Tag: chronic pain

Pain, Pregnancy & Prescriptions: Why You Should Treat Your Pain and How to Manage Safely (While Trying to Conceive & Pregnant)

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The first question I had after we decided to start TTC was about how to safely manage my medications during pregnancy. It’s vital not to under-treat your pain! Here’s where to find the info you need. And to those of you who criticize women in pain who are taking prescriptions while trying to conceive, my message is: get out of here with your stigma!

How To Find Out If Your Medications Are Safe During Pregnancy

During my 20s, I spent a lot of time and effort trying not to get pregnant. I used pills, patches and IUDs, coped with side effects, sat for hours in waiting rooms just to get prescription renewals, had a couple of scares thanks to late periods, and experienced all the other joys of being a woman using birth control.

It’s a surreal moment when you and your partner make the terrifying and exciting decision to you flip the switch, and start trying to conceive. Suddenly it’s all basal body temperature, ovulation predictor kits, and cervical fluid checks (and acronym hell – TTC, BBT, OPK, CF, TWW and BFP – it’s like a secret code!). Learning and tracking all of the ovulation signs is hard enough, never mind the challenges of pregnancy and parenthood, But for those of us with chronic illness, we face the additional hurdle of managing pain and other symptoms along the way. It’s vital to have a pain management plan while trying to conceive and pregnant:

“Because of fear about use of drugs during pregnancy, some pregnant women would rather suffer than treat their pain. Consequently, it is possible that such women are at risk of undertreatment, or no treatment, for painful conditions. Chronic, severe pain that is ineffectively treated is associated with hypertension, anxiety, and depression—none of which is conducive to a healthy pregnancy” (Motherisk).

The first hurdle you will most likely face, like I am right now, is how to safely manage your pain and other symptoms while you and your partner are trying to conceive?

How To Find Out If Your Medications Are Safe During Pregnancy

The first question I had after my husband and I decided we wanted to start trying was about the safety of my medications during pregnancy. At the time, I didn’t realize how complex this issue would turn out to be. It seems simple enough – a medication is either safe or unsafe, right?

Not so fast. In fact, a whopping “91% of the medications approved for use in adults lack sufficient data to determine the risk of birth defects due to use of medications during pregnancy” (CDC – Treating for Two).

The problem is that there are no double-blind, placebo-controlled research trials involving pregnant women. Why? Because it’s unethical to test the safety of a medication on a pregnant woman and her growing fetus – the potential consequence of causing a birth defect is too great a risk (CDC – Treating for Two).

Instead, the information doctors have about the safety of medications and pregnancy usually comes from observational studies of women who have chosen to take a medication during their pregnancy.

“Registries enroll pregnant women who have taken a certain medicine. Then, after these women give birth, the health of their babies is compared with the health of the babies of women who did not take the medicine” (CDC – Treating for Two).

The best you and your doctor can do is learn what information there is about the safety of the medications you take, weigh the potential health benefits and risks, and make a judgment call. But don’t fear prescriptions while TTC or pregnant. In fact, “Medications used in therapeutic doses for acute and chronic pain appear to be relatively safe in pregnancy” (Motherisk – click for a general overview of medications and supporting studies).

So where can you find the information that has been collected about prescription medication use before and during pregnancy?

In the United States, you can contact an organization called Mother to Baby, a nonprofit run by experts in birth defects. You can call toll free at 1-866-626-6847, text 855-999-3525, or visit the website at https://mothertobaby.org/.

In Canada, you can contact Motherisk at 1-877-439-2744 toll free or online at http://www.motherisk.org/

Prescriptions And Pregnancy: Get Out Of Here With Your Stigma

Prescriptions And Pregnancy: Get Out Of Here With Your Stigma

I take medications to manage my pain, including nortriptyline, tramadol and pregabalin. When I first went online to research this issue, I faced a wall of stigma and guilt-tripping over women taking prescriptions while trying to conceive or while pregnant. I felt a lot of stress and guilt about my “choice” to continue taking medications – as if I was somehow failing as a mother before I even became one.

I want to push back against any notion that taking medications to manage your pain while TTC or pregnant is in any way selfish. Yes, some medications are dangerous during pregnancy and the information we have about them is sometimes limited. You have to do your research and perhaps switch medications and emphasize non-pharmaceutical strategies to manage your pain (like massage, acupuncture, gentle exercise, yoga and meditation). But we also know that being in pain, stressed, and unable to sleep while pregnant is harmful to a growing fetus. Reducing those illness symptoms is actually a responsible act, something that a caring mother would do. So to those of you who criticize women in pain who are taking prescriptions while trying to conceive, my message is: get out of here with your stigma!

