Amputation: A Conversation About Improving Your Body Image and Sexual Well-Being

129Amputated limbs often cause feelings of revulsion in the patient, doctors, family members, and society.  This is a common and normal reaction to seeing the residual limb (there are people who have a sexual orientation towards amputation).  When someone has suffered from limb loss it does not change the deepest, strongest most valuable part of a person.   A concern about sexuality arises from a fear that the residual limb will not be accepted by a partner.  Some people have difficulty seeing themselves as adequate sexually and have concerns about keeping or finding someone to love them.  It is important to understand that you are still a whole person who just happens to have a missing body part.  It will help to talk to your partner, family, or friends about how your changed body looks, feels, and works.

Body image affects how we feel, think and react to our self-perceived physical appearance and how we respond to life determines the quality of our relationships.  Our physical attributes, our successes and mistakes, along with our inner sense of adequacy and value form self-image.  A negative or positive belief about how important we are affects our emotional well-being.

Consequences of amputation can include feelings of hopelessness, low self-esteem, fatigue, and even suicidal ideation.  Rates of clinical depression range from 21% to 35% with individuals experiencing significant levels of anxiety, grief, and social isolation. Sometimes individual, couple, or family therapies may be needed.

People who recover psychologically from body image change accept the amputation.  They often express a desire to live and make the loss into something good.  He or she derives meaning from the amputation and often have a perspective that things could be worse.  Recovering people do not define themselves by their amputation.

People who do not recover psychologically feel depressed and bad about their appearance, have a negative outlook on life and describe themselves as feeling abnormal.  He or she is often disconnected from friends, family, and could remain isolated.  These individuals often experience delayed social and economic adjustment.

Social interactions after an amputation are an understandable challenge for people with limb loss; especially for someone who is shy.   People will look at us because we are different.  Factors that promote positive body image adjustment and well-being are finding positive meaning in our disabling experience.  Amputation does not always cause negative outcomes.  Coping with body image change provides an opportunity to thrive or change in beneficial ways.  Shifting our priorities and view of self changes our interactions with others.

I lost my forearm over a decade ago; it was crushed in an automobile accident.  I came to in the intensive care unit and looked at my arm in horror and said to the doctors, “Oh my god, you cut my arm off.”  The emotional pain from my changed body image was so intense; that I believe my ego was shattered.  I locked eyes with my husband and knew that this was a big life test.  My views about life commenced to change profoundly.  My compulsive drive for perfectionism was crushed along with my forearm.  As a result, I have had an extraordinary life as a woman with limb loss.

Tips For Improving Body Image:

● Smile at people when they look at you.

● Don’t limit yourself with the label of “disabled.” The focus is no longer on what is gone.

● Remember how far you have come.

● Confront your thoughts related to your body

● Talk to your partner about how your changed body looks, feels, and works.

● Focus on learning new ways to do things you enjoyed before the amputation. Be extra clever or creative.

● Have positive experiences with your body.

● Be optimistic by believing that something good has arisen from your amputation.

● Learn to accept and love yourself.

● Learn to develop a healthier more accurate view of yourself.

● Join organizations that support people with limb loss.

● Read articles on body image after amputation.

Remind yourself often that you are so much more than your appearance.

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FOR INDIVIDUALS WITH LIMB LOSS, PLEASE CLICK ON  THIS LINK FOR RESOURCES AND SUPPORT FROM THE AMPUTEE COALITION http://www.amputee-coalition.org/

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Thank you for reading this article.  My learning journey with body image challenges is a result of my experience with limb loss.  Before my limb loss, I sacrificed my emotional and spiritual well-being for perfectionism and looked to others for approval at the cost of trusting my intuition and developing my self-worth.  As a result I have learned a lot about what it takes to put an end to self-created emotional pain.  And, as I learn and grow, I teach self-compassion and give advice I use myself, in the hopes that it helps you to improve your own life.

