This is a complicated topic, so this is an ultra-long post, even for me. I post it in the hope that it will help someone, maybe give you an idea you hadn't thought of, maybe even give you a laugh here or there.
If you're reading this, you probably already know that phantom limb pain plagues many amputees, maybe you among them. From what I've read, it seems that many of the most severe cases come from traumatic limb loss, where people might still be able to feel the injuries which robbed them of their limbs. In many of the instances where amputation happens in a hospital, though, carefully planned in advance for a specific medical cause, a lot can be done to prevent phantom pain, including placement of an epidural prior to surgery and then injecting each nerve with anaesthetic as it is severed. My surgeon (Dr. Margolius) and anaesthesiologist (Dr. Koh) were considerate enough to take these measures, even going so far as to consult with me personally ahead of time to make sure I wouldn't be over-medicated and that I would only receive drugs which had a good chance of working without setting off any of the myriad nasty, nasty side effects to which I'm prone. Probably as a result of their careful efforts, I've almost never had phantom pain, precisely. I have, however, experienced a strong and constant sensation of my missing parts, all still there, just slightly asleep.
I find this oddly comforting, the fact that I can still feel what isn't there. One of the things that creeped me out most thoroughly as I considered amputation as a treatment option was the idea of really losing this bit of body, the notion that suddenly -chop!- that would be it, no more feeling, no more sensation of foot or ankle, calf or knee, nothing, not ever again. Eeeeeee. And then thinking about how I would be left sensorily blocked and unbalanced, just in this one small part of my body but for the whole rest of my life, gave me a little headache. Meanwhile, terror that even drastic surgery would not solve my pain -- pain which toward the end prevented me from sleeping more than a few hours at a time -- abject fear that a phantom of my giant cancer would never go away and that I would never be able to sleep or function properly as myself again no matter what I did had tortured me prior to my amputation. Therefore, waking up after surgery and feeling my foot still there afforded me a surprising amount of relief, even though the foot felt kind of asleep and very tightly bound, and even though I could plainly see that it wasn't there anymore and that what was tightly bound was the stump my thigh had become. The biggest relief came when I realized that although I could still feel my missing parts, from my big toe all the way up, I could not feel that giant cancer anymore. There was no pain at all except another headache, this time from caffeine withdrawal, anaesthesia, and from the ordeal of going through with it all. I never really developed any significant pain of any kind, either. I have been very fortunate, and I do credit my doctors.
Sometimes, though, the first time three weeks after surgery and then dependably during every menstrual period ever since, the sensations I do have change from a constant vaguely tingly presence to weird, urgent tinglings, dull wide pinchings, and serial electric shocks. Again, these don't really hurt, but they are sometimes strong enough and surprising enough to interfere with my sleep, even to wake me suddenly from deep sleep, and sometimes throw off my gait mid-step.
I guess most people try medications first for these kinds of symptoms, whether they find the symptoms painful or just annoying. I've read of lots of folks resorting to neurontin and dilantin, two powerful neurological drugs commonly used for relief of epilepsy whose effects are not yet fully understood. They help some folks with phantom pain and do nothing -- or only bad things -- to others. My whole life, I've found most medications to be generally useless, making me very sick and/or muddling my head if they do anything at all. But you know, that's kind of what insomnia does to me, too, plus it's really hard to heal from a major medical trauma without tons and tons of deep, restorative sleep. And naturally, when I started losing sleep again, I panicked as my old fear of never getting my normal life back flared right back up. So in desperation for just six straight, uninterrupted hours of slumber when all this was still quite new, I did try a couple of other kinds of pills besides those commonly prescribed seizure drugs: Amitryptiline, usually prescribed as an antidepressant but often also prescribed as a sleeping pill, and a muscle relaxant called Flexeril with which I'd once had good luck when my back spasmed (and why I thought that might work is explained further down), both in extremely low doses because of my hair-trigger chemical sensitivities. I tried a different prescription every couple of days. Nothing made a dent except two tablets (10 mg, total) of some oxycodone I had left over from a ridiculously enormous prescription my oncologist had given me for times of extreme pain before my surgery. However, the oxycodone not only constipated me but gave me a wicked hangover.
