Navigating Fibromyalgia Pain: Understanding and Utilizing Pain Classification for Informed Treatment Decisions
- Dec 24, 2023
- 9 min read
Updated: Jan 1, 2024
Episode 24: How is Fibromyalgia Classified: Acute, Chronic, & Intractable Pain, Some Common Understandings and What Can We Do about It?
Since I was diagnosed with Fibromyalgia, my level of pain has fluctuated in intensity as often as it has relocated to different regions in my body. My pain shifts through all the rating stages from mild and manageable to severe and uncontrollable, and back again. It is persistent in its unpredictability, but predictably persistent.
If you are new to my blog, one day, almost 2 years ago, I woke up with all over body pain. I just woke up with it: pain, headache, fatigue, malaise - the works. I thought I had slept wrong or that I had a flu bug of some sort. But this pain never went away and worsened and waned at a whim. After a year of testing, seeing every doctor under the sun, I was diagnosed with fibromyalgia and have since been on a quest to understand this disorder. Today, our focus is on pain classification.
Why is Pain Classification Important?
I have seen two pain doctors in the past year and came out of their offices with equal pain classifications - "varied and persistent" - but with very different treatment options. Pain classifications can help doctors assess a patient's type of pain, and their severity of pain. It can also help healthcare professionals and patients decide on the best treatment options.
There are a number of pain scales available from health insurance, doctors offices and online. To understand pain scales, it is important to know what at least one of them means in terms of severity. I searched my own health insurances sources and online and settled on the Kaiser-Permenente's online definition for reference:
Pain Scale: Kaiser Permanente's Health & Wellness Encyclopedia defines a pain scale this way: "A pain scale is one way for a person to measure his or her pain so that the doctor can plan how best to manage it. The pain scale helps the doctor keep track of how well your treatment plan is working to reduce your pain and help you do daily tasks". The pain scale defined is a 0-10 scale where 0 equals "no pain" and 10 equals the "worst pain you have ever known". But, again, it is not only essential to recognize how severe pain is, it is also vital for a care practitioner to know what kind of pain their patient is living with.
Definitions:
As I am a layperson and not a medical professional, I think it is imperative to provide the definitions I am working with to create a common understanding of specific terms.
Fibromyalgia: fibromyalgia is a central sensitivity disorder characterized by all over body pain, malaise: fatigue, brain fog, depression and anxiety. Fibromyalgia is a diagnosis of exclusion. There is no specific test for fibromyalgia, yet. A doctor will review your medical history and perform a series of tests to determine if you have any other underlying conditions or autoimmune disorders. Fibromyalgia may occur concurrent with other diseases and disorders like lupus and rheumatoid arthritis. However, a fibromyalgia diagnosis comes from all the things you don't have, plus your symptoms, duration of symptoms, a physical exam and your medical history. After identifying that you have had the pain for three or more months, a doctor may consider fibromyalgia as the source.
Acute Pain: according to the Cleveland Clinic, acute pain is pain that comes on suddenly and usually has a specific source. This pain goes away quickly when the source of pain is eliminated.
Chronic Pain: Researchers at Johns Hopkins Medicine describe chronic pain as pain that endures well beyond the healing stage of an illness or injury, or it can occur without evidence of either a past illness or injury. Furthermore, it can occur alongside other chronic illnesses such as rheumatoid arthritis or cancer. Chronic pain is wavering in intensity at times, and persistent.
Intractable Pain: This kind of pain is similar to chronic pain - it is persistent and debilitating, however it is exceptionally difficult to treat. Many people that are diagnosed with Intractable Pain Syndrome often "report suicidal thoughts for the sole purpose of stopping the pain". According to the National Institutes of Health, or the NIH, this type of pain is not relieved with conventional pain therapies such as, "surgery, nerve blocks, physical rehabilitation, [or] weak opioids". For this reason, several states including: California, Oregon, and Washington have passed laws that specifically address intractable pain so that doctors can prescribe
stronger opioids.
How is Fibromyalgia Classified?
With these understandings, how is Fibromyalgia classified? Based on the definitions above, fibromyalgia is classified as a chronic pain disorder. In order to receive a diagnosis of fibromyalgia, the symptoms must have persisted for 3 or more months after an injury or illness has abated, or the pain persists and their is no other identifiable cause for it. This eliminates the possibility of fibromyalgia being an acute condition.
What is the Cause of this Perpetual and Chronic Disorder?
Juhi Bhargava of the Washington Hospital Center and John A. Hurley of Creighton University, assert that fibromyalgia is considered a chronic pain disorder and may be a disorder of pain regulation. It is a disorder that affects how your brain and central nervous system process pain signals and according to the Mayo Clinic the brain maintains a "memory" of the pain and becomes sensitized, or hypersensitive, to stimuli. The pain receptors in the brain then overreact to painful and non-painful stimuli causing the varied and persistent pain complaints in persons living with fibromyalgia. All this is to say that: fibromyalgia is a chronic pain disorder with persistent symptoms beyond initial injury or illness resolution and underscores the likelihood of alterations in pain regulation mechanisms within the central nervous system associated with the disorder.
What can I do with this information?
