Coping with my own phantom pain {summary: vascular congestion and cold skin: compression really helps - musculoskeletal contribution to pain: hot baths, non-steroidal anti-inflammatory drugs, massages}

I have gone after possible sources of my phantom pain, over the past years, to better cope with it.

There are aspects that I can influence directly, and others that I seem to be able to direct only indirectly.

Contents

Phantom pain and stump compression experiences

1) Compression, congestion, circulation

The first thing my prosthetist said, was, that I would need a compression sleeve to ease my phantom pain.

Looking at photos of other people, I see their stump skin colors, and from that, I will assume they also may have some varied circulation there. It cannot be just me. My prosthetist had warned me (with too much confidence in his own advice in order for that problem not be totally ubiquitous). It was, you know, like, he knew. The only thing that repeatedly, reliably and foreseeably worked was treating venous congestion of the stump with compression.

I otherwise do not have circulation issues, that is, venous congestion, etc., and never had before the amputation. But my stump always brimmed with stump pain and, more even, phantom pain, first and foremost due to what indeed appeared to be also congestion issues.

So, blood flows into the stump, fluid gets squeezed out into the tissues because venous backflow somehow is less than ideal. A permanently ice-cold, wet, burning, and entrapped immobile painful phantom hand has always been and still is mine here.

Wearing the compression sock or bandage was painful, too, at first: the wound, the raw bone edges underneath, were entirely painful. One learned fast to distrust wearing a bandage or compression sleeve, and to distrust not wearing one just as well. Pains would at first just shift, not get better. But after a while, like a year or so, compression became, to a degree - if not too mild or too excessive - a good thing. All the while, my stump was, and is, always red, reddish, red-blue, or gray-blue, hardly ever normal, in skin color. If anything, my stump is mostly if not always a cold ice block.

Pains were a lot worse when in addition to being congested anyway, my stump was exposed to cold ambient temperatures over a more extended period of time, and a hell of a lot worse once it got all puffy and congested. When I would suffer a greatly puffy stump, such as after having it extensively hang down for a day when walking, hiking, or such, then just warming it up by covering it with a sleeve or warming it up with warm water would make the phantom pain go entirely nuts. It would add hot needles to the pain described above. The only thing that really helped, still helps, is mild to moderate - not mild, not hard - compression. Even a warmer for the stump needed to be slightly tight, in order to comfortably work as reducer of discomfort, as negotiator of pain.

Then, wearing a bandage or compression sleeve on the stump, or just lying on the stump, when in bed or on a beach, even just elevating it a bit, when sitting on a table or in a chair, would always, still does, make everything better, fast.

2) Skin injury and damage

Phantom pains also escalated when I would injure my stump, like, when there was a skin damage to the stump, including friction rashes, sunburns or injuries.

Keeping skin damage down, that was a second great idea that one never reads about anywhere. One part to get there is to keep the stump away from hot stoves, sunburns, knives and other kitchen instruments, as well as pavements. One needs to avoid sunburns as well. The second part is to wear a prosthesis that does not cause a lot of blisters, abrasions or friction rashes. So, with a body-powered arm, a narrow well fitted super comfortable socket with stump compression (you read about congestion above, right) and limited hard mechanic sensory feedback while protecting my stump from all trauma really proved a reliable path to at least containing if not reducing the phantom pains in a sustainable way - not wearing the prosthesis always resulted in cuts, slashes, blisters, burns, bruises or sunburns and whatever else that then hurt, that jacked up the phantom pains and that due to bad circulation would also take a long time to heal. Meanwhile, I had gone behind the parts of my body-powered prosthesis to make it really work better. But that was not the type of arm that academic research had recommended, either. However, wearing a body-powered arm had been suggested very strongly several times by various physiotherapists.

2) Neuroma

I feel two blobs at the end of what feels like the nerves there, and when the pain is really severe at times, massaging these blobs helped. Must be neuroma.

Neuromas are not exactly rocket science, they are somatic. But I was not getting any surgery for these [1]. It helps to wear a prosthetic socket and to protect the tender areas from getting hit or pressed upon. If I wake up at night because the neuromas brim too hard, I massage them a bit.

