Category: Health and treatment experiences

Pregnancy and Fibromyalgia: What It Really Feels Like & Top Tips To Manage

Leave a comment

We were so happy and excited when the pregnancy test turned positive last January. I made my husband go out and buy three more tests, just to quadruple check. We had been trying for a long time, and this seemed like a New Year’s miracle. It still does, and I’m incredibly grateful and excited!

Sitting here at 9 months pregnant and reflecting on my experiences so far, I am reminded about how individual our symptoms of illness are, and how this must be true for pregnancy too. However, I hope describing my own experience offers some insights that might be useful for others. When I first tried to find online information or shared experiences in blogs or social media. I didn’t find much. It can be a frustrating and lonely journey sometimes. Needless to say, OBs don’t know much about chronic pain or illness!

How will my illness affect my pregnancy? How will my pregnancy affect my illness? These questions are difficult to answer with certainty. I was very frustrated before I became pregnant that nobody was able to tell me for sure what it might be like, and I felt like I couldn’t prepare properly. Part of the reason that it is hard to answer this question is because pregnancy sometimes alleviates illness symptoms, while other times it makes them more intense. In either situation, however, pregnancy outcomes appear to be normal for women with fibromyalgia.

Improved Symptoms

Pregnancy can improve some illness symptoms! For example, as a result of the protective effect of pregnancy hormones, some people with autoimmune conditions report symptom remission during pregnancy. “During pregnancy your body is less immunosuppressive because it’s making sure not to reject the fetus,” says Dr. El-Chaar. Dr. Howard Sharp, an OB-GYN at the University of Utah Health Sciences Center, where he heads the Pelvic Pain Clinic, explains, “The immune system kind of goes on holiday during pregnancy, which is beneficial to patients,” and so, some women may find their fibromyalgia symptoms actually improve during pregnancy.

Improving symptoms has been my experience for several specific symptoms. For the first time in years, I am able to do what my husband does so irritatingly well: fall asleep as soon as my head hits the pillow. (I also bought a magic adjustable bed base, but more on that in a future post!). For me, sleep has been surprisingly good, even at this late stage when I am more uncomfortable with the pregnancy.

My right knee has been problematic for several years (“patellafemoral syndrome”) and often swells if I over-do things, making me limp. However, I haven’t limped since I became pregnant, despite my increasing weight.

I normally experience pelvic pain, from endometriosis and ilioinguinal neuralgia. This pain has been so much better, maybe from the absence of menstruation, which is a relief.

Overall, my musculoskeletal pain is probably similar to my pre-pregnancy baseline, but it’s different now. Instead of the neck and upper back pain that used to plague me, now I have shin splints and mid-back achiness. My SI joint is easily aggravated, as usual, but my usual glute pain doesn’t bother me. Seeing a pelvic physiotherapist has been incredibly helpful for managing my SI joint pain, and preventing pelvic pain associated with pregnancy

Worse Symptoms

On the other hand, pregnancy has made my other fibromyalgia symptoms worse. My fatigue is substantially higher, especially in the first and third trimester. I need to alternate 2-3 hours of wakefulness with an hour of rest in order to be semi-functional during the morning or afternoon. I now take 2-3 naps instead of 1 per day.

Correspondingly, my brain fog is much foggier, especially around planning, remembering tasks, and follow-through. Entire conversations are sometimes deleted from my mental hard-drive! I also think that I’m more easily overwhelmed by sensory stimulus or chaotic environments.

I have GERD (acid reflux), which overlaps with fibromyalgia. It’s worse in pregnancy, of course, but I also found that it made my nausea and food aversions in the first trimester really terrible. I ended up losing 13 lbs overall! Take nausea and reflux seriously, and get treatment if you are losing weight or it is not bearable. My digestive system got in on the fun as well (all I will say about that is take your fibre and probiotic religiously).

Internal temperature regulation is even more screwy for me, during pregnancy, than usual. I overheat, feel sweaty or clammy, or get chills all the time, and frequent outfit changes seem to be a part of my daily life. I made my maternity outfits more affordable by only shopping at sites like Old Navy or H&M.

Overall, my musculoskeletal pain is probably similar to my pre-pregnancy baseline, but it’s different now. Instead of the neck and upper back pain that used to plague me, now I have shin splints and mid-back achiness. My SI joint is easily aggravated, as usual, but my usual glute pain doesn’t bother me. Seeing a pelvic physiotherapist has been incredibly helpful for managing my SI joint pain, and preventing pelvic pain associated with pregnancy.

My overall functioning is reduced, and I’m more dependent on my husband now. I find standing still to be very uncomfortable (walking is better), so this makes cooking or shopping impossible. We order everything via delivery instead of shopping, and my husband was prepared to do most of housework, which really helps. I was able to walk about 3500 steps per day, and now I’m down to about 1500.

I have fun new pregnancy symptoms like nosebleeds (bring tissues everywhere!), bleeding gums, dizziness (always hydrate!), leg cramps, and swelling, which are a pain to manage on top of all the rest.

