Tag: chronic pain

New Parents With Pain: Top 8 Ways to Reduce Pain While Caring For Your Baby

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We’ve just put our little one down for the night and she will *hopefully* sleep for another 6 hours, until her one (and now only!) night feed. She is almost 7 months old, which seems incredible to me. How did the time go by so fast? But also, how did we figure out our way through? I remember the nights of waking every hour or less, the seemingly never ending crying sessions, the steep learning curve – and wondering how we would survive all in one piece. I think many new parents wonder the exact same thing! But it is more challenging when one of those parents live with a chronic illness or chronic pain condition, like I do.

You have one big positive working for you as a new parent with a health condition that makes you more ready for this than most first time parents. You know how to navigate tough situations that require perseverance. Fatigue? Done that. Constant doctor’s visits? Yup. Feeling overwhelmed by a massive life change or going stir crazy stuck at home? Been there. It’s very different, of course, but having navigated the challenges of your illness makes you much more prepared to mentally handle the stress of parenting and more resourceful in finding solutions. You will get through the difficulties, because you are a survivor and because you have to. Just look at that adorable little monkey (not sleeping) beside you for all the motivation you need!

Unfortunately, I found that despite all of my online searching, it was really hard to find tips or strategies to help new parents living with illness. There are probably thousands of blog posts that could be written on this topic alone, so here I can only try to make a start.

The Comfortable Carrier You Bought Can Be For Your Partner: In my case, my husband uses our carrier the most, and this gives me a break. . Sometimes a bouncer or swing just doesn’t cut it and our baby wants a snuggle. Since my husband works from home, when I need a rest , we pop our daughter in it and he works at a standing desk! Other times it allows him to do double duty, washing dishes while looking after her while I am resting. Bonus: Since our baby has bad reflux, the carrier allows her to be upright, which reduces her heartburn.

Core Strengthening Or Pelvic Physical Therapy/ Physiotherapy Can Help: Recovering from pregnancy and delivery is difficult. Your postpartum recovery could benefit from pelvic physiotherapy if you have issues like peeing when you sneeze abdominal muscle separation, pelvic pain, or back pain. Pelvic physio treatments have really helped me to improve SI joint pain during and after having my baby, so I recommend it if you have similar challenges.

Try A Belly Band: A belly band may help provide stability for the 8 weeks after delivery, according to some physical therapists. These bands support your postpartum abdominal wall and pelvis while you heal your core after birth. Although a belly band didn’t do much for me, we are all different, so it is worth looking into.

BioFreeze Is Your Friend (Or Other Menthol Patches/Rubs): Biofreeze is great. It really helps muscle pain and is the best non prescription treatment in my opinion. I also use menthol patches for persistent pain, such as back pain overnight. It’s a great non-prescription addition to your usual medication, stretching and strengthening routine. Plus it’s safe while breastfeeding.

Rest/Stretch Your Back While Baby Does Tummy Time Or Is On Their Play Mat: While your little one is doing tummy time, or playing on their activity mat, take time to stretch or rest your back. I do some stretches that target the pain carrying baby has specifically caused: cat/cow yoga poses, glute figure 4 stretch, pectoral “floor angel’ stretch, hugging knees to chest, and side bends. Lying with your feet on a chair can also relieve back pain.

Play on the Bed: On a day where my pain or fatigue are high, I put our baby on a blanket on the bed and lie down on my back beside her. She can chew on a teether, kick, or do tummy time while I rest my body.

Sing songs If Playing Or Carrying Is Too Painful: Sometimes you need to have an alternative way to interact that doesn’t involve picking up the teether for the 100th time, or anything physically repetitive or strenuous. My little one loves singing time. I don’t have an amazing voice, but she doesn’t care about that! We love listening to Charlie Hope on Spotify (the best children’s singer!). Other days we put on the Beach Boys and she kicks away happily!

Change Position as Often As You Can: Change your activity and play location often- every 10, 15 or 30 minutes. Discomfort often builds by locking into one position, like sitting in a certain chair for a long period. It soothes the nervous system to change your pose frequently, as able. Sit in a chair to read, then lie on the bed to sing, then walk around together looking at items in the house. Baby can hang out in their bouncer or swing if you need a break to rest your body in between.

Find a Comfortable Way To Sit On the Floor: Babies inevitably end up on the floor for much of the time. This can be uncomfortable if you have pain. When I’m sitting on the floor, I use a cushion placed near the wall or something I can lean my back against. I’m looking into getting a floor chair. Literally a chair, without legs, so you can sit with back support on the floor. Genius!

Top 5 Questions To Ask Before Starting IVF With A Chronic Illness To Make It As Painless As Possible

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by Katarina Zulak

IVF is a long and invasive medical intervention, which can leave you wondering, “Can I really get through this with fibromyalgia?” That was my primary concern when I started the process in 2020.

The answer is likely yes, with certain accommodations. My doctor helped to facilitate the process to make it easier for me in some ways. I also had to learn the hard way that other things could have been done differently. These are a list of the questions I wish I had known to ask before starting IVF.

Fibromyalgia does not directly affect fertility. However, many women with fibro may also have endometriosis, which is a ‘common overlapping condition’, and endometriosis is a cause of infertility. Research also suggests that the frequency of PCOS, another infertility condition, may also increase in women with fibromyalgia.

Regardless of the cause, women with fibromyalgia and infertility might consider trying IVF at the recommendation of their doctor. IVF, or in-vitro fertilization, is defined as “A procedure in which eggs are extracted from a woman’s ovary and mixed with sperm in a lab dish to allow fertilization. The resulting embryos are placed back into the woman’s uterus in hopes of establishing a pregnancy.”The odds are in your favour, with a 55% success rate for women under 35 after going one egg retrieval, 41% for women 35-37, and 28% for women 38-40. This is so much better than the 0% chance you feel you have after trying for so long on your own.

