Stump Pain / Phantom Pain
Losing a limb is devastating. But, even after grieving the initial loss, you may continue to feel a sensation — phantom pain or discomfort — as if you still had the limb.
Phantom pain in a limb that no longer exists is common after amputation. For some people, phantom pain gets better over time without treatment. For others, managing phantom pain can be challenging.
You and your doctor can work together to treat phantom pain effectively with medication or other therapies.
Many doctors once thought that phantom pain was a psychological rather than a physical problem. Later research found that psychological distress is not the sole cause of phantom pain and may not be involved at all.
Although doctors know something about the situations in which phantom pain occurs, the cause is still unclear. Phantom pain can affect a person who has had an amputation or someone born without a limb.
Researchers think phantom pain may be caused by one or more of the following :
- Changes in nerve circuitry. Certain types of nerve damage or injury can increase your risk of phantom pain. And, the way your brain processes an amputation and how it perceives pain changes. After an amputation, nerve cells in the brain appear to make new connections. This brain rewiring may relate to phantom limb pain.
- Pain before amputation. Some researchers have found that people who had pain in a limb before amputation are likely to have it afterwards, especially immediately after amputation. This may be because the brain holds on to the memory of the pain and keeps sending pain signals, even after the limb is removed.
- Blood clot. People who had an amputation because of an arterial blood clot report phantom pain more often than do people who had amputations for other reasons. Researchers think this is because a blood clot reduces how much oxygen gets to tissues. Although the amputation takes care of much of this damaged tissue, the remaining tissue may take longer to heal than does healthy tissue, or may never fully heal.
- Neuroma. A neuroma is a growth containing many nerve cells. A neuroma can form on the nerve endings in a stump after amputation, causing painful nerve activity.
- Other factors. If you have pain before an amputation, treatments that block the pain just before the amputation appear to help reduce the likelihood that phantom pain will occur. If you had tissue death (gangrene) or other infections before the amputation, you may be more likely to have phantom pain after surgery.
In some cases, a poor-fitting artificial limb (prosthesis) may cause pain. Talk to your doctor to be sure you're putting your artificial limb on correctly and that it fits right. If you think your artificial limb may not fit properly, or is causing pain, talk to your doctor.
Triggers of phantom pain
You also may find that certain circumstances seem to trigger an episode of phantom pain, such as :
- Use of your artificial limb (prosthesis)
- Weather changes
- Pressure on the remaining part of the limb
- Emotional stress
When to seek medical advice :
Phantom pain often begins within a few days after surgery. Some people find that phantom pain goes away over time, whereas others have pain for many years. Pain that has gone untreated for more than six months to a year tends to be more difficult to treat. So, be sure to report pain to your doctor right away for more effective treatment.
Symptoms of phantom pain include pain, discomfort or sensation in a limb that doesn't exist. It might feel like the same pain you felt before an amputation. Phantom pain is more common after the removal of an arm or a leg, but can also occur after the removal of other parts of the body, such as the breast or eye.
Phantom limb pain, stump pain and phantom limb sensation describe conditions that commonly affect people who have lost a limb :
- Phantom limb pain is pain that feels as though it is in the lost limb.
- Stump (residual limb) pain is ongoing discomfort at the amputation site.
- Phantom limb sensation is the feeling that the missing limb is still there. Although usually not painful, you may feel uncomfortable sensations such as burning, tingling and itching.
You may find that you can't predict what type of pain you'll have, when an episode will occur, how intense it will be or how long it will last.
Although there's no medical test to diagnose phantom pain, doctors can identify the condition by collecting information such as your symptoms and the circumstances (such as trauma or surgery) that occurred before the pain started.
Be sure to speak up about your pain symptoms. Only you can describe your pain to your doctor. Tell your doctor how much pain you have, if it's getting better or worse, and what, if anything, seems to help it or make it worse. Keeping a pain diary may help you and your doctor sort out the circumstances that may trigger your pain and how best to treat the pain.
If you know what triggers your pain, you might be able to avoid it, start treatment early, or tailor treatment based on your trigger. For example, if exercise triggers your pain, you can try taking medication ahead of time. If use (or lack of use) of your artificial limb triggers pain, a change to the prosthesis may help.
Doctors may use one or more of a variety of approaches to treat phantom limb pain.
Doctors often try medications first. Although there are no medications specifically for phantom pain, several are used to help chronic pain of any origin. Keep in mind that no single drug works for everyone, and not everyone benefits from medications. You may need to try several different drugs to find one that works for you.
Two methods of medication treatment may be used :
- Medications given immediately before or after an amputation to help prevent phantom pain
- Medications given long-term to manage phantom pain
Medications to prevent phantom pain
- Calcitonin (Miacalcin). Calcitonin is a hormone produced by the body that slows the rate at which your body breaks down bone. Researchers aren't sure why it provides pain relief. You may receive this drug directly into a vein (intravenously) during the week after amputation.
- Ketamine (Ketalar). This drug is an anesthetic and may have some effect on phantom pain. Hallucinations and delirium are among ketamine's side effects, however, so doctors don't usually prescribe it unless other drugs have been ineffective. This drug is given after surgery.