I am not alone in experiencing some worsening symptoms. One study[i] found that pregnant women with fibromyalgia experienced worsening:

Top TIps for Managing Fibromyalgia Symptoms During Pregnancy

In the big picture, I am so grateful for the new life growing inside of me. Feeling her move and grow brings me so much joy. However, pregnancy is also a time of stress. It can be overwhelming and draining to handle day after day. That is so much more true for people with a chronic illness.[ii] I’ve become more hyper-vigilant about my symptoms, because there is more to manage, and that is an extra burden. It’s a relief when we can take the pressure off of ourselves to always feel blissed out on pregnancy hormones, happy and expectant, and instead acknowledge that growing a new life is hard work, especially when you have an illness! Returning to the reason I’m going through this, the love I feel for this little one, helps me keep going on tough days. On the whole, I have to say that pregnancy has been much more bearable than I was worried it would be. I was prepared to be essentially bedridden, but instead I’ve been able to keep up with planning and preparing for our baby, and even doing a bit or writing here and there! It makes me feel more positive about my body, and the amazing things it is able to do.

Here are my top tips for managing symptoms during pregnancy:

  • physiotherapy/ physical therapy, especially pelvic if possible
  • Biofreeze topical menthol rub or menthol patches
  • gentle movement like walking or stretching (I have modified my stretches to do in a chair or the bed as opposed to on the floor, which is too uncomfortable for me)
  • proper supports for sitting, like a back rest or office chair
  •  braces like a belly band or SI joint brace for activity
  •  sleeping with supportive pillows or adjustable bed base (I find being in a semi-upright reclining position most comfortable, others use body pillows or wedge pillows)
  • advocate for needed medication

For more information on how to prepare for and manage a chronic illness during pregnancy, here is an excellent guide from the March of Dimes.  If you are interested in learning more about fibromyalgia and pregnancy, start here or here.

[i] Genç, H., Atasever, M., Duyur Çakit, B., Seval, M., & Koç, A. (2017). The Effects of Fibromyalgia Syndrome on Physical Function and Psychological Status of Pregnant Females. Archives of rheumatology, 32(2), 129–140.

[ii] Tyer-Viola, L. A., & Lopez, R. P. (2014). Pregnancy with chronic illness. Journal of obstetric, gynecologic, and neonatal nursing : JOGNN, 43(1), 25–37

What I Wish I’d Known About Flares and Hormones: How Tracking Your Period Can Reduce Pain, Strains, and Injuries

6 Comments

Muscle and joint pain are a debilitating part of chronic illnesses like fibromyalgia, arthritis, and M.E., among others. Ridiculously ordinary activities can trigger muscle and joint strains and injuries in people with chronic illness, but have no effect on healthy individuals. I recently went to physiotherapy with neck and upper back pain. I could feel the ropey muscle spasm and trigger knots causing the pain, which just wasn’t resolving. My physiotherapist asked whether I had been taking any hormones, and I was surprised by the question, because it just so happened that I was. I decided to do some research, and what I found frustrated me. How was it that after years of seeing doctors and researching online, no one had explained the connection between the menstrual cycle and muscular pain to me? This is the beginning of a series on hormones and flare ups that I hope will make this information, buried in scientific journals, more widely available.

We know that, in general, women experience significantly more pain and injury than men, particularly mid-menstrual cycle, around the time of ovulation, when estrogen is high. One study found that the risk of muscle and tendon injury in women athletes is almost twice as high around ovulation than at other times in the menstrual cycle.[1] These injuries included “muscle ruptures, tears, strains, and cramps, as well as tendon injuries and ruptures.”[2] Other studies have shown that women experience more anterior (front) knee pain, ACL injuries (torn knee ligaments), and plantar fasciitis foot pain around ovulation.[3]

But why?

The surprising answer may lie in the impact of ovarian hormones like estrogen. During ovulation, when estrogen peaks, the elasticity of ligaments, tendons, and muscular tissue increases, heightening the risk of strain, pain, and injury.[4]

Estrogen & Your Monthly Cycle: Back to Health Class

Estrogen is a sex hormone most well-known for regulating the menstrual cycle, although it also has many other functions in the body too. Hormones enable communication between different parts of the body.  When hormones are released, they work like keys that fit into receptors on cells, activating or deactivating specific functions.

Let’s go back to high school health class. Your menstrual cycle begins on the first day of your period. Once your period is over, the ovaries begin to produce eggs in small sacs called follicles. The first part of your period, called the follicular phase, lasts about two weeks on average. Estrogen is released from your ovaries, and this stimulates the lining of the uterus to thicken. Estrogen peaks at the end of the follicular phase, triggering a process that results in ovulation, when one mature egg bursts through its follicle.

During the second half of your cycle, called the luteal phase, which lasts about two weeks, estrogen levels are much lower. If the egg does not become fertilized, then this eventually triggers the uterine lining to shed, which is the beginning of your next period, and the start of a new cycle.

