Dear Dr: No, A Number Between 0-10 Does Not Measure My Pain Accurately

At most doctor appointments, I’ve been asked to rate my pain between 0-10. It goes like this:

              Dr.: How would you rate your pain?

              Me: Which one?

              Dr. Ummm….Overall.

              Me: Like an average of all my current pains right now? Or the worst one I’ve experienced today?  Or a median of my pains on a typical day? Or-

              Dr.: ???????????

The doctor usually tells you to rate your pain with 0 representing no pain, and 10 being the worst pain you’ve experienced in the “pain numeric rating scale.” But by asking patients to rate their current pain as one reductive, simplistic overall number, your doctor may miss the multi-dimensional impacts of living with chronic pain.

I’ve Got PainS

Chronic pain fluctuates widely across the location(s) in the body where it is experienced, and over time. Right now I have a 7 in my right SI joint/sciatic nerve,  5 in my right shoulder,  4 in my left pelvis, 4 in my right wrist, 3 in my neck, and 3 in my right foot. In a few hours, those numbers will change completely, and perhaps even become inverted. So knowing how I would rate these pains in this moment doesn’t really indicate anything about the clinical significance of the pain. For example, I experience my most significant pelvic pain at night, so asking me to rate it at my afternoon appointment will not accurately reflect the severity of the pain. Intermittent pain, breakthrough pain, and pain flare-ups are not captured in present moment pain ratings. It would be more accurate to record each pain over a week or month in a pain journal, to see how each part of my body is affected over time.

If you’re trying to understand the cause of pain, the knowing its quality or characteristics – aching, throbbing, shooting, stabbing, etc. – gives important clues. The 0 to 10 rating scale misses this important aspect of the experience of pain.

Most chronic pain patients have multiple overlapping conditions. You lose the ability  to understand and treat these very different issues when you ask the patient to lump all  their pains together and give one overall number. My pelvic pain and sciatic pain is neuropathic, the shoulder, wrist and neck pain is muscular, and my foot is mechanical pain from uncomfortable positioning.   The doctor cannot determine how a treatment is affecting the pain levels of a specific condition, such as endometriosis vs mechanical joint problems vs neuropathy, if you average all body pains together.

My Pain Isn’t Your Pain Isn’t My Pain

 Or being the worst you can imagine. These are two very different 10s. Since the onset of my chronic pain, I’ve experienced worse pain than I ever could have imagined in my life before illness. And now, I can imagine the worst pain I’ve ever experienced expanding to affect every part of my body, and it fills me with terror. In other words, my ‘worst pain I can imagine’ 10 has been recalibrated by my experience of having chronic pain. You can’t really compare these two 10s to each other, given how subjective and experiential pain is. Comparing 10s between patients only multiplies these discrepancies and confusion.

You are asked to rate pain between 0-10, where 10 is the worst pain you’ve experienced. Or 10 is the worst pain you can imagine. These are two very different 10s. Since the onset of my chronic pain, I’ve experienced worse pain than I ever could have imagined in my life before illness. And now, I can imagine the worst pain I’ve ever experienced expanding to affect every part of my body, and it fills me with terror. In other words, my ‘worst pain I can imagine’ 10 has been recalibrated by my experience of having chronic pain. You can’t really compare these two 10s to each other, given how subjective and experiential pain is. Comparing 10s between patients only multiplies these discrepancies and confusion.

Missing The Impact Of Pain On Daily Functioning

Why are we rating pain at all? In order to evaluate the severity of pain as a symptom on the health and daily functioning of a person. Put differently, we rate pain in order to evaluate its clinical significance, which can be defined as ” (1) pain that interferes with functioning and (2) pain that motivates a physician visit” (Krebs et al., 2007).

One study assessed the primary care pain numeric rating scale as a screening test for accurately identifying clinically significant pain in patients seeking treatment at a primary care clinic. They found that it was only modestly accurate, and it “missed [identifying] nearly 1/3 of patients with clinically important pain” (Krebs et al., 2007).

The core failing of the pain numeric rating scale is that it completely misses the impact of pain on daily functioning. And in doing so, it misses the clinical significance of pain in the lives of patients. In the 2007 study, they compared the 0-10 pain ratings with ratings from an alternative pain assessment tool called the Brief Pain Inventory interference. The BPI “measures pain-related functional impairment in seven domains: general activity, mood, walking ability, normal work, relations with other people, sleep, and enjoyment of life” as a rating between 0 (does not interfere) to 10 (interferes completely)” (Krebs et al., 2007). They found that the pain numeric rating scale missed almost 30% of patients which the BPI showed had pain that significantly interfered with their daily functioning.

How To Make An End Run Around the 0-10 Scale At Your Appointments

  • Always list the worst pain you have experienced today, or this week, not the current pain, or the average of current pains.
  • Make comparisons like, “it’s worse than when I broke my finger” or “it’s worse than when I was in recovery coming out of surgery.”
  • Don’t go with 10 unless you are in a crisis where you pain is about to kill you. Unfortunately, credibility,  involves not saying “15 out of 10”, because pain patients are not given grace or understanding.
  • Do give pain descriptors like aching, burning, shooting, stabbing.
  • Make a list of the limits on your daily functioning caused by your pain, like, “My neck pain is so bad I can no longer hold a book and read more than 1 page.”
  • Bring a pain journal you’ve kept over the past week, and a list of your worst pain levels, your average pain levels, in all your pain areas, and what limits these impose on your life.

Krebs, E. E., Carey, T. S., & Weinberger, M. (2007). Accuracy of the pain numeric rating scale as a screening test in primary care. Journal of general internal medicine, 22(10), 1453–1458. https://doi.org/10.1007/s11606-007-0321-2

Walsh, John (2017, Jan 10). How Much Does It Hurt? Independent. Retrieved from:

https://www.independent.co.uk/life-style/health-and-families/pain-how-much-does-it-hurt-pancreatitus-methods-doctors-measure-a7513101.html

From Pain to Painless: Resonant Botanicals Lotions Review

Resonant Botanicals Review

I’m excited to share my experiences trying Resonant Botanicals pain relief lotions, including Painless X, Neuro-Soothe and Calm Day,  which they were kind enough to provide free samples of for this product review. I’m even more excited to announce my first giveaway! Read on to find out how you can enter.

Although the products were a gift, all opinions in this review are my own, and I was in no way influenced by the company. This post contains affiliate links which help support the blog. 

As it happened, I was experiencing a severe muscle spasm on the day that the Resonant Botanicals creams were delivered (a crick in my neck, caused by an irritated radial nerve, which made the muscles in my neck and upper back seize up). Since I was in a lot of pain, I decided it was a prime time to try Painless X.

