What Does Phantom Pain/ Sensation Feel Like

What Does Phantom Pain/ Sensation Feel Like
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What Does Phantom Pain/ Sensation Feel Like/Phantom Pain is clinically defined as the perception of pain or discomfort in a limb that no longer exists.  Although PLP most commonly presents as a pathological sequelae in amputee patients, the underlying pathophysiology remains poorly understood. PLP can present along a wide clinical spectrum and varying severity of symptoms.  The condition should be differentiated from other related but separate clinical conditions, including residual limb pain (RLP).  RLP (formerly known as "stump pain") is pain that originates from the actual site of the amputated limb.  It is most common in the early post-amputation period and tends to resolve with wound healing. Unlike PLP, RLP is often a manifestation of an underlying source, such as nerve entrapment, neuroma formation, surgical trauma, ischemia, skin breakdown, or infection.[rx]

Phantom pain is a perception that an individual experiences relating to a limb or an organ that is not physically part of the body. Limb loss is a result of either removal by amputation or congenital limb deficiency.[rx] However, phantom limb sensations can also occur following nerve avulsion or spinal cord injury.

Mechanisms Phantom Leg Syndrome

The mechanism responsible for PLP and PLS is still debatable, however a lot of theories had been given. Following amputation, there may be formation of neuroma showing abnormal spontaneous activity, and on mechanical and chemical stimulation, which is thought to be due to upregulation of sodium channels. Furthermore, other factors though to have an influence on the PLP are decreased threshold for PLP, increased c-fiber activity, inverse relationship between pressure pain threshold and phantom limb pain intensity, abnormal activity of dorsal root ganglion, and so on.[rx,rx] Sympathetic nervous system also plays a role in maintaining PLP.[rx,rx] Further, there is spinal plasticity, i.e., increase in the excitability of spinal neurons, more accessibility of Aδ- and c-fibers to other pathways.[rx] N-methyl-D-aspartate receptor systems are also believed to have a role in “wind-up” phenomenon seen in PLP.[rx] Furthermore, spinal and cerebral reorganization occurs and there is a relationship between degree of reorganization and pain.[rx,rx]

Types of Phantom Leg Syndrome

There are various types of sensations that may be felt:

  • Sensations related to the phantom limb's posture -  length and volume e.g. feeling that the phantom limb is behaving just like a normal limb like sitting with the knee bent or feeling that the phantom limb is as heavy as the other limb. Sometimes, an amputee will experience a sensation called telescoping. This is the feeling that the phantom limb is gradually shortening over time.
  • Sensations of movement - (e.g. feeling that the phantom foot is moving).
  • Sensations of touch, temperature - pressure and itchiness. Many amputees report of feeling heat, tingling, itchiness, and pain.

Causes of Phantom Leg Syndrome

  • Peripheral Nerve Changes - During the amputation, there is a significant amount of trauma that occurs in the nerves and surrounding tissues. This damage disrupts the normal afferent and efferent signals involved with the missing limb. The proximal portions of the severed nerves start to sprout neuromas, and the nerves become hyper-excitable due to an increase in sodium-channels and resulting spontaneous discharges. [rx]
  • Spinal Cord Changes - In the spinal cord, a process called central sensitization occurs. Central sensitization is a process where neural activity increases, the neuronal receptive field expands, and the nerves become hypersensitive. This is due to an increase in the N-methyl-D-aspartate, or NMDA, activity in the dorsal horn of the spinal cord making them more susceptible to activation by substance P, tachykinins, and neurokinins followed by an upregulation of the receptors in that area. This restructuring of the neural components of the spinal cord can cause the descending inhibitory fibers to lose their target sites. The combination of increased activity to nociceptive signals as well as a decrease in the inhibitory activity from the supraspinal centers is thought to be one of the major contributors to phantom limb pain. [rx]
  • Brain Changes - Over the past few years, there has been significant research into cortical reorganization and is a commonly cited factor in phantom limb pain.  During this process, the areas of the cortex that represent the amputated area are taken over by the neighboring regions in both the primary somatosensory and the motor cortex. Cortical reorganization partially explains why nociceptive stimulation of the nerves in the residual limb and surrounding area can cause pain and sensation in the missing limb. There is also a correlation between the extent of cortical reorganization and the amount of pain that the patient feels. [rx]
  • Psychogenic Factors - Chronic pain has been shown to be multi-factorial with a strong psychological component. Phantom limb pain can often develop into chronic pain syndrome and for treatment to have a higher chance of success the patient's pain behaviors and pain processing should be addressed. Depression, anxiety, and increased stress are all triggers for phantom limb pain. [rx] As with any other kind of pain, you may find that certain activities or conditions will trigger PLP. Some of these triggers might include-
  • Touch
  • Urination or defecation
  • Sexual intercourse
  • Angina
  • Cigarette smoking
  • Changes in barometric pressure
  • Herpes zoster
  • Exposure to cold.