 Before we get to the questions, we need to define a few terms. All IVF procedures involve the following steps:

  • Ovarian Hyperstimulation (a.k.a. Making Eggs):
    The production of multiple eggs by giving medications. Ovaries normally produce only one mature egg each month and fertility medications will make more than one egg. The process is monitored using ultrasounds.
  • Egg Retrieval:
    A procedure used to collect the eggs from a woman’s ovary. The procedure is performed under anaesthesia or sedation. A needle is passed under ultrasound guidance into the ovary. The eggs are collected and given to the embryologist.
  • Embryo Transfer:
    The procedure where the embryos are placed into the uterus with the intent to make a pregnancy.

Choosing an IVF Protocol: The Long and the Short of It

There are two different protocols when it comes to ovarian hyperstimulation, or, stimulating the development of multiple eggs using fertility medications. These two protocols are called the “Short Protocol” and the “Long Protocol”. The main differences between the two are the length of time they take, and the type of fertility medications they use. Your doctor will decide between them based on which one is most appropriate for your infertility condition.

Ask your doctor: “What is the shortest, most effective protocol for me, so I can minimize the toll this takes on my body?”

The Long Protocol (or “Long Agonist” Protocol) lasts 6 or more weeks. This protocol is at least two weeks longer because it starts the menstrual cycle before your egg retrieval cycle begins. During this time, you take a fertility medication like lupron to “down-regulate” your ovaries (put simply, to turn off ovaries before stimulating them, which gives the doctor more control over the process).

Long IVF protocols require more days of medication and more injections than the Short Protocol. Since your hormones are being down-regulated over more days, you’re more likely to have side effects over a longer period of time. However, there is discretion within the long protocol on the duration of time you need to take lupron for. Your doctor can work with you to minimize whichever protocol you are on, so as to mitigate the toll it takes on your body.

The Short Protocol (or “Antagonist” Protocol) usually lasts about 4 weeks, starting with Day 1 of your period and ending with a pregnancy test. Down-regulation takes place at the same time as egg hyperstimulation, so the overall process is shorter. Fertility medications usually start in the first few days of the egg retrieval cycle. For me, the short protocol worked both in terms of my fertility issues, and in terms of managing my chronic illness by minimizing the amount of time I spent on IVF medications.

IVF Medication Dosages

The key differentiation between these protocols is the type of medication you are prescribed. Yup, these are the ones you have to inject (more on that below). My doctor explained to me that there was a range in the dosage level she could prescribe for the medications I was injecting. In order to minimize the side effects, she recommended the lowest effective dose.

Ask your doctor: “What is the dosage range you would consider for my IVF medications? What is the minimum effective dose that you think would produce eggs, but minimize side effects?”

 I was fortunate that my doctor felt confident we would make healthy embryos at that lower dosage. The trade-off was that a higher dose would likely result in more embryos…and more side effects. I was torn. My husband asked me how many embryo transfers (rounds of IVF) I felt that I was capable of doing. As much as I wanted a baby, I had to acknowledge 3-4 embryo transfers was the upper limit that I could subject myself to. So, we decided to go with the minimum effective dose, and we got 3 embryos.

You may need to inject yourself for between 7-14 days. Ouch! Actually the needle isn’t that painful, but the medication may sting, depending one what it is. However, there are a few steps you can take to minimize the pain. Try icing the area of your abdomen for 5-7 minutes before administering the injections.  Alternatively, ask your doctor about an over the counter numbing agent.

Fertility Monitoring:

During the egg retrieval cycle, the clinic will ask you to come in multiple times to draw blood, in order to check hormone levels, and do ultrasounds to see how your egg follicles are progressing. These are important appointments! However, you may not need to go in for the 8-10 visits they ordinarily suggest.

Ask “Would it be possible to limit my fertility monitoring appointments, to accommodate my illness?”

My doctor put a note in my file to limit the visits, so we did what was essential for testing and imaging, but not anything else. I didn’t go in as frequently, for example, until we were closer to triggering ovulation. I went in about 5-6 times. This was such a helpful accommodation, so I encourage you to ask about it.

Picking Up Your Medications:

Your doctor may vary your IVF medication dose level based on your test or imaging results during the cycle, and they will determine when to trigger ovulation based on your results. 

When this happened to me, I found out that the only place I could get the ovulation trigger medication was at the clinic. It was rare enough that regular pharmacies didn’t carry it, and the ones that did were out of stock. So this meant I commuted for 1 hour to get to my appointment in the early morning, went home to wait for my blood test results, and then they wanted me to come back to the clinic to pick up the new medication, and go home again. This would have required 4 hours of travel time in one day! Definitely not chronic illness friendly. After a many conversations with the staff, I convinced them to  give me the medication before I left after my ultrasound and blood work, but I promised not use it unless they told me to later in the day, after the blood work results came back.

Ask them ahead of time where you can pick up your prescriptions, whether you need to arrange for two visits in one day to the clinic in the event you might need a to pick up a new prescription, or if someone else could pick them up on your behalf later in the day. Alternatively, they (or you) can call ahead to check on the stock at your local pharmacy. All of this requires them to tell you about possible scenarios ahead of time.

Ask: “Where and when do I pick up my prescriptions? Is there a scenario where I might have to come in twice in one day, such as to pick up a prescription after my test results come back? What accommodations can we put in place to help me plan ahead, such as a notification that this might happen ahead of time?”

Fresh vs Frozen Embryo Transfers:

If there’s one thing that I would change if I could go back and do it over again, it’s that I would freeze all of my embryos after the egg retrieval, rather than going ahead and doing a fresh transfer immediately after the egg retrieval.

Ask: “What are the pros and cons of freezing all my embroys versus doing a fresh transfer? Would it be easier on my body to freeze them and rest, if possible, versus doing a fresh transfer?”

I chose to do the fresh transfer because the doctor said they have a slightly higher level of success compared to frozen embryo transfers. However, my poor body was so worn out from the month of injecting medications and going through with the egg retrieval, that the transfer was too much. They put me on almost 2 weeks of progesterone and did the transfer 5 days after the egg retrieval. It was stressful and invasive and put me into a flare. I wish that I had said no, taken a couple of months to rest and recuperate, and then done a frozen embryo transfer. That would be pacing, IVF chronic illness style. However, if you only have 1 or 2 embryos and want to maximize your chances, or the process hasn’t worn you out too much, then a fresh transfer might work really well for you!