3) Musculoskeletal problems

Last but not the least, sports or training induced shoulder, arm back and neck pain, even subtle muscle ache, would somehow increase stump and phantom pains.

I recently experience, on top of the above things, super extreme jolts or bouts of phantom pain that would stop me dead in the tracks. And while any type of distraction always worked for me when the stump was congested, at least to a degree, this time nothing of that nature worked. I sat there and, blam, I cringed. So I now get the super extreme jolts that make everything else fade in the background. But I also found that my hosed arm - on top of that - had referred pain zones at the lateral side of the distal upper arm and elbow. So I figured best to trace the referred pain back to a possible origin.

And so I found a great book, that details a lot of referred pain zones related to particular muscles [2]. Thereby, neck muscles (scaleni, trapezius) were to consider with priority. Degenerative changes were less likely to be at the root than myofascial issues [3]. So I used my mechanical massager to hammer down on these muscles' cervical spine attachments and their muscle bellies as far as possible, for as long as possible - and these massive jolts were at once gone.

A link between proximal musculoskeletal problems and distal phantom pain had occurred to me years ago. Then, I had performed a daily log of possible factors to influence my very subjective perception of phantom pain and various variables of potential impact, so I logged IDK like perceived mental stress, whether I had worn the prosthesis, coarse category of the type of weather that was on that day, this and that - and, how hard I felt I had trained swimming and whether I had muscle ache. Turned out none of the factors - except how much I had exerted myself and if I had a shoulder / upper arm muscle ache from overdoing sports - repeatedly and reliably correlated with some extra part of my phantom pains. These phantom pains seem to be a problem of peripheral nerves alright, I guess - but musculoskeletal problems always seem to add to peripheral nerve problems in a totally profane, everyday sort of way. Luckily though, because the way out has been also rather profane, affordable - hot bath tub, a bit of alcohol maybe, a bit of ibuprofen, and definitely serious massaging of the whole region of shoulders, neck, arms, back.

Theories of causes and suggestions to treat phantom pain usually ventilated through medical literature

There are some theories and tons of other "recipes" for phantom pain [webmd, mayoclinic, wikipedia, https://www.reddit.com/r/amputee/search?q=phantom pain].

