Tag: fibromyalgia

Organic Aromas Diffuser: The New Aromatherapy Tool in my Fibromyalgia Treatment Toolbox

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

The Organic Aromas nebulizing diffuser mists microdroplets of essential oil throughout a space of up to 800 ft.² The diffuser works without using heat or water, by applying Bernoulli’s principle to pressurize the essential oil into a fine mist. This means the essential oil is unaltered, thereby retaining its rich scent and therapeutic effect. The product itself is comprised of a handcrafted wooden base with the blown glass diffuser set on top. Gentle LED mood lights flicker within. The design of the product is aesthetically pleasing. You can leave it on a tabletop or windowsill and it looks decorative even while it is not in use.

The diffuser is very easy to use. You simply put 10-15 drops of essential oil into the opening at the top of the glass reservoir, and switch it on. The scent it produces is noticeable but not overwhelming, unless you sit or lie down within 1-2 ft. The full richness of the scent was more noticeable to me than produced by other aromatherapy products that I tried. It works quietly, although there is a slight hissing sound as it produces the mist. I found the lights unobtrusive especially in daylight.

Another feature that appealed to me is that it uses very little energy. The diffuser alternates between misting and rest every two minutes. The base contains a dial so you can choose the strength of diffusion you want. It automatically turns off after two hours.

You can find more information on Organic Aromas Nebulizing Diffusers here: https://organicaromas.com.

How can aromatherapy help with chronic illness? 

Many of us struggle with the side effects of medical interventions. Aromatherapy offers an enjoyable and side-effect free alternative. One critical caveat here,  if you have multiple chemical sensitivities or light/scent induced migraines, this may not be appropriate for you.

There are many essential oil that you can try for a range of purposes. I began with lavender oil in the evening for relaxation/sleep and rosemary oil during the day for mental fatigue, memory issues related to brain fog, and circulatory stimulation. You may be surprised to know that studies support the use of essential oils for medicinal purposes. For example, according to the University of Maryland Medical Center, “Scientific evidence suggests that aromatherapy with lavender may slow the activity of the nervous system, improve sleep quality, promote relaxation, and lift mood in people suffering from sleep disorders”[i].  Since sleep is a primary complaint for those living with fibromyalgia, aromatherapy with lavender oil could be a valuable tool in your treatment toolbox. According to another recent study, rosemary oil diffused throughout a room helped participants perform significantly better on a memory test than participants in a control room[ii]. This appealed to me because brain fog affects my word recall and short term memory. Essential oils are believed to work when compounds that are inhaled enter the blood stream. In the case of rosemary, some of those compounds are able to cross the blood-brain barrier, affecting brain activity[iii].

If you are interested in learning about other essential oils that may be helpful for fibromyalgia, check out the links below:

References:

[i] http://umm.edu/health/medical/altmed/herb/lavender

[ii] http://www.bbc.co.uk/news/magazine-33519453

[iii] http://www.bbc.co.uk/news/magazine-33519453

A Not-to-Do List for Life with Fibromyalgia

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I recently began reading Toni Bernhard’s wonderful book How to Live Well with Chronic Illness.  I was inspired to write this post after reading a section in her book where she outlines her ‘not-to-do list’. Bernhard rightly points out that it takes a great deal of self-discipline to stick within the restrictions imposed on your body by chronic illness.  In my own case I’ve found that most of my self-growth has come from recognizing, accepting and learning to do things differently in response to these restrictions.  I thought I would share my own not-to-to list:

  1. Do not equate productivity with self-worth: in my life before fibromyalgia I made work my top priority. I was in my mid-twenties and trying to start a career. I made a lot of sacrifices in my relationships and personal life in order to achieve these goals.  When all this came crashing down and I was no longer able to work, I could not see how I added value to the world around me.  Although I lead a much more well-balanced life now, I still have that voice in the back of my head every day judging whether I accomplished enough, and in turn, how good I feel about myself.  Now I challenge these thoughts.  When you live with chronic illness, every act of self-care, pursuit of a hobby, time spent with a loved one, or even regular work are all “productive”.
  1. Do not spend more time with toxic people then you choose to: we all have people in our lives, whether friends, colleagues or family members who are difficult to be around. They make us feel upset, drained, and negative. Sometimes I refer to these people as ‘energy vampires’- after visiting them, you feel depleted and depressed.  These are people that you need to set boundaries with, regardless of any guilt they may throw your way.  Toni Bernhard writes about having a revelation that she was not personally responsible for the behaviour of other people.  She practices equanimity about the fact that other people often don’t act the way we want them to, which I think is a valuable insight for people living with chronic illness.
  1. Do not push through: at the beginning of my illness journey, I never let myself “give in” to the fatigue or pain I was experiencing. I would stay out at a cafe all afternoon, even if I started to go cross-eyed with exhaustion, rather than surrender to my limitations.  Now I understand that this not-to-do actually helps me transcend my limitations, rather than surrender to them. After taking a Mindfulness Based Stress Reduction class, I learned to develop a different relationship with my body.  I try to work with my body, rather than in spite of it. For example, I really wanted to write this blog post today, but I am especially fatigued after a bad night’s sleep.  So instead, I am writing one bullet point, then resting, then writing etc.  You have probably had ‘pacing’ recommended to you before.  Personally, I don’t usually follow a rigid pacing schedule, like 15 minutes work, 15 minutes rest, etc.  Instead, I regularly check in with my body and accommodate accordingly.  To me, for pacing to be successful, it needs to be about more than scheduling; it’s about building a better relationship with your body.
  1. Do not add judgment of yourself on top of the challenges you already face: most of us are our own worst critics. We often set impossible standards for ourselves.  Even in the face of the challenges of chronic illness, I still think that I should be more positive, zen, strong, or competent, among other things.  When I get upset about something, I’m good at piling more judgment on top of myself for even being upset in the first place.  By being more aware of my inner dialogue, I’m getting better at recognizing when I do to this.  When I catch myself, I try to say ‘this extra judgment isn’t helping me deal with the real problem here’.  I take a deep breath and begin again.
  1. Do not say “I should” or “I have to” or “I must” to yourself: These types of statements set impossible standards for yourself, and are unrealistic given the constant flux of symptoms that characterize chronic illness. I’ve learned it’s important to hold intentions about what I would like to cultivate more of in my life.  Intentions are always present.  We always hold them in this moment. Goals about what you should/must/have to always do exist in the future. When you live with chronic illness you have so little control over what tomorrow will look like. ‘I should’ statements presume an all or nothing definition of success. These types of statements set yourself up for failure. It’s more helpful to say “I’m going to try my best to do __”. Hold this as an intention, even through set-backs.

The Top 3 Things I Do Every Morning to Manage My Fibromyalgia

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the-top-3-things-i-do-every-morning-to-manage-my-fibromyalgia

Mornings are tough when you live with fibromyalgia. If you’re like me, you wake up stiff and tired, and shuffle out of bed. I usually sit in a stupor, drinking tea, eating breakfast and watching tv. I’ve learned that it’s what I do next that determines how the rest of my day will go. Here are the top three things I do to keep my fibro symptoms under control.

  1. Eat super seeds for breakfast. (And no, I don’t mean bird food!)

Seeds may be small, but they’re still super!  Seeds like chia, flax and hemp hearts (hemp seeds with the hull removed) contain several key fibromyalgia-fighting nutrients.  I usually add 2 tablespoons of seeds to my morning oatmeal or smoothie. Of course, it’s still important to have a balanced breakfast, with protein, healthy carbs and fiber. All three seeds are rich in antioxidants, which are critical for people living with fibromyalgia, because we have high rates of oxidative stress caused by tissue-damaging free radicals (read more about the importance of anti-oxidants to fibromyalgia here).  Chia and flax both contain a plant based source of omega-3, which is anti-inflammatory (although it’s important to note that omega-3 from fish oil is more potent overall).

