I’ve had myeloma over 12 years now and experienced pain throughout, but it has been more complex in the last few years. Because my experiences are so varied and unpredictable, I suffer an inner monologue questioning the validity of my pain. I continue to ask myself if I’m making it up. I’ve asked my doctor and my nurse whether my weird pain is “normal”, but their responses never really satisfy me.
Today, I asked ChatGPT. Its response was like a smack in the face. The complexity of my pain, in words. I recognised every point. It’s amazing what AI can work out, that my medics can’t, and that I’ve never found a good answer to through Google I’m not offering it up as medical advice, because it didn’t come from a medic, and anyway it’s not advice. It’s a better explanation than any of my doctors - including the pain specialists - have ever offered of how the mechanics of myeloma pain manifest experientially.If you too suffer the weirdnesses and fluctuations of myeloma pain, you might find it interesting.
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Me:
What do you know specifically about the pain experiences of people with myeloma? I don’t just mean that there’s bone pain blah blah. I’m wondering if you know anything about how myeloma pain comes and goes, and how myeloma patients are susceptible to injuries which cause long term pain with no obvious physical cause
ChatGPT:
Myeloma-related pain is indeed complex and can fluctuate in intensity and type due to several unique factors associated with the disease. Here are some aspects of the pain experience and the way it may impact quality of life, along with why myeloma patients are susceptible to prolonged pain and injury:
1. Bone Pain Patterns and Fluctuations
• Intermittent Pain: Myeloma bone pain often has a “waxing and waning” nature. It may flare up during periods of physical activity, at certain times of day, or without any clear trigger. This pattern can be due to the way myeloma cells create lesions in the bones, which weakens their structure and makes them prone to microfractures and small-scale injuries that cause pain even without visible damage on imaging.
• Nighttime Pain: Pain is often reported as worse at night, partly because bone turnover and cell regeneration slow down during rest. Additionally, inflammation can increase overnight, which may exacerbate pain and stiffness in affected bones.
• Specific Trigger Points: Myeloma patients frequently experience pain at specific locations like the spine, ribs, pelvis, and long bones (e.g., femur). These areas may become so fragile that even mild stress can cause small fractures or micro-injuries, which can lead to persistent pain.
2. Increased Susceptibility to Injury and Long-Term Pain Without Clear Cause
• Osteolytic Lesions: Myeloma cells produce substances that increase osteoclast activity, leading to “punched-out” lesions that weaken bones structurally. These areas are vulnerable to pathological fractures or “silent” micro-injuries. Even if there is no visible fracture, the structural weakening can cause microdamage that results in persistent discomfort and pain.
• Bone Density Loss and Compression Fractures: Due to weakened bone structure, many myeloma patients experience vertebral compression fractures, which can cause chronic, often debilitating back pain. The vertebrae may collapse in on themselves, creating pain that persists even after the initial fracture has “healed,” due to abnormal pressure on surrounding nerves and muscles.
• Soft Tissue Pain: Muscle spasms and inflammation around weakened bones or lesions can lead to soft tissue pain that persists even in the absence of a visible physical injury. This is often compounded by abnormal gait or posture as patients unconsciously try to protect painful areas, creating additional strain and pain in surrounding muscles and tissues.
3. Neuropathic Pain and Nerve Compression
• Nerve Compression from Bone Damage: When myeloma lesions cause fractures or compress the spine, nerves can be impinged, causing radicular or shooting pain. This type of neuropathic pain doesn’t always correlate directly with visible damage, as some nerve compression effects can persist after initial fractures due to ongoing nerve sensitivity or damage.
• Chronic Pain from Nerve Damage: Myeloma treatment itself (such as chemotherapy or corticosteroids) can also contribute to nerve damage, leading to persistent neuropathic pain. This can manifest as burning, tingling, or shooting pains that come and go unpredictably, even in the absence of continued myeloma activity.
4. Injury Amplification Due to Myeloma’s Systemic Effects
• Inflammatory Response: Myeloma cells release cytokines and other inflammatory molecules that increase inflammation within bones and joints. This heightened inflammation can lead to a lower threshold for pain, meaning minor injuries feel more severe and last longer than they would in someone without myeloma.
• Hormonal and Metabolic Effects: Myeloma also disrupts calcium metabolism, which can affect muscle contraction and nerve function. This can contribute to muscle cramps or spasms, which might feel like injury-related pain but aren’t linked to a specific injury. Additionally, these systemic imbalances can make muscles and joints feel more fatigued and painful, increasing the sense of chronic pain even without acute injuries.
5. Psychological and Sensory Processing of Pain
• Chronic Pain Perception: Living with ongoing pain and potential bone fragility often heightens pain sensitivity. This is partly due to central sensitization, where the nervous system becomes hypersensitive to pain stimuli. As a result, even minor aches or strains can feel unusually intense and persist longer than they would in someone without myeloma.
• Psychological Impact: The mental strain of chronic pain, worry about bone fractures, and the unpredictability of pain flare-ups can add an emotional layer to the pain experience, often intensifying physical sensations. Pain in myeloma patients can sometimes feel more severe or long-lasting due to anxiety or fear of exacerbating underlying bone issues.
6. Management and Adaptation Challenges
• Difficulty with Pain Control: Due to the variability in pain sources (bone lesions, nerve damage, inflammation, and muscle strain), myeloma pain often requires a mix of treatment approaches, including medications, physical therapy, and sometimes orthopedic interventions. Adjusting treatments for fluctuating pain levels can be challenging, and even with good management, patients may still experience spontaneous pain flare-ups.
• Adaptation in Daily Life: Because myeloma pain can be triggered by relatively minor activities or small injuries, patients may limit their movement or take precautions, which can paradoxically lead to muscle atrophy and decreased joint flexibility. This cycle can make it harder to adapt and increases susceptibility to further pain from routine movements or minor injuries.
In essence, myeloma pain is shaped by a complex interplay of physical damage, systemic effects, and neurological sensitization. These factors combine to make patients vulnerable to pain experiences that feel out of proportion to visible injuries or that persist long after typical healing. Managing this kind of pain usually requires a highly individualized approach, integrating physical and psychological support alongside conventional pain management strategies.