Mirror therapy - made it even worse for me

Mirror therapy made it considerably worse for me. Interestingly, the idea that phantom pains can be treated by mirror therapy somehow relates to cortical representation of the amputated arm and hand parts, which, in the meantime, have been found to exist regardless of phantom pain severity1)Conference: Hand, Brain and Technology 2018, August 26-31 2018, Monte Verita, Ticino, Switzerland. Title: Obtaining and maintaining cortical hand representation: Evidence from acquired and congenital handlessness. Authors: Daan B Wesselink1,2*, Fiona M.Z. van den Heiligenberg2, Naveed Ejaz3,4, Harriet Dempsey-Jones1,2, Lucilla Cardinali3,5, Aurelie Tarall-Jozwiak6, Jörn Diedrichsen3,4, Tamar R Makin1,2 -- 1 Institute of Cognitive Neuroscience, University College London, London, UK; 2 FMRIB Centre, Nuffield Department of Clinical Neuroscience, University of Oxford, Oxford, UK; 3 Brain and Mind Institute, University of Western Ontario, Canada; 4 Department of Computer Science, University of Western Ontario, Canada 5 Unit for Visually Impaired People, Istituto Italiano di Tecnologia, Genoa, Italy; 6 Queen Mary’s Hospital, London, UK. ----- Abstract: Hand representation in the primary somatosensory cortex (SI) is thought to be shaped and maintained by experience. However, although the fine characteristics of digit topography could be fine-tuned by altered behavior, overall hand structure is highly stable across people and time [1]. Recently, we even showed that three amputees experiencing highly vivid phantom sensations maintain cortical representation of their missing hand [2]. Still, it is unclear whether this persistence of hand representation depends on experiencing vivid phantom sensation, or whether it is immune to the long-term withdrawal of sensory feedback. In this study, we scanned 18 unilateral amputees (17±10 years since amputation) with varying degrees of phantom sensations, as well as individuals with congenital unilateral limb absence (without phantom sensations) and two-handed controls. Inside a 3T MRI scanner, all participants performed individual digit movements with either hand (missing/non-dominant and intact/dominant hand), as well as a more demanding motor synergy task with their intact hand. Using representational similarity analysis, we interrogated the inter-digit (activity) pattern structure within the SI hand area. The deprived cortex, contralateral to amputees’ missing hand, was activated by the movement of both phantom digits and the (ipsilateral) intact hand. In both cases, the representational structure of the hand was stable, as we found no differences between the pattern structure of amputees and that of controls. The deprived cortex was stable in all amputees; this did not depend on perceived phantom sensations (assessed using questionnaires). In contrast, the representation of congenital one-handers’ missing hand was severely diminished. Finally, activation of ipsilateral resources (e.g. amputees’ deprived cortex) during high motor demands alluded to a functional role in (intact) hand motor control. Together, our findings suggest that once cortical organization is formed, it is remarkably persistent, despite the drastic loss of afferent input and lack of sensory experience. References [1] Ejaz, N., Hamada, M., & Diedrichsen, J. (2015) Hand use predicts the structure of representations in sensorimotor cortex. Nat. Neurosci., 18, 1034–1040. [2] Kikkert, S., Kolasinski, J., Jbabdi, S., Tracey, I., Beckmann, C.F., Berg, H.J., & Makin, T.R. (2016) Revealing the neural fingerprints of a missing hand. eLife, 5, e15292. Short Biography Daan Wesselink is a PhD candidate at University of Oxford and works both at the Welcome Centre for Integrative Neuroimaging (Oxford) and the Institute of Cognitive Neuroscience (University College London). He uses MRI to study somatosensory representation in the human cortex. More specifically, his work examines the boundaries of sensorimotor plasticity following changes in input..

Sensory feedback through electrodes - made it really worse

Sensory feedback through electrodes placed on my arm would eventually jack up my phantom pains to unprecedented high new levels (link). However, there were some studies that suggested that this should work, as deafferentation,  i.e. the lack of sensory stimulation of the amputated nerve, was made responsible for phantom pains. What did work was when I was there and the person there talked to me, or rubbed my back with alcohol or did this and that. That was the effect of nice positive distraction and I subjectively pinned it down to their individual characteristics, without further details. After I realized that I knew the best way to spend time with less pain was serious distraction. Clearly that to this day is a mainstay for me.

Medications - expensive, significant side effects, no tangible effect on phantom pains

Medication would not help me, and we tried a lot. There are several recommendations by several people, but by and large, side effects and cost were a real problem while the medicaments did not help a bit. One doctors said that if a substance generally does not help, it would not make a big difference how it was administered (i.e., skin patch vs. tablet vs. injection, for example).

Myoelectric arm - made it a bit worse if at all, but certainly no improvement

Myoelectric arm use wasn't it, either. When I wear a myoelectric prosthesis, that also and primarily chafes, abrades, blisters up, or otherwise damages my stump, pains will be bad also, regardless of the suggestion by academic research about how I needed to wear a myoelectric prosthesis in order to reduce phantom pain [4]. With the myoelectric arm, that just never seems to play out - what I got was nothing of the kind; instead there were blisters and abrasions, bruising and electrochemical electrode burns, and with pulling my myodesis over the bone ends back and forth, a summed up recipe for disaster, phantom pain wise.

To be careful about distraction as major factor

I realized early into this that whenever I participated in a study, or tried something new (as listed above): the initial interactions were often accompanied by markedly reduced phantom pain.

Until I found that I get the exact same effect by watching comedy clips on YouTube or by going retail therapy, like, checking out headphones at the electronics shop, or finding a suitable wooden board to cut up to make some shelf boards at home - all these would be equally "therapeutic". So I decided to distract myself all day with anything including work. To this day, that is what works: distraction.