 Two tablespoons of hemp seeds provide 50% of your daily recommended allowance of magnesium (chia comes in at 18% and flax at 14%).  Magnesium has been demonstrated in several studies to reduce fibromyalgia symptoms, and is important for nerve and muscle health.[1] Chia, flax and hemp seeds are also rich in essential minerals like manganese, phosphorus and iron. Chia is a great source of calcium. Did you know that women living with fibromyalgia have low levels of these minerals?[2]  All three seeds also contain fiber, which can be helpful if you suffer from digestive symptoms or IBS, and is good for your overall gut health. 

2. Stretch

Every morning I spend about half an hour doing a full body stretching routine.  Stretching is probably the single most important management tool I have for my pain.  I use a combination of stretches recommended by my physiotherapist, gentle yoga poses (like a child’s pose) and basic stretches I learned in gym class. A recent review of research into the effects of stretching on fibromyalgia treatment found significant improvements in pain and quality of life [3]. According to the Mayo Clinic, stretching improves flexibility, range of motion and increases blood flow to the area.[4] It’s usually recommended that stretches should be held for at least 30 seconds.  My physiotherapist suggested that, if I found this too painful, I should hold for 5 seconds, gently release, and repeat six times.  She said that gentle rhythmic movements are sometimes easier for our sensitive nervous systems to handle.  You may find it necessary to warm up before stretching by walking around your home several times and/or taking a hot shower. Here is a basic list of stretches: 

Cat and cow yoga pose 5 x
Child’s pose
Knees to chest (on back)

Keyhole piriformis stretch (ankle to opposite knee and pull) each side

Hamstring Stretch

Stretches for neck and shoulder pain

Forward head tilt
Ear to shoulder tilt both sides

“Nose to armpit” stretch

“Eagle arm” upper back stretch

3. Meditate

Early on after my diagnosis my pain specialist recommended that I take a Mindfulness-Based Stress Reduction course for pain management.  This is one of the best things I’ve done for my sanity and well-being!  There is a growing body of evidence that shows mindfulness meditation helps to reduce pain, anxiety and depression (read more about mindfulness and fibromyalgia here).[5] “Mindfulness is awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn, a pioneer of mindfulness in medicine[6]. Being mindful means intentionally being present with your breath, thoughts, feelings and sensations.  Inevitably, your mind will become distracted by worries, memories, or plans. This is an opportunity to begin again, by gently guiding your awareness back to the present moment. You can practice mindfulness through breath meditation, body scans, mindful eating, or mindful movement like yoga or Tai Chi all of which, will in turn help you practice mindful touch (find a list of free guided practices in the references[7]).  I use the Insight Timer app on my phone to do an 8 minutes self-guided breathing meditation or listen to a guided meditation most weekday mornings.

[1] http://www.fmaware.org/magnesium-fibromyalgia-treatment/

[2] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3192333/

[3] http://fibromyalgianewstoday.com/2015/04/21/systematic-review-reveals-muscle-stretching-exercises-seem-improve-fibromyalgia-symptoms/

[4] http://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/stretching/art-20047931

[5] William, M. and Penman, D. (2012). Mindfulness, NY: Rodale. p.6.

[6] http://www.mindful.org/jon-kabat-zinn-defining-mindfulness/

[7] http://www.freemindfulness.org/download

Balancing Dreams Against Working Within the Status Quo

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Balancing Dreams Against Working Within the Status Quo

The last year has been a slow but definite change in my illness and my outlook. At the end of 2015 I was managing my fibromyalgia, more or less, and struggling through a part time social work degree. This was part of my retraining after diagnosis, into a career I hoped I could pursue part time. Over the holidays I got a bad cold. Luckily, the first virus since my illness onset 5 years earlier. I recovered from the runny nose and coughing, but not from the constant fatigue. I had the worst brain fog I’d ever had, with trouble even seeing what was in front of me. I developed anxiety about being caught out during a brain fog flare, after becoming disoriented in a store and having to leave without paying. It’s scary to lose the ability to find an item in a store, figure out how to pay for it (without forgetting your pin code) and walk home.