Symptoms of Phantom Leg Syndrome

It onset within the first few days of amputation. Comes and goes or is continuous. Often affects the part of the limb farthest from the body, such as the foot of an amputated leg. May be described as shooting, stabbing, boring, squeezing, throbbing or burning. Sometimes feels as if the phantom part is forced into an uncomfortable position. May be triggered by pressure on the remaining part of the limb or emotional stress.[rx]

  • Onset within the first week after amputation, though it can be delayed by months or longer
  • Pain that comes and goes or is continuous
  • Symptoms affecting the part of the limb farthest from the body, such as the foot of an amputated leg
  • Pain that may be described as shooting, stabbing, cramping, pins and needles, crushing, throbbing, or burning

Phantom limb sensation - is a nonpainful feeling or sensation in the body part that was amputated. Phantom sensations are more commonly reported than stump pain or phantom limb pain. The sensations feel like the limb felt before the amputation, and are related to the same sense of awareness that helps people distinguish "myself" from others. The sensations occur from the interaction of current sensory inputs from your limb, and the internal "models" of the body in the brain.

  • Early on, the phantom limb resembles the limb shape prior to amputation. It may be perceived in a certain position, have feelings of warmth or cold, itching, or tingling.
  • Following amputation, it is common to "forget" the limb is absent and to attempt to use it—a sensation that can result in a fall.
  • It is also common for people who experienced amputation to feel as though the upper portion of the limb is missing, or has shrunk. This phenomenon, called telescoping, is caused by a change in the internal model of the body in the brain. It also can cause the sensation that the amputated part of the limb is floating, or has even moved up inside the stump.
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Stump pain is common in the postoperative period. It is felt only in the remaining body part, or stump. Stump pain may be felt at the incision or deeper into the residual limb. This pain is often described as sharp, burning, stabbing, or "electric." Stump pain, which normally fades as the surgical scar heals, can coexist with phantom limb pain.

Phantom limb pain is a painful or unpleasant sensation in the lost body part. Sensations can include:

  • Tingling, burning, and cramping (the most common pain felt from amputation)
  • Shooting, stabbing, boring, squeezing, or throbbing pain
  • Pain just like that experienced at the time of the accident or serious injury
  • A feeling like the phantom limb is in a forced and uncomfortable position

Since phantom pain is related to the brain and nervous system, it can also be experienced in the nonamputated part of the limb, in the opposite nonamputated limb, or even in the neck or back. Phantom limb pain usually affects the part of the limb farthest from the body. For example, lower-limb phantom pain will usually be experienced in the toes, heel, instep, or top of the foot. The pain may be continuous, or it may come and go during the day. In many cases it occurs randomly.

Phantom pain may be triggered by

  • Pressure on the remaining part of the limb from objects such as clothing
  • Emotional stress
  • Forgetting the limb’s absence and attempting to use it
  • A poorly fitting artificial limb
  • Stump pain

Diagnosis of Phantom Leg Syndrome

There are no medical tests to diagnose phantom limb pain. Diagnosis is made based on your symptoms and the history of what occurred before the pain started. For example, was there illness, trauma, or surgery before the amputation? Reporting clearly and precisely what seems to trigger the phantom pain will help your physical therapist diagnose the problem. The physical therapist may have you complete questionnaires about your symptoms and functional difficulties to help clarify details of your problem and how it is affecting your daily life and activities. All other possible sources of your pain symptoms must be ruled out.