Oh -- uh -- I guess it should be noted that while constipation and hangover are common side effects of this drug for me -- of every opiate I've ever taken in fact, to varying degree -- these symptoms were probably amplified in this instance by the fact that during the previous several hours I had also tried one of each of the other things I had on hand, including a pint of Guinness, some aspirin and a shot of NyQuil, each spaced an hour or two apart. Um...did I mention that sleeplessness also makes me hysterical and irrational? Oh, well, look, it really, really does. Only a hysterical and irrational person would think it a good idea to mix multiple types of neuro and psych drugs, plus some other drugs and a big, dark beer, just to try to get some sleep. So please, don't you go trying this, too. You might not live to complain about it. (I'm not sure why I did.)
Time has passed, my wound has healed well, and over the months I've found much safer and more effective methods of reducing overly insistent sensations and rebalancing my attention, which I will try to describe in case they can help you. But before I get into them, you might find it interesting to peruse a page called "From Ramachandran's Notebook," which is part of the greater PBS Nova series website. Here you can read about some interesting cases of phantom limb sensation and also a theory that phantom limb sensation may come in part from the brain finding new uses for areas of itself previously devoted to sensations received from body parts which no longer exist. I don't want to re-describe for you the theories and research; the presentation at the Nova site gives a nice taste of it all. But apparently, some neuroscientists believe that each particular area of the brain "vacated" by consciousness of a previously existing body part will be taken over by consciousness of a specific other body part, and that which takes over for which can be reliably predicted.
I am just an ignorant painter and grocery store cashier. I do not presume to dispute this theory or its research. In fact, I think it's really cool that there are people who spend their whole lives figuring out stuff like this. However, I have not yet discovered how it might apply to me in any practical sense -- and maybe that's true for you, too -- or maybe not -- which is why I'm discussing it at all. I have discovered that if I want to find out the root of my bothersome phantom limb sensations, all I have to do is the same thing I did when I wanted to find the root of bothersome sensations in the leg that used to be there: travel higher.
When I have an itch on my phantom ankle, I will feel around on my stump and discover -- lo and behold! -- that it's because there's a zit or mosquito bite on my stump, in the place nearest where the place I'm feeling it used to be. When some ghostly thumb and forefinger repeatedly squeeze my phantom heel or big toe, when electricity zaps the bottom of my phantom foot, or when the muscles of my now absent arch and calf cramp up, it's a flare-up of my chronic sciatica, exacerbated by lordosis, borderline obesity, and the fact that I now have to get around on two legs of uneven length, flexibility and strength, and even stand on them for hours at a time. I also get muscle cramps in my ghost calf when I cramp the rearranged muscles in my stump performing some unaccustomed motion or because I haven't been eating enough potassium. Pins and needles in my ghost parts? Sometimes it's because I've lain, sat or stood so long in a certain position that my nerves are pinched and my circulation cut off, just like when I used to get pins and needles in my real arch -- just like when I still get pins and needles in the real arch I still have on the other side.
All of this brain-mapping stuff is very interesting, academically, and probably helps or will help many people. For me, though, immediate, nonmedical, working solutions have been very simple, direct, and even sort of obvious. My solutions break down into three approaches: massage, movement, and meditation (not necessarily in that order).
Massage
When I still had both my original legs, my boyfriend, a certified massage practitioner who has also studied Chinese medicine and internal martial arts, would often give me therapeutic massages for all the things that afflicted (and still afflict) me -- sciatica, arthritis (or something that acts a lot like it), the effects of bad ergonomics in the workplace, injuries I gave myself, stress, etc. Often as he worked I could feel massage of one foot affecting my other foot, work on one side relaxing the other side, restoration of circulation to one side releasing blocks on the other. The release felt like a sudden rush of coolness or a gentle, radiant heating up of an area, not necessarily an area being worked on. It was explained to me that not just blood and lymph were moving again. Energy passages were opening, allowing what practitioners of Chinese medicine call "chi," the life force, to flow through what had previously been blocked passages.