Applying Resonant Botanicals Lotions

When I pumped the lotion into my hand, the first thing I noticed was the lovely citrus-herb scent, which reminded me of key-lime pie. The scent is subtle and doesn’t linger, unlike Bengay, and other menthol based products. I found the process of applying the cream relaxing, with the scent itself acting like aromatherapy. Not surprisingly, the ingredients in Resonant Botanicals creams include essential oils, and terpenes – plant-based aromatic compounds, which are used in aromatherapy, and have been shown to boost health and well-being by exerting antioxidant and anti-inflammatory effects.

As I massaged it onto my shoulder, the Painless X cream rubbed in completely, without leaving a greasy residue. It felt more like a quality moisturizer than the usual topical pain cream. When I read the ingredients, I realized the difference is because the lotion contains jojoba oil, Evening Primrose oil, and Sea Buckthorn oil.

Massaging the cream on the places where I feel sore has become a relaxing part of my morning and bedtime routine. None of the Resonant Botanicals creams cause a burning, stinging or tingling sensation like Tiger Balm, capsaicin, Bio Freeze or A535. I also like the the lotions are cruelty-free, paraben free, non-gmo and silicone free!

How Effective are Resonant Botanicals Pain Relief Creams?

After I applied the Painless X cream, I went back to watching my TV show. When it ended, I was surprised to realize that I’d actually forgotten about my shoulder pain, because it wasn’t constantly intruding into my awareness anymore. That’s ultimately how I felt about both the Painless X and Neuro-Soothe products – that they dial down the pain intensity so that I can focus on other things.

Painless X Review

I found the Painless X most effective for muscle aches, such as the hard block of knots in my upper back. It typically reduced the pain from a 6/10 to a 2/10, and lasted for 3-4 hours. Painless-X includes potent natural pain relievers like hemp oil extract (the highest concentration offered by Resident Botanicals of 52.5 mg/oz of CBD), which research has demonstrated is effective for reducing chronic pain. Painless X also includes Arnica extract, MSM and magnesium, which are also natural painkillers. The cream provided significant pain relief and I’ve enthusiastically incorporated it into my daily pain management regimen. Of course, it didn’t act as a total cure – so if I immediately started typing or cutting veggies,  pain and muscle spasm would flare – however, if you have chronic pain, having a reliable source of relief is invaluable.

Neuro-Soothe

The Neuro-Soothe lotion helped with tenderness and tension in locations like my glute muscles, caused by my sciatic nerve pain, or wrist pain caused by radial nerve irritation. I also found it effective for temporary strains and pains, like the morning I woke up with elbow tendinitis after sleeping in an awkward position the previous night. The pain relieving ingredients in Neuro-Soothe include anti-inflammatories like hemp oil extract (37.5 mg/oz of CBD), ginger root powder, white willow bark extract, and magnesium chloride.

Deeper pains that originate in my spine, such as deep abdominal/pelvic neuropathic pain, were not reduced as much as surface muscular pain, but that makes sense because these are topical products. Even in the cases of deeper level nerve pain, Neuro-Soothe helped to relieve the surrounding muscle spasms.

Calm Day Review

Lately, like many others, I’ve been feeling quite stressed and anxious about the daily news headlines, so I find the Calm Day quite helpful. It helps take the edge off about 20-30 minutes later by promoting a relaxed mental state. In addition to essential oils, and a low concentration of hemp oil extract, Calm Day also includes the de-stressing herbs Ashwaganda, lemon balm, passionflower and St. John’s wort. I have also found it useful to apply Calm Day in the middle of the night when my insomnia is acting up. I either apply it where I am sore, or use it on my hands and feet.

Interestingly, I also felt mellow and almost drowsy about half an hour after applying Painless X and Neuro-Soothe, with the stronger hemp extracts concentrations intensifying this effect. This was quite helpful with relaxing before bedtime, so I usually prefer to use the Painless X then, and the Neuro-Soothe in the morning.

If you are interested in trying Resonant Botanicals pain relief lotions, please click here.

Giveaway!

I’m really excited to be doing my first giveaway! The first prize will include all three lotions – Painless X, Neuro-Soothe, and Calm Day – in the largest bottles,  8 oz , worth a total of $205! The 2nd, 3rd and 4th prize will include one large 8 oz size bottle of either Painless X, Neuro-Soothe, or Calm Day.

Update: Congrats to Kyrie, Janice, Kim and Sara on winning the giveaway prizes!

 

 

 

Surviving Summer: Tips You Haven’t Thought Of Yet To Help You Manage Your Illness In The Heat

 

Surviving Summer

Summer time is here. After a chilly spring, it’s finally sunny and H-O-T.  We usually associate this season with fun and relaxation. But for many people with chronic pain, the heat and humidity of summer weather only means an increase in their pain levels. If I step outside on a scorching summer day, with the sun beating down, it only takes a few minutes before I feel fatigued, and lightheaded.

What Causes Increased Pain in the Summer?

Chronic illnesses like fibromyalgia (FMS) are affected by summer weather. People with nervous system sensitization or disruption have trouble regulating their body temperature, especially when exposed to weather extremes (hot or cold). Specifically, exposure to hot temperatures can lead to muscle pain, headaches, and worsened fatigue. Excessive sweating can lead to dehydration and loss of electrolytes, which also contributes to muscle pain, headache, fatigue and other symptoms.

Joint pain can be worsened by summer weather, like high humidity or low pressure systems, which cause summer storms. Joint pain is a symptom of several types of arthritis, which commonly co-exist with fibromyalgia.

Did you know that there are sensory nerve receptors in your joints that detect changes in barometric pressure? They are called ‘baroreceptors’. High humidity or low pressure conditions can trigger baroreceptors, causing uncomfortable pressure in your joints. You may feel this as tightness or stiffness in your joints. Dehydration can also reduce the fluid in your joints. Since joint fluid helps to lubricate movement, less fluid can lead to more pain.

Insomnia is another significant cause of increased pain in the summer (often called “painsomnia” in the chronic pain community). It can be difficult to sleep during hot summer nights. Many studies show that poor quality sleep causes increased pain levels. Keeping cool at night is a top priority for people with chronic pain.

Finally, people tend to be more active during the warmer months of the year. Summer invites activities like walking outdoors, picnics, and swimming. Special events often take place in the summer, like weddings, national holidays, or vacations. Exerting yourself more than usual during this season can increase your pain levels.