Ultimately, there is no one right way to do IVF. It will be challenging no matter what, but with accommodations, it can be made easier. As for me, my first round unfortunately didn’t work. We were just beginning our second round when I found out I was pregnant. Life is funny that way sometimes! I hope some of this information helps out others with fibro who might be considering IVF, because I believe it is possible to get through the process, and it is worth it for the dream of starting your family.

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

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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

Medical & Emotional Gaslighting: How to Identify This Damaging Manipulation And Heal From It

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Gaslighting is a form of manipulation, designed to undermine your confidence and self-esteem. It can happen at the doctor’s office, at home, at work, or anywhere else. People who employ these techniques play on emotions like shame, fear and guilt, until you question everything about yourself.

  Psychologists use the term “gaslighting” to refer to a specific type of manipulation. “Gaslighting is a technique that undermines a person’s perception of reality. When someone is gaslighting you, you may second-guess yourself, your memories, and your perceptions. After communicating with the person gaslighting you, you may be left feeling dazed and wondering if there is something wrong with you.” Unlike a direct insult (which is still very hurtful), gaslighting sneaks in through the backdoor. It’s pure manipulation. It’s also emotional abuse.

Gaslighting Technique 1: Shaming

A primary tactic of gaslighting is to make you feel that your emotions and reactions are always somehow wrong. If you try to defend yourself, you are too sensitive and/or overdramatic. If you try to set boundaries, you are selfish and mean. If you don’t do what is asked of you quickly enough, you are lazy and incompetent. If you go out with other friends, you are too much of a people pleaser. If you don’t tough out a difficult situation, you’re weak.

Similarly, this is the doctor telling you that the medical treatment doesn’t work because you’re too emotional, or because you’re a ‘head case’. Medical gaslighting — “the repeated denial of someone’s reality in an attempt to invalidate or dismiss them” — is a form of emotional abuse. When a medical professional leads a person to question their sanity, they undermine the patient’s trust in their own body.

Women are often told their severe pain is just “normal period pain,” a weight problem, or something a Tylenol will fix. A study in the Journal of Law, Medicine & Ethics “indicated that women… are significantly more likely than men to be ‘undertreated’ for pain by doctors.” Medical gaslighting occurs because pain is often dismissed as “all in your head” (being crazy) and caused solely by psychological problems, despite evidence to the contrary. However, it’s clear that stress and mental health challenges can exacerbate pain. This makes it all the more imperative to address sources of toxic energy in your life, like manipulative behavior by your doctors or loved ones.

Gaslighting criticisms are usually arbitrary, with one thing being fine one week and a crime the next. You have a constant feeling of walking on eggshells, which makes you more vulnerable, and easier to manipulate. As an example, when I was 16, my grandmother died. A few days later, I was having a crying spell, when a gaslight-er in my life said “Are you being melodramatic in order to get attention or something? It’s not like you were even close.” It’s wrong to tell someone their grief is ‘melodramamatic’, to respond with dismissal instead of comfort. But it is also an insidious way to make someone grieving doubt their own feelings, and wonder if they are being ‘over the top’ and attention-seeking. You may have experienced something similar if anyone has told you not to be upset after your diagnosis because your illness isn’t terminal, or other people have it worse.

In another situation, I asked the manipulat-er for privacy to have a conversation with a visiting friend, who was upset after a break-up. Unbeknown to me, this was interpreted as a personal rejection. Later, I found a typed story on my pillow about how I was the world’s meanest mean girl, conspiring with my heartbroken friend to exclude the manipulat-er! I wasn’t able to laugh it off completely, because of that insidious doubt that this person was right.

In this loony-tune land you begin to question your initial reactions (“of course I am not like that!). You get worn down until you wonder whether you really are all if these terrible things. Shame is a deep emotion that can be played on effectively.

Gaslighting Technique 2: Isolation and Rejection

Secondly, manipulat-ers seek to ‘isolate’ and ‘reject’ the targets of their activities. In a medical context, for example, I have had a doctor undermine all other medical advice I’d received up till that point: “You can’t trust what that guy says.” And if you assert that the previous treatments were helpful? “That was just in your head.” You start to doubt yourself, the medical team around you, and even what your body is telling you.

In a personal context, the gaslighter tries to intervene in other close relationships. When I was in a serious romantic relationship, this person insisted my new long-distance boyfriend- he didn’t really love me. When I planned to visit him, the gaslight-er insisted I shouldn’t go. In fact, they threatened, “if you do go, you will be flushing our relationship down the toilet forever.” Your closeness to others may be seen as a threat to them, or they may try to recruit allies to their “side” by intervening in your relationships with other family or friends.

Creating doubts about the care or love of everyone else in your life keeps you dependent on this one person. Threatening abandonment if you don’t comply keeps you in line. A doctor might threaten to cut you off from essential treatments if you don’t endorse their diagnosis or approach. A specialist once told me “It’s fine if you want to question me, I will still allow your treatment to continue- for now.”

In childhood, a parallel would be to threaten a child that, if they don’t behave, they will be left behind alone in the park, and then turn and walk away from them. Fear is a crucial part of the gaslighting trifecta. After all, evolutionarily, being abandoned by your clan was an existential threat, and that’s still how it feels today. You’ll do almost anything to prevent that outcome.

Gaslighting Technique 3: Guilt Trip

I had an excruciating nerve block procedure done last summer. At one point, I was in so much pain that I cried out and said “This is too much.” The doctor stopped and said, “I’m not even doing anything right now. What more do you want from me? I already got you everything you claimed you needed to be comfortable, the head rest, and the extra pillows.” Implication: you are being a difficult patient; your “needs” are over the top, I’ve already done so much for you, and to ask for more is just crazy. No compassion, no communication. (TW- threats of suicide in paragraph below).