The bottom line – estrogen rises during the first half of your cycle, peaking prior to ovulation, and then falls in the second half of your cycle.

Estrogen, Muscles And Connective Tissue

But estrogen also plays an important role in other parts of the body, including connective tissue like muscles, ligaments, fascia, and tendons. The latest research shows that there are estrogen receptors on these connective tissues.[5] Rising or falling estrogen levels communicate messages to these tissues, triggering changes in their form and function.

During ovulation, when estrogen peaks, the elasticity of ligaments, tendons, and muscular tissue increases.[6] This is also true in pregnancy, when the elasticity of your connective tissues increase in order to expand and make space for a growing fetus.[7] When the connective tissue becomes more elastic, it makes joints like the knee, SI joint, and ankle unstable, increasing the risk for injury.[8]

In contrast, when estrogen levels are low, immediately before and during your period (late luteal and early follicular phase), connective tissues become stiffer and more rigid. In turn, joints are stabilized, reducing the risk for injury. Researchers suggest that some biomechanical pain may improve when estrogen is low and connective tissues are less elastic, stabilizing joints .[9] Women who take the pill appear to have fewer injuries, and more consistent pain levels because their hormones do not fluctuate to the same degree.[10]

 Fascia, which is a network of connective tissue made mostly of collagen, encases muscles, organs, nerves, and blood vessels, holding them in place. We know that inflammation of the fascia surrounding muscle tissue may drive fibromyalgia pain,[11] and also, possibly, myofascial (muscle and fascial) pain in other chronic illnesses. Fascia also contains estrogen receptors.

When estrogen is high, the consistency of the fascial collagen changes, becoming more elastic, and stiffens when estrogen is low.[12] Researchers explain that “hormonal imbalance damages myfascial tissue, leading to drastic changes in its constitution in collagen and elastic fibers, and thus modifying its biomechanical properties.”[13]  In other words, hormone imbalances may play a role in chronic pain in muscles and connective tissue. It is possible that imbalances in hormones like estrogen may contribute to myofascial pain and injury in women with fibromyalgia and other illnesses. More research is needed to determine the effect of hormone imbalances on myofascial pain.

But even if you do not have a hormone imbalance, the increased elasticity of your muscles and connective tissues mid-cycle can increase your flares.

Track Your Period To Reduce Your Strains, Pains, and Injuries

Tracking your period may help you to understand how your cycle impacts flares of muscle and joint pain, strain, and injury. Over the course of several months, you may notice that your bad knee, low back ache, foot pain, wrist pain and other overuse strains, which chronic illness amplifies, cluster around ovulation. If true, avoiding significant activities around this time, or pacing yourself more, could help to reduce pain related to strains, overuse, hypermobility, poor posture, and injury (biomechanical pain)..

A few days after you ovulate may be the perfect time for a physiotherapy (physical therapy) appointment or massage, to treat ovultion related flares. Since knowledge is power, the more you can learn about which variables most affect your pain and strain levels can put you in the driver’s seat for managing more effectively. Tracking your period and ovulation might be the first step.

There are many period tracker apps that can help you to log your cycle. To work out the length of your menstrual cycle, record the first day you start bleeding (first day of your period). This is day 1. The last day of your cycle is the day before your next period begins. Pinpointing ovulation is a bit harder. If your average menstrual cycle is 28 days, you ovulate around day 14. But this varies significantly from woman to woman and even cycle to cycle.

You can use an ovulation calculator like this one to roughly figure out when you ovulate, which is usually 14 days before your period begins. Recording body changes, like temperature, that fluctuate through the month, can be used to predict ovulation. Or, you can purchase ovulation predictor kits at the drugstore that include urine test sticks to pinpoint ovulation. Learning more about your body and how it works is an empowering step women can take to manage their health.

Works Cited

Fede, C. e. (2019). Sensitivity of fasciae to sex hormone levels. PLoS One , 14 (9).

Liptan, G. e. (2010). Fascia: a missing link in our understanding of the pathology of fibromyalgia. Journal of Bodywork Movement Therapy , 14 (one), 3 – 12.

Marcus, J. (2021, April 5). How tracking your period can lower your injury risk. Retrieved April 20, 2021, from Runners World: https://www.runnersworld.com/health-injuries/a35994126/period-tracker-for-runners/

Petrofsky, J. (2016, April). Influence of estrogen on the plantar fascia. Retrieved April 24, 2021, from Lower Extremity Review: https://lermagazine.com/article/influence-of-estrogen-on-the-plantar-fascia#.YIb71wXgmGI.mailto

[1] (Marcus, 2021)

[2] (Marcus, 2021)

[3] (Petrofsky, 2016)

[4] (Fede, 2019) (Petrofsky, 2016)

[5] (Fede, 2019)

[6] (Fede, 2019) (Petrofsky, 2016)

[7] (Fede, 2019)

[8] (Petrofsky, 2016)

[9] (Fede, 2019)

[10] (Petrofsky, 2016)

[11] (Liptan, 2010)

[12] (Fede, 2019)

[13] (Fede, 2019, p. 8)

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

Leave a comment

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

              Dr.: How would you rate your pain?

