Real or all in your mind?-

Is it just me?

Have I lost the plot?

A few helpful facts to start with (something I found on the net):-

About 80% of amputees experience some kind of “phantom” sensation in their amputated limbs. However, up to half of those who have them do not receive any treatment for or relief from their pain. This makes phantom pain a chronic pain condition

What is Phantom Limb Pain?

After a limb is removed, you may continue to feel it, as though it were still there. Phantom limb pain is not the same thing as stump pain, which is felt in and around the incision following surgery. Stump pain is localized to the amputation site, while phantom pain is felt in some part of the leg that is no longer attached.

Many people describe burning sensations in their toes though they may be missing their entire leg below the knee. This can be a confusing and even scary sensation, leading some people to believe that they are losing their minds. How can you feel pain in a limb that no longer exists?

Theories about Phantom Pain

No one knows for sure why amputees have phantom pain, but a few possible explanations are widely believed to be true.

·        Memory of limb painsome researchers theorize that after a limb is damaged beyond repair, the brain is “used to” feeling the pain. Even after the limb has been removed, the brain continues to sense the same kind of pain. It is like having a memory of the pain because the pain is wired into the brain.

·        Nerve bundle stimulationthe severed nerves around the amputation site either misfire or are stimulated in some way, sending a pain message to the brain. These are the same nerves that used to reach all the way into the limb. Sometimes following surgery, these nerves form bundles called neuromas. When they fire, the brain interprets these signals as if the nerve was still intact, and “feels” pain in the toes.

·        Rewiring of the nervous system there has been evidence that when a limb is amputated, changes take place in the brain and spinal cord that cause pain to be interpreted differently than before. It is not yet clear, however, if this is a cause of phantom pain or if this happens as a result of it.

Symptoms of Phantom Limb Pain

Regardless of its cause, phantom pain can be a debilitating condition. Pain is often described as burning, stabbing and throbbing -- typical descriptor words for neuropathic pain. Phantom pain may happen in a continuous cycle, or it may be brought on by outside factors such as temperature change, stress or stump irritation.

Most people describe their phantom pain as if it were coming from the distal parts of the amputated limb. In other words, feet, toes or hands. Phantom sensations are more common in the first few months after surgery than they are several months down the road, but they can happen at any time after an amputation. So how do you treat pain that isn’t there?

Treatment for Phantom Pain

Like most chronic pain conditions, no single treatment approach works for everybody. A number of medications complementary and alternative treatments out there work for phantom pain. Here are some of the most common approaches.

·        Medication – because it is considered a neuropathic disorder, antidepressants and anticonvulsants are often prescribed for phantom pain. NSAIDSs, opioids and muscle relaxants are also on the list of medications. As with other chronic pain conditions, finding the right medication can take time and patience. Sometimes successful phantom pain relief takes a combination of these medications.

·      Mirror therapy many therapists use mirrors in their treatments to show the brain into a healthy limb in place of a stump. This usually involves placing both limbs in a mirror box, which makes the amputated limb appear intact. The individual is then asked to perform exercises with “both” limbs. This tricks the brain, and effectively reduces phantom pain for some people.

·        Stump stimulation – using TENS, applying pain-relief patches or rubbing the stump can relieve phantom pain in some people. Using hot packs and cold packs can work for some people. Providing an alternate sensation from the stump can interrupt pain signals.

·        Cognitive therapies – some people find relief from their phantom pain through hypnosis, relaxation or guided imagery. These approaches can change the way the brain interprets phantom sensations, including phantom pain.

Usually more than one treatment approach is used to get phantom pain under control. Some people, however, may require more invasive forms of treatment. These include additional surgery to untangle nerve bundles at the amputation site, stimulation of the spinal cord or the brain to change the way pain is interpreted and implantation of pain pumps that deliver medications directly to the spinal cord.


Recommended Treatments for Phantom Pain

No one treatment has proven to be completely effective for all sufferers. However, there are many

Different treatments, which may be helpful to some people. If you suffer from PLP you should always

Consult your Rehab Consultant, Prosthetist, GP or a specialised pain nurse / clinic. Some suggested

Palliatives, as they cannot be called cures, are listed below.

Medications / Drugs

• Anti-seizure drugs (such as Gabapentin, Pregabalin, Carbamazepine and Valproic Acid) act directly on

The nerves and brain to alter neurotransmission. They have a calming effect on the residual limb,

Which may have become overactive after amputation.

• Antidepressants (such as Amitriptyline and Nortriptyline).

• Opioids (such as Morphine, Oxycodone, Methadone, Tramadol, Codeine and Pentanyl). These mimic

The pain-killing chemicals released by the brain. Effective immediately following surgery, but often


• Others medications include Calcitonin, Baclofen, Dextromethorphan, Capsaicin, Clonidine, Ketamine

And Tizanidine.


• Preoperative – It is general practice to give an individual scheduled to undergo amputation surgery

An epidural in the 72-hr period prior to amputation. It is believed that the pain prior to amputation

Can be imprinted on the brain and create what is called a “pain pathway”. The epidural injection can

Block the pathway and reduce the pain imprint on the brain.

• Post Operative Anaesthetics – These are used to block the transmission of pain from the nerve cells

To the brain. These work for a limited period of time. (Examples include Mexiletine, Lidocaine,

Marcaine, Novocaine, Pontocaine and Xylocaine).

• Nerve Blocks - Injections into the nerve, which chemically deaden the relevant nerve endings.