 

 

 

 

 

How to Plan a Chronic Illness-Friendly Wedding

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How to plan a chronic illness friendly wedding

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I was daunted about taking on the chaos that is wedding planning. Through trial and error we were able to plan a wedding that mixed tradition with our own style and my health needs. I wanted to share what I learned about how to plan a wedding that a spoonie bride (or groom!) can not only survive but enjoy.

*Spoonie: A person living with chronic illness, based on the spoon theory

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1. Be unconventional –  the standard all day, all night wedding format is not spoonie friendly. You know, getting ready, early afternoon ceremony, pictures, sit-down dinner, speeches, and dancing until late in the night. Add to that the fact that a wedding is an emotional high in itself. Most of us would lose all our spoons before the ceremony was even though! So pick the traditional elements that are most important to you but design the rest of your day within your limits.

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In our case we picked a venue where we could have both the ceremony and reception, to limit the travel time – a historic house and gardens in Toronto called Cedar Ridge Creative Centre. We had an afternoon wedding, from 1-5, which was the length of time I thought I could handle. We had a garden ceremony followed by a cocktail style reception inside, with buffet lunch and wine. I gave up on dancing, because it’s not something my body agrees with. Finally, our photographer took mainly candid photos, except for a few posed family ones during the reception. This saved additional time.
I brought a bar chair to sit on during speeches (but still got sore from standing for too long overall). I was lucky that my best friend was an incredible maid of honour, and she did an amazing job at keeping me hydrated and fed  and reminding me to take mini-breaks. As the bride, you become very distracted by meeting and greeting all of your guests, so asking someone to help you remember your self-care plan is a key element to you enjoying your special day.

2. Be budget conscious …without too much DIY
Spoonies are often on budgets because of constraints on work and expenses on care, but  there is no need to go into debt to have a lovely wedding. We spent approximately $7000. The only additional expense was our choice to have a green wedding – organic flowers, catering and wine is slightly more expensive, but we felt it was worth it.

Here’s how we kept costs under control:

  • We rented a municipal property, which was far less expensive then private venues. Cedar Ridge Creative Centre is a historic house preserved by the city as an art gallery with public grounds.
  • We limited flowers. We only had bridal/bridesmaid bouquets during the ceremony, with the garden flowers standing in for floral arrangements. During the reception we had a few floral arrangements on serving tables – mostly single flowers in vases.
  • We only served wine rather than having an open bar.
  • Most significantly for saving on expenses, we didn’t have a sit down meal but rather a catered buffet lunch.  Everyone mingled and enjoyed chatting, which we really enjoyed.
  • Finally, we didn’t go away for our honeymoon, mostly so I could recover without the stress of travel. It also kept our costs down!

DIY can be taken to extremes and will most likely lead to flares. I would rather keep it simple than crash because I decided to do everything myself!

See if you can delegate – Our families helped by creating wall hangings (wallpaper on rectangular foam hung like paintings), and favours (seed bombs). My best friend baked a delicious gluten-free vegan cake (yes, it is possible but it took several trial runs!).
The only DIY I did was using rubber stamps on craft paper to make signs for the serving tables.

 

 

 

3. Organize brain fog away

  • Make a spreadsheet or use a planning app. When things randomly occur to you, add them immediately. Set aside time to review your lists when you feel less foggy. Most importantly, have your partner and maid of honour double check regularly. You will forget things and things will go wrong, so try to be accepting that this is part of the process.
  • I became good at delegating, and this was a surprisingly rewarding thing to do, Initially I felt guilty, but it was a warm and fuzzy feeling that  my friends and family were happy to help, showing their love and affection. Our wedding was better than we had hoped it would be and part of that was the feeling that everyone had pitched in to make it that way.
  • In order to relieve my anxiety that  would forget to tell someone something they needed for their tasks, we made checklist spreadsheets for all our ‘helpers’. It may have seemed a bit OCD but as I’ve said, stress is toxic for spoonies, and since it made me feel better, it was worth it!

4. Plan around tension and keep your boundaries
Oh family – things can sometimes get complicate. For example, I have divorced, remarried parents. A sit down dinner with seating arrangements seemed like a nightmare, so a cocktail party was my solution.