              Me: Which one?

              Dr. Ummm….Overall.

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

              Dr.: ???????????

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

I’ve Got PainS

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

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

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

My Pain Isn’t Your Pain Isn’t My Pain

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

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

Missing The Impact Of Pain On Daily Functioning

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

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

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

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

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

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

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

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

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

3 Comments

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

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

 

sarah

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

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

 

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

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

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

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

 

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

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

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

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

Confronting Chronic Pain:

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

.

 

Why It’s Okay Not To Work When You Live with Chronic Illness

15 Comments

Having an illness like fibromyalgia is not a reflection of your character. No one works harder than someone with a chronic illness – every day is a struggle to work through symptoms and do your absolute best to be where you’re needed.

Why It's Okay Not to Work When You Live With Chronic Illness

The biggest change in my life that followed my fibromyalgia diagnosis was leaving my career because I just physically could not keep up any longer with the demands of the job. I’ve never felt more conflicted about making a decision. On the one hand I felt relief – it was incredibly stressful to constantly fail to meet expectations while working harder than ever before. On the other hand, I felt like I was losing a core part of my identity. After all, a career is not just what someone does between 9 to 5 – it’s often how a person understands and defines themselves.

Have you ever noticed that the first question someone asks you after being introduced is “so, what do you do for a living?” It’s common to answer the “what do you do for a living” question by saying “I am a ___“.   In our society, an occupation is not just what you do but who you are.

We place a moral value on being hard-working – putting in daily effort to provide for your family and contribute to your community – as long as you get paid for it. I still dread meeting new people and having to answer the what do you do question. It’s hard not to internalize the negative judgments about people who don’t work – usually variations on ‘they’re lazy, incompetent, and a burden to society.’ In Canada, where I live:

  • 14% of people with fibromyalgia reported that they were permanently unable to work (compared to 2% of the general public);
  • 43% had annual personal income less than $15,000 [poverty line] (compared to 29 per cent of the general public) (Parlor).

“Our society is largely driven by money, profit, and earning power, and this makes our professions a major part of how we identify.  So if you lose your job, you can easily lose your identity, too” (Norris, 2016). I felt so disoriented in the months after I left my job. It was hard to figure out who I was now and how I fit in.

As I began to engage online  with other people living with chronic illnesses and disabilities, I learned more about how to understand work and disability in our society, and what that meant for me as I transitioned to staying at home.

Definition of Disability:

Initially, the label of ‘disability’ did not resonate with me. I associated it with a permanent condition like vision-loss rather than a fluctuating illness like fibromyalgia. But once I learned the definition of disability, it became clear how it applied to my situation. According to the American Disability Association, a disability is a physical or mental impairment that substantially limits major life activities (Blahovec).

Fibromyalgia impairs my abilities by causing pain, fatigue and brain fog. The lack of truly flexible accommodation in campuses/workplaces, like fixed work hours, deadlines and location, combined with stigma about invisible illnesses/disability, prevents my full participation in society.

Is Disability an Individual Problem?

The most common way we look at disability in our society is through the lens of ‘normal versus abnormal’. A person with a disability is different from ‘what is normal’ because of their limitations. This understanding of disability is often called the medical model – disability is an abnormal, medical condition affecting an individual (Scope).

We often hold up ‘inspirational’ examples of individuals with disabilities who ‘overcome’ their limitations by ‘fighting through’ the challenges they face, all the while having a good attitude (Abilities). The flipside of this is if you go about your business, pacing yourself within your limitations, you may be judged for “playing the victim” by “giving in” to your disability!

Disability as a Social Issue

If we were able to create an inclusive society, which removed the barriers that restrict life choices for people with disabilities, then everyone could participate equally in our communities. “The social model of disability says that disability is caused by the way society is organized, rather than by a person’s impairment or difference” (Scope). Barriers can include attitudes (stigma, discrimination), policies (workplace accommodations) and physical design (accessible entrances, transportation). For chronic illness advocates, joining the disability movement can help to “advance not only the goals for people with similar challenges, but for the whole disability movement” (Blahovec).

After I learned about the medical model versus the social model of disability, I felt like a light bulb went on inside my head. Here’s what conversations around disability taught me about living with fibromyalgia, and I think applies to anyone who needs accommodations at work, or no longer works:

  • Having an illness like fibromyalgia is not a reflection of your character. No one works harder than someone with a chronic illness – every day is a struggle to work through symptoms and do your absolute best to be where you’re needed.
  • News flash for your inner critic – not being able to participate fully in work/school is as much about ablest barriers as it is about physical limitations, and neither of those things is your fault!
  • If your contribution to the world is not in the form of paid employment, it is no less valuable than anyone else’s. The world is a better place because you’re in it!
  • Finding your identity outside of career makes you a more well-rounded person, whether it’s in relationships (like being a parent) or passion projects (creative expression, writing/advocacy).
  • Pacing your activities within your limits is working smarter. There is no need to “overcome” or be “inspirational” – just living your life the best way you can is all you need to do.
  • Having an illness or disability is pretty commonplace. Living with fibromyalgia is not your individual problem, but just another thread in the fabric of the human experience overall (we need to normalize life with fibromyalgia rather than pathologize it!)