Guilt in personal relationships can take many forms, from mild rebuke to intense criticism. It becomes abusive when it is used as a form of control. For example, “You didn’t load the dishwasher, so you must hate me’. Your initial reaction is to run towards this person to try and prove your loyalty and affection (“No, of course I love you! I’m so sorry, I’ll load the dishwasher right now!).

It can escalate to extreme forms of manipulation. Having a loved one call you to say “I’m just letting you know that I’m going to kill myself, not that you’ll care” is an emotional gut punch. When this happened to me, I was initially overwhelmed with panic for the safety of this individual (in fact it triggered my very first panic attack). This is an extreme example, but it highlights very clearly the art of the guilt trip.  This person had cast themselves as a victim (driven to suicide), and myself as the perpetrator ( a heartless ice queen), when actually it was the other way around. I realized years later that my love for this individual had been weaponized against me.

Over time, you take it into your soul that you are cold-hearted, and unloving, since this is apparently how you make your loved ones feel. And that’s what they want, because now you are hooked by your own guilt and desire to try to secure the relationship. 

Healing From Gaslighting

The rational tools of relationship problem solving – compromise, taking cooling off time outs, or agreeing to disagree, just don’t work in this environment. Everything becomes twisted. You start a conversation about how communication needs to change and end up reassuring the other person that you do love them and will try to visit more. Facts are cross-examined: “Get your story straight!” Efforts to clarify are diverted by provocative or hurtful comments to bait you off course. Up is down and left is right. Every encounter will be subject to revisionist history, and there will be no ‘agree to disagree’.

Ultimately, you have to give up on coming to a shared understanding. Often, trying to win the argument and prove your point is futile. You have to believe in yourself first and foremost. So what can do if you think you are being gaslighted?

When you start to feel confused, or uncertain, it’s likely the gaslighting is underway. This is a good time to change the subject, say no, or just go.

Be self-compassionate. Give yourself the love and security that you long for. In any situation, ask “what would I tell my best friend if they were in this position?” and then tell that to yourself. Practice loving kindness meditation.

You have the power to say you don’t want to continue a conversation, and get up to leave. You have the power to say no, to whatever is being asked of you.

It’s important to keep track of the patterns in these relationships. Keep a journal, voice notes, or tell a close friend. You may notice that gaslighting increases when you gain a little bit of independence or assert yourself. Since these episodes will be revised out of the official account kept by your gaslight-er, it’s very helpful to have your own record. This helps you stay firmly planted in reality and not get twisted around in future encounters.

Finally, talk to a therapist! It does wonders for your ability to see through manipulation and empower and protect yourself.

How To Respond To Gaslighting

When it comes to what you can say when you sense gaslighting, here are a few recommendations:

“I notice you don’t accept my viewpoint on this as being equally valid to yours. Please don’t dismiss my interpretation like that; I’m not imagining things.”

“You clearly feel strongly about this, as do I. My emotions are my emotions, and I don’t need to justify them.”

“I respect your right to have your own perspective. Please grant me the same. I think we need to agree to disagree on this.”

“We both deserve to be treated respectfully. Since that isn’t happening, I am going to take a break from this conversation.”

“I’m not going to respond to that.”

“Like I told you, I’m not going to discuss this topic again. I need to go.”

And then leave. Protect your heart. You deserve it.

A list of international emergency and suicide hotlines:https://www.opencounseling.com/suicide-hotlines

Fibromyalgia as an Autoimmune Disorder: The New Study Changing Everything We Thought We Knew

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The Evidence: Fibromyalgia may be an autoimmune condition

In a paradigm shifting new study, researchers were able to trigger fibromyalgia symptoms in healthy mice by injecting them with blood from fibromyalgia patients. Specifically, scientists injected the mice with IgG antibodies from individuals with fibromyalgia in England and Sweden.

IgG antibodies (immunoglobulin G) are immune proteins that attach to foreign substances so the immune system can neutralize them. IgG antibodies recognize and target pathogens and toxins. Sometimes rogue IgGs, called autoantibodies, turn against our own bodies, and are directed against our own tissues, like joints or organs, which is what characterizes autoimmune disorders.

When IgG antibodies from fibromyalgia patients were injected into healthy mice, the mice developed fibromyalgia-like symptoms, such as an increased reaction to pain, less physical activity, and reduced muscular strength. After two weeks, once the IgG injections wore off, the fibromyalgia symptoms experienced by the mice reversed. In contrast, IgG injections from healthy people into mice did not cause any symptoms. Importantly, injecting mice with blood from fibromyalgia patients that had been filtered free of IgG antibodies also had no effect on pain sensitivity in the mice.

From these results, the researchers concluded that “fibromyalgia pain is caused by IgG autoantibodies,” and is likely an autoimmune condition. This is a profound change in how we understand and treat fibromyalgia.

But how do IgG antibodies trigger fibromyalgia pain?

 The answer lies in where fibromyalgia IgGs appeared to target their activity in the body – the nervous system. Researchers examined tissues from the mice that had been injected, and detected fibromyalgia IgGs in specific nervous system cells that affect sensory nerves. In order to understand these findings, let’s define a few areas of the body:

Sensory neurons are nerve cells that carry information about sensations, like temperature, pressure, or pain.

Glial cells support, protect and take care of nerve cells by providing structural support, insulation, and nutrients, as well as modifying nerve signaling.

A dorsal root ganglion is a cluster of neurons around the root of a spinal nerve, just outside of the spinal cord. The cluster includes sensory neurons carrying information from the body to the spinal cord. Glial cells in the cluster form a layer around the cell bodies of these sensory neurons.

In this study, the researchers primarily discovered fibromyalgia IgG antibodies in glial cells of the dorsal root ganglia (the support cells in the cluster of sensory neruon cell bodies).

This finding means that fibromyalgia IgGs target glial cells that support and regulate sensory nerves, sensitizing them to pain signals. In other words, the immune system has gone haywire, and IgG antibodies are being directed against sensory nerve structures carrying pain signals. Hyperactive sensory nerves send more intense and frequent signals communicating the presence of pain.