Because we planned our wedding in under 7 months, we came up with our plans for our day quickly. One bonus was this gave less time for anyone to share unwanted advice during the planning process 😉 Actually our families were mostly happy for us to plan the day how we wanted. From talking to friends planning weddings, I advise not having conversations with people whose opinion you don’t want while you are still in the planning stages.

In my opinion the advice that it’s your day so you can do what you want is unhelpful. It’s your marriage and you can do what you want… But the wedding is a celebration with your nearest and dearest. The day is really about celebrating with them. We compromised on a few things, but then we stuck to our plans. I found the phrase “oh that’s an interesting idea, I will talk to my partner about it” helped so much to show you are listening to your family members, but reserving the right for you and your partner have the final say.  Boundaries are important for spoonies as a key way to manage stress and tension in relationships –  which can be toxic to our health and well-being.

5. Practice self-care and take it one day at a time
Plan your self care! I asked my doctor for stronger sleeping pills for the days leading up to the wedding, which helped relieve my anxiety that a sleepless night would ruin my day due to fatigue. I put in appointments with my massage therapist, physiotherapist and naturopath in the days leading up to the wedding. I planned time alone and time alone with my fiance,  just to have fun. Still, I did not do this enough and started to resent the wedding for taking up all my available energy, which is limited enough as is.  In hindsight I would double the time taken for self-care and to make time NOT spent wedding planning.

My maid of honour carried an ’emergency kit’ throughout the wedding day. In addition to make-up and comb, we put in pain killers, indigestion relievers,  and scented calming oils.

Secondly, what I eventually learned was that there is only so much you can organize in one day. At some point you have to let go of what you can’t control and focus on the point of it all – celebrating this love you have found. I learned this by just getting too overwhelmed and having to give up on extra tasks. I  wish I had started by taking it one day at a time! But being a bride inevitably takes over for a little while, as any married person will agree.

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6. Finally, don’t read bridal magazines! This is NOT “the landmark taste-making event of your life” or whatever panic inducing nonsense they write. This is about love and family and friendship and fun. It’s A day, a big day, true, but not THE day. Spoonies don’t need extra stress! Or extra work! Or hand-dyed organic cotton ribbons to tie around chair backs for a shabby chic effect… Plan this day for you, your love, and your family and friends, not for anyone else!

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

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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).

 

Tune In: How Listening to Music Improves Fibromyalgia

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

How Listening to music improves fibromyalgia

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

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

Research on the Impact of Music on Fibromyalgia

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

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

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

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

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

Why Music Improves Fibromyalgia Symptoms

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

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

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

How Listening to Music Improves Fibromyalgia Symptoms

References:

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

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

[3] Garza-Villarreal EA, Wilson AD, Vase L, Brattico E, Barrios FA, Jensen TS, Romero-Romo JI and Vuust P (2014) Music reduces pain and increases functional mobility in fibromyalgia. Front. Psychol. 5:90. doi: 10.3389/fpsyg.2014.00090

[4][4] Picard, L. M., Bartel, L. R., Gordon, A. S., Cepo, D., Wu, Q., & Pink, L. R. (2014). Music as a sleep aid in fibromyalgia. Pain Research & Management : The Journal of the Canadian Pain Society, 19(2), 97–101.

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

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

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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/

Should You Try Yoga as a Treatment for Your Fibromyalgia?

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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

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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.

 

 

 

 

Move More: How I Actually Started Exercising with a Chronic Condition

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Move More: How I Actually Started Exercising with a Chronic Condition

Does just seeing another article about exercise make you want to turn the page? It often makes me want to. When I got diagnosed with my chronic condition all the information about exercise seemed so out of touch with the reality of my life. If I’m already tired, sore and busy then I’m not going to be able to go to the gym. I can’t afford a personal trainer. With my back pain there is no way I can participate in the group yoga classes I used to take in university. Even more frustrating was the fact that all the research I came across proved how beneficial exercise is to health. I knew that I should exercise but I felt like I couldn’t.

 

But what if I could?

One day I came across an(other) article reporting on research that showed yoga could improve fibromyalgia, my chronic condition (OHSU, 2010). The results were impressive – pain was reduced by 24%, fatigued by 30% and depression by 42%. Great, I thought, another thing I can’t do that would help. But in this case I also found that two of the researchers were part of a nonprofit organization that produces exercise DVDs for fibromyalgia, including one on yoga and Pilates (link below). I ordered the DVD and skeptically waited for it to be delivered. I was surprised and excited to find that I was able to do the routine – which was shown at three different intensity levels so I could modify the poses as needed. I found that the at-home instructional DVD format was affordable, convenient and accessible – I could do it when I was able, for as long as I could and without wasting energy traveling somewhere and back.