Around this time I was supposed to be finding a practicum placement for my degree program. There was no way I was going to be able to finish the winter 2016 term, never mind commit to functioning 15 hours a week during specific hours. So I put school on hold. I worried I was back to having my life on hold.

Overtime I started blogging more again, connecting with other people living with chronic illness on social media. I took a health coaching course. I’ve considered many different ideas about how I could work from home. Recently it occurred to me that, with my prior experience in Korea, I could take a course to tutor English as a second language one on one, at my set hours, or online.

I’ve lost about five years of work experience and all my confidence in anything professional. It’s a combination of the uncertainty of my condition, of the horrible experience of slowly losing my functioning, and the fear of going back to the worst moments of my illness. How can I make a commitment I don’t know I can keep? Maybe it’s the fact I am a people pleaser and a perfectionist, but the prospect of that happening makes me very apprehensive.

Then there is the whole issues of expectations. In my life Before Fibro (B.F.) I was a graduate student, planning on working in international health projects as an applied anthropologist (like HIV/AIDS or malaria programs). I travelled a lot and wanted to live all over the world. Now, that’s never gonna happen. It’s something I am sad about at times, but I have mostly reconciled myself to. I try to move forward and plan new plans.

But I can hear the voices of a few family members who would not be happy about my ESL tutor plans. “You’re settling, and not living up to your potential” is what they’d say. Am I sure I’ve tried every avenue to make make my dreams a reality? Is it ever right to turn your back on your passions? Am I just rationalizing giving up as ‘acceptance’? Perhaps.

There is something liberating about finding a pathway that I CAN follow. I can volunteer tutor. Take an online course. Apply to online positions that interest me or advertise and accept students that I want to work with. Make my own schedule. Every other career option seems fraught with unknowns, like placement requirements I may not be able to fulfill.

There is the appeal of tangible accomplishment as you see students learn. There is very little that is tangible about chronic illness. Improvements in health fluctuate. Hobbies can definitely help to fill this void. I find doing calligraphy gives me a sense of accomplishment. Blogging too. But I still feel a gap that I want to fill, a need to contribute beyond my own personal life to improve someone else’s. I’m excited to volunteer tutor for the library, two hours a week. I think that’s manageable. Maybe it won’t go beyond that, into work. That would be ok too.

I’d also like to be able to contribute financially to my family, even if it’s only enough for a vacation. This is a side benefit though and not one I want to count on. Living as a couple on one income is a stretch but we’re fortunate we are able to. I’m just not able to work enough to make a big difference. But I would be really excited to earn a paycheck.

After beginning this post I came across a quote by J.K. Rowling (Albus Dumbledore):

“It does not do to dwell on dreams and forget to live” – J.K. Rowling

Living with chronic illness has changed my relationship to my dreams. I want to live now, based on my current abilities, rather then wait on dreams.

Can Antioxidants Help Treat Chronic Illnesses Like Fibromyalgia?

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 can antioxidants help treat chronic illnesses like fibromyalgia?

By now, who hasn’t heard that they should be eating antioxidants?  But have you got the message about why you should be anti oxidants in the first place, especially if you have a chronic illness?

Dr. William Sears explains “Our bodies are oxygen-burning machines.  Every minute, countless biochemical reactions through the body generate exhausts called oxidants, or free radicals” (Prime Time Health p. 20).  These particles damage our DNA, cells and tissues through a process known as oxidation.  You’ve actually seen this happen – probably without knowing it – when a cut piece of apple or avocado browns over time.  Or, when your aging car or bicycle rusts. Free radicals pull electrons from nearby molecules, altering their structure and function, and damaging tissues at the biochemical level. In the body, this ‘rusting’ leads to age-related changes like hardened arteries, stiff joints and wrinkled skin.  Chronic oxidation activates inflammation pathways at the cellular level.  In turn, chronic inflammation can lead to chronic disease, including cancer and arthritis, among many other conditions.