Strategies for Pain Management in Warm Weather

Kick Dehydration to the Curb: You already know that, in the summer, it’s even more crucial to drink your eight glasses of water a day. You lose more water from your body through perspiration in warm weather. It’s important to replace that water so you don’t become dehydrated. Dehydration can lead to headaches, muscle cramps, fatigue and heat exhaustion – which can all exacerbate fibromyalgia symptoms.

But Don’t Forget Electrolytes: an often forgotten aspect of dehydration is replacing electrolytes lost by sweating. Electrolytes are substances that carry an electric charge and are responsible for nerve and muscle function, and regulating blood pressure, blood pH and other vital bodily functions. Electrolytes include sodium, potassium, calcium and magnesium. You might think of sports drinks like Gatorade as the best source of electrolyte replacement, but these drinks cause their own problems. The added sugar will only cause energy crashes after the initial sugar high, as well as long term harm to your liver, pancreas, and teeth.

Did you know fruit is an excellent natural source of electrolytes? Try making your water more hydrating (and tasty) by infusing it with fruit. Fruit-infused water is made by putting fruit into a pitcher of water and letting it soak for several hours or overnight. Think strawberry, lemon and basil water or watermelon and mint water, among other recipes. Try to use organic or well-washed fruit to avoid any pesticide residue. Put a small pinch of sea salt for additional electrolytes! Coconut water is another excellent source of natural electrolytes and can help replace lost potassium and sodium. Use it in your fruit-infusions or drink it on its own. You might be thinking “so why don’t I just drink juice?” Most juices contain the entire amount of daily sugar a woman is recommended to have in one glass! Instead of raising insulin and blood sugar levels, and then crashing later, fruit infused water contains far less sugar.

Carry a water bottle with you so that you can stay hydrated throughout the day. If you don’t like plain water, or haven’t infused it with fruit, try adding  lemon or cucumber to plain iced water, or making iced tea (think herbal or de-caffeinated if making a large pitcher).  Avoid more than 1 to 2 cups of coffee, because caffeine is diuretic, which can worsen dehydration. Ditto with alcohol.  If you have trouble remembering to drink water, try to tie this new habit to something you routinely do, such as having a glass of water before each meal, as well as when you wake up and go to bed.

Stay Cool on the Go: try a cooling fitness towel when you are out and about. When wet, these towels are designed to feel cooler than the air temperature, and  provide relief from the heat (but don’t drip). They can also wick away moisture from perspiration. Run the towel under cool water, put it around your neck, and feel cool for 2-3 hours.

One of my favorite gadgets is a mini USB fan that can plug into your smart phone! This helpful little fan plugs into your phone (where the charger goes) or power bank and provides instant relief for your face and neck in the heat. They typically weigh less than an ounce! This is such a life saver in a hot waiting room, vehicle or sidewalk. You can also buy chargeable electric handheld fans to take on the go.

Stay Cool at Home: it’s important to try to maintain a constant, cool temperature during a heat wave. You already know that air conditioning and fans can help to maintain a cooler indoor temperature.  Put a damp cloth in the freezer for several hours and then wipe your face, neck arms and legs with it to cool off.  Applying an ice pack to the back of your neck or the inside of your wrists can also help. If humidity worsens your pain, consider running a dehumidifier in your home. The temperature can be less of a factor causing your pain than dampness in the air, especially if your have joint pain. Blackout blinds are vital for keeping your bedroom cool for resting on hot summer days.

Sun Protection: this is key to avoid flare-ups that could be caused by sunburn or heat exhaustion. Try to stay out of direct sunlight, use sunscreen, and wear a hat; basically everything your mother told you to do in the summer. Sun protection clothing that blocks harmful UV rays can really help to lower the risk of sun burn and heat stroke. UV protection sunglasses can also help reduce the impact of brightness on your eyes, which is a migraine trigger for some.

Last summer I finally admitted that I needed more protection because I felt instant fatigue from the sun beating down on me every time I stepped outside. So I went online and found a UV protection umbrella, with a pretty floral pattern, that I use as a modern day parasol! It may look a bit eccentric, but I feel pretty pleased with my choice when I’m walking beside my husband (who is too manly to use a parasol),  while he squints and perspires from the heat!

Replace Heat Therapy with Cold Therapy: if you routinely use a heating pad for your pain, try replacing it with an ice pack, especially during a heat wave!

Pacing is particularly key during the increased activity levels we often associate with summer months. With the additional physical stress from heat,  it’s especially important to stick to your boundaries, no matter what expectations friends or family members may place on you.

Consider an Activity Tracker: I find a wearable actually tracker quite helpful for making sure I don’t overexert myself. It can be difficult to compare different activities, like a neighbourhood walk with an afternoon by the beach. Knowing how many steps I’ve taken helps me to pace myself during the day.

 Log Your Symptoms: if you are unsure what effect the weather has on your pain levels, try keeping a daily log of the temperature and weather conditions, along with your pain levels. This might help you to identify pain triggers. You can also note any strategies you have tried to reduce your pain levels, and what impact they may have had. Overtime this will help you to identify more effective solutions for coping with pain in the summer months.

Resources

Everyday Health (7 Smart Summertime Pain Solutions)

Everyday Health (Managing Fibromyalgia in the Heat and Humidity)

Metropolitan Pain Consultants (Summer Joint Pain: The Impact of Hot Weather)

 

 

The Pet Prescription: How a Stray Cat Named Sara Helped Me Learn To Be Braver & To Live More Fully Each Day, Despite Chronic Illness

I’m glad I didn’t listen to that voice of doubt in the back of my mind when it came to adopting a stray tabby named Sara. In a strange way, taking care of her has been an act of self-care for myself. She has become a part of our family and, besides all of the health benefits of adopting her, I think it’s the healing power of companionship and optimism that pets like Sara offer us most.

THE PET PRESCRIPTION: HOW A STRAY CAT NAMED SARA HELPED ME LEARN TO BE BRAVER & TO LIVE MORE FULLY EACH DAY DESPITE CHRONIC ILLNESS

 

sarah

Hello, I’m Sara, and I’m an affectionate, but shy, 3-year-old grey tabby. I like pillow forts, spying out the window and perching on your shoulder when you sleep.

Just over a year ago, we adopted a cat named Sara who is an affectionate, but shy, two-year-old grey tabby. Adopting a pet is good for your wellbeing. Pets enrich our lives and the benefits can be measured in health improvements: “According to the Centers for Disease Control and Prevention, pets… can help lower blood pressure, cholesterol levels, triglyceride levels, and feelings of loneliness. They can also increase opportunities for getting exercise and engaging in outdoor activities, as well as provide more opportunities for socializing with others” (Confronting Chronic Pain).

