Phantom Pain: Insights Into The Unseen Discomfort

  • Charlotte Sutherland Master of Science – MSc Translational Neuroscience, Imperial College London

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Have you ever wondered why individuals with missing limbs still experience pain in these areas? How can you treat pain when the body part isn’t even there? 

This phenomenon is called phantom pain: the sensation of pain in a body part that is no longer there. It is still poorly understood and can have a devastating impact on those affected.

If you want to gain insight into this unseen discomfort and learn more about the different types of phantom pain, what causes phantom pain, and how it can be diagnosed and treated, read on. 

What is phantom pain?

Phantom pain is the sensation of pain some people experience in a part of the body that was lost in an amputation or accident. Although the term “phantom” may suggest that the pain is imaginary, this is not the case. It is important to understand that this pain is real, and the brain is receiving real pain signals from the body. Instead, the term “phantom” refers to the ghost of the body part experiencing pain.1

Phantom pain is common for most amputees immediately after surgery, with symptoms typically improving over time. This pain can range in intensity from mild aching, throbbing, or tingling pain to severe pinching, shooting or stabbing pain. People suffering from phantom pain might experience brief flashes of pain similar to electric shocks, while others can experience persistent chronic pain.2

It is important to understand this often-overlooked aspect of pain to increase our awareness and understanding of the unseen discomfort that millions of individuals worldwide endure. 

Types of phantom pain

Phantom pain can be classified into different types depending on the body part affected.

Phantom limb pain

The most common type of phantom pain is phantom limb pain. This is where pain is felt in a limb that is no longer there, most often after an amputation or an accident. It is estimated that 8 out of 10 people who lose a limb experience some degree of phantom pain up to two years after the loss. Phantom limb pain is different to residual or stump pain, where the pain is felt in the remaining part of the limb or body near the site of removal, often caused by rubbing of a prosthetic or nerve damage.

Phantom organ pain 

Phantom organ pain describes the pain felt by patients who have had an organ, such as the gallbladder, surgically removed.3

Other types of phantom pain

Phantom pain can also be caused by loss of other body parts after surgery, such as:

  • Eyes: Around half of patients experience phantom eye syndrome after the removal of an eye. Among other phantom symptoms of visual hallucinations and non-painful phantom sensations, many patients also experience phantom pain in the removed eye.4
  • Teeth: Phantom tooth pain normally manifests as a persistent toothache in teeth that have been extracted or denervated (e.g. by root canal treatment). This pain usually extends beyond the tooth into the surrounding facial structures.5
  • Breasts: Phantom breast pain is the feeling of pain in a breast that has been removed after a mastectomy. This pain can worsen a patient’s emotional distress and seriously affect their quality of life.6
  • Intestinal tract: Removal of parts of the intestinal tract can also result in phantom pain. For example, phantom rectum syndrome is the feeling of rectal pain or uncomfortable sensations after the removal of the rectum.7

What causes phantom pain?

Although the exact cause of phantom pain is still unclear, experts believe that the pain is caused by a mix-up of signals between the peripheral nervous system and the brain. Several theories to explain this mix-up have been suggested: 

  • Peripheral nerve damage

After a body part is lost, the nerve endings of peripheral nerves are often damaged or disconnected, while the connections to the spinal cord and brain remain intact. This irritates the nerves and spontaneous discharge of pain signals from this body part, which travel to the brain unaffected.8

  • Central sensitisation

Central sensitisation is a process thought to occur in the spinal cord after injury, where the nerves become hypersensitive to incoming signals. This means that the activity of nerves from the periphery is exaggerated when it reaches the spinal cord, lowering the stimulation threshold needed to experience pain and increasing your sensitivity to pain.9

  • Brain remapping 

After the loss of a body part, your brain can remap itself to replace representations of the lost body part with neighbouring regions in the cortex, the outer layer of the brain (cortical reorganisation). This can therefore result in the feeling of pain in the missing body part when nerves in the surrounding areas are stimulated.10,11

Diagnosis of phantom pain

Your healthcare provider might run a series of tests to diagnose phantom pain. These tests are important to rule out other causes of pain, such as infection in the residual limb. Tests might include:

  • Physical exam
  • Blood tests
  • Imaging scans, such as ultrasound, MRI, or PET scans
  • Patient questionnaires about the pain and its impact on your quality of life.

Management and treatment of phantom pain

Phantom pain will usually improve over time, but there are some treatments available to help manage this pain and reduce its impact on your daily life. 

Medications

Your healthcare provider might prescribe certain medications to help relieve pain:

Alternative therapies

There are several non-invasive alternative therapeutics which some people use to help relieve pain: 

  • Mirror therapy, a form of mental imagery which involves viewing an intact limb in a mirror to trick the brain into thinking that the missing limb is still there. By moving their limb and watching their reflection in the mirror, many people report being able to get relief from phantom pain.12
  • Electrical stimulation treatments, such as transcutaneous electrical nerve stimulation (TENS)
  • Acupuncture
  • Massage or circulation stimulation
  • Physical therapy
  • Relaxation techniques, such as aromatherapy, breathing exercises, or meditation.

Unfortunately, severe pain persists in about 5-10% of patients.9 A combination of treatments might be coordinated by your healthcare provider to ensure your pain is manageable. 