Medications to manage phantom pain
- Antidepressants. Certain types of antidepressants may help relieve phantom pain, even if you don't have symptoms of depression. Doctors prescribe a lower dose for phantom pain than that for depression, so side effects may be less severe. You'll need to take this type of medication for at least one to two weeks before you notice an effect, and you may not receive the full benefit for four to six weeks. Some antidepressants may also help you sleep, which can make you feel better. Antidepressants that may provide pain relief include doxepin (Sinequan), desipramine (Norpramin), nortriptyline (Aventyl, Pamelor), imipramine (Tofranil), venlafaxine (Effexor) and bupropion (Wellbutrin).
- Anticonvulsants. Doctors may prescribe an anticonvulsant drug such as carbamazepine (Carbatrol, Tegretol) even though you aren't having seizures. Carbamazepine is a drug used to control some types of seizures and for the facial pain of trigeminal neuralgia. Other anticonvulsants that may reduce phantom pain include gabapentin (Neurontin), pregabalin (Lyrica), lamotrigine (Lamictal), tiagabine (Gabitril), topiramate (Topamax), levetiracetam (Keppra), and zonisamide (Zonegran). As with other pain medications, they don't work for everyone.
- Chlorpromazine. Doctors commonly use the drug chlorpromazine (Thorazine) to treat psychotic disorders such as schizophrenia. Sometimes it offers relief to people with phantom pain.
- Central nervous system depressants. Clonazepam (Klonopin) is a benzodiazepine, a drug that slows down the central nervous system. It has many uses, including as a treatment to relax muscle spasms. Clonazepam may relieve phantom pain for some people.
- Opioids or narcotics. Opioid medications, morphine and related painkillers, may be an option for some people. Taken in appropriate doses under your doctor's direction, they may help control phantom pain. However, you may not be able to take them if you have a history of substance abuse or lung disease. Even if you don't have a history of substance abuse, these drugs can be addicting.
- Clonidine (Catapres). This drug is primarily used to treat high blood pressure. Because it affects pain pathways, it can also be very helpful in treating phantom pain.
- Baclofen (Lioresal). This drug is a muscle relaxant and anti-spasticity drug. It can be used to treat nerve-related pain, muscle spasms and neuropathic pain syndromes — such as phantom pain.
- Botulinum Toxin Type A (Botox). Botox may be helpful in relieving phantom limb pain and in reducing the number of attacks. Doctors will continue to study this drug for many possible uses, including pain control.
As with medications, treating phantom pain with nonsurgical therapies is a matter of trial and observation. The following techniques may relieve phantom pain :
- Transcutaneous electrical nerve stimulation (TENS). In TENS, doctors send a weak electrical current to specific points on the skin over a nerve pathway. This may interrupt pain signals, preventing them from reaching your brain. Although safe and painless, TENS doesn't work for everyone or for all types of pain. It's generally more effective for acute pain than for chronic pain and is often used with other treatments. TENS may be a good option to try for people who can't take or don't get relief from medications.
- Electroconvulsive therapy (ECT). This treatment involves sending a brief electrical current to the head to stimulate the brain. Before the procedure, you receive a general anesthetic and strong muscle relaxants to control movement and pain. ECT is thought to alter brain chemicals related to pain sensation and mood. Doctors use ECT for depression and other mental disorders.
- Acupuncture. The National Institutes of Health has found that acupuncture can be an effective treatment for some types of chronic pain. In acupuncture, the practitioner inserts sterilized stainless steel needles into the skin at specific points on the body. It is thought that acupuncture stimulates your central nervous system to release neurotransmitters, hormones or the body's natural pain-relieving endorphins. Acupuncture may also alter how your blood pressure, blood flow and body temperature are regulated and respond to pain.
Other experimental treatments include other nerve blocks and destruction of nerve tissue (nerve tissue ablation). No clear evidence has yet shown these treatments to be helpful.
Surgery may be an option if other treatments have not helped. Surgical options include :
- Spinal cord stimulation. Your doctor inserts tiny electrodes along your spinal cord. A small electrical current delivered to the spinal cord can sometimes relive pain.
- Intrathecal delivery system. This procedure allows medication to be delivered directly into the spinal fluid.
- Deep brain stimulation. Deep brain stimulation is similar to spinal cord stimulation except that the current is delivered to the brain. A surgeon uses a magnetic resonance imaging (MRI) scan to position the electrodes correctly.
Preventing pain seems to yield better results than trying to control pain after it has developed or become severe. Suppressing the pain on an ongoing basis allows the nerve pathways to heal, versus treating the pain intermittently, which allows the pain to fluctuate in intensity and fires up nerve pathways. When doctors perform amputation as a scheduled — rather than emergency — surgery, they can take steps to reduce the likelihood that you'll develop phantom limb pain.
Your doctor may try numbing the surgical area before the surgery to try to prevent phantom pain. This may involve injecting you with a solution of pain-relieving drugs in the day or days before the amputation.