Also, as he prepared to work on me for specific issues such as back pain, neck pain, sciatica, foot pain, carpal tunnel stress, etc., my boyfriend would go up the affected area(s), feeling for fields of heat and energy to find the source of each problem, and then working the areas around the telltale hot and cold spots which were often surprisingly far from where I felt the effects. A "knot" in a muscle at the base of my neck could be worked out to relieve a headache. A tight muscle near my elbow could be relaxed to relieve wrist pain. My glutes could be massaged to relieve sciatic tingling in my thighs. It would never have occurred to me then, nor does it now, that this had anything at all to do with a map of the brain. It had to do with blood and lymph circulation, and maybe also the circulation of that energy called "chi," all being restored along direct and obvious routes as strained or injured muscles relaxed from cold concrete back to warm flesh.
Now that I only have one leg of my own left, I think the same principles still hold. That first time phantom limb sensations hit me severely, my boyfriend and my physical therapist each explored around a bit. They each found that all the muscles around my lower back and hips were hard as rocks and emitting terrific heat, so totally tensed and stressed that touching them could make me shriek. They each found that tracing the path of the sciatic nerve up to my hips also traced the path of my discomfort. They each came to the conclusion separately that massage could relieve the symptoms, but they used two different approaches. My PT kind of pounded on the muscles and poked them very hard. This didn't work and caused me severe pain (just while she was doing it, though, and I would have put up with it if there had been relief afterward). My boyfriend massaged the muscles from the outside inward, very, very gently and patiently, working outward from the spine (and never directly on it), from the small of my back down. He worked on both sides, the operated and the intact, pretty much evenly. Unfortunately, he didn't begin until I'd already been sleepless for days, so though it felt great I could not be relaxed under any circumstances until I got a good night's rest. After my idiotic little overdose, though, and the full night's worth of sleep it afforded me (hangover and all), his work began to provide me more lasting relief. My PT then began emulating his technique under my direction, and between their work and my finally getting sleep (which started happening regularly once that dam broke and when my boyfriend started massaging me right at bedtime every night after), progress was made to the point where I could stop medicating within just a few days.
I think it's also worth noting that the most severe phantom sensation I've experienced since that one early episode has either come after I have exhausted myself physically or during my menstrual period, especially at the beginning when I experience the most profound changes in shape. Typically, I bloat horrifically, usually gaining 15 pounds in just a few days, and then I unbloat, losing it all in just a few more days. This process makes everything in my pelvic girdle move around a lot, including my already very curvy spine. Things get tweaked and pinched all over the place. Why should the nerves that used to lead to my now phantom limb be exempt? (And remember, swelling and shrinking happen dramatically after amputation, too, and muscles have been cut and moved around.) I believe that this is why I experience extreme phantom sensations, when I do experience them. It's not really a change in my brain. In fact, it's the opposite. My sensory brain thinks my leg is still there and so the pain and other sensory centers still work exactly how they worked when I had two legs. Therefore, I feel the same effects I always felt, only usually instead of aching and cramping (which I used to feel frequently in the now missing knee, calf, and arch whenever I exhausted myself or had my period), I get a more truncated set of sensations, like severe pins and needles, or squeezing. Therefore we -- my boyfriend, my PT, and I -- theorized that the same solutions would apply, and we were right.
Movement
Massage is great, but (a) there's not always someone around with nothing better to do than massage me, and (b) it's helpful but not a total solution. From studying ballet I learned long ago how to relax the muscles in my now missing calf out of a cramp, breathing slowly and every so gently stretching. I also learned from dance, yoga, and fencing how just moving around can realign everything. Now, therefore, movement -- especially movement that involves stretching -- is another thing I use not just to keep alive and in shape but to combat overly insistent phantom sensations. See, I even think that sometimes these sensations are signals to me to do just this: get off my butt and move.
Before my amputation, if I sat in one place too long, I'd get pins and needles and have to get up and walk. Now, again, nothing has really changed. If I sit in one place too long -- uh, drafting a lengthy blog entry, for example -- my phantom foot tells me all about it just like my remaining living foot does, only sooner and stronger. My three favorite exercises to combat this kind of phantom sensation are walking, barre exercises (from ballet), and yoga. I even like to engage in the last two when I'm not wearing my prosthesis, even though I can only do the barre exercises this way on one side. Of course, relevé on my amputated side will probably always be out of the question (unless available technology changes), and I'm still figuring out how to do a lot of stuff from both disciplines (vrksasana, aka "tree pose," for example, and arabesques) with the prosthetic on. Proficiency is a long road away. But I still receive benefits from the parts of these exercises that I can do, and from constantly working to expand my scope.
