Everything you need to know about phantom pain and stump pain

After an amputation, many people still feel the limb that is no longer there. They experience pain, itching or other sensations in the missing body part. We call these phantom sensations or phantom pain. Unfortunately, many people prefer not to talk about it because they are afraid that no one will believe them. Yet it is important to talk about phantom pain, so that treatment can be started quickly. In this article you can read everything about phantom pain, the treatment and what you can do by yourself.

1. What are phantom sensations and what is phantom pain?

After an amputation of a body part, no fewer than 80% of people experience phantom sensations, residual limb pain and phantom pain. But what is the difference? Phantom sensations are non-painful feelings in an amputated limb, such as heat or tingling or the feeling that your fingers or toes are extended or shortened. With residual limb pain, the amputee primarily experiences pain in the residual limb, not in the amputated body part. Phantom pain is nerve pain in an absent limb.

The exact cause of phantom sensations and phantom pain is not known. One possible explanation is that the nerves in our nervous system and brain are "rewired", so that they no longer receive signals from a certain body part. Our nerves then start sending pain signals, a typical reaction when our body notices that something is wrong. It is also possible that your brain perceives contact from a certain body part – such as your hip or upper arm – with your amputated body part. It is a very odd sensation because your nerves are – literally! – confused. Incidentally, there is a link between residual limb pain and phantom pain: painful areas of the residual limb (called trigger points) can cause/trigger phantom pain and phantom sensations.   

When exactly phantom sensations or pain occurs is different for every person. Some people experience pain the day after their operation, others after several years. Phantom pain often occurs in attacks of stabbing, shooting, tingling, burning or pinching pain. The duration of these attacks is different for every person: from a few seconds to several days. With most people, the extent and duration of the pain attacks decrease during the first six months after the operation. However, many people experience some degree of phantom pain for several years.

2. How is phantom pain treated?

Pain usually occurs in response to injury to a body part. But this is not the case with phantom pain, making this type of pain difficult to treat. Unfortunately, there is no standard approach that works for everyone. Sometimes, it is enough to simply place a pillow where the limb used to be. But phantom pain often means a long search for suitable treatment. We therefore recommend talking to your doctor or therapist to find the best possible treatment for your situation.

3. What can you personally do about phantom pain?

As mentioned above, phantom pain is difficult to treat. All the same, there are a number of things you can do to reduce your symptoms: 

  • Ask for help! There is absolutely no reason to be ashamed about your phantom pain or sensations. After all, almost everyone experiences this after an amputation. By sharing the problem with your doctor or therapist, you can look for a good solution together. Remember, phantom pain is real pain. So, you have every right to get help! 
  • Certain actions or circumstances, such as touch, smoking, going to the bathroom, sex, changes in air pressure and exposure to cold, can trigger phantom pain. Have you noticed any specific triggers for your phantom pain? Let your doctor or therapist know. Together you can find the best way to deal with this in the future. Keep a diary and ask yourself the following questions:
    • What time of day do I experience pain?
    • Does the pain diminish when I’m active? If so, what kinds of movements make the difference?
    • Do I also feel pain in other areas of my body?
    • Is the pain worse on cold or rainy days?
    • Do I experience more pain when I’m stressed?
  • Write down your answers so that after a while, you will erase what should and shouldn't be done.
  • Try the mirror method. Mirror therapy is often used for phantom pain. The idea behind it is that a mirror trick can affect the nerves linked to the amputated body part. By looking in the mirror, these nerves are activated, which can lead to reduced pain. Ask your doctor or therapist about this method or search for "mirror therapy" online. 
  • Try moving your phantom foot and toes or hand and fingers. This may seem like a crazy thing to do since this part of the body is no longer there, but this exercise can stimulate the nerves in your brain. Do this exercise with your eyes closed. Since you are stimulating unused nerves, your phantom pain may diminish.

4 possible causes of residual limb pain

Apart from phantom pain and phantom sensations, you may also experience residual limb pain after an amputation. It can only be expected that you will experience pain in your residual limb the first few weeks after your amputation. But this pain should dissipate after a while. Has the pain not gone away? This is referred to as residual limb pain. It is a different type of pain than "regular" pain after the operation and is often described as sharp, painful, throbbing or burning. We’ve put together a list of four possible causes for you.

1. Residual limb pain due to an underlying health condition

A health condition can cause or increase residual limb pain. Some people with diabetes or blood circulation problems have a higher chance of developing skin problems, infections or nerve pain, which in turn can cause residual limb pain. If you are experiencing pain as the result of an underlying condition, it is important to keep this condition under control as best as possible. Monitor your blood sugar effectively, for instance, and follow your doctor’s instructions when it comes to diet, exercise and medication.

2. Residual limb pain due to the operation

If the bone of your residual limb was not amputated correctly, you may experience problems with the tissue on the end of your residual limb. This can cause pain when wearing your prosthesis. There are different ways to reduce this pain, but a new operation is needed in some cases to reshape your residual limb in order to reduce the pain.

3. Residual limb pain due to a neuroma

A neuroma is a tangled mass of neuronal tissue that can occur with a damaged nerve. It can be extremely sensitive, especially when your prosthesis (socket) presses against it. Because a neuroma consists of nerve endings, it is sometimes treated with medication for nerve pain. Treatments without medication include massage, acupuncture and Transcutaneous Electrical Nerve Stimulation (TENS). It can sometimes be helpful to have your prosthesis socket adjusted, so that it no longer comes into contact with the sensitive part of your residual limb. Unfortunately, an operation is not always worthwhile because a new neuroma often develops afterwards. 

4. Residual limb pain due to excessive bone formation

An excessive amount of bone sometimes forms around the end of the amputated limb. This "extra" bone can create pressure points that cause problems with the fit of your prosthesis. Excessive bone formation – also called heterotopic ossification – occurs more often in children than in adults. The problem can sometimes be solved by adapting the prosthesis (socket). If this does not help, an operation may offer relief. This kind of operation is only worthwhile in children if the bone has stopped growing.