But this isn’t the first time a discovery like this has been made. “Autoimmune pain” is a new term that describes how specific IgG antibodies can target different nerve structures, causing sensory nerves to become hyper-sensitive to pain and other sensations. But autoimmune pain has never previously been linked to fibromyalgia.

Putting this all together, fibromyalgia may be an autoimmune condition in which specific IgG antibodies target glial cells in dorsal root ganglia, causing the sensory neurons supported by the glial cells to become hypersensitive to pain.

How will this discovery change future research and treatments for fibromyalgia?

As a disorder of the immune system, a number of new treatments will open up for fibromyalgia that have previously been used for other autoimmune conditions. As we saw in the mouse study, the depletion of fibromyalgia IgG antibodies (once the human IgG injection stopped) reversed fibromyalgia symptoms. Theoretically, treatments currently used for autoimmune conditions like myasthenia gravis, which filter out the amount of IgG antibodies circulating in your bloodstream, could reduce fibromyalgia symptoms! “Plasma exchange is a dialysis-like procedure that is performed on a patient’s vein. An individual is hooked up to a machine that nearly simultaneously removes the blood and puts it back in. The machine “skims” the blood of harmful antibodies. Removing the antibodies prevents them from causing muscle weakness.”

 It’s important to remember that this study was conducted on mice, not humans, so much more needs to be done before we can understand or treat fibromyalgia as an autoimmune condition.

Autoimmune pain explains why fibromyalgia is a pain condition without inflammation, because the immune system (IgGs) directly targets the nervous system. The absence of inflammation, a hallmark of most injuries, and pain conditions like arthritis, has historically been used to suggest fibromyalgia is “all in your head” or “psychosomatic.” Studies like this one will hopefully be the nail in the coffin of the doubts about the physical pathology of fibromyalgia – it’s “all in the body!”

Critically, no fibromyalgia IgG was discovered in the brain or spinal cord (brain and spinal cord)  tissues of the affected mice, demonstrating that the fibromyalgia pain was caused by the sensitization of sensory neurons in the body.

Previous research has shown substantial alterations in central nervous system activity in people with fibromyalgia compared with healthy individuals. The researchers suggested that the hyper-sensitization of sensory nerves in the dorsal root ganglia, which are located just outside of the spinal cord, could alter nervous system activity in the spinal cord, thereby causing the patterns of central nervous system characteristic of fibromyalgia. However, further research needs to clarify the body vs. brain debate over the mechanisms of fibromyalgia pain processing dysfunction.

Goebel A, Krock E, Gentry C, Israel MR, Jurczak A, Urbina CM, Sandor K, Vastani N, Maurer M, Cuhadar U, Sensi S, Nomura Y, Menezes J, Baharpoor A, Brieskorn L, Sandström A, Tour J, Kadetoff D, Haglund L, Kosek E, Bevan S, Svensson CI, Andersson DA. Passive transfer of fibromyalgia symptoms from patients to mice. J Clin Invest. 2021 Jul 1;131(13):e144201. doi: 10.1172/JCI144201. PMID: 34196305; PMCID: PMC8245181.

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

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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

How To Communicate Better About Your Chronic Pain & Set Healthy Boundaries

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I hope the tips here can help you to feel more comfortable and confident communicating about your pain, and setting boundaries with others, so that you can focus on taking care of your health. Explaining pain in words is like trying to translate a word from one language into another, except that there is no equivalent word in the other language with the same meaning.

Chronic pain presents significant communication challenges for our relationships, such as needing to constantly cancel plans or having to ask for help. After all, relationships can be tricky enough without the additional complexities of living with chronic pain!

Communicating With Your Doctor About Your Pain

Doctors often attempt to simplify the problem of describing pain by asking patients to rate their pain on a number scale out of ten. Personally, I find this frustrating because one number cannot capture the whole picture of what my pain feels like. When I researched this topic I found a great tool, called the LOCATES scale (Health), for overcoming this challenge. It provides a framework for explaining all the dimensions of chronic pain:

L: Location of the pain and whether it travels to other body parts.
O: Other associated symptoms such as nausea, numbness, or weakness.
C: Character of the pain, whether it’s throbbing, sharp, dull, or burning.
A: Aggravating and alleviating factors. What makes the pain better or worse?
T: Timing of the pain, how long it lasts, is it constant or intermittent?
E: Environment where the pain occurs, for example, while working or at home.
S: Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.

Try writing out your answers to each corresponding letter before your next appointment and share them with your doctor. I hope it helps you feel like you’ve communicated all of the dimensions of your pain!

Communicating With Your Loved Ones About Your Pain

When it comes to friends and family members, pain is a thorny subject. Chronic pain causes stress and heightened emotions. It’s completely natural to snap or get upset during a difficult conversation when you’re in pain. Sometimes just letting your loved ones know how you’re doing that day can help them adapt accordingly. You can try to use the LOCATES scale with your family members to help them understand more fully what you are experiencing.

The Chronic Pain Couple recommends “logging your daily pain levels in a pain app, [then] screenshot and text the daily summary to your partner before they get home from work…This will help your partner understand what your physical capacity is so that they can adjust their expectations of you accordingly.”

Sometimes family members or friends may doubt that your chronic pain is real, criticize how you handle your pain or even accuse you of being lazy if you have to cancel plans because of pain. Even the most supportive people can sometimes be insensitive or say the wrong thing.

 I’ve found that knowing how I want to handle different communication challenges associated with chronic pain ahead of time is helpful to improving my communication with the important people my life.

De-escalate Tension to Express Yourself  Clearly

Feeling like you aren’t being heard or that you are being judged when you communicate about your pain is frustrating. On top of that, it’s difficult to express yourself clearly when you are hurting and feel emotionally reactive or defensive.

 One way to de-escalate tension and have a more productive conversation is to take a pause before responding to an upsetting comment. The first step is to notice that you feel angry, hurt or upset. If identifying the feeling is tricky, look for physical cues of emotional reactivity – clenched jaw, stomach knot, tight chest, constricted throat or increased heart rate. Then intentionally take a pause until you feel ready to respond from a place of self-awareness. This could be as short as counting to 10 or as long as waiting until your pain flare has passed to continue the conversation. Sometimes I find going into another room and taking a short mindful meditation break (focusing on my breath for three minutes) really helpful.