 

In particular, contact with animals has been found to benefit people living with chronic pain. For example, visits with therapy dogs at a pain management clinic was found to reduce pain and emotional distress in patients, as well as improve the emotional well-being of friends and family members who were there with them (Confronting Chronic Pain). Pets help reduce pain and stress, as well as give their humans companionship, and a sense of purpose.

One of the things I’ve learned from living with cats and dogs is that they wake up each morning optimistic about what the day ahead will bring. We see that in their excitement to play, their contentment snoozing in the sun and in their demonstrations of affection. They live fully hour to hour. When we share in those moments with them, some of that optimism inevitably wears off on us too. We love our pets and take care of them, as they take care of us.

IMG_20170409_102413
Lily was our 18 year old tuxedo cat. She loved playing goalie with tossed toys, petting sessions and sleeping on clean laundry.

Before we adopted Sara, we had a lovely 18-year-old black and white ‘tuxedo’ cat named Lily who lived to eighteen. She was originally my husband’s cat, and initially treated me like an interloper. But since fibromyalgia kept me at home, I became her constant daytime companion, the giver of treats and nearest available warm lap. We became friends and, eventually, family . She was always there for me on the hardest days when I felt unwell, and it meant a lot to me that I was able to be there for her in her golden years. The companionship and affection of a pet is an invaluable comfort during a fibromyalgia flare.

 

Our newest addition to the family, Sara, was abused in her first home and then went to a high-kill shelter. She was fostered by an animal rescue organization until we adopter her. The agency wanted to place her in a peaceful and quiet environment. That describes life at home with fibromyalgia to a tee. Living with a chronic illness necessitates a slow pace of life. I sleep late, wake up slowly with breakfast, coffee and the news; stretch and meditate; spend the afternoon writing and on the computer, with nap breaks in between; then I go for a walk when my husband comes from work; and we spend the evening together catching up on our favourite shows. Sara has lots of company, plenty of time for cuddles, and no one interrupts her cat naps. I gain companionship, the endless amusement that cats can provide (like watching non-stop cat videos) and the enjoyment of taking care of something other than my health.

As a person with chronic illness, living in a society obsessed with productivity, I often feel like a round peg in a square hole. My goals include learning to savour the small moments, staying present more of the time, and learning to take more time off and push myself less. The goals of my friends include career success, homeownership and completing their first triathlon next year. For them life is busy busy busy and for me it’s the opposite. There’s something wonderful about the fact that Sara fits into my lifestyle like a round peg in a round hole. My slow pace of life at home has been the exact right safe and healing environment she needed. Watching her learn to trust us and become confident enough to cuddle, sleep on our clean laundry, get into trouble and generally boss us around is such a bright spot in each day.

When you live with a health condition that’s lifelong, it’s easy to become habitually cautious about anything new – after losing many of my abilities, I have a lot of self-doubt about what I’m capable of. When we saw Sara’s picture and read her story online, I was torn between hoping we could provide her with the right home and the creeping doubt of trying anything new that people who live with chronic illness develop over time. I worried about the differences between looking after a geriatric cat you know well and an energetic two-year-old cat you’ve just met. Writing the animal rescue coordinator to start the adoption process was a spontaneous act of bravery and optimism.

Of course, there are things that I reasonably should not attempt to do because they will leave me feeling awful, such as working full time or attempting a triathlon. But that there are other things that I reasonably could attempt to do, but worry or a lack of confidence sometimes makes me hesitate. I’m glad I didn’t listen to that voice of doubt when it came to adopting Sara. In a strange way, taking care of her has been an act of self-care for myself. She has become a part of our family and, besides all of the health benefits of adopting her, I think it’s the healing power of companionship and optimism that pets like Sara offer us most.

Confronting Chronic Pain:

http://www.confrontingchronicpain.com/can-a-pet-help-with-your-chronic-pain/

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A Christmas Catastrophe: How Getting Lost in the Medical System Strains My Sanity And Hurts My Care

chronic christmas (1)

A day in the life of an angry advocate:

I barely slept last night because of endometriosis cramps. They assaulted me early this month and that’ll makes Christmas harder thanks to the painsomnia.

I called to cancel an appointment with my GP today as result. Brain fog and pain flares don’t result in productive meetings. We were supposed to talk about lowering and re-organizing my medications because I am about to start fertility treatments. I want to find the safest possible combination at the lowest reasonable dose.

Shouldn’t this be done by my pain specialist?

You’d think. But I get shuffled between my GP, OB, Pain specialist and fertility doctors instead. No one seems to want to pre-plan with me. I still don’t know who to call or what I would do if my pain spiked or my insomnia made me entirely sleepless during pregnancy.

My pain specialist has been busy focused on nerve blocks vs nerve ablations for my pelvic pain. That’s important. But he keeps deferring the medication chat until the next appointment. Which is always months away.

He’s too busy.

To make matters better, I’m playing broken telephone with the pain clinic office. They gave me an appointment time to follow up from an October nerve procedure but apparently never scheduled it. When I called to confirm and found there was no appointment, they told me the next availability was in six weeks. Great.

Then I realized not only would the medication chat happen too late, but if I waited to book my next nerve block until the Jan 21 appointment , then the procedure would have to wait until the spring because his schedule would already be full by then.

So I talked to the pain nurse earlier this week and asked to get the nerve block on the books asap. Two days later I got a call saying a completely different procedure (nerve ablation) was booked for Jan 22.

Are you for real?!? So I wrote an email to him sharing the results of the last procedure and all of my questions and thoughts, since that’s the only follow up from my surgery I’m apparently going to get.

I called my OB-GYN for help. She told me to contact Mother Risk (“an  information service providing up-to-date information about the risk and safety of medications and other exposures during pregnancy and breastfeeding”).

I’ve already done that. 3 times. But I have yet to sit down with a doctor to discuss their advice.

MotherRisk says it’s unlikely my medications will cause birth defects. As a result – and I’m not making this up-  my OBGYN and nurse practitioner asked, in that case, WHY I WOULD WANT TO TRY LOWERING MY MEDICATIONS?

Are you f&*!ing kidding me?

Because the less I take the better? Because if one is slightly safer than another, I’d rather take more of that and less of the other? Also, similar organizations to Mother Risk in the US and UK do identify increased risks with two of my medications!

To top things off- Surprise!- my period came two weeks early. I’m having a normal 30 day cycle for the first time in a year. My usual 44 day cycle is how I got my PCOS diagnosis. So now I am beginning fertility drugs just in time for Christmas, with all the joyous side effects.