Your physical therapist will

  • Perform a careful examination of the bone and soft tissues of your stump to identify possible skin breakdown, infection, or abnormal pressure on weight-bearing contact points.
  • Gently tap on the stump to identify possible nerve injury or a neuroma (an overgrowth of nerves in the stump).
  • Check the fit of your prosthetic limb. (It is common for the shape of your stump to change over time, affecting the prosthetic's fit and comfort.)
  • Check to make sure that you are using the correct stump socks, and that you are putting your prosthetic on properly.
  • Explain how any of the above changes can cause skin breakdown and provoke pain problems.

Your physical therapist will work with your physician to determine the need for additional tests to rule out other conditions, such as poor circulation, and may refer you for X-rays to identify bone spurs or other abnormal bone formations.

Treatment of Phantom Leg Syndrome

Non-drug Therapies

Medicine alone may not provide enough relief, so your doctor may recommend other treatments as well, such as:

  • Nerve stimulation - You may already know about TENS (transcutaneous electrical nerve stimulation) devices, sold at drugstores for muscle pain relief. They send a weak electrical current via sticky patches you put on your skin. The idea is that it can interrupt pain signals before they get to your brain.
  • Mirror box therapy - Picture a box with no lid. It has two holes -- one for your remaining limb and one for the stump and a mirror in the center. When you put your limb and stump inside, you see the reflection of the intact arm or leg in the mirror. It tricks your brain into thinking you have both limbs as you do therapy exercises. Research shows this can help relieve pain in a missing limb.
  • Acupuncture - A skilled practitioner will insert very thin needles into your skin at specific places. This can prompt your body to release pain-relieving chemicals.
  • Spinal cord stimulation - Your doctor will put tiny electrodes inside your body along your spinal cord and send a small electrical current through them. In some cases, this can help relieve pain.
  • Brain stimulation - It’s similar to spinal cord stimulation, except the electrodes send the current to the brain instead. A surgeon will place the electrodes in the right spot in your brain. Scientists are still studying how well it works, but for some people, the research is promising.
  • TENS  - shows moderate evidence supporting its use. Low-frequency and high-intensity are thought to be the most effective for phantom limb pain.
  • Mirror therapy - A small randomized trial of mirror therapy in patients with lower leg amputation showed a significant benefit of phantom limb pain.[rx] Another study was minimally helpful.
  • Dorsal Column Stimulator(DCS) -  (an implantable device which stimulates transdural the dorsal columns of the spinal cord) is often an effective therapy for phantom limb pain. The exact mechanism of pain relief from DCS is unknown.
  • Virtual and Augmented Reality - has provided some novel opportunities to utilize technology as an advanced form of "mirror therapy".  Researchers have been able to program myoelectric movement patterns from the residual limb into the virtual or augmented reality headsets and then correlate those movements to the movements of the "complete" limb in the virtual world.  This has been shown in several case studies to be effective treatments for phantom limb pain, but no large studies have been conducted. [rx] [rx]

Your habits. Don’t overlook the power of lifestyle choices to bring some relief. Some things to try:

  • Find distractions to take your mind off of the pain
  • Get (or stay) physically active
  • Practice relaxation techniques, including meditation and visualization
  • Massage of the residual limb
  • Use of a shrinker
  • Repositioning of the residual limb by propping on a pillow or cushion
  • Mirror box therapy
  • Biofeedback
  • TENS (transcutaneous electrical nerve stimulation)
  • Virtual reality therapy
  • Imagery
  • Music.
  • Biofeedback shows limited evidence.
  • Acupuncture research is still ongoing.
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Pharmacotherapy

