If you are an amputee, chances are you have had a phantom sensation at one time or another. I am a BKA / below knee amputee fast approaching my four year mark. I still experience crippling bouts of phantom pains with sensations in my resuidual limb as well as the part of my leg that is no longer there. The mild ones feel like an itching or mild burning but the intense ones can range from having my ankle twisted to a calf cramp. Not all amputees experience post-removal pain; some have no discomfort at all. There are experimental drugs that are being prescribed to ‘treat’ phantom pains but none of them worked for me. I’ve tried Neurontin, Lyrica and Tegretol with no lasting results or relief. If you are considering any post-amputation phantom limb medication, please read the warnings associated with them.
The only prescription drug that worked to block the pain receptors in my leg was Vicodin EX (extra strength). It was something that I did not need to take more than a couple times a week but my PCP refused to give me another prescription for it. He wanted me to switch to OxyContin. To me that made no sense because the Vicodin is a lot less addictive and didn’t give me a “stoned” feeling. If you are an amputee, know your rights. I was labeled a drug seeker because I asked for a refill on pain medication but refused the OxyContin prescription. There were rumors about this specific doctor receiving kickbacks from pharmaceutical representatives for writing prescriptions for drugs in the oxycodone family as well as owning stock in companies that manufacture it. That was never confirmed or denied by anyone at the Pennsylvania medical review board. If you feel you are not getting the care you deserve, ask your health care team to recommend another primary care physician.
Seeking to find drug-free ways to treat my phantom pains, I started trying different things. Some worked, others didn’t but it is important to at least try them. What worked for me will not work for others. There are some rather hokey treatments that doctors will suggest like meditation and using a mirror to look at the residual limb so your brain “recognizes” that it is no longer there. I think my brain knows I don’t have a left leg but the nerves in the stump are slow to catch on. It helps to keep a log of when your severe pains strike; you could be doing something to trigger them so being able to look back over weeks or months could help you eliminate certain things that could make the phantom pains sideline you.
Ice Therapy: Sometimes ice can really help quell the stinging or jagging sensations that you can get from phantom pains. The summer heat and humidity can aggravate phantom sensations so using an ice pack on your residual limb can help to deaden the feeling. Do not use ice directly on your skin, especially if you have any type of neuropathy. I use a large ice pack that I can wrap completely around the bottom part of my stump; it stays cold for about twenty minutes with his usually more than enough time to get the extreme pains to stop. You are going to want to do a skin check from time to time to make sure the area isn’t getting too cold, if it is simply remove it for a couple of minutes and reapply as needed.
Massage: You don’t have to pay for a professional massage nor does it have to be something that is as intense as a deep tissue massage; you want to improve the blood flow to the area and create a soothing sensation. If you are having a friend or significant other perform the massage, make sure that they know about tender spots as well as areas that might cause you to jump. You can follow up the massage with some tea tree oil or lotion if you are going to keep your prosthetic off for a few hours.
Elevation: When phantom pains are getting the best of me and I have no viable alternative, lying on my back with my leg in the air usually helps to stop the pains in about a minute. You can combine this with stretching or flexing the muscles but you don’t want to stress the limb because that could cause the pains to start back up. A little movement will help relax the muscles but a lot of movement will put it in to ‘work mode’. If you don’t have the strength to keep your limb in the air for a couple of minutes, rest it against a wall or have someone hold it for you.
Stretching: After I lost my leg I thought that yoga was out of the question; thankfully I met an instructor that worked with me to create modified movements. Stretching is different from exercising; you are pushing your muscles to a certain limit but you are not stressing them. Stretching, over time, can help with your balance and endurance. If you are a new amputee you may have to experiment with different types of stretching techniques to find ones that you feel comfortable doing. Stretching also helps keep your mind off of the phantom pains and helps you relax.
Heat Therapy: You can get a moderate amount of relief from phantom pains and phantom sensations from soaking in a hot tub or hitting the Jacuzzi but even a heating pad can be just enough warmth to kick start the blood flow and reduce the sensations. In the summer it is a little harder to tolerate heat therapy but there are times when that is the only thing that works for me. If you go to a spa, ask if they have heat stones. I never thought that these would work for phantom pains but they’ve helped about 90% of the time when I’ve had the chance to take advantage of the service.
My physical therapists had a couple of suggestions for helping with phantom pains including ‘mirror therapy’. To me this was one of the most ridiculous concepts ever; you use a mirror to look at your residual limb so that your brain ‘recognizes’ that the limb is no longer there. I am still surprised that so many people still cling to this concept for treatment. My brain knows that I no longer have a leg, the nerve endings are the real problem. No two amputees are going to have the same background even if their cases are identical so no to treatments are going to work the same. You do not have to suffer with phantom pains or phantom sensations nor do you have to medicate yourself with prescription drugs to get relief.