So basically, HO.HO. HO.

Humbug.

3 Fibro Technology Hacks For Getting Things Done

3 Fibro Technology Hacks For Getting Things Done

Fibromyalgia makes it hard to get things done. Pain, fatigue, and brain fog conspire to slow your progress no matter how determined you are to accomplish your goals. I want to share the three most helpful technology hacks that I use for getting around the challenges of living with chronic illness. (All of my suggestions are based on my own preferences, and are not sponsored or affiliated with any companies or apps).

Voice Dictation Software: The last time I was able to type a single page on my computer was the year before my fibro diagnosis. Shoulder pain, neck pain, carpal tunnel, pinched radial nerve – I developed any and every pain related to computer-work. No amount of ergonomic-anything was able to make it comfortable for me to type. Like many people with fibro, home is where I’ve spent most of my time since my diagnosis. Being unable to use my computer was very demoralizing because the internet was my gateway to the wide world beyond my home.

In the past few years voice dictation software has become significantly more accurate. In fact, voice dictation is 2-3× faster than touch typing! Most importantly, it’s significantly easier on your body. Once I realized how much pain I could save myself, I began exclusively using voice dictation on all of my devices. On my phone and tablet, I use Google Voice typing to dictate text messages and emails. This is more gentle on my wrists than texting, but editing  any mistakes has to be done manually. On flare days, I have to stay away from doing too much on my phone.

My favourite voice dictation software is Dragon Naturally Speaking by Nuance, which is for desktop and laptop computers, both PC and Mac. Not only can you dictate and edit by voice, but you can also command your computer and mouse by voice! It takes a while to get up to speed on how to use Dragon (eventually I got the book Dragon Naturally Speaking For Dummies). However, with a little bit of patience, I’ve been able to use my computer again, and reconnect with the great big world out there. Most importantly, I have been able to spare myself a lot of upper back, neck and wrist pain. One unexpected benefit is being able to work on the computer while standing, sitting or even lying down via my headset. That’s about as fibro-friendly as it gets!

Pomodoro Pacing Apps: So you’re feeling pretty well, better than you have for a few days, and you decide it’s finally time to get some things done. You dive into doing the laundry, clearing your email inbox, or getting the groceries. But in your rush to finish the task, you blow past your limit and end up crashing. The next day you wake up with a flare. Sound familiar?

Theoretically, I know I will be more productive if I do things in small chunks, rather than trying to get it done all at once. I know that I should take small breaks. Closing my eyes and resting for a few moments helps to prevent brain fog. Shifting position, stretching or walking around really helps to banish back pain. But in the moment I find it really hard to remember to take those breaks. In frustration, figuring that ‘there must be an app for that’, I decided to research productivity apps. That’s when I learned about the Pomodoro technique.

The Pomodoro technique is based on the principle that the most productive way to work is in short focused bursts, with mini breaks in between. Typically, this means 25 minutes of work followed by five minutes rest, with a longer 15 minute rest after several work sessions. For people without fibromyalgia, this technique has been shown to increase productivity. And, of course, there are lots of apps for that!

I use one called Good Time, which lets me customize how long I want my work/break sessions to be. On a particularly brain foggy, achy day, I sometimes make my work-break sessions equivalent (15 minutes on, 15 minutes off). On a good day, I stick to the 25/5 minute Pomodoro technique. It’s particularly useful because I can customize taking a longer rest break – usually about half an hour – after two or three cycles of work/mini break bursts.

The problem with simply using the timer on my phone’s clock is that I forget to reset it once a single session has elapsed. You can set the timer on a Pomodoro technique app  to work continuously, so it automatically pings when a new session of work or break begins. It’s brain fog proof! No matter how many times I resolve to pace my activities, I always end up pushing past my limits. The notification bell reminding me that it’s time to take a break is the only solution I have found that actually works.

Voice Activated Virtual Assistant: The bane of my fibromyalgia existence is being unable to remember when I need to do things – deadlines, appointments, responding to emails or texts, or anything of that nature. The answer seems simple – add things to my to-do list when I remember them, and that way I’ll be able to keep track of all my tasks. Except, in order for that to work, I need to remember to check my to-do list! For the life of me, I can’t seem to do that. Brain fog is one of the most frustrating fibromyalgia symptoms, but virtual assistants can do some of the planning for you.

One day, when I was explaining my frustration about forgetting my to-do’s, a friend said to me “all you have to do is enable the Google assistant on your phone, and then verbally ask it to remind you about task X whenever you need to address it.” This was really a eureka moment for me. I can press the home button on my phone to activate the assistant, and say “remind me tomorrow morning at 10 a.m. to call Dr. Smith and book an appointment.” Then, the next morning at 10 a.m. I will get a reminder on my phone to call Dr. Smith. The reminder stays on my notification drop down menu until I clear it. You can even set reminders that will be sent to based on your geographical location. For example, when you get to the grocery store, you will receive the pre-set reminder telling you to “pick up cereal.”

Many of us don’t use the full functionality of assistants like Siri, Cortana, Google Assistant, Alexa, Bixby or Dragon Mobile. You can save notes to yourself if you want to jot something down before you forget it. If you want to compile multiple notes, like ideas for a project, you can send an email to yourself with of a complete list of your ideas at the end of the day. Additionally, you can add general reminders you might want to access at any time, like the license plate of a rental car. If you ask “what’s on my calendar tomorrow?” your assistant will tell you what you have scheduled the next day.

Virtual assistants can send texts, make calls, read aloud your messages, find emails and more by voice, which I find helpful when I have eye strain or sore wrists. Assistants can do calculations, so if brain fog is preventing you from figuring out how much to tip, you can ask for a little help.

Mind Games: How I Cope During a Chronic Illness Relapse Using Brain Exercises

relapse

Around the holidays a couple of years ago, 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 didn’t return to pre-viral levels for several more months.

The next holiday season, my pelvic pain increased substantially.  As I wait for more procedures, I worry about how I will cope with this ‘new normal’, which is interfering with my sleep and sometimes 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. I use a great app called ‘What’s up?‘ that lets you journal your thoughts and feelings, rate your mood and then connect them to any unhelpful negative thinking patterns (not an endorsement, just an honest review). It helps to get my head right instead of jumping to the worst-case scenario, which in turn helps me to feel better!

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 nerve block to treat my undiagnosed pelvic pain. I have a lot riding on whether this treatment will work – including being able to come off medications while my partner and I try to conceive. Just thinking about it makes me feel anxious and upset.  However, I won’t know anything until after the procedure, which is several weeks 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.