Roberta

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Mirror Therapy: Seeking Relief Through the Looking Glass

6/52 "phantom limbs"

6/52 “phantom limbs” (Photo credit: porschelinn)

Phantom limb pain (PLP) and phantom limb sensation (PLS) have long intrigued physicians and clinical psychologists.  PLP is commonly seen in people who have lost a limb due to disease or trauma. Although it no longer exists, the phantom limb becomes the location of severe pain, characterized as cramping, shooting, squeezing, stabbing, throbbing or burning. In addition, phantom limbs are often perceived as paralyzed in an unnatural position or shape. Following amputation, virtually all patients experience PLS, painful or not. Essentially, the brain remembers the missing part of the limb and is still reporting its feelings. A person with PLS may feel numbness, tingling, heaviness, temperature change, pressure, constriction, reduced or changing limb length and a sense of voluntary movement in the phantom limb.

V.S. Ramachandran, MD, is the developer of the mirror box treatment for PLP. The theory proposes that when a patient gets visual feedback (i.e., using a mirror) that the phantom limb is obeying the brain’s command, the learned paralysis or pain is sometimes “unlearned.”  His original mirror box treatment evolved into the use of a single mirror.

To explore the phantom limb phenomena, Ramachandran conducted a study of 10 arm amputees using the mirror box to generate an illusion of a missing limb. Patients were instructed to place their amputated limb behind the mirror and to place their surviving limb in front of the mirror while freely moving the intact arm and hand. When the patients looked into the mirror they saw the illusion (image) of their missing limb as being intact and moving freely. Six participants experienced phantom limb movement; four experienced relief of spasms when the mirror was used to facilitate the unclenching of the phantom hand. Another participant’s pain disappeared with repeated use of the mirror over a three-week period. Participants reported that the visual image of the missing limb created a sensation of motion in the phantom limb. Three participants reported a relief of pain using the mirror image to “move” the phantom.

IMG_0045

Single Mirror

Despite the published success of treatment with single mirrors, many amputees experience no relief using a single mirror.  At this time, the rates of response are unknown, and the individual differences influencing mirror therapy are not well-understood.  In addition, there is some evidence that PLP is more common in below knee amputations. This may either be due to it initially being more likely to occur, or that PLP is more likely to resolve naturally in upper-limb amputations.

I have created a new mirror apparatus that has generated phantom sensations in nine pilot patients with limb loss. The new device uses three vertical mirrors, with panes oriented at angles. The tripartite mirror apparatus (TMA) enables viewers to see unusual multiple images of themselves from the side with the illusion of the missing limb intact. Two pilot patients (missing left arms) who reported their phantom hand in a painful, cramped, frozen position, felt movement, relaxation (unclenching of the phantom hand) and temporary relief of pain using the mirror image to “move” the phantom. One participant says, “When I am experiencing throbbing and stabbing feelings in my amputated arm and leg, I use the mirror.  It alleviates the pain and relaxes my phantom hand. I can then get on with what I am doing.” Another participant with a missing left arm experienced movement in his phantom limb for the first time in 18 years.  He reports feeling amazed at the sensation of his phantom hand moving and at seeing the illusion of his limb intact. A participant with a below knee amputation who reported perceptual telescoping (retraction of the phantom limb into the residual limb) experienced the lengthening of his phantom leg and a reduction in discomfort. This patient was emotionally overwhelmed by the sensation.

A common theme that emerges in response to mirror use is reports of phantom limb movement, relaxation (to a lesser degree) and pain relief. As a result of TMA use, all participants experienced phantom limb movement. A clinical trial has recently been completed with a cognitive behavioral intervention integrated with the TMA to treat phantom limb pain and psychosocial disability at the Veterans Administration Healthcare System. This data will provide further explanation of the TMA pilot study results.

IMG_0051_2

Tripartite Mirror Apparatus

The implications of the single mirror and TMA findings are that visual input (using the mirror) can reduce PLP. While most reports have used upper-limb loss patients, several case reports with lower-limb loss have also shown success in increasing perceived control over phantom limbs and reducing PLP.

Although at least 80 interventions exist to treat phantom limb pain, it is rarely treated successfully. For many sufferers, the ensuing chronic pain results in a decreased quality of life and an increased dependence upon costly medicines and medical resources. The potential efficacy of treating PLP with a single or tripartite mirror offers hope for finding a viable pain intervention.