Dealing With Unwanted Advice

In my experience there are two types of advice: well-meaning suggestions from someone who genuinely wants to help and judgmental statements framed as “advice.” In responding to the former, I like the advice from Live Plan Be: “The key is to find ways to respond to others that don’t drain you or get you riled up… You can give them a positive response without agreeing or committing to follow their advice.” An example might be “Sure, I’ll keep that in mind.”

Dealing with judgment in the form of advice (“maybe if you got off the couch and exercised more then you would feel better”) is another story altogether. Rather than feeling the need to explain yourself, and going around in circles, it’s best just to be direct and say politely that you aren’t interested in their advice: “When it comes to my health, it’s important to me that I do what I think is right. When you tell me what you think I should do, it’s not helpful to me. It would mean a lot if you would not do that anymore.”

Establishing Boundaries And Sticking To Them

Setting healthy boundaries is good for everyone, but it’s particularly important for people with chronic pain. The reality is that we face physical limitations, and pushing them has severe consequences in the form of pain and fatigue. It can be hard for the people around us to accept these limitations and to not take them personally. These limitations can put a strain on our partners and families, whose lives are also changed by our chronic conditions. The urge to avoid disappointing people is hard to resist and learning to put your health needs first is a difficult transition for many of us. But speaking up is important for your health and well-being! There are many positive personal benefits that result from learning to advocate for yourself, like greater self-confidence and agency, feeling more centered, and feeling that you are living with greater authenticity.

If possible, try to make a request to set a new boundary in a constructive way. Ask in a calm but firm manner, at a time when the other person is more likely to be receptive. When you clarify a new position in a relationship, speak in terms of “I” rather than “you” to minimize defensiveness on the part of the other person. It’s important you also stick to the boundary you have set, otherwise it’s unlikely the other person will too. Live Plan Be suggests a helpful tool for setting boundaries called the ‘Feedback Formula’:

When you … call me at 11pm at night (describe the person’s behaviour),

I feel… upset and frustrated (describe the emotion you feel), 

and the result is…my sleep is interrupted, and it that increases my pain (describe the effect of you experiencing that emotion). 

Would you be… willing to call me before 8pm instead?” (make your request).

In this example, after setting the boundary, don’t answer the phone after 11 pm, in order to reinforce the line you have drawn.

Ultimately, there’s no way to express yourself perfectly in every situation, and you aren’t to blame if other people can’t or won’t listen. If someone protests the boundaries you have set, try to remember that it’s their problem, not yours. It’s just further proof that the boundary line is needed. Focus on nurturing your healthy relationships, and put toxic relationships on the backburner. “Remember, you don’t need to apologize for setting good boundaries that help you stay healthy, manage your symptoms, and feel your best while living with chronic pain” (My Chronic Pain Team).

Hopefully these tips can help you communicate more clearly about your pain, and establish boundaries with others, so that you can prioritize your self-care.  

Resources

Chronic Pain Couple (Top Tips For Communicating With Your Partner About Pain)

Health (How to Describe Your Pain to Doctors)

Harriet Lerner (The Dance of Anger, 2005, HarperCollins: NY)

Live Plan Be – Pain BC (Four Communication Tools for Close Relationships)

My Chronic Pain Team: How Good Boundaries Make Life Easier

Why Acupuncture Works For Chronic Pain, According To Science (And How To Make It Work For You!)

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Acupuncture is the therapeutic use of very thin, hair-width needles to stimulate specific points on the body to reduce pain or disease and promote wellbeing. Before I was diagnosed, I never had expected to become an acupuncture aficionado. My impression was that it seemed like a painful way to go about treating health conditions. I was also skeptical about how effective it could be. However, like many other chronic pain patients before me, the limited treatment options at my doctor’s office left me searching for alternatives. Trying acupuncture started to make sense. After looking into it and trying it myself, I have realized that it is a valuable tool in my chronic pain treatment toolbox.

Acupuncture has been used for over 3,000 years and is an integral part of Traditional Chinese Medicine (TCM). In this medical system, health is understood as achieving a balance between opposing forces (yin and yang). Traditionally, essential life energy, called ‘qi’ (chee) is believed to flow along channels in the body called meridians, keeping yin and yang balanced. Acupuncture points are mapped along meridians. If the flow of qi is blocked, it causes pain and disease (imbalance). Stimulating acupuncture points restores the flow of qi along the meridians, improving the health of the individual and restoring balance.

Western medicine offers a different perspective on how acupuncture works. Scientific studies show that acupuncture points are frequently located on nerve bundles or muscle trigger points (Beck, 2010). Acupuncture has been found to increase blood flow to tissues around the acupuncture point, promote healing of localized tissues and affect the central nervous system (Beck, 2010). Some of the nervous system effects include down-regulating pain sensation, encouraging a relaxed brain state, and calming the autonomic nervous system (Beck, 2010). However, some sceptics believe these findings only demonstrate a strong placebo response to acupuncture.

Dozens of studies have investigated whether acupuncture is an effective treatment for chronic pain. The National Centre for Complementary and Integrative Health (2016) explains that “Results from a number of studies suggest acupuncture may help…types of pain that are often chronic,” including low-back pain, neck pain and osteoarthritis. Acupuncture may also reduce the frequency of tension headaches and prevent migraines (NCCIH, 2016).

A recent study by Vas et al. (2016) investigated the effectiveness of individualized acupuncture treatment programs for patients with fibromyalgia (as opposed to most studies that use a standardized treatment program). Tailored treatments were compared to “sham acupuncture” treatments – needles inserted at random points on the body. Researchers found that, after nine weeks of 20 minute treatment sessions, individuals who received the tailored acupuncture reported a 41% decrease in pain compared to 27% for the sham acupuncture group (Vas, 2016).