Congestion assessment: indirectly via skin temperature and pain

Pain - temperature correlation

While some of the above listed factors I found to contribute to my phantom pains are too profane to make a thing out of, congestion and temperature do have an apparative or device-related attraction: there, we can justify to play with toys. And in today's world, where robotics researchers cannot build prosthetic hands that just excel at the very top of super performance, because, well, they can't, there, any light at the end of the dark tunnel of not knowing what to do with apparats, with devices, with ding dangs, with blim blums, is most certainly relief to all that suffer from such. Personally I just look my arm, touch it, and go "oh" - but now seeing as if so many people are deeply lost in using too much machinery (including the oh-so-costly MRI machines) to achieve so little for us, I think that the actual use of a simple thermometer should come as a biographical, epistemic and coherence-related life saver. After all, one still tries to tie the narratives together, at least somehow right?

I used a RICH METERS GM550 infrared thermometer to obtain skin temperatures in various situations. I also wrote down subjective pain levels.

For whatever it is worth: skin temperature on my stump and phantom pains somewhat or loosely seem to correlate.

These diagrams just show the current state of affairs here - my pains go off the (that, actually) chart when the arm gets really cold, and I tried, with frostbite after two days of skiing at minus 15 deg C. I was just not in it for the sake of anecdotal science storytelling, to go ahead and document higher pain levels.

For protocol, if ever you do that, write down your subjective relative pain level first, then take the temperature maybe both on the tip and the lateral side of the stump. One could take some white-balance calibrated photos, too, but then, this was not a skin color contest. Also, skin color as such may be difficult to read correctly: when I compress my arm and then remove the sleeve, the skin is relatively red and the stump still takes a while before getting more bloated and puffy and painful again.

The skin temperature on the stump is not the direct determinant of the pain, as far as I would say from experience. Much rather, it is an expression of the degree of congestion, and comparing skin temperatures per se only makes sense if ambient temperatures are about the same. So I took the measurements at normal winter room temperatures around 23-24 deg C here.

So the skin on my stump hardly ever exceeds  27 - 27,5 deg C when sitting around at normal ambient room temperatures.

If I want it higher (and I tried using a bandage, see the nifty diagrams), I have to compress it. Then, phantom pains silently walk out the door, not entirely, but almost. And the skin on the stump gets (relatively) warmer from inside out. The effect for less pain has to be improved circulation, however: when I go outside, even in winter temperatures, and I do wear a compression sleeve, pains are not bad even if the absolute temperature is low. So, just or primarily warming the stump (but not compressing it) is not an effective way for me. Compressing it and then, also, subsequently, and in addition, wearing a warm sleeve over it, seems to be the way to go for me. Incidentally, the stump being colder than the other arm also correlates with pain levels at least anecdotally, subjectively, and roughly: the cooler the stump skin as compared to my left forearm, the higher pain levels tend to be.

The benefit versus cost or effort that I get for compression is really fabulous. Stump compression costs (almost) nothing and works like a charm.

Circulation issues as peripheral cause for congestion and then phantom pain

While some neurology and psychology fans still would suggest that stress, anger, feeling depressed, etc. would be primary factors that cause extra phantom pain, I would suggest that these factors will also affect circulation. Alternatively, they may also be secondary factors with a primary factor being peripherally boosted and amplified, centrally pre-programmed, neuropathic pain. So the presence of phantom pain as issue of cortical organization in relation to deafferentiation sure may be a thing, but it may not be quite as incapacitating per se - much rather, it seems to be the addition of skin injury, rashes for examples, the addition of really dry chafed skin, and then surely the addition of congestion due to vascular issues, as well as anything that messes up peripheral nerves on top such as musculoskeletal problems, all of which ultimately appear to drive an otherwise acceptable pain level up.

To then address the cortical aspects as a first priority seems interesting in theory, but may probably not work too well anyway, unless the peripheral triggers all go away first. Once I treat all of my peripheral issues with a real effort (which I may do every now and then), the remaining feeling does not seem to be that of phantom pain but that of phantom sensations and they are also quite mild, like a far away buzz.

Personally, that is where I started to look first and with practical success: the peripheral triggers of phantom pain. Circulation problems, venous congestion, skin issues such as injuries or rashes, jacking up pre-existing neuropathic pain, musculoskeletal pains of neck, shoulders, back or arms, are neither glorious nor mysterious, nor are they rocket science or neurosurgery, either. They can be addressed using totally profane bare bone somatic medicine.