One reason I like the What’s up? app is because it includes several grounding exercises that ask you to identify things in your present moment environment, and bring you back to earth if you feel like you’re getting really caught up in a negative train of thought.  As my grandma used to say, worry about crossing that bridge when you get there!

Between spending time on your phone or binge-watching Netflix, it’s easy to become too distracted to enjoy the small moments in life. Meditation can help us relearn to stop and smell the roses. This is especially important for people living with chronic pain. Even during pain flares there are small moments of enjoyment if we stop and notice them — the taste of a good meal, sharing a hug, a sunny day, or a favorite hobby. Intentionally taking in the good moments by staying present while experiencing them is a powerful way to counterbalance the negative experience of feeling worsened symptoms during flareups or relapses.

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

The Top 9 Things I Do To Sleep Better At Night Despite Chronic Pain & Fibromyalgia

Do you feel like ‘the Princess and the Pea’ when you try to get a restful sleep? Here are my top 9 recommendations for improving your quality of sleep if you live with fibromyalgia, chronic pain or chronic illness.After being my own guinea pig, I wanted to share the most effective non-drug, natural solutions I’ve found to beating ‘painsomnia’.

Top 5 Things I Do to Sleep Better Despite Fibro and Pain

The never ending search for a good night’s sleep… if you have fibromyalgia, chronic pain, or chronic illness, you know what I’m talking about. Getting a good night’s sleep is one of my biggest challenges day-to-day. Almost everyone living with FM (or CFS, chronic pain or another chronic illness) can relate to this struggle. There seem to be so many obstacles to getting a full night of restful sleep:

  • pain
  • changes in how the brain regulates sleep/wake cycles (researchers have found that Fibromyalgia patients have disordered deep sleep – intrusions of ‘alpha waves’ associated with light sleep during deep sleep ‘delta waves’)
  • hormonal changes, such as reduced production of growth hormone, responsible for night time tissue repair
  • increased environmental sensitivity, such as to light or sound

Like a lot of other people with fibromyalgia, getting enough sleep is probably the single most important factor that determines my quality of life. In my case, I need to get about 9 hours of sleep to be able to function the next day. If I don’t, I am miserably exhausted and everything seems to go wrong – pain goes up, mood goes down and brain fog sets in.

A few years ago I did a sleep study. Before we move on, I would like to just say, for the record, that sleep studies really should be classified as a modern form of torture – what else can you call being forcibly held in place by many restraining wires, while watched through a Big Brother camera by the night guard, err, nurse?

Anyway, moving on… My sleep study showed that I woke up 66 times during the night, or about 14.3 times per hour. In addition, it found that my sleep efficiency was very low, at 64.5% (total time I was actually sleep divided by the time I lay in the bed). Basically, like many other people with chronic pain or illness, I’m just not getting a very restful sleep.

Over the years, I have tried countless supplements, medications, lifestyle changes, products and strategies to help me get a better night’s sleep. While most of these turned out to be ineffective, a number of them have significantly improved the quality of my sleep. I thought it might be helpful to share the results of being my own experimental guinea pig with you!

Quiet Down: Reducing Noise Distractions for Better Sleep

I think I might have actually become the world’s lightest sleeper since I developed fibromyalgia. I get woken up by trucks going by, my husband’s snoring, early commuters closing their car doors, my cat cleaning herself, my husband’s snoring, snowplough machines, dripping faucets, my husband’s snoring… You get the picture. Sudden noises are the bane of any insomniac’ s existence. Even if you don’t actually get woken up by a disruptive sound, it can disturb your sleep by shifting you from deep, restorative sleep into a lighter stage of sleep (Prevention). This is especially problematic for people with fibromyalgia, who already get less restorative sleep than the average person because of their illness.

1) Silicone earplugs: The first thing I tried to block out sound was, of course, earplugs. I tried all different kinds, and eventually settled on silicone earplugs. You might recognize these as a type of earplug used by some people when they go swimming to prevent swimmer’s ear infections. Instead of putting these plugs into the ear canal, the silicone molds to cover and seal the entrance to the ear canal. Personally, I find them more comfortable and effective than regular foam earplugs. For regular use, I think silicone earplugs are safer because there is less worry about damage from impacted earwax (caused by frequently pushing something into the ear canal).

2) White noise: But what if earplugs aren’t enough? This is where white noise enters the picture. White noise is a sound that contains many frequencies at the same intensity, like the sound of a fan, rainfall, or static on the radio (Prevention). By providing a constant, soothing background sound, white noise can blanket or drown out disruptive sounds that wake light sleepers. It works by reducing the noise differential between background noise and the disruptive sound – if the background sound is just silence, then a disruptive noise is very jarring, but if the background sound is white noise, then a disruptive sound is, well, less disruptive.

At first I wasn’t sure how adding noise would help me sleep better, when noise is what frequently wakes me up. But I found that I quickly adapted to the constant sound of the white noise. Best of all, I stopped being woken up by sudden noises!

Initially, I tried a number of free apps to play white noise on my phone. This is a good option to find out if white noise works for you. Over time, I found that my phone wasn’t able to play white noise loud enough to mask sounds like the neighbour’s leaf blower. Additionally, the app would sometimes cut out in the middle of the night and wake me up (yes, even sudden silence is enough to wake me). That’s when I found my new best friend, the LectroFan white noise machine. It is a small white machine that plays 10 types of white noises and 10 fan sounds. I really appreciated that it has a precise volume control so you can incrementally increase it to the right sound volume for you, and it can play a surprisingly loud sound for such a small machine. The best part is that it has an option to play continuously, instead of having an automatic shut off after a set period of time, like many other machines. Now, I’m never anxious that sudden sounds will wake me up because I know I can mask them with the white noise machine.

Lights Off: Why Darkness is Better for Sleep

Your body’s sleep-wake cycle is governed by light and dark. Darkness cues production of the sleep-inducing hormone melatonin to get you ready for a good night’s sleep. Unfortunately, artificial light can suppress the production of melatonin, which makes it hard to fall asleep and stay asleep (National Sleep Foundation). One of the simplest and most effective things you can do to improve your sleep is to reduce exposure to artificial light at night and early sunrise in the morning (unless you prefer to get up at the crack of dawn). Absolute darkness is an insomniac’s best friend. Here are the tips I have found most effective reduce light exposure:

3) Black-out Blinds: if you aren’t familiar with them, blackout blinds are made of specially treated material prevents light passing through them. In my experience, they’re one of the most effective ways to keep my room dark enough for a better night’s sleep. Whether streetlights, headlights or sunlight keep you up, blackout blinds are one of the best solutions. You can even buy portable black-out blinds for home or travel. Heavy drapes or curtains can also keep your room dark. Since I usually need to sleep in relatively late in the morning in order to get enough sleep to last through the day, blackout blinds have been a saving grace because they keep the sunlight out. However, it’s important to open all your drapes and curtains and blinds when you to get up, because sunlight in the morning helps to maintain a healthy sleep-wake cycle.