Medications used include local anaesthetics, steroids and opioids.

Body Stimulation

• Spinal cord stimulation (SCS) - This is a reversible surgical procedure for the management of chronic

Pain. It is a therapy that involves the stimulation of nerve fibres in the spinal cord. This stimulation

Inhibits, or blocks, the transmission of pain signals to the brain. It is generally used when all other

Pain treatments have failed.

• Acupuncture - A method for treating medical conditions by pricking certain points on the skin with

Needles. The needles are then stimulated manually or by passing a low electric current through

Them. There are a number of theories on why acupuncture works, including the belief that the

Needles stimulate the body’s own natural painkillers (Endorphins).

• Massage - A method of rubbing and kneading the skin, muscles and joints. Massage increases

Circulation and stimulates the muscles, which can alleviate discomfort.

• Chiropractic - A method of manipulating joints, especially the spinal cord and vertebrae. It is

Believed that if the spine is out of alignment the tension can create an imbalance, affecting the

Nervous system. A Chiropractor will try to realign the spine, to alleviate pain.

• Cranial Sacral Therapy – This is a restorative therapy, where the cranium and spine are gently

Massaged. The missing limb may also be massaged while the patient visualises the lost limb. The

Limbless Association

April 2011

Therapist uses specific techniques on the head and spine, down to the sacrum, to release tension

And energy blocks. This therapy can be used in conjunction with medication and visualisation


• Desensitisation – Nerve endings obviously become highly sensitive following an amputation.

Rubbing, massaging and stimulating the stump can help to desensitise the nerves and alleviate pain.

A lack of blood to the stump is also considered to be one of the probable causes of phantom pain, so

Frequent exercise, including flexing and relaxing the muscles of the residual limb, can help to combat

Phantom pain.

Electrical Stimulation

• Acupuncture (see Body Stimulation).

• Transcutaneous Electrical Nerve Stimulation (TENS) - Electrical treatment using a current of

Electricity at a low frequency. This treatment provides pain relief through nerve stimulation.

• Microcurrent Electrical Therapy (MET) – An alternative treatment using electricity at a low

Frequency. This treatment also provides pain relief through nerve stimulation.

• Spinal Cord Stimulation (see Body Stimulation).

Cognitive / Psychotherapy

• Mirror Visual Feedback – A mirror is placed to reflect the opposite limb so it looks as if the phantom

Limb has returned. Using exercises and movement of the opposite limb it can help to relieve the

Feelings of the phantom limb and therefore the pain.

• Hypnotherapy - A sleep-like state in which subjects act upon external suggestion. Much of our

Bodily movements are controlled by the subconscious mind. The subconscious mind is conditioned

To expect/experience certain sensations from the limbs. Although the limbs don’t exist, the

Subconscious mind continues to experience the previously learned sensations and expect certain

Responses. The Hypnotherapist re-trains the subconscious mind. Visualisation is an important tool in

Changing the blueprint (Mind Map) of the body.

• Biofeedback - A training program in which a person is given information about physiological

Processes (e.g. blood pressure), which is not normally available to them. The goal is to gain

Conscious control of the mind & body. It is thought that the hyperactivity of muscles and nerves

Caused by pre-existing conditions, or amputation, cause over stimulation / activity. This causes

Irritation in nerve endings of the residual limb. One example of how this works is to attach

Electrodes to the residual limb detecting when the muscles are tense. A signal is passed back to a

Monitor, which provides feedback and can be used to control the tension and reduce the stimuli.


• Farabloc – This is a patented weave of nylon and ultra-thin stainless steel fibres. Farabloc's

Protective shield helps to filter out harmful high-frequency electromagnetic waves, thought to

Aggravate nerve-endings. They also help to stimulate circulation and produce a sensation of warmth.

• Stump Socks and Shrinker Socks - Bandages and Shrinker socks apply even-pressure to the residual

Limb, which may alleviate pain and offer an alternative sensation. A German company called

Medipro® created the first liner designed to reduce phantom pain. Their research team found that

Electromagnetic waves could cause a static-electric charge in the socket of prosthesis, stimulating

The nerve endings of the residual limb. Based upon this they developed a new cover material called


Well I don’t know about you but even now I am still confused about it all, but on the good side I don’t suffer that much now days , but I would like to say for me its real pain , it hurts

So what do I get?

 In the early days I suffered from phantom pains really bad, I am talking about dropping onto the floor and chewing the carpet bad.

I tried various things, drugs, tens machine, distraction, hot cold, rubbing , acupuncture ECT but nothing worked, but after about six

months the attacks got fewer and wasn’t so bad.

I still get attacks even today , again I am not certain why but there are some conditions that naturally lead up to a spack attack (as I call it).:-

If I get dehydrated


Hot humid weather

Sudden changes in air pressure both up and down

Just before thunder storms

If I eat to much hot spicy food (explain that one)

Some of these things I can control to a certain amount , but there is nothing I can do with the weather and a sudden drop or rise in air pressure , I tend

to go for the distraction method when it happens now days , I know that there is nothing I can do about it , so I tend to keep myself very busy and have

loud music playing via my I pod , if an attack happens at night , I have found laying in bed waiting for the next , zinger or zapper to happen is ten times

 worse , I tend to get up and “do “ something downstairs . I can always catch up with my sleep another time.

Other than that I always have some sort of pins and needles or tingling sensation going on, I tend to ignore it most days ….its life.