For more mirror pictures you can read this article in InMotion magazine by clinking this link: http://www.amputee-coalition.org/inmotion_online/inmotion-22-06-web/#/1/

FOR INDIVIDUALS WITH LIMB LOSS, PLEASE CLICK ON  THIS LINK FOR RESOURCES AND SUPPORT FROM THE AMPUTEE COALITION http://www.amputee-coalition.org/

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Thank you for reading this article. I’m dedicating my personal and professional life to supporting people with limb loss.  My learning journey with chronic physical pain is a result of my personal experience with phantom limb pain.  I was graced with the gift of self-acceptance upon realization that my forearm was amputated.  As a result, I’ve learned a lot about what it takes to put an end to phantom limb and emotional pain.  And, as I learn and grow, I teach self-compassion and give advice I use myself, in the hopes that it helps you to improve your own life.

Roberta

Body Image, Sexuality, and Coping with Limb Loss

APRIL IS LIMB LOSS AWARENESS MONTH

The Amputee Coalition received a letter from President Obama recognizing April as Limb Loss Awareness Month. Below is a link to that letter.

http://limblossawareness.org/content/documents/limb-loss-awareness-4-2-12.pdf

Losing a limb is extremely disabling. There are approximately 1.9 million people in the United States with some form of limb loss.  Some amputations are the result of injury or disease; others are born with a limb difference.  Losing all or part of a limb is a life-changing event that can cause grief and decreased self-esteem.  An amputee loses part of his or her physical self when they lose a limb and the change in appearance is final.  Grieving, therefore, is both normal and expected.  Loss of body image can have devastating effects on a person’s identity.  Body image refers to our perceptions, thoughts, feelings and reactions to our looks.  The loss experienced by a person with an amputation is not only the physical loss of a body part but also the loss of their former appearance, function, athletic ability, and hobbies.  Changes in an amputee’s physical appearance may initially make it more difficult to engage in personal relationships and may have significant impact on their ability to view themselves sexually.  In addition, amputated limbs often cause feelings of revulsion in the patient, family member, and society.

Children may feel different from their peers; adults may find that their negative self-image affects their sexual relationships.  Research has shown that when faced with an amputation, people who feel self-conscious about their residual limb respond by avoiding social situations.  Unfortunately, this also can trigger depression.  Traumatic combat injuries have unique considerations in regards to the high lethality of modern weaponry, the persistent threat of being in a war zone, the lack of emotional resources/support, and delay in medical attention.   Combat injuries powerfully impact the service members, their children and families.  Difficulty in readjusting to life back home may alter family relationships and support, contributing to a vicious cycle of psychological and social challenges for both the person with limb loss and the family.  Below are video clips of individuals with limb loss demonstrating determination, grace, and courage.

The Amputee Coalition also has several public service announcements running—some on a jumbotron in Times Square, NY. Here are links if you are interested in viewing these great pieces.

http://www.youtube.com/watch?v=mWv_m-1AGc4&list=UURL1kJhUwALQy606TnKFlLw&index=1&feature=plcp

http://www.youtube.com/watch?v=79MlNWF511o&list=UURL1kJhUwALQy606TnKFlLw&index=2&feature=plcp

http://www.youtube.com/watch?v=FqP-S1JsLZk&list=UURL1kJhUwALQy606TnKFlLw&index=3&feature=plcp

Coping With Chronic Pain and Stress

By learning how thoughts and actions influence our feelings and coping we can learn to reduce and better manage life’s emotional challenges.  The figure below is the Cognitive Behavioral Therapy (CBT) paradigm for negative automatic thoughts leading to painful emotions and resulting in unhelpful (actions) coping strategies.  The thinking process is repetitious and circular, whereby thoughts lead to feelings that lead to actions continuously ( I could not add directional arrows to my diagram).   Thoughts, behaviors, and emotions affect our physical experiences and sensations, including emotional pain, and vice versa.  How we think also affects the severity, intensity, and duration of chronic pain episodes, emotional pain, stress levels, and disease progression (i.e., diabetes, terminal cancer, arthritis,  back pain, etc.)

