I’m looking at different pain scales right now and am surprised by some of the advancements in how pain doctors perceive pain patients and the need for the expression of pain. There are sociological and cultural components to the expression of pain that they’re starting to evaluate. One article, “Pain assessment in context: a state of the science review of the McGill pain questionnaire 40 years on” by Main is very interesting. A very tiny part of that article talks about the social context of pain behavior and the need for a science of pain expression, like “pain expressionology” – shout out to Alie Ward, although I’m sure she could find a Greek word to express it better.

Essentially there is a need to look at how pain is “coded,” communicated, and “decoded” by caregivers. Patients in pain “code” the experience in facial expression, physical motions, or verbally. The communication of that code is transmitted to a caregiver (or loved one), who then decodes it. For example, when a nurse asks you to rate your pain, he or she is then making a determination of how to judge that rating by also taking into account facial expression or body language. The problem is that the way people have been socialized affects the way they express pain.

I think of children who fall in the playground and scrape their knee. If there is a parent to run to them and brush them off and kiss their owie, does that reinforce the expression of pain? Will that child become an adult who easily expresses pain in the knowledge that he or she will get positive reinforcement of that pain? To go one step further, is that early positive reinforcement of pain a factor in the physiological changes that lead to actual chronic pain? Or is it chronic expression of pain? I’m not sure I’m making sense, but what if you compare that to the child who does not have immediate positive reinforcement of pain expression, who just stands up, brushes off his or her own knee and goes on to play? If both of these scenarios are repeated routinely throughout the two childhoods, is there a difference in the predictability of the development of chronic pain?

I know that childhood trauma is a factor in brain development and can be a predictor of chronic pain. But what if that trauma is the lack of positive reinforcement of pain expression? Am I tying myself into knots now?

There must be a connection between pain expression, how that expression is communicated, and how that expression is received and interpreted. Right? Stoic people who don’t express pain still have pain, but may be overlooked. “Hypervigilant” people who always express pain may “catastrophize” the level of pain, which may affect how other people with chronic pain are perceived by those trying to assess pain levels.

It may be true that there should be a science of pain expression. It should not only focus on how patients express pain but also how caregivers interpret that expression. Artificial, subjective pain rating systems should be the first thing explored.

So I ran across an article about pain sensitivity and its relationship to mindfulness. Zeidan et al (see Library) did a study that essentially took people who did not practice or study meditation and categorized them as “mindful” people or not using assessments that I have to look into. Then they gave them pain and measured how their brains reacted to the pain (heat).

In short, people who were “mindful” were less affected by the pain, both in how they rated the pain and with physical brain reactions to the pain.

Zeidan et al define “trait mindfulness” as ” the innate propensity to be aware of the present moment in a non-reactive manner.” This is something I’ve become aware of in cognitive behavioral therapy, and also in how I deal with pain, but only in a way. I’ve always said ignore it. It’s not real or it’s not an indication of something actually wrong with me, so just let it go. Accept it, move on. In a way that’s mindfulness. Essentially it’s saying, be conscious of what’s going on around you and accept it without reacting to it. The “non-reactive manner” is an important part of the equation. So if you are able to do that – mindfulness – then your pain centers deactivate or depress and you feel less pain, not only as subjectively reported, but also your brain activates differently and sends a different type of signal to your body. I immediately thought of the people who can walk on hot coals or lay on nail beds. What I didn’t know was that the brain reacts differently with that kind of willful mindfulness to reduce the pain on a physical level.

One thing that jumped out at me, however, is that for the trial subjects, the researchers eliminated anyone with ongoing or chronic pain. So step two is needed, I think, to determine whether mindfulness works on people with chronic pain too. The authors were willing, however, to go out on a limb and note that people who are not mindful of their chronic pain tend to abuse opioids and alcohol. Okay, they were referencing someone else’s work that I have to find now, so I’ll give them that. My question is, since they eliminated studying chronic pain to determine the power of the mind over the brain, do the brains of people with chronic pain react the same way with mindfulness? Maybe it does but on a lesser scale? Maybe people who have chronic pain can’t practice mindfulness to the level needed to reduce pain? I doubt it. But I would be interested in comparing between two groups, those who practice mindfulness with chronic pain and those who practice without.