The body naturally produces antioxidants – substances that bind to free radicals, effectively neutralizing them. Many vitamins, like C and E, as well as minerals, like selenium, act as antioxidants. The antioxidant defence system is a key part of the body’s immune system, acting to protect our cells and tissues. “But when the body builds up more oxidants than antioxidants,” explains Dr. Sears, “the garbage backs up and increases the wear and tear on the tissues” (Prime Time Health, p. 21).

Increased oxidation is part of many chronic illnesses.  Rheumatoid arthritis patients, for example, have increased levels of free radicals but decreased levels of antioxidants that “may contribute to tissue damage” and the chronic nature of the illness (Mateen et al., 2016).  People living with fibromyalgia also have an imbalance of increased free radicals and decreased antioxidants (Cordero et al., 2010). This imbalance is called oxidative stress.

Can increasing your intake of anti-oxidants treat chronic conditions? The complex interaction between oxidation, inflammation, immune activation and genetic expression means that we don’t fully have the answer to that question yet. What we do know is that antioxidants are an integral part of maintaining overall health. When you live with a chronic condition, doing your best to maintain your general health can take the stress off your body’s healing mechanisms so that your body’s energy can be focused on living as well as possible with your chronic illness. For example, we know that eating sugary and fatty foods increases oxidative stress, which in turn, increases inflammation. In a vicious cycle, this exacerbates conditions like diabetes or arthritis. However, if you include more fruits, veggies, whole grains and lean proteins, you can reduce oxidative stress and reduce inflammation.

By now you are probably anti all oxidants and wondering what you can do to boost your antioxidant defense system. The best source of anti-oxidants comes from foods rich in “phytonutrients” – vitamins, minerals and other healthful substances found in plants. The richest sources of phytonutrients are berries, dark leafy greens, colourful veggies, dark chocolate and green tea. Nuts, seeds, legumes and whole grains are also valuable sources of antioxidants.

The easiest way to increase your antioxidant intake is to make a smoothie part of your daily routine. Try to go organic where possible, because organic fruits and veggies contain higher levels of phytonutrients.

My favourite morning smoothie (serves 1):

  • 1/2 a cup mixed berries
  • 1 banana
  • 1/2 cup kale (you can’t taste it, I promise!)
  • 1 tablespoon flax
  • optional: 3-5 cherries for additional phytonutrient boost
  • optional: 1/3 cup oatmeal for increased fibre and serving of whole grains,
  • optional: 1 scoop of no-flavour protein powder (I use whey) or 2-3 tbsp hemp hearts for vegan protein
  • optional: 1/3 cup coconut milk for healthy fat

References:

Cordero, M. et al. (2010). Oxidative Stress and Mitochondrial Dysfunction in Fibromyalgia. Neuroendocrinology Letters, 31(2), pp. 101-105.

Mateen S, Moin S, Khan AQ, Zafar A, Fatima N (2016) Increased Reactive Oxygen Species Formation and Oxidative Stress in Rheumatoid Arthritis. PLoS ONE 11(4): e0152925. doi:10.1371/journal.pone.0152925

Sears, W., & Sears, M. (2010). Prime-time health: A scientifically proven plan for feeling young and living longer. New York: Little, Brown and Co.

Shared on Chronic Friday Linkup and Fibro Blogger Directory’s Fibro Friday Linkup

Should You Try Yoga as a Treatment for Your Fibromyalgia? —Guest Post for Leaving a Legacy

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I haven’t tried yoga for my fibromyalgia, so I’ve asked a friend to give us some insight. Katarina has some great pointers for us here ….

via Should You Try Yoga as a Treatment for Your Fibromyalgia? — Leaving a Legacy

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

 

 

 

It’s 3am, I’m wide awake, and feeling guilty about it

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This morning, I woke up tired. I know, big surprise for someone living with a chronic condition. Whether it’s painsomnia, stress induced insomnia or regular old insomnia, it’s all too common.