THOUGHT

                                          “I’m not achieving enough”

PHYSICAL PAIN & STRESS LEVEL INCREASE

                                         w/NEGATIVE THINKING

ACTIONS = “Isolate”                                             FEELINGS = “Fear”

This approach teaches us ways to change thinking and behaviors to best cope with stress/pain and reduce negative thoughts.  You may believe that talking about your fears is a weakness.  Or you may perceive that other people believe these things, causing you to feel embarrassed and angry.  Either way, you might hide your fears from others, criticize or make excuses for yourself, and smile when you are feeling sad.  It is estimated that a deep thinker (perfectionist) has somewhere around 60,000 automatic thoughts per day.  Research shows that for most people, 80% of thoughts are negative and repetitious.  As the saying goes, “It is a bad neighborhood in my head and I try not to go there unsupervised.”

You may believe that there is nothing that can be done to stop your negative thinking and to better cope with stress.   Learning to tune-in to ourselves, learning to listen to ourselves takes practice. You may be dependent on others for approval in order to cope or don’t talk to anyone about your concerns.  Lastly, you may believe that you need to get rid of your problems on your own in order to live your life.  You believe that you have to endure alone. These beliefs are mental traps!!!

Thinking you are not achieving enough during these unpredictable times can be stressful and tiring and this can make it hard to think clearly, leading you to feel frustrated and hopeless.  However, it is possible to improve your mood and to learn to cope effectively with your problems that remain unresolved.  By learning to focus on the things you have control over, you can change parts of your reality by choosing how you will think and behave.

 Total reality is made up of at least the following parts:

1) What you see, hear, and can measure, 2) how others think and act, 3) how you think and feel, and 4) what you do.

EXAMPLE:    Different responses to negative thinking and stress can produce many types of  “realities.”

WHAT YOU SEE, HEAR, AND CAN MEASURE

My thoughts tell me I’m going to lose everything, I’m  not good  enough, and I must be worthless.

HOW OTHERS THINK AND ACT                                               1.  Supportive

2.  Dismissing

3.  Critical

 

HOW YOU THINK (you have a choice)                                    1.  This is what my mind does.

2.  I can change my thoughts.

3.  I can’t stand it!

WHAT YOU DO (you have a choice)                                        1.  Isolate

2.  Get angry with others.

3.  Appreciate what is good in my life.

4.  Learn techniques to cope effectively with stress.

Negative thoughts may be interfering with your life by keeping you from doing the things you want to do.  It is important to remember you do have some control over your thinking.  You may feel vulnerable and powerless when negative feelings appear.  But keep in mind (excuse the pun) that you can learn to notice your thoughts, feel your feelings, figure out if there’s something you need to do, and then go on with your life.  Life works best when you take charge of making change in your thinking.

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Thank you for reading this article.  My learning journey with chronic physical pain is a result of my experience with phantom limb pain.  I was graced with the gift of self-acceptance upon realization that my forearm was amputated.  Before my limb loss, I sacrificed my emotional and spiritual well-being for perfectionism and looked to others for approval at the cost of trusting my intuition and developing my self-worth.  My drive for perfection was crushed along with my arm.  I’ve learned a lot about what it takes to put an end to self-created emotional pain.  And, as I learn and grow, I teach self-compassion and give advice I use myself, in the hopes that it helps you to improve your own life.

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The Psychological, Social, and Physical Consequences of Amputation

John McFall-Manchester Courtesy of Wikipedia

John McFall-Manchester Courtesy of Wikipedia

Amputation of an arm or leg has multiple consequences. Common emotional and cognitive changes include grieving, depression, anxiety, and poor body image.  The experience of pain is also common following amputation; some pain is in the stump.  Other pain has neuropathic origins, such as phantom limb pain (PLP), the pain that is experienced “in” the missing limb.  In addition to the pain symptoms themselves, PLP can increase feelings of distress and decrease one’s quality of life.

A person with limb loss loses part of his or her physical self when they experience an amputation and the change in function and appearance are final. Physically, there is limb loss, stump pain, phantom pain and sensation.  Emotionally there is grieving, depression, anxiety, and poor body image. These challenges are common consequences of limb loss.  These symptoms can be worsened by the presence of phantom limb pain.

