend that I think I am coping with a recent setback in a healthier and more positive way than during the first years of my illness. A positive compliment from her would be something like “I think it’s amazing how you are just taking it one day at a time and staying positive even though I can see how difficult the situation is”. A negative comparison on herself would be “if it was me, I would just be wondering why the universe is conspiring against me – I could never see this in a positive light the way you do, it’s amazing.”

“It’s amazing that you even get out of bed every morning”

I’ve always struggled to respond when someone says something like this to me.  If I express a negative reaction, I’m afraid my friend will reply “I don’t understand, all I’m trying to say is that I think you’re great”. I never know how to put into words why, despite that intention, it makes me feel anything but great. I’m going to try to explain it here.

The simple reason that I don’t just give up and lie in bed all day is because that’s not a real option.  I don’t have the luxury.  It’s not a meaningful choice when you live with a condition that has no cure. This comment upsets me because it ignores the reality that I don’t choose to struggle through each day, I am forced to. The reason I don’t lie in bed all day (besides the fact that I would find it really uncomfortable) is not that I’m especially strong or heroic.  It’s because lying in bed all day would be mean giving up on surviving. At some point, you have to make a meal, take your kid to school, or have a shower – and you’re going to want to do that with the least amount of discomfort possible. Living necessarily means having to fight through all of my daily struggles.  That fighting spirit and strength, for me, is just the nature of living day to day.  I know perfectly well that if that same healthy friend who says “I would just give up” actually did develop a chronic illness, they would wake up every morning and try again, too.  Just like we all do.  Because we have to. I like to think that it’s human nature to survive, to put one foot in front of the other, and to keep on keeping on.

“I couldn’t face it day after day, I don’t know where you find the willpower to just get up and try again”

Beyond this, the main response most people living with chronic illness have to this form of praise is that they find it invalidating. While a life with an invisible illness or disability is challenging, the funny thing is, we still want to live it.  We still share love, have passions, make contributions, make art, and have dreams. Our lives are worthwhile and meaningful.  They are worth living.  Even with all the difficulties.  But when the main reaction to seeing what a day in the life of a person with chronic illness looks like is to say “I would just give up,” it invalidates the worth of living that life. It definitely is not a compliment! One person on social media wrote something like “so what, you think my life is so terrible that I should just curl up and die? thanks!” When I remember being healthy and non-disabled, I know that I was always amazed by people who were sick or handicapped but still vital and active-  and wonder whether I would be able to enjoy my life if I was in their situation. It’s a common reaction, but I think one that’s unhelpful to share. Instead, I hope the friends and families of spoonies will try to frame their compliments as positives about the person they care about, without any negative reference to themselves. Here are some more examples:

“I really admire the strength you show in trying all of these treatment options when I can see it isn’t easy”

“I think you showed a lot of grace under pressure when you experienced that setback”

“It took a lot of guts to pursue something you’re passionate about despite all of the recent challenges”

Mind Games: How I Cope During a Chronic Illness Relapse (Part 2)

 

Coping with chronic illness and fibromyalgia relapse using mindfulness and other mental strategiesIn my last post, I wrote about my fatigue relapse last winter and my present pain progression this winter. My aim in writing these two posts is to share how I cope with illness setbacks, using ‘mind games’, in the hope they help someone else experiencing a relapse.

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. In Part I, I discussed 1) challenging negative patterns of thinking and 2) cultivating presence.

3) Take in the Good: Are you more likely to remember compliments or criticism?  If you’re like most people, you pick the latter.  That is because the human brain has a built in “negativity bias”, which allows us to learn from and protect ourselves from bad experiences.[i] Unfortunately, it can also make us anxious, irritable and depressed.  One way to rewire your brain so that it takes positive experiences into account, as well as negative, is to be intentional about what Rick Hanson calls “taking in the good”.[ii] This is akin to the old adage to “stop and smell the roses”. The first step is to be mindful of positive moments (to notice the roses) – the taste of a good meal, sharing a laugh with a coworker or hugging your partner. Practicing mindfulness meditation can help with this part, but you can also just start with the intention to take in the good today.  Secondly, pause for 20-30 seconds and focus your attention on enjoying the experience, instead of moving on to the next thing (focus on how pleasant the fragrance of the roses is). Finally, let the positive experience sink into you.  You can do this by visualizing a warm feeling spreading through your torso or by intellectually recognizing that by doing this exercise you’re literally rewiring your brain to tilt towards positive experiences.  If you do this several times a day, you can change the neural pathways in your brain so that positive experiences are ‘registered’ more in your overall outlook on the day.  This practice has been really helpful for my mental and emotional health while I deal of the challenges of chronic illness, especially during a relapse.