4) Sleep mask: in addition to blackout blinds, I often also use a sleep mask. That might seem like overkill, but indoor artificial light is another sleep disruptor for me. The lights from digital clocks, nightlights, computers/TVs, someone else making a midnight trip to the washroom, and many other sources can wake me up.

5) Blue Light Filter: Different wavelengths of light affect your brain differently. Researchers have found that blue light, which has a short wavelength, suppresses the release of melatonin to a greater extent than other wavelengths of light (National Sleep Foundation). Blue light is given off by electronics like computers and cell phones, as well as energy-efficient light bulbs. If you use one of these devices shortly before going to bed, you will probably find it more difficult to fall asleep or stay asleep. The best option is to simply turn off all of these electronics a couple of hours before going to sleep. The next best option is to install a blue light filter on your phone/tablet. By reducing the emission of blue light, you can reduce the negative impact of using the device on your sleep. Some phones come preinstalled with a blue light filter, like the Samsung Galaxy, but there are blue light filter apps for every type of phone or tablet. Often you can preset the filter to turn on automatically at a certain time in the evening, so you don’t even have to think about it.

Strange Bedfellows: Coping with ‘Painsomnia’

If you live with chronic pain, you have probably endured countless sleepless nights. Because insomnia often accompanies pain, the term ‘painsomnia’ was coined to describe this struggle. When my pain flares up, I sometimes see my bedroom as a torture chamber rather than on oasis of rest! After much experimentation, here are my recommendations for making your bed more comfortable so you can sleep better at night:

6) Neck Pillow: Personally, without a supportive neck pillow, I develop serious neck pain and migraines. Orthopedic or ergonomic neck pillows are often designed in a contoured wave-like form, and support the natural alignment of the head, neck and spine. If you sleep on your side, there are specially designed contour pillows for you (usually advertized in the product description). Materials like memory foam, latex or bamboo fibre help provide consistent, durable support. Orthopedic neck pillows are more costly than regular pillows,. In my experience, though, buying one is totally worth it! Pillows should be replaced every 1-2 years.

7) Customize Your Mattress: I’m pretty sure the ‘Princess and the Pea’ fairytale was written about a girl with fibromyalgia. A bed can feel like some sort of torture device to someone trying to sleep with chronic pain. I recently had to buy a new mattress because my nighttime back pain was too much to bear. In the process, I learned that there are  many decently affordable online mattress vendors. Once you’ve selected a mattress, they ship it to you in a surprisingly small box, and give you a three month trial. If you decide to return it, you get your money back and the pickup service to retrieve the mattress is free. It was such a relief to know that I had enough time to test out my new mattress and, if I decided to return it, I didn’t need to worry about the cost.

8) Heated Mattress Pad: Unfortunately sometimes even the best mattress can feel uncomfortable to someone with chronic pain. My muscles become very tense at night while I sleep, and I often wake up quite stiff or with a muscle spasm.  One of the best things I have discovered for improving my sleep quality is the existence of heated mattress pads. A mattress pad looks like a regular fitted sheet but it has small wires woven into the material that release a gentle heat. You can’t feel the wires at all, at least not sleeping on the heated mattress pad that I bought. There is a bedside dial that you use to adjust the heat level, and if you buy a queen-size one or larger, each side of the mattress pad has a separate dial for you and your partner. Sleeping on the gentle heat of the mattress pad all night has definitely reduced the number of muscles pain flare-ups I experience. I am less stiff and less sore when I get up in the morning, and I sleep better overall.

9) Mattress Topper: Another option to make your mattress more comfortable is to use a mattress topper – an extra layer to provide additional support while you sleep. I previously used a memory foam mattress topper on my old mattress, which I found helped to relieve pressure points by contouring to my specific shape. Another mattress topper option is the CuddleEwe, which uses specialty wool, and is designed to relieve pressure on your body contact points when lying down (ex. shoulders and hips) by diffusing weight better than a mattress can.

(This post contains affiliate links, but recommendations are based on my own opinions and have been in no way influenced by third parties. Anything you purchase through the affiliate links helps to support this blog, so if you are planning on doing some retail therapy anyway, consider clicking on the in-text links).

 

Optimism and Chronic Health Conditions: Is ‘Think Positive’ A Cure, A Daily Boost, Or A False Promise?

Having a positive attitude will not cure you. Saying otherwise to people living with chronic conditions invalidates their experiences. But cultivating optimism can improve your quality of life, and help you to live better with a long-term illness.

Optimism and Chronic Illness

Are There Negatives to ‘Think Positive’ Advice for People with Chronic Conditions?

I was in my physiotherapist’s office when she probed an unexpectedly painful spot. This was the year my body began to fall apart and I had gone to see her in a desperate attempt to relieve the pain in my neck, shoulders, back and pelvis. When she found an agonizing point on my leg, I burst out in frustration: “Stupid body!” The problem, my physiotherapist informed me, was not physical, it was mental. My bad attitude about my body was the source of my pain. If I could learn to let go of my negativity, then my chronic pain would be resolved. Basically, positivity was the cure. I left her office both angry with her for dismissing my very real, body-wide pain, and riddled with self-doubt over whether my outlook on life was in fact the source of my illness. I wasn’t alone in my experience:

The idea that optimism is all you need to achieve anything you want, even recovery from illness, is now conventional wisdom. In her article Smile! You’ve Got Cancer, author Barbara Ehrenreich writes about her experience with breast cancer. Ehrenreich (2010) describes that, when she went online to learn from the experience of other survivors: “The first thing I discovered as I waded out into the relevant sites is that not everyone views the disease with horror and dread. Instead, the appropriate attitude is upbeat and even eagerly acquisitive.” She recounts examples of this kind of thinking, including quotes like this one from Jane Brody: “breast cancer has given me a new life. Breast cancer was something I needed to experience to open my eyes to the joy of living.” Ehrenreich calls this message “the tyranny of positive thinking.”

But, Can a Positive Attitude Actually Improve Chronic Illness?