(This article originally appeared in the June 2018 edition of UK Fibromyalgia Magazine)

Resources

Abilities (Disability as Inspiration: Can Greater Exposure Overcome this Phenomenon?)

Sarah Blahovec (HuffPost Blog: I have a Chronic Illness. Here’s Why I Embrace the Label ‘Disabled’)

International Paralympic Committee (UN Convention on the RIghts of Persons with Disability)

Margaret Parlor (Canadian Women’s Health Network: Understanding Fibromyalgia)

Scope (The Social Model of Disability)

Fibromyalgia Awareness Day: How a Fibromyalgia Diagnosis Changes Your Life Story

4 Comments

By Katarina Zulak at Skillfullywell.com

After Diagnosis - How Fibromyalgia Changes Your Life Story

An illness like fibromyalgia permeates every aspect of your life – it forever alters the trajectory of your story. For this year’s Fibromyalgia Awareness Day, I wanted to reflect how my diagnosis changed my path, both in negative and positive ways.

I have written about my story before, but here I want to talk about the impact my diagnosis had. Initially, all I could see afterwards was loss in every direction, as if a tornado had ripped through my life, reducing everything I had dreamt, all my castles-in-the-air, to rubble. There would be no graduation from my PhD, no career in international development, no travelling around the world, no more outdoor adventures, no parties, no financial independence, and no buying a house, among many other no’s.

Fibromyalgia changed most of my relationships. I now depend on my husband for many daily tasks, household chores, and finances – I am a dependent and he is my caregiver. I have lost friendships, and I see the friends I still have less frequently then I would like.

Grieving over the losses caused by chronic illness is a different process than the usual stages of grief people experience. When I wrote a post on grief after diagnosis, I found the concept of infinite losses very helpful for illuminating this:

Most often, grief is a reaction to a single, time-limited event… Grief associated with chronic illness, however, is more complex for many individuals.  For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses (Jackson, 2014).

But my story doesn’t end there. In the trials I’ve experienced on my illness journey, I have forged a stronger, wiser and more patient personality. Fibromyalgia stripped me down to my most basic self and forced me to find my identity independent of career, relationships and external activities.

The positive gains that I’ve experienced after diagnosis cannot be measured in dollars, or posted as pretty pictures on social media. Instead of outward experiences, chronic illness has directed my journey inward. For the first time, I have cultivated a relationship with myself.

Mindfulness meditation was the turning point for me. As I came to know the content of my own heart and mind, and began to tend to my inner self like a gardener cultivating a flower bed, I learned that growing in wisdom was a worthwhile goal to pursue. People on the outside may not appreciate my efforts, and I might not have material worth to show for it, but my inner peace is a higher reward than any external validation.

Taking in the simple pleasures of an ordinary day has enriched my life – tuning into sensory experiences like the warmth of sunshine on your skin, the aroma of coffee brewing in the morning, or the sound of bird song. Learning to savour the little moments of closeness with people I love on a daily basis is one of the most important lessons I’ve learned.

Difficult moments happen daily, triggered by pain, difficult emotions, and frustrating appointments, among other things. I’ve come to see these like thunderstorms, that eventually pass, just like the weather. It helps me to read less into those thoughts and feelings, to stop over-analyzing or ruminating on them, and eventually to let them go.

Beginning to accept myself, despite my mistakes and missteps, and feel compassion for my body, even when it lets me down, has probably made me a stronger, more patient and compassionate person. I know I treat those around me better because of it.

Being a better person is kind of the point of living your life, after all. I’m not trying to say that developing fibromyalgia was worth it, because I don’t buy into that “think positive” prescription. But what I aim for is a quote I read somewhere along the way:

“it might not be the life you planned, but it’s a good life nonetheless”.

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

2 Comments

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!

 

 

 

 

 

Hormonally Challenged: What You Need To Know About Adrenal Hormones, Fatigue, and Fibromyalgia

12 Comments

If you have fibromyalgia and want to reduce your fatigue, this is what you need to know about the critical link between your sleep/wake cycle and adrenal hormones. Your adrenal glands play a vital role in determining your daily energy/fatigue cycle because they produce the important hormones cortisol and DHEA.

The Critical Link Between Adrenal Hormones, and Your Sleep/Wake Cycle

When I got the results of my adrenal function test, I found the explanation for my daily energy and fatigue cycle. This test measures the functioning of your adrenal glands, which are responsible for regulating the production of several critical hormones, including cortisol and DHEA. It can help you figure out your daily energy/fatigue cycle so you can modify your treatment and pacing decisions to best effect.