  • NSAIDs/Tylenol - are the most commonly used treatment for phantom limb pain. The mechanism of action is unknown.[rx]
  • Opioids - Randomized controlled trials have demonstrated the effectiveness of opioids for neuropathic pain and phantom limb pain. Drugs such as codeine and morphine may ease phantom limb pain for some people, but not everyone. Tell your doctor if you have a history of substance abuse before you take one of these drugs. Should be used in conjunction with antidepressants or neural modulating agents (i.e., gabapentin, pregabalin). [rx]
  • Antidepressants - are commonly used for phantom limb pain. Amitryptiline, in particular, is the TCA of choice as it has shown good results, but other studies looking at Nortryptyline and desipramine have shown them to be equally effective. Duloxetine is another medication that has been showing some positive results. [rx]
  • Anticonvulsants (Gabapentin, Pregabalin) - have shown mixed results. [rx] These drugs treat seizures, but some can also help with nerve pain. Examples include carbamazepine (Carbatrol, Epitol, Tegretol), gabapentin(Gralise, Neurontin), and pregabalin (Lyrica).
  • Calcitonin  - The mechanism of action of calcitonin in treatment of PLP is not clear. Studies relative to its therapeutic role have been mixed [rx, rx].
  • NMDA Receptor antagonist-  mechanism is not clear. Memantine has had mixed results.
  • Beta-blockers (propranolol) - and calcium channel blocker (nifedipine) show unclear data. A sympathetic block may also help.
  • Botulinum toxin type B injections - have been used to treat hyperhidrosis (excessive sweating) in the post-amputation patient.  Hyperhidrosis can not only hinder the use of a prosthetic but can adversely affect the course of phantom limb and residual limb pain. Treatment of the hyperhidrosis with botulinum toxin type B injections has shown in several small studies to reduce residual limb pain, phantom limb pain, and sweating. [rx]  Botulinum toxin type A is also being investigated, but so far has not been shown to decrease pain intensity compared to lidocaine/methylprednisolone. [rx]
  • Capsaicin - have been shown in some small studies to reduce hypersensitivity and phantom limb pain, but the evidence is still weak and requires more investigation. [rx][rx]
  • Tricyclic antidepressants - Drugs such as amitriptyline (Elavil), nortriptyline(Pamelor), and tramadol (Conzip, Ultram) can ease nerve pain by changing chemicals in your body that send pain signals.
  • Biofeedback, Integrative, and Behavioral Methods - Although there are earlier reports suggesting temperature biofeedback to be helpful for burning sensation of PLP, there is no specific evidence to match specific types of PLP with specific biofeedback techniques [rx]. There is also a case report of visual feedback helpful in reduction of phantom pain [rx].

Other painkillers - A few other types may help with phantom limb pain, including:

  • NMDA receptor antagonists, such asketamine and dextromethorphan
  • Over-the-counter medicine, such as aspirin and acetaminophen
  • A shot of a pain-blocking drug in the area where you got the amputation

Treatments for phantom limb pain.

Pharmacotherapy Surgical/invasive procedures Adjuvant therapy
Opioids Stump revision Transcutaneous nerve stimulation
 Morphine Nerve block Mirror therapy
Tramadol Neurectomy Biofeedback
Tricyclic Antidepressants Rhizotomy  Temperature biofeedback
 Amitriptyline Cordotomy  Electro myographic biofeedback
 Nortriptyline Lobectomy Massage
 Imipramine Sympathectomy Ultrasound
 Desipramine CNS stimulation Physiotherapy
AntiConvulsants  Spinal cord stimulation Sensory discrimination training
 Carbamazepine  Deep brain/thalamus stimulation Prosthesis training
 Oxcarbazepine  Cortical stimulation Cognitive behavioral pain management
 Gabapentin Electroconvulsive therapy
 Pregabalin
Sodium channel blockers
 Lidocaine
 Bupivacaine
 Mexiletine
NMDA receptor antagonist
 Memantine
Ketamine

Adapted from [rx, rx].