One of my pet peeves for several years now is the tendency for doctors to look at my weight and say, essentially, that it’s my problem. I’ll acknowledge it’s not healthy – at my heaviest I’ve been about 235. I know it’s bad for the joints that have arthritis in them (back and knees), which adds to my pain issues. Last night in the pool during AquaMixx, I had significant pain in my knees moving through the exercises. I also know I feel sluggish when I weigh too much. It’s a catch-22 of not being able to exercise because I don’t feel good because I weigh too much when exercising can help reduce weight which would help me move.

I acknowledge all that. What my issue is, however, is that doctors tend to dismiss chronic pain when weight is involved. I can say definitively when I was 16 and skinny, I still had pain. And I’ve had pain throughout gaining and losing weight. I have had both an increase in weight and pain the last couple years – is it a chicken and the egg syndrome? After all, I have a double whammy now. I’m over 50 and I’m overweight. Ding ding ding, of course I have pain, right? No.

The pain in my hands right now is very much like the pain in my knees when my arthritis bites me. Do I have arthritis in my hands? No. The pain in my shoulders when I hug my husband too long is very much the same as the pain in my back, which is from slipped discs and arthritis. Do I have arthritis in my shoulders? No. I have several days a month when I feel like I have the flu without the fever, vomiting/diarrhea. Do I have the flu? No. When my cat walks on me (let’s say the skinny one, not the tubby one) it feels like he’s stepping on bruises or creating bruises with every step. Am I bruised all the way up my legs, side, stomach, back, arms? No. All that’s fibromyalgia. Not age. Not weight. Fibromyalgia.

So I’ll take the weight-loss challenge, and let’s see what happens to mobility (my primary goal), pain, and fatigue. I don’t own a scale, but I’m very sensitive to weight in terms of how my clothes fit. And I have access to a physician’s scale at work when I notice that my clothes feel different. I don’t like to consciously try to lose weight because I tend to get frustrated and just binge, and then gain and it’s a mess. But here are my goals for losing weight:

1. small dinners, trying not to skip them, but I get home late and eat dinner late, so I need to really just have a yogurt or something very light. Maybe do vegan at night.
2. Eat normally during the day at work – I don’t eat that much anyway, but to keep satisfied, allow myself to be happy eating at work.
3. Don’t deprive myself, but encourage myself to cut back on carbs. Now I want a bowl of pasta. But when I do have carbs, I’ll have whole grains. I don’t eat much bread anyway, but I do love pasta.
4. Continue to get to the pool at least once a week for AquaMixx. If possible go twice with the second time running laps in the pool.
5. Add daily stretches at home. Leg lifts, bending, whatever I can do now that I have my own space. I’ll work on creating a daily routine and I’ll get my yoga mat out of the trunk of my car.
6. Track my progress. It’s easy to start something, but if I’m doing this on my own, I don’t stay accountable and it’s easy to just slide back into old habits. I’ll track progress at least once a week to be able to be accountable to myself.
7. Don’t blame myself for slipping. No guilt. No scolding myself. Only encouragement.

It’s not easy, especially when I’m not convinced that there will be a significant difference in the way I feel. But being mindful of the food I eat and being diligent in exercising will definitely help me feel better. The question here is – will losing weight help fibromyalgia pain?

Continuing with One Year in Review 2019: FIbromyalgia (Atzeni et al), and looking at the section on treatment. As a reminder, I started this blog because going to an extreme exercise bootcamp seemed to ease my symptoms rather than kill me, as I presumed bootcamp would. I found it not to be sustainable primarily because of arthritis, and so have tried yoga, walking, swimming, Aqua Zumba, and now I’m going to an aerobic water class called AquaMixx. There have been times between each of these endeavors that I have not continued exercising. Either the class ends or life happens. Each time I stop doing exercises, I go backwards to worse than where I started. It’s not starting at square one, it’s starting at square -5. So I can say definitively, whatever exercise works, it requires continuous practice. That’s been my best hope. Meds haven’t worked for me, and I’m sensitive to most of the ones I’ve tried.