To be clear, I am not suggesting that the diagnosis of adrenal fatigue,  a controversial condition among medical doctors, is the same as fibromyalgia fatigue. Instead, I believe that research has demonstrated the important role hormones, like cortisol, melatonin and DHEA, play in your daily circadian rhythm (sleep/wake cycle).

Abnormality in circadian rhythm of hormonal profiles has been observed in [fibromyalgia]. Moreover, there are reports of deficiency of serotonin, melatonin, cortisol and cytokines in FMS patients, which are fully regulated by circadian rhythm (Mahdi, et al., 2011).

These hormones are often deficient in people with fibromyalgia. Since cortisol and DHEA are produced by the adrenal glands, I think it is correct to say that ‘adrenal hormones’ are part of the fibromyalgia fatigue puzzle.

What is an Adrenal Function Test?

The test involves taking saliva samples four times during one day (before breakfast, lunch and dinner and at bedtime). My naturopath gave me a kit with four test tubes to spit into, and a plastic envelope to mail the samples across the country to Rocky Mountain Analytical labs (weird, right?). They tested my saliva for the cortisol level from each sample and graphed how it fluctuated during the day. I also had my overall DHEA level tested.

What is Cortisol and Why Should You Care?

Cortisol, also known as the ‘stress hormone’s is produced by the adrenal glands (endocrine glands that sit on top of the kidneys). You may have heard of cortisol and its role in the ‘fight or flight’ response to stressful situation – when the body releases high levels of cortisol , alongside adrenaline, to initiate that heart-pounding mode, pumped up feeling you get in a crisis.

But cortisol also plays a vital role in day-to-day functioning.  Cortisol is released in the morning to help you become alert and focused. It is supposed to decline gradually during the day so that by evening you feel sleepy and ready for bed. Melatonin, the ‘sleep hormone’, rises before bedtime and reduces cortisol production by the adrenal glands. However, in women with fibromyalgia, night-time melatonin has been found to be abnormally low and night-time cortisol abnormally high, probably leading to poor sleep quality.

The green shading on the graph in Fig. 1 shows the ideal downward curve from morning to night. There is a normal range in the population, with people on the upper end going from 7.0 to 1.3 ng/mL from a.m. to p.m. and people on the low end of the range going from 1.0 to 0.2 ng/mL.

In some studies, a pattern of low daytime cortisol and high night-time cortisol is characteristic of a disordered circadian rhythm in some people with fibromyalgia.

 

Fig 1 My Cortisol levels during the day

Fig 1 My Cortisol levels during the day

My results: Mid-afternoon Slump and Energetic Evenings

You can see that my results are all off (above, the dark line connecting dots): high in the morning, low in the afternoon and back up again in the evening. I start the morning at 2.8 ng/ml, decrease to 1.4 by mid-afternoon, then increase back up to 2.6, and finally taper off at 1.0 ng/mL at bedtime. This explains my mid-afternoon slump and energetic evenings. Dr. Love also pointed out that I go from being in the bottom 50% of the normal cortisol range in the morning and afternoon, but by evening I am in the upper 50%, and trying to fall asleep with a relatively high level (l.0 ng/mL cortisol). This is probably contributing to my night time insomnia.

Yes, my results are in the normal range, but fibromyalgia involves increased central nervous system sensitization. My pattern of cortisol production is abnormal and I believe that a sensitized nervous system can interpret sub-optimal levels as intense fatigue.

How To Balance Your Cortisol Levels to Improve Energy

Be wary of many adrenal supplements that lower cortisol – if you have FMS your problem might be cortisol levels that are already too low.  I need to boost my cortisol levels in the afternoon and reduce them in the evening. You can read about my favorite adrenal boosting supplements here.  They include Vitamin C, B5, licorice and rhodiola. For night-time cortisol lowering, I like to use time-release melatonin to improve my sleep.

There are also important lifestyle changes you can make to balance your cortisol levels and improve your fibromyalgia symptoms (New Life Outlook). For example:

  • Relaxing music. Enya is still putting out the tunes, guys. Play it all day or take a break and get lost in it. At a nice low volume, of course.
  • Meditate. Grab your heating pad and a timer. Even just five minutes a day can keep major stress away.
  • Acupuncture. Once a week or once a month, for body and mind relief, I swear by those magic needles!
  • Exercise. Nothing too intense for me. I work with light weights and a slow pace.
  • Eat clean. The more you do it the better you’ll feel. Your body will thank you for not having to work so hard.
  • Consistent sleep schedule. Your body has a natural rhythm, just like Enya. Listen to it… Just like Enya (New Life Outlook).

 What is DHEA and Why Should You Care?