Low- and very low-quality studies

Treatment type Specific treatment Number of studies Outcomes Comments
Antidepressants (tricyclic) Amitriptyline
Doxepin
Two case studies
One case series (n=5)
Reduction in pain intensity Side effects
Case series combined medication
Anticonvulsants Gabapentin
Pregabalin
Topiramate
Carbemazepam
Clonazepam
One case series (n=7)
Five case studies
Reduction in pain intensity Small sample sizes
Calcitonin Calcitonin One review
One case series (n=10)
One double-blind, cross-over trial (n=10)
Reduction in pain intensity
No reduction in pain intensity
Review focused mainly on acute
PLP
Side effects in all studies
NMDA receptor antagonists Ketamine One double-blind, cross-over trial (n=10)
One case series (n=3)
One case study
One case study
Reduction in pain intensity
Pain exacerbated
Side effects in all studies
Dextromethorphan and methadone have mixed analgesic effect
Memantine
Dextromethorphan
Methadone
One case series (n=2)
One case series (n=3)
One case series (n=4)
Reduction in pain intensity
Reduction in pain intensity
Reduction in pain intensity
Local anesthetics Lidocaine
Mexiletine
Ropivacaine
Bupivacaine
One randomized study (n=14)
One case series (n=3)
One case series (n=8)
One case study
No reduction in pain intensity
In 2/3, pain intensity reduced
In 6/8, pain reduction achieved
Pain intensity reduced
Compared with botox
Small sample size
Peripheral nerve block
Contralateral myofascial injection
Opioids Morphine
Fentanyl
One case study (n=12)
Three case studies
Reduction in pain intensity Small sample sizes
Beta-blockers Propranolol Three case studies Reduction in pain intensity Dated
Serotonin reuptake inhibitors Fluoxetine
Duloxetine
Milnacipran
Three case studies Reduction in pain intensity Small sample sizes
Surgery DREZ Two case series Unable to determine PLP effect due to mixed group
Two case series 36% and 64% achieved pain reduction, respectively Mixed samples and small numbers with PLP
One case study Reduction in pain intensity Single case
Acupuncture Acupuncture
Electroacupuncture
Three case studies
One case series (n=9)
Reduction in pain intensity
In 5/9, 50% reduction in pain intensity
Small sample sizes
Small sample size
Farabloc Farabloc One double-blind, cross-over study
(n=52)
Reduction in pain intensity Large dropout high risk of bias
Feedback Biofeedback Two case series (n=16; n=9)
Two case studies
Reduction in pain intensity Small sample sizes
Sensory discrimination One controlled comparative study (n=10) Reduction in pain intensity Inactive placebo
Low sample size
Hypnosis Hypnosis Two case series (n=25; n=20) Reduction in pain intensity Mixed group PLP/stump pain
Reflexology Reflexology One case series (n=10) Reduction in pain intensity Small sample size
Stimulation therapies TENS Two trials
Seven case series or case studies
Reduction in pain intensity Dated
Small sample size
Small numbers
SCS Five case series Reduction in pain intensity Lack of specificity and small sample sizes
Motor cortex stimulation Six case series Variable results In largest sample (n=5), only one achieved a reduction in pain
DBS
ECT
Two case series
One case series (n=2)
One case study
Variable results
Reduction in pain intensity
Small sample sizes
Small sample sizes
Therapeutic touch Therapeutic touch Two case series Reduction in pain intensity Total number n=6

Abbreviations: DBS, deep brain stimulation; DREZ, Dorsal-Root Entry Zone; ECT, electroconvulsive therapy; NMDA, N-methyl-D-aspartate; PLP, phantom limb pain; SCS, spinal cord stimulation; TENS, transcutaneous electrical nerve stimulation.

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PreEmptive Analgesia and Anesthesia

  • Preemptive use of analgesics - and anesthetics during the preoperative period is believed to prevent the noxious stimulus from the amputated site from triggering hyperplastic changes and central neural sensitization which may prevent the amplification of future impulses from the amputation site [rx].
  • However the results - of the studies in this area have not been definitive. A recent study reported the decrease in PLP at six months following amputation when optimized epidural analgesia or intravenous patient controlled analgesia was started between 48 hours preoperatively and 48 hours postoperatively [rx]. Prolonged postoperative perineural infusion of ropivacaine 0.5% was reported to prevent or reduce PLP and sensations after lower extremity amputation [rx].

NMDA Receptor Antagonist

  • The mechanism of action of NMDA receptor antagonism in PLP is not clear. Memantine has shown some benefits in some case studies but controlled trials have shown mixed results [rx, rx]. A review concluded that memantine may be useful soon after amputation rather than for use in chronic neuropathic pain conditions [rx].

Other Medications

  • The beta blocker propranolol and the calcium channel blocker nifedipine have been used for the treatment of PLP [rx]. However, their effectiveness is unclear and further studies are needed. Flupirtine, an NMDA antagonist and potassium channel agonist, has been reported to be effective when used together with opioids in cancer-related neuropathic pain but needs further studies for other etiologies [rx].
  • Transcutaneous electrical nerve stimulation has been found to be helpful in PLP [rx]. Historically, there have been multiple studies showing the effectiveness of TENS of the contralateral limb versus ipsilateral to decrease PLP [rx]. Though there is no strong evidence, low-frequency and high-intensity TENS is thought to be more effective than other doses [68]. TENS devices are portable, are easy to use, and have few side effects or contraindications.