While musculoskeletal causes for increased phantom pains are not too well published, they still seem to be so uninteresting that clinicians' faces fall right asleep whenever I go to a doctor, which I only rarely do, to ask for a physiotherapy prescription. But vascular abnormalities may have one of the most striking pain-no pain correlation, which seems to coincide with direct experience of my arm.

So in a short sentence, I tend to grease and compress the stump a bit, move it a bit, get a hot bath every now and then, do a bit of sport, massage the neck and back etc., and distract myself as much as ever possible.

 

The problem of clinical medicine and research to "see" a cause, when they are fatally distracted themselves

Amputation may seem as a perversely pervasive handicap in on particular way: other people, particular clinical doctors and researchers, get so much to see, visually, as the non-disabled spectators that they are, that they will be convinced that they have "seen" everything there is to see. So you see an amputee with a healed stump, washed and cleaned up neatly, and they are stating they are in pain. Nothing else to see though. Surely they must have psychiatric or neurological symptoms as true explanation for their pain, right? Must be something wrong in their brain because the rest "looks" normal?  That is how you may never even consider that if the phantom mechanisms, whatever they are, contain a congested stump, or they contain entrapped scars or such, possibly pulling or pressing on neuroma, or if there are seriously cramped up muscles and inflamed tendons from asymmetry or wrong use related orthopedic problems that really hurt an amputee a lot, then you are only left with a totally normal looking amputee, in which ultimately it might be their psyche as the only thing you think that you "see" or understand.

While you overlook all relevant bits, your correlation vs. causation may not be too hip either: these amputees might even be a bit beside themselves, with that type and level of pain, give or take a few years: after a few years of daily pain jolts, anyone may be a bit more irritable. Anxious. Depressed. Aggressive even. You may want to try phantom pain for 3-4 years before jumping to other conclusions yourself, I think it would be the perfect eye-opener for a number of people. So you as a doctor may offer a trinket, a toy, a tool, a thing you thought up to "treat" phantom pain. And to be frank, from my experience, us people with untreated vascular congestion and pain in their stump will find any distraction a great source of relief. Other amputees may go kill themselves. But I will buy myself a bicycle horn, a hot dog, download a free computer game (ever tried to go deep into the game of Neverball? ah,... I spent months gaming away evenings, and let me tell you, once you start to get into the freestyle levels, as difficult as they may be, and find others' YouTube movies related to these, you may really start to get lost in a totally new world, proverbial "Tannhaeuser Gates" in the best sense of Blade Runner), watch re-re-runs of the Muppet Show, and feel the pains slipping away from the center of attention.

Unless you start by seriously investigating treatable, relatively easy to reduce somatic pain causes, I am not sure what you are really after. Certainly not after the applause of amputees. And with that, phantom pain may really be quite complex only in theory.

Research-related and clinical medicine-related paradigm issues

Phantom pain reduction by pragmatically addressing what can be addressed right here and now is something I did and do and it was a good idea that is evidence-based

In my instance, I find that phantom pain parts are unequally distributed, making it a quite practical and accessible subject: a major part of my phantom pains are definitely congestion-related, injury-related, and asymmetry-related from musculoskeletal problems proximal to the stump. That is vulgar, profane, down to earth, tangible, and very somatic. Boring, in fact. When I do something about it by compressing the arm as explained, it is very little effort and usually significant gain. That is also rather profane. No fMRI needed. Just wrap the stump up and give it a rest. When I protect my stump from injury, really, there won't be an academic outcry. When I get massages and hot baths, really I am an older guy doing what other older guys do. Also I watch a lot of silly stuff and read this and that, play free games and talk with my SO a lot. And there are practically no side effects or unwarranted effects. But the effects on the phantom pains are super. Cynically we could look at it from the flip side: who benefits if it is not gone?