Fig. 2 The numbers

Fig. 2 The numbers

DHEA is produced in the adrenal glands, and is a precursor hormone for estrogens and androgens (male and female sex hormones). This hormone helps to counter the stress effects of cortisol in some tissues, such as the brain and heart, and supports a healthy immune system. It is an important factor in balancing your cortisol levels. Studies have demonstrated that DHEA supplementation can help improve mood and sexual interest in women with adrenal fatigue. It’s role in fibromyalgia is unclear:

A small study published in 2012 suggested that DHEA levels may be low in post-menopausal women with fibromyalgia and that lower levels were linked with reduced pain threshold and tolerance and several measures of illness severity. However, studies have been inconsistent as to whether FMS involves low DHEA levels (VeryWell).

My naturopath recommended 1 start with 5 mg per day (a fairly low dose). I found that my energy is more sustained, even on days where I slept poorly. Processed wild yam and maca root can also increase DHEA.

Update: because I have endometriosis, boosting my estrogen by taking DHEA was worsening my pain levels, so I don’t recommend it for women with endometriosis, fibroids or breast/ovarian cancer. 

Instead, I now take rhodiola when my fatigue is high. Rhodiola is considered to be an adaptogen, and studies demonstrate that taking this supplement improves stress tolerance by “influencing key brain chemicals, such as serotonin and norepinephrine, and natural feel-good opioids such as beta-endorphins” (Life Extension Magazine: Rhodiola).

A Word of Caution About Balancing Hormones

One final note: “In advanced stages of adrenal fatigue, when the body is already exhausted of nutritional reserves, it is inadvisable to take supplements that may stimulate the adrenal glands. Doing so, would be like stepping on the gas pedal in a car that has no gasoline in it. Not only will you not get anywhere, it can actually hurt the car” (Dr. Lam). It’s best to consult with your healthcare provider and to educate yourself about improving your energy by supporting your adrenal glands rather than pumping them up with a bunch of supplements.

I was  made aware of a great new book about Adrenal Fatigue called The Adrenal Fatigue Solution by Dr. Eric Wood and Fawne Hansen. I had previously read a book on adrenal fatigue several years ago, but a lot of research has been done since. This book presents the research in an accessible, easy to read way, along with naturopathic treatments. They also have a helpful website http://adrenalfatiguesolution.com/  with a lot of information there on adrenal insufficiency and treatments. (For full disclosure, the authors contacted me to review the book and provided me with a free copy. I genuinely feel it is a helpful resource on the topic, and have not been compensated for saying so).

Resources

Fatima, G., Das, S. K., Mahdi, A. A., Verma, N. S., Khan, F. H., Tiwari, A. M. K., … Anjum, B. (2013). Circadian Rhythm of Serum Cortisol in Female Patients with Fibromyalgia Syndrome. Indian Journal of Clinical Biochemistry, 28(2), 181–184. http://doi.org/10.1007/s12291-012-0258-z

Life Extension (Rhodiola)

Dr. Lam (Understanding Rhodiola Health Benefits and Adrenal Fatigue Syndrome)

Life Extension (Stress Management)

Mahdi, AA., et al. (2011). Abnormality of circadian rhythm of serum melatonin and other biochemical parameters in fibromyalgia syndrome. Indian J Biochem Biophys.  Apr;48(2):82-7.

New Life Outlook (Cortisol and Fibromyalgia)

Teitelbaum, J. (2007). From Fatigued to Fantastic. Penguin Books: NY.

VeryWell (DHEA Supplementation in Fibro)

How to Plan a Chronic Illness-Friendly Wedding

24 Comments

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

KATIE AND GEORGE_171

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.

KATIE AND GEORGE_9

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.

KATIE AND GEORGE_18

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!

KATIE AND GEORGE_108

 

Probiotics for Fibromyalgia: Help Your Gut Help You to Boost Immunity and Relieve Anxiety

13 Comments

Can probiotics help treat fibromyalgia? According to science, probiotics can strengthen the immune system, which is compromised in people with fibromyalgia. Probiotics may help relieve stress, anxiety and depression– which are common symptoms in fibromyalgia. In other words, take care of you gut, and it will take care of you!

Probiotics for Fibromyalgia: Help Your Gut Help You

Can probiotics help treat fibromyalgia? Despite all the research being done on friendly gut bacteria, there are actually no studies to date that directly answer that question. But when you dig into the science a little deeper, you can find a wealth of studies that support the use of probiotics to treat fibromyalgia symptoms. In other words, take care of your microbiome (the ecosystem of gut bacteria), and it will take care of you!

Probiotics Can Get Your Immune System into Fighting Shape

Ever since I developed fibromyalgia, I dread getting sick. Infections trigger flare-ups at best and relapses at worst. Many people with chronic illnesses report getting sick more frequently than when they were healthy, and believe that their immune systems are compromised.

This is supported by the science. In the case of fibromyalgia, researchers were able to develop a test for diagnosing the illness by examining cellular immunity. The study proved that people with fibromyalgia have disregulated immune function at the cellular scale. Participants with fibromyalgia were found to have increased chemical messengers called cytokines, which are involved in activating inflammation in the body (Sturgill, et al. 2014).

