What Is Phantom Pain - Not Just A Missing Body Part?
Updated: May 17
One of the reasons for writing this article is to say to patients who have long lasting pain after surgery to remove a body part.
"It may feel silly saying that body part hurts when it's not there, the pain and the sensations are certainly very real. This pain is called phantom pain."
There may not be enough information given to patients who develop long-term pain in a body part that's been removed by surgery. Post surgical pain can often be due to injury or damage to nerves within tissues.
Surgeons will do their best to minimise nerve damage but sometimes cannot be avoided. Nerve pain can be difficult to effectively treat, can be unbearable with many and varied sensations that can be worrying and cause us to be anxious.
Post-Surgery Pain That Doesn't Go Away
Chronic pain, wherever it is in your body can be a daily challenge.
· My leg is painful
· My back hurts
· It's too painful to sit down/stand-up/walk.
Why Do I Have Constant Pain In a Limb That's Not There?
However, what if you have constant pain in your hand, arm or leg but you no longer have that hand, arm or leg? It's been amputated either due to trauma or disease. This is called chronic phantom limb pain. In fact phantom pain can arise not just from a missing limb, but other body parts or organs.
What if your missing leg feels, numb, itches or gets muscle cramps? These are labelled as phantom limb sensations.
Both phantom limb pain (PLP) and phantom limb sensation (PLS) after amputation of a limb due to trauma, cancer and increasingly diabetic neuropathy. Where diabetic disease virtually destroys a limb due to uncontrolled diabetic neuropathy.
However this phantom pain can also come from the removal of other body parts, breast, uterus, ovaries, teeth, parts of the digestive tract and other organs.
How Can You Feel Sensation In A Body Part That Has Been Removed?
This is a challenging question, without a clear answer even after much research and a worrying lack of successful treatments.
This quote from Professor Tamar Makin from University College in the UK, suggests we need to be inclusive of all types of chronic pain and relevant treatment.
"Unfortunately, at this point, we still don't have a consensus understanding of the neural drivers of PLP. We don't even know if this condition is mechanistically any different from other more common, and arguably less romanticized, chronic pain conditions, such as joint pain". pg 1932.
The number of people suffering phantom pain is going to increase.
· The number of people with uncontrolled diabetic neuropathy is increasing, hence more limb amputations will be needed.
· The number of women surviving breast cancer is increasing, so more will experience mastectomy phantom pain.
· The ageing population, increased number of 'ectomies', removal of body parts, is increasing.
Phantom Pain Versus Phantom Sensations.
Phantom sensations are experienced as if the body part is still present. The body part is something we have been using and may have a representation in a part of the brain called the homunculus. This is especially relevant for a missing limb. The sensations can vary, such as burning itching, numbness, even hyperanalgesia (oversensitive to touch).
These phantom sensations, may seem weird such as tingling, or just "feeling the body part is still there", as it has always been there. Easy to think it's the brain and our nervous system, kind of playing tricks on us. Therefore I believe in relation to phantom sensations there can be more acceptance by patients that their brain is involved with these messages.
However, chronic pain is another issue as we are programmed to recognise pain as something physical, as tissue damage that needs to be repaired.
Research has shown that areas in the brain, related to the missing limb can be activated by thinking or to "move" the missing limb. In the past phantom pain was not so readily accepted, I guess because phantom is imaginary?
Cambridge dictionary definition of phantom: -
"Something that appears or seems to exist but is not real or is imagined"
In the same way when a body part is removed due to damage or illness, again will the brain still have awareness or connections to that organ or missing body part?
Trauma Of Hysterectomy Or Mastectomy Followed By Chronic Pain
I'd like to include the "not talked about enough", trauma of mastectomy and hysterectomy. Mastectomy phantom breast pain (PBP) and phantom breast sensations (PBS) can be experienced by up to 30% of mastectomy patients (American Society of Anaesthesiologists, 2000). Ongoing chronic pain can also extend to neck pain, arm and chest pain. It is estimated that 25- 60% of cancer survivors suffer chronic pain following treatment that may or may not involve breast reconstruction.
Hysterectomy phantom pain can be experienced such as period pains and menstrual cramps. Dorpat's clinical study of two women of post-surgical pelvic pain and sensations that felt the same intensity, duration and location from previously experienced menstrual cramps. Imagine the emotions of these women, to go through surgery to correct menstrual problems to be left feeling "phantom uterine contraction pains'?
Staying Silent About Weird Post Surgical Chronic Pain Or Sensations
That's quite understandable and very concerning that many people may stay silent for fear of ridicule. Or perhaps someone will suggest they have an overactive imagination. Phantom pains for months or years later can be very confusing, especially if no one has mentioned the possibility of either phantom pain or phantom sensations post-surgery.
Feeling The After-effects Of Surgery
All of the surgeries I've written about in this article have a risk of disability. Disability can impact daily life, both at home and at work. Individuals may become fully or semi-dependent physically, emotionally and socially (Katran, 2021).
Adjusting to doing things differently and a loss of independence can be challenging. There needs to be understanding and empathy from pain clinicians and doctors as this will be helpful for everyone with chronic pain.
Research has shown some of us can be more likely to have persistent pain following surgery, regardless of the type of surgery. This can depend on events, either stressful or traumatic earlier in life or if we have already had or have existing pain. We all respond in a different manner. Some of us will have more anxiety, generally research shows that anxiety and stress is likely to increase the likelihood you'll have post surgical chronic pain (PSCP).
