(originally published in Amputee Coalition’s inMotion Magazine – this will be updated to reflect evolutions in my thinking/approach and review of new evidence as it’s presented)
Pain. An abstract word limited by our ability to utilize language to describe our individualistic experience. Few words produce such a strong and instantaneous response in the human brain. Our experience of pain is complex and highly subjective. Only you have any concept of the experience; described as an aporia. “exactly” how bad it is. “Other people have experienced pain before, but not my pain,” you may say. Our pain is something we’d like to consider unique to us as individuals, yet pain itself is part of the human condition – a universal human experience. .
Although pain is a part of life, the pain experienced by people with limb loss can at first seem completely bewildering – particularly phantom limb pain (PLP) – characterized by throbbing, stabbing, cramping, tingling, or other painful sensations in the missing limb.
Understanding phantom pain
Phantom limb pain was first documented in the 16th century, but the term wasn’t coined until the American Civil War. Documentation of PLP before World War II is limited due to the mentally ill stigma surrounding the personal experience, because those who experienced it feared being stigmatized as mentally ill. Thankfully, the school of thought around phantom pain has evolved beyond being considered a strictly psychological issue. The numbers vary wildly, but PLP has a prevalence rate between 60-80 percent of amputees report experiencing PLP. Research of PLP is ever-evolving, but there’s no consensus on what “causes” these painful sensations. One of the major ideas attempting to pinpoint a cause correlate toof PLP is referred to as “maladaptive brain plasticity.” Plasticity is the brain’s ability to change throughout life. The theory concept of maladaptive brain plasticity is that when an individual undergoes amputation, the brain tries to reassign sensory and motor resources to other limbs and parts of the body. This sounds good in theoryprinciple, but with phantom pain, our brains take this “reorganization” too far. Coupled with visual input (seeing that your limb is missing) and any other sensory input coming from the affected limb, this leads our brain to receive an “error signal” and we feel the sensation we call phantom pain.
Pain and pain management are popular topics within the limb loss social circle. Of course, it’s only reasonable to want to express your pain to others who can personally sympathize with the experience. We’re always searching for a solution. We describe our pain not just to our social circle, but also to those we entrust to treat us;, whether that’s a pain management physician, chiropractor, massage therapist, physical therapist or holistic health guru. Each of these practitioners will be more than willing to assess you and offer their own complex, scientific-sounding idea of what’s “causing” the pain, and a line of treatment conveniently falling within their scope of practice. Your pain management physician may give you some new pills, while your chiropractor may provide some form of nerve stimulation. A physical therapist may offer desensitization exercises or mirror therapy. A health guru might recommend some herbal remedy and high doses of vitamin B-12. So what the heck works?
Comparing common treatment options
A June 2018 Journal of Clinical Investigation article, “Review of Current Theories and Treatments for Phantom Limb Pain” concludes: “Although phantom limb pain has plagued amputees for millennia, the condition still perplexes researchers today, with no universally efficacious treatment available.”
Pain is an incredibly complex, unique and subjective experience, so it stands to reason that a universally effective treatment doesn’t exist. But research into the experience and treatment of pain is constantly advancing.
Typically, a pain management physician or surgeon will prescribe medications, usually opiates or nerve-pain drugs. A June 2018 Cochrane Library “Review of Pharmacologic Interventions for Phantom Limb Pain” concludes: “The short- and long-term effectiveness of BoNT/A (Botox), opioids, NMDA receptor antagonists, anticonvulsants, antidepressants, calcitonins, and local anaesthetics for clinically relevant outcomes including pain, function, mood, sleep, quality of life, treatment satisfaction, and adverse events remain unclear.”
Translation: Whether any of these medication classes works to reduce PLP is anybody’s guess.
The Cochrane review looked at two high-quality research trials where patients were either given gabapentin or a placebo, and later given the other “treatment”. The results were conflicting – one study showed that gabapentin relieved PLP intensity in a meaningful way, and the other did not. However, both studies found that both treatment and placebo groups experienced a degree of pain relief, and though the difference was statistically significant in one of the two studies, whether the difference is of clinical or practical significance is another matter. Sometimes, simply “taking something” (even a sugar pill) can have a profound effect. A more recent systematic review and meta-analysis of 15 studies with almost 900 participants found that “there was high-quality evidence of no effect of gabapentinoids versus placebo on… pain in the short-term” along with “increased risk of adverse events”
Going back to the Journal of Clinical Investigation review, other treatment methods included mirror therapy and virtual reality. Mirror therapy involves using a mirror box to “trick” the brain into thinking it’s looking at an intact limb in place of an amputation. The review deemed mirror therapy “noninvasive and perhaps one of the least expensive and most effective modalities used for the treatment of phantom limb pain,” with one study showing effectiveness reducing PLP in 93 percent of participants. Sounds promising, but more research is needed. A similar line of treatment using virtual reality shows a similar level of promise, but also needs further investigation, as the research is presently limited to a few small studies.