Woman stretching arms behind back

Photo by Steven Depolo

During my health coach training I learned that yoga, tai chi, qi gong, and stretching are all range-of-motion or flexibility exercises. These types of exercise can also build strength and promote balance, but primarily focus on lengthening tight muscles and moving joints through the full span of movement they are intended to achieve. “Limited flexibility can cause pain, lead to injury, and make muscles work harder and tire more quickly (p. 92, Lorig et al., 2013).

My positive experience with the yoga/pilates DVD encouraged me to find other programs with a similar format. One of my favorites is the Tai Chi for Health series by Dr. Paul Lam (link here), especially the Tai chi for Arthritis program that was designed in conjunction with the Arthritis Foundation. This instructional video that takes you step-by-step through 12 lessons until you have the movement sequence memorized.  I enjoyed learning an entirely new way of moving and began to feel more confident that I could include exercise in my weekly routine.

I also started seeing a physiotherapist who put together a thorough stretching routine for me to do daily. Without doubt, this is the single most effective thing I tried to improve my health and well-being. My pain has decreased and my daily functioning has improved, along with my quality of life.

Many flexibility/range-of-motion exercises programs also share a second common feature as mind-body movement practices. For example, “Yoga is a set of theories and practices with origins in ancient India. Literally, the word yoga comes from a Sanskrit work meaning “to yoke” or “to unite”. It focuses on unifying the mind, body, and spirit, and fostering a greater feeling connection between the individual and his/her surroundings” (Moonaz, 2015). Greater body awareness, stress reduction, emotional balance, and improved energy are all benefits of mind-body exercise programs (Moonaz, 2015).

Flexibility/range of motion exercise programs are a great starting point for anyone who has not exercised for awhile, or who has a health condition that makes movement challenging. They are easy to do at home or you can find many classes offered in your community. Gradually incorporating these routines 2-3 x/week and practicing daily stretching is how I was able to actually begin to  move more. Below is a quick primer on what these kinds of activities are so you can pick the right one for you and a link to programs that I have tried:

Yoga: “Yoga involves directing your attention and breath as you assume a series of poses, or stretches” (Gaiamlife, n.d.).

Qi Gong and Tai chi: “The term qi gong (or chi kung) describes the complete tradition of spiritual, martial and health exercises developed in China. Tai chi is one of the most common of these. Practicing qi gong involves performing a series of movements while paying attention to the body and staying aware of the breath. The exercises are especially effective for developing balance, focus, coordination and graceful, centered movement” (Gaiamlife, n.d.).

Stretching: Poses to lengthen muscles and increase range of motion in joints

 

References:

OHSU. (2010). OHSU Research Suggests Yoga can Counteract Fibromyalgia. http://www.ohsu.edu/xd/about/news_events/news/2010/2010-10-14-ohsu-research-sugge.cfm

Moonaz, S. et al. (2015). Yoga for Arthritis. Johns Hopkins Arthritis Center. http://www.hopkinsarthritis.org/patient-corner/disease-management/yoga-for-arthritis/

Gaiam Life. (n.d.) How to Choose a Mind Body Exercise. http://life.gaiam.com/article/how-choose-mind-body-exercise

 

 

 

Exercise at home: Tai Chi for Arthritis

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tai chi

My husband and  I decided this week that we need to focus on regularly doing stress relieving exercise. We came to this conclusion after one of those pointless arguments that you have in the middle of a stressful week, when you aren’t really dealing with what is actually bothering you. One problem with having chronic pain is that every week can seem like an especially stressful one – flareups can interrupt like mini crises, causing a flurry of last-minute adjustments to make sure all the necessary things get done. Life can start to seem like a giant game of whack – a – mole (that carnival game where the ‘moles’ pop their heads up faster than you can hit them with the hammer). We realized that if we just keep trying to react to all those inevitable stressors faster and faster, from forgotten pill refills to unexpected financial costs to family demands on our time, the only result will be that we are burned out, not that our to-do list will ever stop growing.

I think we need to try to get a little bit of control by managing our stress better, not doing our chores faster. I have an upcoming mindfulness-based stress reduction (MBSR) course happening at my hospital later this fall, which I think will be really helpful. However, another important thing to include is exercise. This is difficult for chronic pain and fatigue patients, for obvious reasons. It can also be hard for our spouses and caregivers because they often don’t have time between working and doing the household chores to fit in some exercise. I’m very lucky to have a man in my life who is willing to do so much for me – but he sometimes forgets to take care of himself in the process.