As people living with fibromyalgia, knowing that fibromyalgia is a chronic pain disorder and that the pain will likely never go away makes it clear that our decisions about treatment options must be carefully considered. Along with that, knowing that the pain varies for many reasons in individuals including: any kind of stress, weather changes, changes in routine, disruptions in sleep, diet, and experiencing illness, to name a few, can help us make informed treatment decisions with our healthcare practitioners.
My Treatment - What I have done:
When all testing pointed to a diagnosis of Fibromyalgia, my first pain doctor offered me a physical therapy and two specific drug options - Gabapentin and Lyrica. It seemed he had a limited repertoire of therapies to use. Perhaps his experience told him that fibromyalgia was difficult to treat, and that these were the only options in which he saw potential. Or perhaps his insensitivity to my pain got in the way of his interest in treating me. In any case, I remember him insinuating that basically he throws these three options out there and he sees what sticks. If it works, it works; if it doesn't, so be it.
The physical therapy was a "no brainer" for me as I have been a dancer most of my life. Physical therapy was fine; it taught me a few new things, but in general, was only a reminder that I must keep moving to feel better. There was no deep pain relief, nor did I gain enough new knowledge to help me any more than I was already helping myself.
The drugs, on the other hand, gave me pause. I am super drug-sensitive and I was afraid of what side effects I would encounter introducing an "anti-convulsant" pharmaceutical (which is the conventional treatment for fibromyalgia) to my system. But Lyrica, or pregabalin, was specifically indicated for fibromyalgia so I chose this drug over gabapentin - which is used "off-label" to treat this disorder.
Pregabalin can reduce pain from fibromyalgia up to 25%. How it does this is not yet understood but it is thought to reduce pain signals by slowing down impulses in the brain and stops, "overactive nerves from misfiring". But, YES! You guessed it, in the end things did not go well. At first I was dizzy all the time as I was upping the milligrams to a therapeutic does (300-450 milligrams). After I got to that dose, the dizziness eventually stopped and I noticed: it worked a little bit. It worked fine to reduce pain a little bit, and improve sleep a little bit. But, medication can only do so much and under stressful situations I didn't notice it's positive effects at all. If I was entirely stressed out, I went entirely into a fibro-flare without question and this medication could not combat that - I had too. After 6 months, it did not work at all. I had gained 12 pounds, I was lethargic, and in pain. Getting off of it was a-whole-nother thang! See this post, Fibromyalgia and Medication Withdrawal, to walk through that horror with me. It wasn't fun at all! And in the end, I decided no pharmeceutical that held that little promise of a possible 25% pain reduction in pain was worth any of that.
So what am I doing for pain now?
I am still experimenting with diet, getting an abundance of sleep, attempting to reduce my stress, and getting the amount of uexercise I can handle. I also have a new doctor that is licensed to certify her patients, and now me, for medical marijuana. I have had successful relief from hemp products, both CBD and CBN (a weak form of THC) but this industry is not well regulated and I never really know what I am getting. Therefore, I am excited about the possibilities and the promises for relief from medical marijuana, which has a better history of regulation and has well-documented outcomes.
RECAP
Two years ago I was diagnosed with Fibromyalgia and since then, my pain levels are dynamic. They keep changing – sometimes it's mild, other times it's severe, but it's always there, moving around my body. It's like a rollercoaster that never stops.
Fibromyalgia is a chronic pain disorder, meaning it doesn't just go away. It lasts for at least three months, even after the initial injury or sickness is gone. Fibromyalgia disrupts how the brain handles pain signals, triggering pain signals that are amplified or triggering pain for stimuli that shouldn't hurt.
Pain classification is significant for individuals with Fibromyalgia because it plays a important role in determining appropriate and effective treatment strategies. Understanding the specific nature and intensity of the pain allows me and my healthcare practitioner to tailor interventions that address the unique challenges posed by this condition. This could lead to improved management and quality of life for me and others affected by this disorder. For example, I went to two pain doctors, and they both said my pain is "varied and persistent," but they suggested different treatments. Knowing about the type of pain, the source of the pain, and the pain scales is crucial and important information for both me and my doctors to make an effective treatment plan.
I tried physical therapy and some meds (Gabapentin and Lyrica) when I first found out I had fibromyalgia. The therapy was okay, but the meds had side effects, and they only helped a little. After six months, I quit the medication because it wasn't worth it. Right now, I'm trying changes in my diet, improving my sleep, finding ways to manage stress, and continuing to incorporate regular exercise. I also have a new doctor who can prescribe medical marijuana, and I'm hopeful that it might help ease my symptoms.
Dealing with pain is hard, especially when it interferes with daily life. However, understanding the type of pain I'm experiencing and trying different approaches may significantly improve my situation.It's a journey, but I'm figuring it out.
If you enjoyed this post, share it with your friends and colleagues, and consider becoming a subscriber. If you have any tips or suggestions about how to better cope with chronic pain, leave a comment. I would love to hear from you!
Karen Palmen, EdD is a veteran educator in Saint Paul, Mn. She teaches Dance and English at Saint Paul Central High School. She has an active TikTok page that features humorous, political, mental health, and educational content (kickin it with karen2). And a a dormant YOUTUBE channel with the same name, featuring fermented foods and other cooking oddities.
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