Another common treatment for PLP is the use of Transcutaneous Electrical Nerve Stimulation (TENS), a device designed to generate electrical currents through the skin and activate underlying nerves. Many individuals anecdotally report relief from PLP using TENS, but good research is scarce. According to a Cochrane Library systematic review, “Transcutaneous Electrical Nerve Stimulation for Phantom Pain and Stump Pain Following Amputation in Adults,” there are presently no randomized controlled trials assessing the effectiveness of TENS and “the published literature on TENS for phantom pain and stump pain lacks the methodological rigor and robust reporting needed to confidently assess its effectiveness.” This doesn’t mean that using TENS to treat PLP is ineffective, but current evidence is pretty low-quality, so it’s difficult to say what, if any, effect it may have. While TENS is considered “safe, inexpensive and easy to use,” and may seem like a relatively low-risk option, becoming reliant on any external device (especially one with little-to-zero evidence demonstrating its usefulness) is a waste of resources and a blow to our own self-efficacy.
Another area where people may look for relief from PLP would be herbal or vitamin/mineral supplements. These are the sort of remedies often recommended anecdotally in support groups – high doses of vitamin B-12, calcium, magnesium, etc. None of the research shows any support for the use of vitamins, minerals, or other dietary supplement to treat PLP or other amputation-related pain. Additionally, taking vitamins, minerals, or herbal supplements can lead to harmful effects due to hypervitaminosis (abnormally high storage levels of vitamins), ranging from headaches to organ damage, as well as the potential for adverse interactions with other medications.
What you can do to ease your phantom pain
It’s safe to say, as far as treating pain goes, what works is a mixed bag at best when it comes to the scientific evidence that’s presently available. So, what does work? Is pain simply to be accepted as a newly acquired part of our being? Daily rituals dedicated to taking meds, shocking ourselves, or chasing after the next big thing in pain relief can lead us down a road of “living in” our pain. Taking this sort of “ownership” of pain creates a path of reliance, helplessness, and ultimately allowing our pain to imprison us.
Here are a few simple steps to help yourself live a life of less pain.
Divorce the pain narrative: The stories we’re told, and the stories we tell ourselves, are the ones that we take to heart. If you accept the idea that pain is inevitable, spend countless time and resources chasing a solution and commiserating socially, that becomes your reality. It’s a vicious circle, and the only way out is to change how you perceive it.
Minimize stress and other negative feelings: This relates back to the vicious circle of pain. Many people live a stressful lifestyle; amputation doesn’t make that any easier, but the better you become at managing stress, depression and other negative emotions, the easier dealing with your pain will be. Adopting positive practices such as meditation and exercise can help you mitigate stress.
Avoid using opiates or other drugs for relief: Another tall order, but a worthwhile one. There’s evidence that pharmaceuticals are effective immediately after amputation and during recovery. However, evidence is scarce for long-term effectiveness, and the potential for adverse consequence is clear. Addiction, dependence, and other negative implications for long-term health are abound.
Get out and participate in life! Try not to let your pain hold you back. While we must accept some pain is inevitable, our interpretation of pain will predict our future responses. If we perceive pain as all-consuming and beyond our control, our brain will accept that. Mastering your pain includes simply living your life without allowing it to slow you down. Quit blaming your pain on things that you have no control over. Attaching our pain to the events that caused our limb loss, or saying things like “It gets worse at night” or “Oh, it’s going to rain – my leg’s throbbing” only reinforces the connection that our brain makes with that pain. When mind-numbing phantom pain takes hold, breathe. Focus. Don’t run from it, scream, or curse the universe. This is temporary, and it shall pass. Tell yourself you’re stronger than the pain, and that pain is a projection of your brain, not your reality.
The reality of the situation is that you didn’t live a completely pain-free life before your amputation, and you won’t be living one afterward, either. Can you be comfortable? Yes. Can you be nearly pain-free? Certainly. When it comes to pain, unfortunately, nobody gets a free pass. While we can’t choose whether we experience pain, we can choose what we do with it. You can allow your pain to control your life, spending time, money, and other valuable resources fighting a beast that simply won’t succumb. Or, you decide to move on and live life regardless – the choice is yours.
Note: If your pain becomes acutely worse or changes in a manner that is alarming to you, or new pain develops, consult a medical professional immediately. None of the information in this article is to be considered medical advice. Talk with your healthcare provider before making any changes to your current pain management strategy.