4) Pursue an Enjoyable Hobby: After my fatigue relapse, I withdrew from school because it was too demanding. With time on my hands, I decided I wanted to learn something creative. I looked for a hobby that wouldn’t hurt my painful upper back, and eventually settled on modern calligraphy. Last winter, calligraphy practice was often the one activity I did on a daily basis. Seeing my improvement as I wrote out the letters was a bright spot during that difficult period. This time around, I am learning how to digitize my calligraphy, with the hope of opening an Etsy shop sometime next year. Having a sense of personal accomplishment means so much to my mental wellbeing. Dr. Caudill notes that “Some patients feel so bad about their pain and their lack of a ‘productive life’ that they … feel they don’t deserve any pleasure” (2002, p. 83).[iii] Not only is it ok to pursue enjoyable activities, it’s actually critical for your mental health and stress management, which are important components of any treatment regimen. I can’t encourage fellow spoonies enough to find a hobby or creative outlet to focus on during a relapse or flare. Other activities I enjoy include online learning courses (free!) and writing/blogging. In order to get the most out of an enjoyable hobby, be present during these activites. Take in the good moments when you finish a project or learn a new skill. And focus on recognizing what you were able to do today, rather than what you weren’t. Negative thinking habits aren’t changed more easily than any other habit, but routinely practicing positive mental habits is a powerful way to improve your quality of life during a relapse.

[i] http://www.rickhanson.net/take-in-the-good/

[ii] http://www.rickhanson.net/take-in-the-good/

[iii] Margaret Caudill. (2002). Managing Pain Before it Manages You, NY:     Guilford Press.

Mind Games: How I Cope During a Chronic Illness Relapse (Part 1)

Coping with a chronic illness by making smart choices. Focus on what you can enjoy, do and learn, in the now.

Around the holidays last year, I got a bad cold which left me exhausted. Of course, I assumed that once I got better, my (limited) energy would return. It didn’t. I spent months in a state of brain fog and fatigue. By the mid spring, the relapse gradually began to ebb, although I still haven’t returned to pre-virus levels. This holiday season, my endometriosis pain has increased substantially. Most likely, it is a progression of the condition. As I wait for a laparoscopy, I worry about how I will cope with this ‘new normal’, which is interfering with my sleep and restricting my movement to the length of my heating pad cord!

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. Now that I’m facing a similar situation, yet again, I wanted to write them out for myself –  I hope they may help someone else out there too. 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.

1) Challenge Patterns of Negative Thinking: About a year after my diagnosis, I participated in a Cognitive Behavioural Therapy program for pain management. 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] For example, if you think in “all or nothing” terms – a cognitive distortion – you might believe “if I can no longer pursue my career, I am a failure” (click here for a list of other cognitive distortions). A common belief among the participants in the group (me included) was: “Since I don’t work during the day, all I do is sit around the house wasting time”. The facilitator asked us to challenge this belief by making a list of all our daily activities. I was surprised to have a long list that included, for example, preparing my meals, going for a walk, reading a book, writing a blog post, doing my strengthening exercises, etc. I actually do quite a few things each day, and I rarely waste my time. Now I try to identify when a negative thought is actually just a distortion and then challenge it with the reality of the given situation.

2) Be Present: One of the most powerful tools that has helped me to cope with my illness setbacks is practicing mindfulness, usually defined as “non-judgemental, present moment awareness”.  I attended a Mindfulness-Based Stress Reduction course at my pain clinic that introduced me to how cultivating presence could help me manage my pain.  Much of our anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in front of us at this moment in time.  Through mindfulness meditation, I have become better at recognizing when my mind as dwelling on the past or projecting into the future, and bringing my attention back to the present.  For example, I’m currently waiting on a laparoscopy to diagnose whether I have endometriosis and to reduce my pain levels.  I’m worried about what it will mean if they find out I do not have endometriosis, as well as whether the procedure will relieve my pain. Just thinking about it makes me anxious and upset.  However, I won’t know anything until after the procedure, which is several months away.  Worrying about it now only makes me suffer more.  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.

[i] http://psychcentral.com/lib/15-common-cognitive-distortions/