I take a prescription sleep aid every night. I’ve stayed away from more effective but more addictive sleeping pills and currently take a low dose tricyclic. I also take several supplements. I have found that melatonin, 5-HTP and l-theanine are an effective combo. However I still get those nights where I wake up every couple of hours or can’t get back to sleep. Sometimes I give up in frustration and take an over-the-counter sleep aid as well. Other nights, like last night, I feel guilty about taking anything extra and just try to get back to sleep.
Now I’m exhausted. Or maybe I should say extra exhausted, since I feel fatigued most of the time. I’m wondering, what is that guilt about?

I always feel like I should take the least amount of anything that I need. I worry about what everything I already do take is doing to my body. I feel like I need to justify all of my prescriptions. I wonder if I failed somehow because meditating and yoga don’t make me sleep.

But, I have a bonafide diagnosis for a debilitating condition. According to my sleep study I come out of deep sleep into light sleep 14 times an hour. If I need to take extra supplements in the middle of the night then so be it, right?

I think this comes down to a sort of internalised stigma about being sick. The assumption that you must have done something wrong to get sick in the first place. Or if you do the right thing you’ll get better. Or maybe it’s the assumption that if you try harder, or get tougher, you’ll get over it. Acceptance of my condition has come in stages. Recognizing my own internalized ableism is another stage. I think it’s good that I want to take the least amount of medication possible, and try to see where supplements can work instead of prescriptions. But that attitude is only ‘good’ to the extent it helps me manage my condition, not when it becomes a means of self-criticism for being sick. I already have enough fatigue without adding extra sleepless nights because I wouldn’t let myself accept that I need help to sleep.

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…

Digestively Challenged: Overcoming G.I. Tract Problems when you have a Chronic Illness

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Digestively Challenged: Overcoming G.I. Tract Problems when you have a Chronic IllnessIs eating well with chronic illness a luxury? When I first got diagnosed, I thought so. The significant pain I was experiencing in the muscles around my shoulder blades made it impossible for me to chop, stir, or sauté a whole meal – basically, to cook. My partner was more than happy to help (as long as I showed him how!), but it felt unfair. After all, he was now supporting me financially and doing the majority of the housework – since laundry, vacuuming, scrubbing and dusting were similarly impossible for me. We tried to eat the healthiest convenient foods we could. Unfortunately, convenience isn’t healthy, at least when it comes to eating. In a previous post, I wrote about how my processed diet failed me, even though I was making supposedly healthy choices. In one year, I gained about 20 pounds, ate four times the daily recommended allowance for sugar, was woefully short on fruits and vegetables, ate too many servings of grain and too few servings of protein.

I also had hypoglycemic attacks if I did not eat on time. I remember that panicky feeling of being on transit, far away from a convenience store, and starting to feel shaky and sweaty.  I also developed a number of food intolerances.  I felt anxious about eating out or trying a new recipe for fear of having an ‘episode’.  Not only did I have unpleasant digestive symptoms but also strange neurological ones – sweating, pulse racing, excessive salivation, skin crawling, restless legs, and others.  It was these two problems that made me feel like I needed to understand what was going on in my body and to regain control over my eating. It’s important to begin with a good understanding of digestive problems that affect spoonies (people living with chronic illness).

Firstly, we need to avoid food intolerances (also known as food sensitivities). Food intolerances are defined as a physical reaction to eating certain foods, such as digestive symptoms like bloating, gas, diarrhea or constipation, or stomach cramps.[i] These reactions do not occur because of an immune response to a particular food – that would be defined as a food allergy. In the case of a food intolerance, some people may be able to eat a small amount of the trigger food without having a physical reaction, up until they reach a threshold level. Food intolerances may occur because of the absence of a necessary enzyme (such as lactase to break down lactose sugar in dairy), having irritable bowel syndrome, having a sensitivity to food additives, having a problem digesting certain carbohydrates (acronym FODMAPS), or for no known reason. Food sensitivities may be more common among people living with fibromyalgia and CFS/ME because of the overall sensitization of the central nervous system associated with these conditions. Research indicates that at least half of people with FM or CFS/ME experience significant relief by eliminating certain foods.