I think that it is very convenient to have an at-home option for your exercise. Walking and aqua fit are great, but if the weather is bad or you don’t have the energy to trek out to a pool somewhere, it can often mean no exercise at all. I think a really good resource are at-home DVDs.

I was excited to find a resource called Tai Chi for Arthritis by Dr. Paul Lam . I had never done tai chi before I got this DVD and I have to admit that I generally associated it as an exercise that was most appropriate for elderly people. Like a lot of other things that I’ve had to revise, I’ve learned that this stereotype is just not true. This is a really good instructional video that takes you step-by-step through 12 lessons until you have a movement sequence memorized.

I particularly like tai chi because the entire program involves standing, not transitioning from lying to sitting to standing which other exercise forms like yoga tend to do. There is also a seated tai chi DVD available on his website if that is easier for you. It is entirely possible to take rest breaks if needed between lessons. The DVD also includes warm-up and cool down segments. It’s nice to be learning an entirely new way of moving – it feels like a new skill rather than a simplified exercise protocol. Although it is very gentle, I can feel afterwards in my shoulders and mid back that I have been exercising. Dr. Paul Lam is also a very Zen individual, and watching him is just in itself calming!

This program was specifically designed by the Arthritis Foundation in the US and Dr. Paul Lam, who is a medical doctor and tai chi instructor. Some of the health benefits discussed on the Tai Chi for Health Institute website include:

  • Muscle strength is important for supporting and protecting joints. It is essential for normal physical function.
  • Flexibility exercises enable people to move more easily. Flexibility also facilitates the circulation of body fluid and blood, which enhances healing. Many arthritic conditions such as fibromyalgia, scleroderma and spondylitis are characterized by joint stiffness and impaired physical function. Tai chi gently frees up stiff joints and muscles.
  • Fitness is important for overall health and proper functioning of the heart, lungs and muscles. Tai Chi for Arthritis can improve all of these components.

Several studies of the program were completed and they demonstrated pain relief and improved balance for patients with arthritis. I’m going to focus on trying to do this program two to three times a week. Hopefully I will begin to feel more of the physical benefits, but especially the stress lowering effects of exercise in general and tai chi in particular!

My partner (who does not have chronic pain) is going to be doing a beginner yoga DVD by Rodney Yee which looks really good. It focuses on learning each posture correctly and then gives you a couple of routines to learn. It’s good to remind the people that we love and who take care of us to look after themselves once in a while!

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Open Letter to All Health Professionals Treating Clients with Fibromyalgia

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Open Letter to Health Providers

I usually never write a letter of complaint after I have a(nother) bad experience with a health provider. I just want to move on. In some cases I am afraid commenting will affect my treatment. In others I just feel disillusioned that it will make any difference.

I am coming up on my four year anniversary since diagnosis and I feel a sense of responsibility, that after all my experiences I should raise awareness about the basics of safe, competent, patient centered care. So I am posting a letter I wrote to an acupuncture clinic I tried last week, which was an epic failure, in the hope that a health provider out there reads it and learns a thing or two!

Good afternoon,

I would like to cancel my appointment next week. Treating chronic pain patients requires specific skills and I would like to pass on a few suggestions for improving your clients’ experience:

– after the acupuncture needles are put in place, inform the client how they can call for assistance if they need to. I was in significant pain because of the lying position I was in and could not get help during the last 10 min of waiting.

– inform the patient about each procedure beforehand, what it will be like and what the possible consequences might be. Sarah (name changed) asked if I would like to try cupping and after I agreed she began the treatment before explaining what it entailed. Furthermore, instead of testing one or two times she did it all over my back. Since then, I have had chronic headache, a pain flare and deep bruising. The definition of my condition is increased pain sensitivity so an experienced practitioner should have trialed the treatment on the first visit. I have had to see my physiotherapist to undo the muscle spasms caused by this treatment.

–  I was given a herbal remedy but the ingredients were not explained, nor were the benefits or possible side effects described. This is the equivalent of my doctor saying ‘here is a prescription’ without telling me what it is, why, or what it should do! I have a lot of sensitivities to drugs and supplements, and often need a  lower dose than normal but was not given an opportunity to discuss this in private.

All of these examples are ultimately a failure of patient-centred care – making the client feel like a person rather than a diagnosis –  and therefore,  I will not be returning to your clinic.

Sincerely…