The NCCIH (2016) explains that one of the benefits of acupuncture is the low-side effect profile (when conducted by a credentialed acupuncturist using sterilized needles). Since medication for chronic pain often causes significant side effects, this makes acupuncture an attractive treatment option for people living with chronic pain.

If you’re interested in trying to acupuncture, you should be aware that there are two broad types of practitioners. The first are practitioners of Traditional Chinese Medicine Acupuncture, and should have their certification accredited by a recognized professional body like the National Certification Commission for Acupuncture and Oriental Medicine. The second school of acupuncturists practice Contemporary Medical Acupuncture, based on western medical principles rather than balancing qi in the body. Often these practitioners are physiotherapists (physical therapists), naturopaths, or chiropractors who have received additional certifications in this area.

How do you decide which type of practitioner to see? TCM acupuncturists will treat your from a whole-body perspective, and may offer new insights or see connections other medical professionals have missed. Contemporary medical acupuncturists are probably most effective at treating specific musculoskeletel problems. For example, my physiotherapy sessions have become more effective at relieving neck and low back muscles spasms since my therapist began incorporating acupuncture. In contrast, my TCM acupuncturist has helped me reduce my overall number of flares, stress and fatigue, but is less helpful at resolving immediate problems. I have to add that TCM acupuncturists are often much more adept at inserting needles painlessly – after all, this is their area of expertise! 

You may be thinking “But I hate needles; this sounds too painful!” In my own experience, the needle insertion feels like a slight pinch, which disappears in 3-5 seconds. If there is any discomfort, the acupuncturist will remove the needle. After insertion, you usually cannot feel the needles. Occasionally, there may be a sense of warmth or heaviness around the insertion point. The needles are typically left in for 15-30 minutes while you rest.

There is a wide variation in the skill level and “bedside manner” of acupuncturists. For that reason, it’s important to do your research and come prepared with a list of questions:

  • Research the practitioner you are considering seeing to ensure that they have a recognized certification from an accrediting body.
  •  Ensure that the clinic has a clean needle policy – that all needles are pre-packaged, sterilized and unused (I have never come across a clinic that does not do this, but better to be safe than sorry!)
  • Contact the clinic and ask whether they have experience treating clients who have similar chronic pain conditions. Do not go to a spa or aesthetician for pain treatment!
  • Ask that they provide extra pillows to support your body while lying down and a treatment table with a head cradle (an oval opening for face support when you are lying on your stomach, so you do not need to turn your head to the side.
  • Ensure that they provide you with a way to call for assistance. It is uncomfortable to move while needles are inserted, so it is imperative that you can get help. The clinic should be able to provide you with a button to push to summon help or that someone can hear you easily.
  • Tell the practitioner if this is your first time receiving acupuncture. Ask that they only use 5 to 10 needles so that you can test how your body will respond. There is no need to trigger a flare by starting with aggressive treatment.
  • You may be offered additional treatments, like acupuncture with a mild electric current, cupping (using suction cups) or moxibustion. Make sure all your questions are answered before you start and always ‘trial’ the treatment the first time. Once, I agree to have my entire back suction cupped, and I had the pain and bruises for days afterward. If I had only allowed a small area to be cupped, I could have realized this treatment wasn’t for me without the suffering!
  • Just like with anyone who is a part of your treatment team, it’s important to make sure that you get along and that they provide patient-centered care.

References:

Beck, M. (2010). Decoding an Ancient Therapy. Wall Street Journal. Retrieved Oct. 15, 2016, from http://www.wsj.com/articles/SB10001424052748704841304575137872667749264

Nahin, R., et al. (2016). Evidence-based evaluation of complementary health approaches for pain management in the United States. Mayo Clinic Proceedings, 91(9): 1292-1306. doi: http://dx.doi.org/10.1016/j.mayocp.2016.06.007

NCCIH. (2016, January). Acupuncture: In-Depth. Retrieved Oct. 15, 2016, from https://nccih.nih.gov/health/acupuncture/introduction

Vas, J., et al. (2016). Acupuncture for fibromyalgia in primary care: a randomised controlled trial. Acupuncture in Medicine, 34: 257-66. doi: 10.1136/acupmed-2015-010950.

Vickers, A. J., et al. (2012). Acupuncture for Chronic Pain Individual Patient Meta-analysis. Arch Intern Med. 172(19): 1444-53. doi:10.1001/archinternmed.2012.365

Here’s How I’m Staying Sane in 2020: Easy, Lazy De-Stressors

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Here's How I'm Staying Sane in 2020

2020 is basically a global dumpster fire. It’s hard to find the positive any way you look at things, from the pandemic, to politics, to police brutality. Due to chronic pain, I already have a low stress threshold. It’s all just too much some times.

Personally, I’m struggling to keep up with my meditation practice, even though I know it helps me. Instead I’m trying to be mindful while I do everyday tasks, like taking a walk, making dinner of even brushing my teeth. Instead I’m finding that turning to comforting, enjoyable things is the best way to de-stress and stay sane (more or less?).

Just hoping I might get around to nature walks or cat cuddles means I either forget, or I don’t mindfully take it in. Walking through a park while looking at my phone cancels out the benefits. So, I’ve found that intentionally seeking these things out and planning to do them has helped me to make them  part of my routine. Which one of these ideas do you find most helpful?

Animal Companionship

If I was going to name the reasons why I love the company of my cat Sara, I would list her affection, her funny antics and her general adorable-ness. But it turns out that, in addition, spending time with her is also good for my health. Specifically, animal companionship can reduce pain, lower stress and improve mood in people with chronic pain (Confronting  Chronic  Pain). These benefits are experienced not only by pet parents, but by anybody who spends time with an animal. If adopting a cat or dog is not feasible for you, consider visiting regularly with a friend or family member’s pet. You can also talk with your doctor about clinics or organizations that provide therapy dog visits – even a couple of short sessions per week can make a difference!

Commune With Nature

The power of flowers: did you know that just looking at images of nature is enough to reduce your stress and anxiety? A 2015 study published in the International Journal of Environmental Research and Public Health found that just five minutes spent gazing at natural photos promotes relaxation and recovery after experiencing a stressful period. Who doesn’t need some of that right now?!