Pain Catastrophizing - A Word Best Avoided
To lose a limb, or to have a full mastectomy is not only a major physical catastrophe but also involves mental and emotional trauma all mixed up into often an unbearable concoction!
At times, during my postgraduate study in pain management, I was made uncomfortable, at times angry, by the term catastrophizing. In many readings and lectures that I attended I would hear this phrase catastrophe or catastrophizing being a major amplifier or possibly cause of chronic pain.
In my 20 years of complementary medicine (or sometimes called alternative therapy) I had never heard this expression. To me catastrophizing is a negative implication to put onto a chronic pain patient.
Cambridge Dictionary Definition:
"To consider a situation as much worse or much more serious than it really is"
You Cannot Understand My Years Of Phantom Pain
Unfortunately, one pain specialist brought this word from the medical literature and research to say this label to a phantom pain patient, who was one of my clients. I personally believe that this is not an appropriate description to use on anyone suffering chronic pain. I like this particular article I found online. The article goes into more detail of the growth of the use of this negative term - "Catastrophizing": A form of pain shaming
Returning to my client above, let's call him David. He was at the time suffering unbearable painful spasms around his stump. He experienced one of these periods of unbearable pain when he was in my consultation. I taught him a breathing technique that is used to immediately break or interrupt the pain signals in the brain. He was pleased to have something that he could actually try and do to break the suffering.
Later that week he had an appointment with his pain specialist, a physiotherapist, during which he had another unbearable pain spasm. So, he immediately started the breathing technique to interrupt pain messaging. Unfortunately this was not met with much appreciation by his physiotherapist, who accused him of " catastrophizing ".
Needless to say he exploded, really angry to hear this expression, after experiencing years of chronic pain flare ups, at times unbearable and living with a disability. In his anger he suggested that the therapist really had little or no understanding of the past 20 years of chronic pain, endless treatments with little change. Perhaps she needed be careful with the words that she used.
Testimonial from a phantom pain client,his living with pain expereince and treatment ideas and outcomes.
Emotional Impact Of Amputation, Hysterectomy or Mastectomy
Surgery is done for health reasons; often for survival but often little attention is paid to the emotional effect. For an amputee their appearance is forever different and there are restrictions in many ways. However, what happens post-surgery to women after they have lost those parts of their body that make them women?
Mastectomy- the loss of a breast, that is not just physical but an emotional part of being a woman, also the womb that is removed by hysterectomy? Is it time to consider better aftercare for women or at least to spend time talking about their experiences.
What Does Your Body Sense - Post Amputation?
Firstly, we need to include some ideas about the brain, neurology in fact. Brain scans show that when an arm or leg is removed the brain is still organised to have an elbow, wrist, fingers or feet. Whereas someone born without an arm; doesn't have the same neural arrangements in their brain (Makin 2021).
What does your body think? I'm hindered, lost? Not a whole person?
When researching this article, phantom limb pain was easier to access as opposed to phantom pain from other body parts. It's been my experience since doing academic study that many articles, videos and talk on chronic pain, seem to have an introduction of the 'intriguing effects' of post limb amputation.
However I have found, as Makin suggests the chronic pain conundrum needs our full attention with phantom pain included in a holistic treatment approach to chronic pain. Not just a focus on the missing part but the remainder of a patient's body trying to assimilate its new form.
None of us who have not been through this experience can imagine what life and pain is like on a daily basis.
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Some self-help ideas for you to use:
1. Journalling - write out your thoughts and feelings, fears and emotions. This is helpful for some people if journalling is their thing. Or as one client found her talent was drawing and this proved useful for her to examine her feelings by seeing them drawn out in a 'picture' form.
2. Something different try talking to a tree!
Seriously, go to the local park, sit under a tree or park bench and talk out your stuff. Talk out your worries and emotions, then breathing them out - send them off into the wind. Understand the healing power of nature.
As I read through my article it seems there is more to do on this topic. The ideas of the emotional and spiritual effects need more research. In the meantime I hope this information will be a start to help those affected by the removal of a body part to ask questions of the health professionals involved in their treatment and their aftercare.
American Society of Anaesthesiologists. "Phantom" Sensations reported by one-third of mastectomy patients. Science Daily, October 2000.
Tamar R Makin, Phantom limb pain: thinking outside the (mirror) box, Brain, Volume 144,
Issue 7, July 2021, Pages 1929-1932. https://doi.org/10.1093/brain/awab139
Katran HB, Akyüz N. The Nurse's Role in a Patient with Phantom Sensation-Phantom Pain.
J Nurology. 2022;25(1);60-62.
Dorpat TL, Phantom sensations of internal organs. Comprehensive Psychiatry, Volume 12, Issue 1, January 1971, Pages 27-35.
"Catastrophizing": A form of pain shaming by Gwenn Herman US Pain Foundation June 2020
Want to find simple effective ways to reduce your phantom pain symptoms without increasing your stress and overwhelm? This is where I can help! Ideas can be found in the articles on my website. You can sign-up to regular updates or spend time using some of the collection of self-help techniques. After over 20 years of having my own pain clinics pain I started Natural Pain Solutions online business to reach more people, rather than one person at a time. Therefore when I completed my postgraduate pain management studies I wanted to spread the word about holistic self-help techniques that people can use at home. Learn more about me here.