Phantom and Residual Limb Pain
Will I always have pain in my residual limb?
Terrence P. Sheehan, MD: During the first several months after amputation, all people have pain in their residual limb. This pain can be separated into musculoskeletal pain and neuropathic pain and is intensified initially with touch and pressure. Fortunately, this type of pain generally diminishes over time, usually within the first two months.
This pain can often be effectively treated with medications that block inflammation, bone/muscle pain, and nerve pain.
Usually, these medications are decreased after a couple of months to the point that they are just taken on an as-needed basis. Residual-limb pain can also be effectively relieved by repeated touch and massage, wearing a shrinker, and using a prosthesis that fits properly rather than an ill-fitting one. Residual-limb pain should not increase in frequency or intensity.
What might cause or increase pain in my residual limb?
Terrence P. Sheehan, MD: Pain in the residual limb is usually caused by a few common culprits. If the limb loss is new, your residual-limb pain might be caused by an infection, either deep or superficial, at the surgery site. An infection can also occur at any time on the surface of the skin if hygiene has been marginal.
If you use a prosthesis, you can develop pain in your residual limb as a result of a poor fit, which can cause abnormal pressure or rubbing against your skin. This pain is an alarm that tells you that the skin is being traumatized and that you should not wear your prosthesis until it has been fitted properly and your skin has been evaluated for damage.
Tips for Preventing or Dealing With Residual-Limb Pain
Terrence P. Sheehan, MD: Pain is a symptom and can have one or more causes. You may, therefore, need multiple healthcare professionals to help you sort through the causes of the pain and the solutions for it. These professionals should include your physiatrist, your surgeon, and your prosthetist, who should all work together and communicate as a team in your best interest. This is best done in an amputee clinic setting.
Because a poorly fitting prosthesis can quickly cause a sore and infection if not addressed, early communication with your doctors and prosthetist about the onset of your pain and changes in it is very important. It is also important to understand that pain is often affected by the patient’s emotional, spiritual and psychological states as well as his or her physical problems. To effectively deal with your pain, therefore, these issues also need to be addressed, possibly through individual counseling, peer visitation or support groups.
You should not accept pain as chronic until you have exhausted the many treatment options available. This may mean that you have to seek the counsel of multiple pain clinicians rather than settle for insufficient relief of your pain. Over the long term, your pain may come and go just like my grandmother’s “achy” days did with the cold or damp weather. Still, you need to have a plan for these painful days, including knowing how to comfort yourself during them. I am privileged to care for many people with limb loss, and although most have moments of pain, I can’t think of any that have such unresolved pain that they are not living their lives. One person has even chosen not to use a prosthesis because she has not been able to achieve a comfortable fit. Fortunately, she is pain-free most of the time and is enthusiastically living her life. That’s what it’s all about, right?
Will I have phantom pain? If so, how intense will it be?
Terrence P. Sheehan, MD: Phantom pain is common after amputation, and some have reported that it occurs in 80 percent of amputee patients. It often accompanies phantom sensation, and both are perceived as being in the missing limb.
The pain is often described as cramping, aching, burning or lancinating. Though it can be quite severe in a small percentage of amputees, it is also quite responsive to medications and rehabilitation techniques.
The longer a person has had pain in his or her limb before surgery, the more likely he or she is to have phantom pain afterward. Fortunately, this pain usually diminishes with time, and chronic phantom pain is rare.
What might cause phantom pain to increase?
Terrence P. Sheehan, MD: To understand what might increase, or exacerbate, phantom pain, you need to understand that this pain is nerve-cell hyper-excitability. Thus, things that would ordinarily excite the nerves in the limb would also hyper-excite this group of nerves that are behaving poorly to begin with. So, the things that may increase the phantom pain are usually things that feel fine with good nerves but feel bad to these misbehaving nerves, such as heat, cold, extremes in weather, applied pressure, light and normal touch, certain positions, changes in position, caffeine, stressful daily situations, monthly cycles, your son-in-law (just kidding), etc. It is an individual experience. What is common, though, is the fact that when you’re lying in bed late at night with the lights out, the TV off, and the dog asleep, this pain usually rages. This is because all of the other distracting sensations have been diminished, which just pronounces the hyper-excitability of these misbehaving nerves.
I’ve seen advertisements that claim that certain products or treatments can prevent, alleviate or cure phantom pain? Are these claims true?
Terrence P. Sheehan, MD: I have not come across any product or technique that claims to prevent phantom pain, but there are many things, such as medication and rehabilitation techniques, that can alleviate it either partially or totally. To avoid being taken advantage of by scams, however, you need to be under the care of a credentialed professional, and you need to use a systematic approach to find which of these particular agents or techniques gives you relief.
Tips for Dealing With Phantom Pain
Terrence P. Sheehan, MD:
- Find an amputee specialist, such as a physiatrist or chronic pain specialist, who knows about phantom pain through education and experience with patients.
- Use a systematic approach to trying the different approaches and medications.
- Speak up! Ask why you should try a specific medication or technique, what the side-effects are, and what science supports the treatment. There are plenty of nontraditional approaches to pain out there. You need to use something that is safe and that has been proven effective. If a product or technique sounds bizarre, shaky and unreasonable, it is probably ineffective. You need to believe in your treatment; if trust is established, the treatment will probably be more successful because of the placebo effect.
- Write the When, Where, How, Why, and To What Extent details about your phantom pain in a journal. This will help your doctor better understand your pain and will give you an objective tool to see how your pain changes over time and whether it has been affected by treatment. Use a scale of 0 (no pain) to 10 (severe/worst pain) to help define your pain.
- Know that it’s OK to get second and third opinions from pain specialists. Unfortunately, we are better-educated consumers of household products, such as washers and dryers, than we are of the products and techniques that might benefit our bodies.
- Realize that narcotics are short-term friends; they are not usually effective against phantom pain, they are addictive, and their effect wears off, making you need more to get the same marginal relief. Perhaps even worse, they are constipating.
- Find a way to talk about your pain. Constant, intermittent pain is disruptive to the moments and relationships in one’s life. You need to talk about these disruptions and develop healthy strategies to deal with them. Remember: It’s not the quantity of life but the quality that’s important. This “talk” can occur with psychologists, with peers in a group or individually, and/or with spiritual advisors. Be open; your mind is very powerful in controlling your body. Picture the man walking on hot coals.
Translated from the English article with permission of: Terrnce P. Sheehan, M.D , Publication: First Step, Amputee Coalition of America (ACA) http://www.amputee-coalition.org/first_step_2005/fs2005_section01.pdf