Is Ehrenreich too fast in dismissing the potential benefits of optimism? Research consistently supports the idea that having a positive outlook can lead to positive health outcomes. In fact, a number of studies have:

…shown that a high level of optimism is linked to both enhanced physiological recovery and psychosocial adjustment to coronary artery bypass surgery, bone marrow transplant, postpartum depression, traumatic brain injury, Alzheimer’s disease, lung cancer, breast cancer, and failed in vitro fertilization (Goodin and Bulls, 2013, p. 329).

Before we go any further, I think it is helpful to define what it means to have a “positive attitude.” Researchers commonly equate positive thinking with optimism. Optimists are defined as “people who expect positive outcomes to occur in their future” and who are “likely to persist in their goal-directed efforts, where as those low in optimism are more likely to withdraw effort, become passive and potentially give up on achieving their goals” (Goodin and Bulls, 2013, p. 329).

The rationale for urging patients to develop a positive attitude is, essentially, that it will enable them to recover from their condition, and improve their quality of life along the way. I think there is a crucial difference between these two claims. The first claim is that a positive attitude will actually change the course of your disease, while the second claim has to do with an improved quality of life while living with illness.

Stop Blaming the Victim: Chronic Conditions Are Not Cured by Positivity

When it comes to the first claim, Ehrenreich (2010) shares her frustration that  “it remains almost axiomatic, within the breast cancer culture, that survival hinges on ‘attitude’.” This message also happens to be wrong – researchers have found that optimism does not increase survival rates for cancer (Medical News Today, 2004).

The positivity dogma shifts the cause of disease from being a physical malfunction to a character flaw – if only you were positive enough you wouldn’t have developed fibromyalgia or your cancer wouldn’t have metastasized. It is the worst kind of blame-the-victim thinking.

And while it might seem easy for people living with illness to dismiss comments suggesting they developed their condition because of their bad attitude, the problem is that illness makes people prone to feelings of guilt. Not only are our own lives changed, but so are the lives of family, friends and colleagues who depend on us. We feel guilty for the burden that our illness places on others, and that makes us vulnerable to self-blame. As the American Cancer Society explains, positivity-as-cure can be a deeply destructive message because it makes the patient culpable for getting sick in the first case and places the burden of recovery on their ability to be cheerful about it along the way (Edmonson, 2017).

The pressure to be optimistic invalidates the normal and natural feelings of grief that accompany illness. To suggest that grieving itself worsens illness, that these feelings should be repressed in favour of positivity, actually makes learning to live with the condition more difficult. If you are a friend or family member of someone living with a chronic illness you should know that attempting help by saying “you should be more positive” dismisses the very real feelings of the person you care about. In fact,

“A study published in the New England Journal of Medicine that analyzed the effects of expressing authentic emotions among breast cancer patients. And guess what? The researchers found that women who were able to reveal honest feelings showed overall mental-health improvements and reported less physical pain than the women who kept things bottled up” (Edmonson, 2017).

If you are a person with a chronic condition, let me be clear – your illness is not your fault, your feelings of grief and anger are natural, and recovering or managing your illness does not hinge on being happy all the time.

But Cultivating Optimism Can Improve Quality of Life for People with Chronic Conditions

The second claim about the benefit of positivity is that your perspective will influence your experience of illness – that being optimistic will help you cope better with your symptoms.  Since symptoms like pain and fatigue are ultimately subjective (based on personal feelings), it seems intuitive that your mental outlook might colour your experience of symptoms. This is not to say anyone should try to be positive all the time, or at the expense of expressing authentic emotions, but that working towards optimism, hope and acceptance can reduce suffering and pain.

It turns out that there is a large body of evidence which supports this notion. Greater optimism has been linked to reduced pain levels in people with different types of cancer, as well as arthritis (Goodin and Bulls, 2013). Interestingly, optimism has also been associated with adjusting better to life with a pain condition because of factors like paying less attention to pain symptoms, better daily mood, and less catastrophizing (thinking the worst; assuming every negative event will be an overwhelming disaster).

The idea that a positive attitude could improve my quality of life with chronic illness feels less blaming and dismissive to me than the dogma “survival hinges on attitude” which Ehrenreich describes . First of all, it doesn’t suggest that developing fibromyalgia was my fault because it makes no claims about cure or recovery. Secondly, it makes positive thinking more of a goal to work towards, if I choose. Grief and acceptance come in waves and learning optimism is not about repressing sad or angry feelings.

The idea that a positive outlook might improve everyday life doesn’t dismiss the reality of grief or other negative feelings, but it does provide an option for cultivating a better relationship with my pain and illness, if I decide that my current state of mind is not helpful to me anymore.

Is a possible to cultivate optimism, hope and acceptance? It appears that optimism, and its related traits of hopefulness and acceptance, can be learned. Our brains have the ability to change by forming new neural connections with repeated practice, a phenomenon called neuroplasticity. I have listed a few resources below if you are interested in science-backed strategies for learning greater optimism.

  • An app called Bliss has a number of proven exercises that can increase optimism, such as expressing daily gratitude, visualizing your best possible future and purposefully savouring the good things that happen each day.
  • One of the most powerful tools that has helped me to cope with my illness 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. You Are Not Your Pain is an excellent book on learning mindfulness for people living with pain and illness.
  • Buddha’s Brain by Rick Hanson is a wonderful book with practical advice on how to retrain your brain to strengthen positive brain states like calm, joy and compassion.

So, How Does Positive Thinking Affect Chronic Illness?

  • Having a negative perspective does not cause illness.
  • Having a positive attitude will not cure you.
  • Saying otherwise to people living with chronic conditions invalidates their experiences and feelings.
  • It is natural to feel grief and anger over the onset of illness and healthy to express these emotions.
  • Working towards greater acceptance and cultivating optimism can improve your quality of life, and help you to live better despite the challenges of having a long-term illness.

References:

Edmonson, J. (2017, Sept 3). A positive outlook not always in your best interest. The Star.

Ehrenreich, B. (2010, January 2). Smile! You’ve Got Cancer. The Guardian.

Goodin, B. and Bulls, H. (2013). Optimism and the experience of pain: benefits of seeing the glass as half full. Curr Pain Headache Rep, 17(5): 329. doi:10.1007/s11916-013-0329-8.

Medical News Today.(2004, Feb 9). A positive attitude does not help cancer outcome.

 

Tune In: How Listening to Music Improves Fibromyalgia

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

How Listening to music improves fibromyalgia

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

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

Research on the Impact of Music on Fibromyalgia

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

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

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

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

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

Why Music Improves Fibromyalgia Symptoms

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

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

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

How Listening to Music Improves Fibromyalgia Symptoms

References:

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

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

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

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

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