The psychological impact of phantom pain

The loss of a limb or body part can have a considerable psychological impact - this is very common. Many people report emotions such as grief or bereavement like you have lost something. You might also experience a change in your sense of body image and the perceptions of others towards your body. This can cause many negative thoughts and emotions, including depression and anxiety

This impact on mental health is especially common in patients who underwent emergency amputations, as they did not have sufficient time before the surgery to accept and come to terms with their loss.

It is important to get help and support to deal with this psychological burden, as stress and anxiety can further perpetuate phantom pain. Psychological factors do not cause phantom pain, but they can worsen the intensity and length of your pain.13

Help and support

This can be a frightening experience, and adjusting to life after this loss can be challenging. If you feel like you are suffering, talk to your healthcare provider or dedicated care team; there is a lot of help and support available:

There are also several charities available that can provide advice and support to people living with phantom pain and amputations, including:

Summary

Phantom pain is a complex and often underappreciated condition in which pain is felt in a missing limb or body part, usually shortly after amputation surgery. Although its exact cause is currently unknown, there are many theories about peripheral nerve damage, central sensitisation, and cortical reorganisation which might explain the underlying mechanisms involved. This unseen pain and its psychological impact can be managed with treatment and support, with the majority of individuals recovering over time. 

References

  1. Williams AM, Deaton SB. Phantom limb pain: elusive, yet real. Rehabil Nurs. 1997;22(2):73–7.
  2. Wolff A, Vanduynhoven E, Van Kleef M, Huygen F, Pope JE, Mekhail N. Phantom pain. In: Van Zundert J, Patijn J, Hartrick CT, Lataster A, Huygen FJPM, Mekhail N, et al., editors. Evidence‐Based Interventional Pain Medicine [Internet]. 1st ed. Wiley; 2011 [cited 2023 Nov 2]. p. 160–7. Available from: https://onlinelibrary.wiley.com/doi/10.1002/9781119968375.ch21
  3. Roldan CJ, Lesnick JS. Phantom organ pain syndrome, a ghostly visitor to the ED. The American Journal of Emergency Medicine [Internet]. 2014 Sep 1 [cited 2023 Nov 2];32(9):1152.e1-1152.e2. Available from: https://www.sciencedirect.com/science/article/pii/S0735675714001119
  4. Andreotti AM, Goiato MC, Pellizzer EP, Pesqueira AA, Guiotti AM, Gennari-Filho H, et al. Phantom eye syndrome: a review of the literature. ScientificWorldJournal [Internet]. 2014 [cited 2023 Nov 2];2014:686493. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4273592/
  5. Marbach JJ, Raphael KG. Phantom tooth pain: a new look at an old dilemma. Pain Med [Internet]. 2000 Mar [cited 2023 Nov 2];1(1):68–77. Available from: https://academic.oup.com/painmedicine/article/1/1/68/1893463
  6. Ramesh, Shukla NK, Bhatnagar S. Phantom breast syndrome. Indian J Palliat Care [Internet]. 2009 [cited 2023 Nov 2];15(2):103–7. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902108/
  7. Ovesen P, Krøner K, Ørnsholt J, Bach K. Phantom-related phenomena after rectal amputation: prevalence and clinical characteristics. Pain [Internet]. 1991 Mar [cited 2023 Nov 2];44(3):289–91. Available from: https://journals.lww.com/00006396-199103000-00013
  8. Luo Y, Anderson TA. Phantom limb pain: a review. International Anesthesiology Clinics [Internet]. 2016 Spring [cited 2023 Nov 2];54(2):121. Available from: https://journals.lww.com/anesthesiaclinics/citation/2016/05420/phantom_limb_pain__a_review.7.aspx
  9. Kuffler DP. Origins of phantom limb pain. Mol Neurobiol [Internet]. 2018 Jan 1 [cited 2023 Nov 2];55(1):60–9. Available from: https://doi.org/10.1007/s12035-017-0717-x
  10. Flor H. Cortical reorganisation and chronic pain: implications for rehabilitation. J Rehabil Med. 2003 May;(41 Suppl):66–72.
  11. MacIver K, Lloyd DM, Kelly S, Roberts N, Nurmikko T. Phantom limb pain, cortical reorganization and the therapeutic effect of mental imagery. Brain [Internet]. 2008 Aug [cited 2023 Nov 2];131(8):2181–91. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2494616/
  12. Chan BL, Witt R, Charrow AP, Magee A, Howard R, Pasquina PF, et al. Mirror therapy for phantom limb pain. N Engl J Med [Internet]. 2007 Nov 22 [cited 2023 Nov 2];357(21):2206–7. Available from: http://www.nejm.org/doi/abs/10.1056/NEJMc071927
  13. Fuchs X, Flor H, Bekrater-Bodmann R. Psychological factors associated with phantom limb pain: A review of recent findings. Pain Research & Management. 2018;2018.

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This content is purely informational and isn’t medical guidance. It shouldn’t replace professional medical counsel. Always consult your physician regarding treatment risks and benefits. See our editorial standards for more details.

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Charlotte Sutherland

Master of Science – MSc Translational Neuroscience, Imperial College London

Charlotte is a recent MSc Translational Neuroscience graduate from Imperial College London where she undertook research investigating antidepressants and Alzheimer’s disease. She has a strong interest in translational research and is aiming to pursue a PhD in the field of neurodegenerative diseases.

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