Now, if you've been recently amputated, your physical therapist can give or probably already has given you all kinds of stretching exercises to be done standing, sitting, and lying down. If he or she has, do them. Do them religiously, and don't do them for your PT, do them for yourself. Do you want your life back? Or do you want to sit in a lump for the rest of your days? It's your call, of course, but if your body used to move before your amputation, it probably still wants to. The sooner you make yourself move, safely and in ways calculated to build or preserve your strength and flexibility, the more you will be able to move -- and the more you will be able to do and try and be -- for the rest of your time in this body, whatever its shape.
Backing up for a minute, if you're still only at the stage of considering amputation as a medical solution, do bring up things like myodesis (anchoring muscles to the end of the bone via sutures through the bone) and myoplasty (muscles anchored to opposing muscles) in conversations with prospective surgeons. In contemplating transfemoral amputation, my then-prospective prosthetist advised me to ask my then-prospective surgeon which technique he would employ, and to try to leave the adductor muscles intact and anchored, if possible. I recommend you find out what would be best for your situation and follow this advice, as well. Do not feel as though bringing this up is presumptuous; your future is at stake. These techniques can preserve your range of motion and also ensure you maximum power and control when you eventually operate your prosthesis.
My surgeon did all of these things. Therefore, since I was no longer in pain, once I persuaded the hospital staff to give me a T-bar so I could haul myself out of the sweaty, marshmallow-y swamp that was my hospital bed without dragging off my bandages, I was able to begin a little stretching and exercising within 48 hours after my surgery. I was able to do battements, ronds de jambe, and développés with my phantom limb (though all anyone else could see was my bandaged stump waving around in the air, which all by itself seemed to astonish many). I can still do these things today because I recommenced doing them just as soon as I possibly could. I was able to do them really, really soon because my surgeon took such great care.
If you lost your limb through a traumatic incident -- on the road, in battle, stepping on a land mine, etc. -- you probably did not have the luxury of this kind of preservative surgery, certainly not of consulting with your chosen surgeon about it all in advance, and you were probably in too weak a physical condition overall to get right up and move after your initial surgery. This is going to make your recovery more challenging than mine has been. However, the key is to move as much as you can as soon as you can in just the ways the members of your rehab team will direct -- even if you're tired and sad and scared. It won't be easy, and multiple injuries will complicate your process. If you want your life back, though, you will have to find it in yourself to believe that you can get it back. Forcing yourself to move is one way to open yourself up to the possibility. I don't know what it will be like for you, how soon you will feel like yourself again. I can only tell you that now, for me, movement is not only therapy for obnoxious sensations but one way I embrace and reaffirm the restoration of my own life, changed as it has become.
Now, getting back to what to do in the way of specific exercise to combat phantom symptoms... Walking is obvious, and if you're an upper limb amputee or a lower limb amputee already in a prosthesis, you probably already know how to do it. Even if you're a lower limb amputee still using crutches or a walker, this is the quickest method I know for stretching out your hips and back besides lying down: just get vertical. Do it as often as you can, as long as your strength will allow. Unless something is terribly wrong, you will get stronger the more you do.
I don't recommend attempting ballet if you don't already have an instructor or a strong background, just because it's a very detailed thing and worth doing properly (even if, like me, you're nothing more than an enthusiastic amateur). As for yoga, however, while it's probably best to start a practice for the first time under the instruction of someone with experience applying it for amputees, these instructors are rare and very difficult to find. For great tips on yoga practice, and to find exercises you can do now (even sitting in a chair!) and will be able to do in the future (though this source does not offer variations or prop suggestions for amputees), I recommend a visit to the Yoga Journal website. Yoga Journal is my absolutely favorite yoga magazine, delivering cascades of tiny epiphanies whenever I pick it up. The website has tons of free information, including a fantastic beginners' section and index of poses.
I also enthusiastically recommend a video from WGBH called Yoga for the Rest of Us by instructor Peggy Cappy, who has adapted some basic yoga poses and exercises for people who aren't 100% fit, people for whom balance and pain are daily issues. She's been teaching for about 15 years a class which currently comprises students whose average age is about 78. Though there are no amputees in the class, and no adaptations have been made specifically for amputees, you will quickly discover what you can and cannot do and can use your own creativity to bridge gaps.