Surgical Intervention

  • Surgical interventions are usually employed when other treatment methods have failed. A case report relates the effectiveness of lesioning the dorsal root entry zone (DREZ) on upper limb phantom pain resulting from brachial plexus avulsions [rx]. Another case report showed that, for selected patients, who have not obtained adequate relief with medical management, spinal cord stimulation was found to be effective [rx]. Case reports of improvement of PLP with deep brain stimulation of the periventricular gray matter and thalamic nuclei have been published [rx]. Motor cortex stimulation was also found to be helpful in a case of PLP [rx].

Electroconvulsive Therapy

  • A case report of positive outcome has been published even though the mechanism and role of ECT relative to PLP is not well understood [rx].

Physiotherapy

All physical therapists are prepared through education and experience to treat limb amputation conditions. However, you may want to consider:

  • A physical therapist who is experienced in treating people with limb amputation conditions. Some physical therapists have a practice with a rehabilitation focus, including expertise in prescription of limb prosthetics and prosthetic training.
  • A physical therapist who is experienced in treating chronic pain conditions.
  • A physical therapist who is a board-certified clinical specialist, or who completed a residency or fellowship in orthopedics or geriatrics with a rehabilitation physical therapy clinic. This physical therapist has advanced knowledge, experience, and skills that may apply to your condition.
  • Your physical therapist may provide hands-on treatment and other interventions and exercises. Your treatment plan may include:

Electrical stimulation

  • TENS (transcutaneous electrical nerve stimulation)
  • Electromyofeedback
  • EMG biofeedback

Manual Therapy

  • Massage
  • Manipulation (gentle limb movements performed by the physical therapist)

Stump Management

  • Skin care
  • Stump sock use
  • Stump shrinker (an elastic sock to prevent swelling) use

Prosthetic Fittings and Proper use Training

  • Your physical therapist may perform and/or refer you for proper prosthetic device fittings, and help train you in the safe usage of your prosthetic device.

Technology

  • Mobile applications, such as the RecogniseTM app, can help “retrain” and “remap” how the brain sends pain to a body region. Your physical therapist will recommend the use of any technology that may apply to your specific condition.

Nervous System Treatments

Treatment that focuses on improving how the nervous system is processing sensations from the amputated limb can help change the brain’s representation or body image of the affected part and improve nervous system function. Your physical therapist may prescribe the following treatments/exercises:

  • Desensitization - This treatment helps modify how sensitive an area is to factors like clothing pressure or touch.
  • Graded motor imagery/movement imagery training - These imagery exercises help your brain process information about your amputated limb more accurately, which can help you form a clearer image of the affected limb to improve or resolve phantom pain.
  • Mirror visual feedback/mirror box therapy - This treatment uses a mirror or mirror box to "trick" your brain into believing the reflection of your nonamputated limb is actually your opposite limb. The brain adapts how it processes perception and sensation of the amputated limb, which can help reduce phantom sensations.

The above exercises should only be performed under the guidance of a trained physical therapist. For more detailed information on what these treatments involve,

Complications

When the above phantom sensations become intense enough for the amputee to define them as painful, they are called phantom pain. Phantom pain includes the following types of neuropathic painexperienced after operation:

  • Phantom limb pain - Postoperative neuropathic pain of the removed limb
  • Phantom tooth pain - Postoperative neuropathic pain of the oral cavity
  • Phantom breast pain - Postoperative neuropathic pain of the removed breast
  • Phantom testicle pain - Postoperative neuropathic pain of the removed testicle
  • Phantom viscus pain - Postoperative neuropathic pain of the removed internal organs.

In most cases, phantom pain refers to phantom limb pain. Phantom pain is the painful sensation referred to the absent limb. It is also a conscious feeling of a painful limb after the limb has been amputated.

References

 

What Does Phantom Pain/ Sensation Feel Like

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