However, it was interesting to see that most of the treatment section addressed meds, and the combination of meds that may have some affect on symptoms. If class 3 fibromyalgiacs generally have some chemical sensitivity, it doesn’t seem like that’s the way to go. My opinion. They address the basics and combinations of the basics. And they talk about CBD and opioids. The bottom line on all of it, however, is that because there’s such a variability of how fibro plays out in individual patients, that there is not a be-all, end-all pharmacologic solution. Instead, it looks like combining meds has had the most luck. This of course would require a lot of experimentation until someone puts together a chart of fibro symptoms and medications and refines the likely results as a starting point. I’m not sure about anybody else – I can’t afford the trial and error method, and I don’t want a cauldron of pills to stay compliant with. The side-effects are too great, and they usually affect work as well as my personal life. And I can’t afford it.

So I turned to the non-pharmacological section, which they assert seems to have better impact on symptoms and quality of life than drugs. They discuss behavioral therapies to help people learn to move – to be aware of their movements: Basic Body Awareness Therapy (BBAT) and Cognitive Behavioral Therapy (CBT). I can attest to CBT – I’m a graduate, and a mindfulness advocate. I suspect BBAT has the mindfulness element to it but with a stronger connection to the physical. I’d like to check that out a bit.

I was surprised when I read, “physical activity does not seem to influence pain sensitivity” and then a dive back to drugs. It’s probably true that exercise doesn’t change the way we feel pain, but I firmly believe it reduces the amount of pain that we feel. Instead they go into cryotherapy, mud-bathing, electrical nerve stimulation, laser therapy, and pulsed electro-magnetic fields, and other such stuff. I must be becoming quite cynical. These all would require a substantial amount of time and money to get whatever relief these treatments may give. These are not cures – they’re symptom chasers. And expensive ones at that. So if that’s the direction medicine is going as of 2019, I’m not impressed and not particularly hopeful.

I can do better on my own, I think. I’m in the pool once a week for AquaMixx. It kicks my butt, but overall I feel better. I need to lose weight to take the strain off the arthritis in my knees and back. I have to focus. My goal is to stay mobile. Knees and back are a key component to that. Tonight in the pool, my knees were a-talking. So goal: weight loss, and stay in the pool. Weight loss is tricky, but I’ll give it a go. It would be nice to be able to bend in half again without adjusting for my belly. So maybe that will be my goal, not really weight-loss, but girth-loss. When I can bend in half without adjusting for my belly, then success!

The review article, One Year in Review 2019: Fibromyalgia (Atzeni et al), discusses four classes of fibromyalgia:

Class One: widespread generalized pain in specific regions of the body

Class Two: Greater severity of pain and more regional involvment

Class Three: Even greater severity of pain plus related to sleep disorders and possibly chemical sensitivity

Class Four: fibromyalgia becomes “secondary fibromyalgia” with primary diagnoses, such as multiple sclerosis or lupus, etc.

Atzeni et al does discuss the possibility that these “classes” could also be progressions. Indeed, for myself, I can identify class one as my teen years, class two as my 30s and 40s, and now I’m firmly in class three in my 50s with definite sleep disorder and multiple chemical sensitivity.

If class four becomes the fourth stage of a progression of the disease and suddenly the doctor can identify a primary diagnosis (my money would be on something rheumatic), I have to wonder: Is fibro actually just a “resting” state for these other primary disorders? In other words, let’s say I have lupus, but it’s never been in a stage that has been detectable. It’s in my system, it messes with my immunology, inflammatory markers, etc, but not at the level that I can have a test and someone say, yep, it’s lupus. Now suddenly I turn 60 and the doctor says, well heck you have lupus. I’m no longer in the resting stage, I’m in the active stage.

And then my primary fibromyalgia becomes secondary fibromyalgia. my resting lupus becomes active lupus with secondary fibro. My body has had 40+ years to become sensitized to pain, for fibro to settle in and do whatever brain function or molecular changes it’s made. Now what?

I must be feeling a little catastrophic today. I’ve said for years that I didn’t think I wanted to  live well into old age. I feel 80 already. I’ve also said I’d rather the doctor would just find something he or she could just remove. Tumor, whatever. If fibro has stages, do I really want a primary diagnosis now that I probably wouldn’t be able to take any of the meds that would help? Plus, those primary diagnoses have limited treatment. I don’t know, really. What will be will be. I’ve also had 40+ years training myself how to keep going. And it’s just a theory anyway.