Emotional trauma following limb loss is influenced by a person’s age, type of limb loss, and the cause of amputation.  Limb loss is more likely to result in ”denial” for people who do not expect it than for people who lose a limb due to a long-term disease (e.g., diabetes).  Denial involves a failure to acknowledge the loss, or refusal to accept and adjust to the situation.  These responses can increase negative thoughts, negative feelings, physical pain, and seeking needed help.

Grief is a particularly prevalent reaction to limb loss.  It is a normal and expected reaction to the limb loss and change in a person’s identity.  The grief response includes emotional, behavioral and physical reactions.   Overcoming grief involves the process of acceptance that the limb is gone forever. Unresolved anger can prolong the grief process.  Anger usually occurs when an amputee feels helpless and powerless at the unexpected, undeserved, and unwanted situation in which they find themselves. A person may think, “Why did this happen to me?”

When amputations occur, body image change is likely to effect self-identity and self-esteem.  Loss of a limb by amputation can lead to long-term problems with an individual’s self-image.  These changes can include a higher degree of anxiety and depression, lower self-esteem and less satisfaction with life from negative thoughts about one’s appearance and self-worth.  In addition, amputated limbs often cause feelings of revulsion in the patient, family members, and society. This is a common and normal reaction to seeing the residual limb. When someone has suffered from limb loss the challenge is to recognize that it does not change the deepest, strongest most valuable part of a person.

Individuals with limb loss may find that their negative self-image affects their sexual and other social relationships.  When faced with an amputation, people who feel self-conscious about their residual limb respond by avoiding social situation.  Social avoidance/isolation also can trigger depression.  Individuals who lost limbs as a result of trauma and those with upper limb amputations appear to be most vulnerable to emotional disturbance.

The support and encouragement of medical staff, friends and family can have a very powerful effect on the ability to heal from the consequences of limb loss and finalize the stages of grieving. In spite of the challenges with amputation, many people with limb loss do adapt to lead normal, productive, happy lives, working, enjoying hobbies, and raising families.

For further resources on limb loss please check out  the link below for the Amputee Coalition.

http://www.amputee-coalition.org/limb-loss-resource-center/

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Thank you for reading this article. I’m dedicating my personal and professional life to supporting people with limb loss.  My learning journey with the challenges of amputation is a result of my personal experience with limb loss.  I was graced with the gift of self-acceptance upon realization that my forearm was amputated.  As a result, I’ve learned a lot about what it takes to put an end to self-created emotional pain.  And, as I learn and grow, I teach self-compassion and give advice I use myself, in the hopes that it helps you to improve your own life.

 

 

 

 

 

How To Use Mirror Therapy for Phantom Limb Pain: Instructions for Upper and Lower Limb Loss Patients

Tripartite Mirror Apparatus

Tripartite Mirror Apparatus

A mirror has been used previously to reduce or eliminate phantom limb pain in amputees and to generate phantom sensations (e.g., tingling) in normal subjects (Ramachandran & Rogers-Ramachandran, 1996).  I have developed a new apparatus that has generated intense phantom sensations in pilot participants (missing left arms) who experienced little relief following standard mirror treatment (missing limb behind a single mirror held at an angle).  The Tripartite Mirror Apparatus (TMA) uses three vertical mirrors, with panes oriented at angles and the use of a single mirror held at ninety degrees facing the mirrors.  The TMA enable viewers to see unusual multiple images of themselves from the side and the illusion of the missing limb intact (see below).  When both the individuals moved their remaining arms and hands while viewing the modified images, they experienced sensations and a sense of movement in the missing limb. This author is one of those individuals who have experienced complete and permanent cessation of phantom pain following use of the TMA.  The method induces sensations of tingling, movement, and temperature change in the hands and arms of some normal individuals (Peterzell, Cone, McQuaid, & Ramachandran, 2006).  The theory proposes that when a patient gets visual feedback that the phantom is obeying the brain’s commands; the learned paralysis is sometimes “unlearned.”  This suggests that a remarkably simple, inexpensive, and portable pain management program that uses visual input may be an effective and rapid-acting phantom limb pain treatment (Ramachandran, 2004).