Of course, getting out into nature is even better: it lowers stress levels and boosts mood. It help us to get out of our heads, stop ruminating about our worries and pay attention to the here-and-now. One study showed that walking in a forest lowered blood pressure and reduced levels of the stress hormone cortisol (NBC). You don’t have to be able to hike to enjoy nature. As long as you are in a natural setting – sitting on a bench, enjoying a picnic, or lying back with the car doors open– are all ways to enjoy the benefits of relaxing outside. Recently, I researched accessible parks and paths in my area and have been able to spend several lovely afternoons relaxing in nature – I always feel better for several days afterwards!

Tune in to Music

Listening to music is a powerful way to de-stress. Music directly impacts our feelings via the unique effect listening to it has on the functioning of our brains and bodies. Research has demonstrated that listening to music, particularly calming classical music, causes lower blood pressure, reduced heart rate and a drop in stress hormones (Psych Central). Music acts as a positive distraction, while also anchoring us in the present moment. But the benefits don’t stop there. Tuning in for an hour a day has been found to reduce pain and depressionby up to a quarter (Science Daily.) In this study, it did not matter whether participants listened to their favourite relaxing music or music chosen by researchers. I’ve found that listening to music when I’m having trouble sleeping or experiencing a lot of fatigue is very renewing.

Try Probiotics

Could the way to mental health be through your stomach? An emerging field of research has found links between probiotics (healthful bacteria that live in the digestive tract) in the gut and brain function. Some probiotics produce neurotransmitters (chemicals that regulate the nervous system), such as serotonin, that affect mood. When neurotransmitters are secreted by probiotics in the digestive tract, they may trigger the complex nerve network in the gut to signal the brain in a way that positively effects emotions (University Health News). In some studies, certain probiotics have been shown to reduce stress, anxiety and depression, including Lactobacillus acidophilus and Bifidobacterium bifidum. Probiotics can be taken as a supplement or eaten in fermented foods like yogurt, kefir, kombucha, miso and kimchi.

Laughter is the Best Medicine

We’ve all heard that laughter is the best medicine, but we feel stressed it can be hard to find the humour in things. However, laughter is one of the best antidotes for stress and anxiety – just 5 or 10 minutes can reduce muscle tension, increase endorphin levels, lower blood pressure and regulate levels of stress hormone cortisol (Adrenal Fatigue Solution). Rather than hoping something funny will happen on a stressful day, take advantage of the benefits of laughter by watching your favourite comedy show, sitcom or stand-up comedian. I find it hard to stay in a bad mood after watching late night TV, and who doesn’t love being able to say that you have to watch another episode of your favourite sitcom because it’s good for your mental health?

 

Resources:

Adrenal Fatigue Solution (The stress-relieving benefits of laughter)

Confronting Chronic Pain (Can a pet help your chronic pain?)

NBC (How the simple act of being in nature helps you de-stress)

Psych Central (The power of music to reduce stress)

Science Daily (Listening to music can reduce chronic pain and Depression by up to a quarter)

University Health News (The best probiotics for mood: Psycho-biotics may enhance the gut brain connection)

Collective Chronic Wisdom: My 5 Favorite Spring Posts by Chronic Illness Bloggers on Finding Hope During Difficult Days

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Collective Chronic Wisdon

The world seems upside down at the moment, and the headlines are truly overwhelming, full of the pain and suffering experienced by so many as a result of the pandemic and systemic racism in the criminal justice system. Yet daily life goes on, and we still need to care for our bodies and our minds, while managing chronic illness in the time of covid-19.  I feel exhausted and stressed, and have been recently neglecting self-care and it’s deeper companion, self-compassion. So I decided to turn to the collective wisdom of my fellow chronic illness bloggers. I’m sharing a few of my favourite recent posts on the realities of daily life with chronic conditions during times of uncertainty, and helpful perspectives on how to find beauty and hope during difficult days.

Not Just Tired

More Than Just a Hashtag

For the past year, I’ve really enjoyed participating in the #joyinspring photography hashtag started by @Not_Just_Tired on twitter. I really enjoy sharing photos of gorgeous spring blooms, and learning what kind they are, by posting using the hashtag. Looking at the lovely images posted by others is always a pleasure, especially when so much of social media is full of difficult and painful news. It’s encouraged me to be mindful on my walks, and to really savour the beauty around me – basically, to stop and smell the roses (#sorrynotsorry). Here, she shares the impact of creating this hashtag, as well as her daily gratitude #mydailythankyou posts.

Blatherings with Terry

Finding Calm During Times of Uneasiness

We may not be in control of what happens outside of our quarantined zones, we can control our thoughts and how we cope. We can choose calm over chaos and fear…These seven-ish behaviors, practices, factors in my life, absolutely help keep me together. Well, quasi together. Ok, as “together” as I’m probably going to be! (lol + acceptance of my here and now)

My Medical Musings

Living A “Simply Special” Life, Despite Chronic Illness, Despite COVID-19

Instead of fighting to hold onto my old life, I’m using my limited energy, my talents and anything I can muster, to carve a new manageable lifestyle. It’s unique to my needs but it’s perfectly formed.

My failing body can dictate a lot in terms of limiting physical activities but it doesn’t have to dictate my happiness.

Brain Lesion and Me

A Not So Very Normal Life:

When living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Life with chronic illness becomes the new normal. Often, it becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives. Nor can we remember what it was not to endure such unyielding and debilitating symptoms.

The Winding Willows

The Key to Happiness Can Be Found in the Dirt

Have you ever planted a seed and watched in germinate then grow and bloom into a beautiful plant? Because there is so much hope for the future when you’re watching the transformative process of a plant growing.

I’ve been growing veggie seedlings in the past few weeks, and seeing the bright green sprouts grow after nurturing them with the best sunlight window positioning, carefully chosen seed starting potting soil, a watering regimen, and too much research has been incredibly rewarding. Especially since the entire world seems upside down.