How can you figure out what foods you are sensitive to? Naturopathic doctors, integrative doctors and nutritionists can offer tests that pinpoint sensitivities. However, the least expensive way is to do an elimnation diet. You begin by cutting out the most common foods that cause intolerances and any foods that you are suspicious of for a period of time, usually 2 to 4 weeks. These foods may include: dairy, gluten, eggs, soy, corn, sugar, citrus, peanuts, shellfish, and coffee. Then you gradually reintroduce one food type at a time to notice your physical reaction. If your symptoms reappear, then you know you are sensitive to that type of food. In my case, I am intolerant of eggs, red meat, and to a lesser extent, wheat. I am also sensitive to high concentrations of fiber or resistant starch. The elimination diet is best done with the guidance of your healthcare professional.

A second problem associated with the digestive system and chronic illness is the development of Leaky Gut Syndrome. Essentially, leaky gut occurs when the lining of the intestines becomes more permeable, which allows particles of partially digested food or waste to leak into the bloodstream.[ii] Increased permeability occurs because of damage to the tight junctions between intestinal cells. When the immune system encounters foreign particles in the bloodstream, it launches a response, including inflammation. Symptoms of leaky gut syndrome include digestive symptoms, gas, bloating, diarrhea, fatigue, joint pain and rashes. In addition to chronic inflammation, leaky gut syndrome affects the ability to digest food and to absorb nutrients. Furthermore, it compromises the immune system by tying it up responding to foreign particles in the blood, which leaves it less able to respond to actual pathogens. The intestinal lining actually is a significant site of immune activity, but when it is damaged, overall immune function is impaired. How does the intestinal lining become damaged? Through food intolerance, stress, medication, flora imbalance and autoimmune disease. Emerging research shows that several autoimmune diseases share increased intestinal permeability as a characteristic[iii].

In terms of diet, the usual recommendations include treating Leaky Gut Syndrome through clean eating; in other words, avoiding commonly allergenic/intolerant foods, inflammatory foods, pesticides, herbicides, additives, or sugar and rebalancing intestinal flora by consuming probiotics. For autoimmune diseases in particular, some experts recommend the paleo diet, which emphasizes protein and vegetables, while cutting out grains and legumes. For example, Dr. Terry Wahls has written a book on how she reversed her MS through a nutrient dense paleo diet. Supplements that can help to repair the damaged intestinal lining and reduce inflammation include l-glutamine and DGL.

When it comes to diet recommendations, I think the most important thing to remember is that we are all genetically diverse. We will all have unique responses to different foods and there is no one-size-fits-all diet. For example, I feel terrible after eating eggs or after eating a large portion of cruciferous veggies (broccoli, cauliflower, etc) because I have a food intolerance to eggs and  am sensitive to large portions of insoluble fiber. The paleo diet isn’t for me. However, a high-protein vegetarian diet keeps my digestion happy, hypoglycemia at bay, and generally gives me more energy. The only universal truth when it comes to nutrition is that nobody benefits from eating a diet high in processed foods, sugar, sodium or fat. We all feel better on a whole foods diet. It can seem overwhelming to change your diet when you are dealing with the multiple, uncertain symptoms of chronic illness. The potential to improve your quality of life is worth the effort in experimenting to find what works. Here are a few resources to help you get started:

  • 100 Days of Real Food is a resource for transitioning to a diet free from processed foods (includes blog, meal plans, challenge, cookbook) http://www.100daysofrealfood.com/

Read other great blog posts by writers with FMS on the Fibro Blogger Directory http://www.fibrobloggerdirectory.com/

[i] http://www.mayoclinic.org/diseases-conditions/food-allergy/expert-answers/food-allergy/faq-20058538

[ii] https://www.womentowomen.com/digestive-health/healing-leaky-gut-syndrome-open-the-door-to-good-health-2/

[iii] http://www.todaysdietitian.com/newarchives/021313p38.shtml