Instructions: Mirror Practice – Protocol for Upper Limb Amputees Using a Three-panel Mirror

Instruction for using this simple pain management instrument for upper limb loss is as follows.  Select a comfortable standing/sitting position with your prosthesis off.  Close your eyes and focus your attention on your breathing.  Notice each breath as you inhale and exhale.  Notice the feeling of the air going into your lungs, your lungs expanding.  Notice the feeling of the air going out of your mouth or nose, with your lungs deflating.  Systematically relax the muscles in your body.  Relax your forehead, jaw, and tongue, feel your body relaxing, letting oxygen flow in and out of your lungs.  Continue to scan your body as you relax your shoulders, chest, stomach, legs and feet. When you are in a relaxed state, stand facing the center pane, place the amputated limb behind the angled mirror and open and close/move the surviving hand while viewing the reflections.  Your amputated limb should be hidden behind one of the side mirrors, as shown.  While facing the mirror, raise the intact arm and hand, as if to take an oath.  Without changing posture, look into the side pane, as shown, and adjust the angle of the hinged mirror until you see a rotated image of yourself.  When the mirror is viewed this way, it creates the illusion that your missing limb is intact, and that you can see it from the side.  Concentrate on the multiple visual images in the mirror appearing as if your amputated limb is in fact intact and moving freely.  To the best of your ability do not look at or focus on the moving of your actual intact limb.  Focus your visual attention on the illusion in the mirror.  Spend 15 minutes per day viewing the image and especially at any time you are experiencing a phantom limb pain episode.

Instructions: Mirror Practice – Protocol for Lower Limb Amputees Using a Three-panel Mirror

Select a comfortable sitting position with your prosthesis off.  Close your eyes and focus your attention on your breathing.  Notice each breath as you inhale and exhale.  Notice the feeling of the air going into your lungs, your lungs expanding.  Notice the feeling of the air going out of your mouth or nose, with your lungs deflating.  Systematically relax the muscles in your body.  Relax your forehead, jaw, and tongue, feel your body relaxing, letting oxygen flow in and out of your lungs. Continue to scan your body as you relax your shoulders, chest, stomach, legs and feet. When you are in a relaxed state sit facing the center pane, place the amputated limb behind the angled mirror Your amputated limb should be hidden behind one of the side mirrors, as shown.

While facing the mirror, raise your intact leg and foot, noticing the movement of your reflected leg.  Without changing posture, look into the side pane, as shown, and adjust the angle of the hinged mirror until you see a rotated image of yourself. When the mirror is viewed this way, it creates the illusion that your missing limb is intact, and that you can see it from the side.  Your task is to view the reflection of your intact leg and foot in the mirror, and imagine that the reflection that you see is, in fact, your missing limb.  Move your intact leg by bending your joints (e.g., toes, ankle, knee and thigh) in various ways.  You may want to imagine that you are telling both legs to move together, moving them as you did before the amputation.  Concentrate on the multiple visual images in the mirror appearing as if your amputated limb is in fact intact and moving freely.  To the best of your ability do not look at or focus on the moving of your actual intact limb.  Focus your visual attention on the illusion in the mirror.  Spends 15 minutes viewing the image per day and especially at any time you are experiencing a phantom limb pain episode.

For more mirror pictures you can read my article, Limb Loss: Seeking Relief Through the Looking Glass in InMotion magazine by clinking this link: http://www.amputee-coalition.org/inmotion_online/inmotion-22-06-web/#/1/

FOR INDIVIDUALS WITH LIMB LOSS, PLEASE CLICK ON  THIS LINK FOR RESOURCES AND SUPPORT FROM THE AMPUTEE COALITION http://www.amputee-coalition.org/

Dr. Cone is the developer of the Tripartite Mirror Apparatus (TMA) for the treatment of phantom limb pain.  A clinical trial has recently been completed with a cognitive behavioral intervention integrated with the TMA to treat phantom limb pain and psychosocial disability at the Veterans Administration Healthcare System. Published study results are expected in 2013.