Strengthening the immune system using different means, including by taking probiotics, seems like a really good idea in the face of this kind of evidence. Up to 70% of the immune system’s activities occur in the digestive tract. There are more than 400 species of bacteria in the gut, which altogether add up to more than 100 trillion bacterial cells. So how do probiotics help keep your immune system in fighting shape?

  • Probiotics protect the lining of your intestines from harmful germs and toxins (Yan et al., 2011). They promote the health and integrity of the cells that line the barrier wall of the gut, keeping germs and toxins from being absorbed into the bloodstream. In the intestines, friendly bacteria compete with harmful bacteria, preventing them from growing out of control. Some probiotics even produce substances to kill harmful bacteria – this is a take no prisoners kind of fight!
  • Probiotics communicate with the immune system to strengthen its response to infections and enhance its repair of intestinal damage. (If the nerd in you wants to know, probiotics interact with intestinal wall cells in complicated ways, such as by releasing signalling proteins that stimulate the immune system). Friendly bacteria can act like guards calling for backup, priming the immune system to prevent and treat diseases, like allergy, eczema and viral infections.

Probiotics May Help Relieve Anxiety and Depression

As people living with fibromyalgia and know all too well, the challenge of living with chronic pain on a daily basis is very stressful and raises difficult emotions. Depression commonly occurs alongside chronic pain (Holmes, 2012). Research has demonstrated that anxiety disorders are more common in patients with chronic pain conditions like arthritis, fibromyalgia migraine and chronic back pain (Asmundson, 2009).

What does this have to do with friendly bacteria? Scientists are beginning to uncover a fascinating gut-brain connection. There is exciting preliminary research on the potential benefits of probiotics for mental health. Researchers call these types of friendly bacteria “psychobiotics.” One study looked at the effect of consuming probiotics on depression versus a placebo. After eight weeks, participants who took the probiotic had significantly lower scores a depression inventory test, as well as lower levels of inflammation (University Health News). If you’re interested in knowing which strains were used so you can pick a similar supplement for yourself –this study used 2 billion CFUs each of Lactobacillus acidophilus, Lactobacillus casei and Bifidobacterium bifidum.

How can probiotics act like “chill pills”?

  • Some probiotics are able to produce the same kind of compounds that the nervous system uses as chemical messengers. For example, gut bacteria can produce serotonin, which is a feel-good neurotransmitter released in the brain and nervous system when we are happy.
  • Probiotics can help regulate inflammation in the body. As you may know, excessive inflammation is linked to many chronic diseases, including depressive disorders.
  • Friendly gut bacteria interact with our hormones, and may help to turn off the response of the stress hormones cortisol and adrenaline.

Take Care of Your Microbiome And It Will Take Care of You

It’s important to remember that research has only studied a few strains of probiotics, among the many thousands that make up the human microbiome. It’s clear that each type of bacteria causes different effects in the body. Some of these effects are contradictory – some probiotics turn up the activity level of the immune system, while others turn it down. The sheer complexity of it all makes it difficult to draw any hard and fast conclusions. What is clear, however, is that having a diverse and replenished microbiome improves overall health.

The best way to take care of your microbiome is to regularly consume fermented foods rich in probiotics, and to take a probiotic supplement. It’s also vital to consume foods that help to “feed” the probiotics in your gut. After all, friendly bacteria need to eat too. Some foods help to nourish probiotics more than others, and these foods are called prebiotics. Some of the best prebiotics to regularly include in your diet are: dandelion greens, garlic, onions, leeks, asparagus, unripe bananas, barley, oats, apples, flax seeds, wheat bran, seaweed and cocoa. Prebiotics are often better consumed raw and cooked.

The best fermented foods to incorporate into your diet are:

yogurt: preferably a natural yogurt without the high sugar content of flavoured yogurt

  • kefir: a fermented milk product like drinkable yogurt
  • kombucha: tastes like a fruit flavoured ice tea, and is a fermented black tea and sugar drink
  • sauerkraut or kimchee: both are types of fermented cabbage
  • miso: a savoury fermented soybean product, usually used to make soup
  • tempeh: a fermented soybean product with a nutty flavour

Resources:

Asmundson, G. and Katz., J. (2009). Understanding the concurrence of chronic pain and anxiety: state-of-the-art. Depression and Anxiety (26)888-901.

Healthline (The 19 Best Prebiotic Foods You Should Eat)

Holmes, A., Christelis, N., and Arnold, C. (2012). Depression and chronic pain. MJA Open Suppl (4):17-20.

Psychology Today (Do Probiotics Help Anxiety?)

Psychology Today (The Gut-Brain Connection, Mental Illness, and Disease)

Sturgill, J. et al. (2014).Unique Cytokine Signature in the Plasma of Patients with Fibromyalgia. Journal of Immunology Research.

University Health News (The Best Probiotics for Mood)

Yan, F., and D. B. Polk (2011). Probiotics and Immune Health. Current opinion in Gastroenterology 27 (6): 496-501.

 

Find other fibro blog posts on the Fibro Blogger Directory Friday Link-up