Meditation
My last technique for combating phantom limb irritations is actually often the thing I reach for first. If I get phantom prickles because it's my period and/or I've been sitting on my ass for hours, well, I just get up and walk around or do some exercises if that doesn't do the trick. However, if it's no particular thing causing it, if I'm just lying in bed at the end of an exhausting day overwhelmed by sensations that will not quiet, then I turn to meditation. Yes, that's meditation, not medication. The practice is simple enough, but it takes time (especially at first), will, and focus, and you may need to try medication, too, for awhile, until you can wean off of it and onto this much more liberating method.
When I meditate for this purpose, I make an effort to direct my consciousness to everything I have left. I do actually resent it when my missing leg takes up more of my consciousness than the leg I still have, but I try to release my anger and concentrate lovingly on the leg I still have. I concentrate on really feeling it, every bit of it, every toenail, every callous, every bit of athlete's foot... I move on to other parts of my body I still have, including my stump, without fear or anger, just lovingly cataloguing every detail. This really works. The nagging ghost of my other leg recedes back to where it should be, just another part of me, no more or less important than any other part.
Like everything in life, meditation starts with breathing. This is the breathing technique I was taught the first time I took a yoga class, when I was about 12, and I've been using it successfully ever since:
1. Lie flat on your back with your limbs relaxed but extended fully, your arms sort of at your side, and your palms facing the ceiling.
2. Close your eyes.
3. Empty your mind of every thought except the sense of your own body -- your whole, physical body, as it is right now.
4. Breathe deeply, starting by filling your belly, then working up 'til you feel like you're full of air to the top of your throat. Try to count at least to 10 as you breathe in. (You may have to work up to that; don't stress out over it, just do the best you can.)
5. Hold your breath for a moment, then release it, equally slowly and evenly, again counting to 10.
6. Repeat this until you don't have to think about it. Once you get into this rhythm, begin concentrating on relaxing every tiny muscle in your body, starting with your scalp, then your forehead, temples, nose and cheeks, back of your head, nape of your neck, etc., centimeter by centimeter.
7. Tiny muscle by tiny muscle, work your way down from the scalp to the bottoms of your feet (or wherever your last muscles are), breathing deeply and evenly the whole time.
This exercise is extremely relaxing. It also helps both the mind and the body just by oxygenating more than you are probably used to. As you get more practice, you may find that you can count as high as 20 or 30 breathing in and then out. At some point, you won't have to count at all, and that's when you can begin to really focus and feel the work.
You can also try the breathing sitting up with your back against something. Concentrate on how your body feels touching the floor, the seat, how your spine feels touching the wall or chair back...take each breath to the count of ten, pause, and then release to the count of ten...stretch your spine by lifting your chin slightly and rolling your shoulders back and down...
You don't have to use this for phantom limb stuff only. This is a foundation for a lot of forms of stress relief. Just a few of these slow, belly-filling breaths alone, in any position, in any context, can help you through a moment of potential madness. The thing, too, is that most people who are not gurus or bodhisattva or whatever cannot just stop their heads from racing along whatever obsesses them at the moment -- even if it's literally killing them -- unless they give their minds something else to do, some other set of thoughts to play with. Thinking just about your breathing and just about how your body feels and where it is right now, in this moment, and then doing just that for about twenty minutes at a time, gives the mind something to do which does not harm you, and which has the potential to build your mental strength. Concentrating on something as basic as your own physical presence can help you blow away mental cobwebs. Focusing on what comprises that presence, bit by bit, helps you remember that you haven't lost or relinquished everything, and can help you focus on what you have left and how great a gift it all is.
It takes practice. But you won't get to feel how much good it can do you unless you try it. I strongly recommend it based on my own kind of hectic life experiences. Just the breathing has gotten me through a lot. Most people find they experience immediate benefits just from starting to try that. If you then take it further into the practical by applying it to reminding your phantom that it is a phantom, and your remaining parts that they still live, that you know you still have them and that you still value them, you may also find relief from sensory hauntings, as I have. The relief will not be banishment of the ghost, just a way of physically putting it back in its place.
As I said, I fervently hope this helps somebody. I also hope you'll let me and the readers of this blog know if you try any of it, and if you have any success, or if you've discovered other nonmedical techniques for coping with this problem.
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