Phantom pain reduction by pragmatically addressing what can be addressed right here and now is something others probably did not do but we can go check

We should really check for scientific studies of papers investigating central nervous system reasons for phantom pains in amputees that do or do not state that "peripheral somatic pain correlates such as vascular causes for phantom pain and neuromata were sought for and excluded in the study group".

The role of prosthetic suspension and sockets in keeping phantom pains down

  • To alleviate phantom pains well, you want a good prosthetic socket. Not some other means of mounting the prosthesis, like, osseointegration. Sockets are great, they compress the problematic stump soft tissues and they make phantom pains go down. Generally, and at least here.
  • I want the socket to fit well and be relatively narrow. I would not want a socket to match the scanned surface of my flabby stump. Instead, my prosthetist will perform a cast using tension, and compress the case with his hands to make it tighter in selected areas. You cannot replace interactive work on making a well-fitted socket that is more comfortable to wear than to not wear otherwise. A 3D-scan would not do the situation justice.
  • I want some means to micro-tune the squeeze and fit every day, like, by using socks or wraps or sleeves, possibly in layers.
  • Ridges at the inside of the socket, protruding electrodes, electrodes as such, anything that causes a skin friction or electrode burn type skin rash, must be avoided. Skin rashes that burn, itch or are painful otherwise, are not good for phantom pain. So body-powered arms win. Friction rashes were an almost daily problem, itching and burning like mad, they took a day or a week until they were healed again. So, tube gauze underneath Ohio Willowwood liners do the trick, with the gauze as liner-liner probably functioning as mechanical mediator.
  • The prosthesis protects my stump from sunburns and all sorts of other injury.
  • The prosthesis reduces my asymmetry-related musculoskeletal issues that otherwise may cause severe bouts and jolts of phantom pains.

Reducing the pain and nuisance level directly impacts whether I want to wear the prosthesis. This directly impacts my body image integration of the prosthetic device: it is a super tool to wear and get adjusted to.

And there is one other thing!

Because, yeah, there is this one other thing. I once had a right hand that, also, was jocked full of thrombosed veins. Incidentally, I was, also, in a lot of pain then. The blood vessels were screwed up, in other words. Not that was the only problem then, there was also a tumor growing and spreading around. The tissue underneath the skin had appeared gray to me. The whole hand thing was weird. The hand was in screaming pain. Did anyone think of blood thinners? Or some diagnostic to see whether there was a circulation issue? No. They prescribed antidepressants and said it would be great to take walks in the forest to reduce stress. Ultimately, it was the pathologist that found these diffusely thrombosed damaged vessels in my then-amputated hand. So, you may at least somewhat get a rough idea of what I personally think of an assessment of pain that aims for my brain or psyche, before considering what I believe are very, very obvious somatic peripheral and possibly vascular reasons that can be treated by known treatments.

Evidence base

Evidence base: vascular problems in amputees' residual limbs in connection with phantom pain are an established problem

There are a number of studies that examined that.

One study of 31 amputated limbs [5], excluding amputations for vascular disease, only containing tumor and trauma as indications for the amputation, reported a high correlation of vascular abnormality and phantom pain. When they then raised body temperature without treating or removing the vascular problems, as my experience above, phantom pains would rise.

"The vascularization of the stumps was found to be profuse, sparse, or of an intermediate form. In some instances, the arteriographic appearances were probably pathologic, consisting of sinuous vessels and persisting venous networks. Pathologic vessels of this type were seen only in patients with pain. In those without any form of discomfort, the vascularization was as a rule sparse-unless skin infection was present or the stump had been treated with skin grafting. Skin temperature measurement showed the skin of the stump to rise in temperature when body temperature was raised in patients with phantom pain, while in those without current phantom pain the skin temperature usually did not rise" [5].

Arteriographic findings in 31 amputated limbs Hypervascularisation including tortuosity of wide vessels Arteriosclerotic occlusion Normal
No pain, skin good 0 1 12
No pain, but infection or skin grafting 4 0 0
Moderate pain 5 1 0
Disabling pain 6 1 0

One interesting other paper to recommend is that of Reinhardt (1972) [6].

There, it appears that an overarching pathology seemingly is found in arteriovenous anastomoses. People with these in their stump, regardless of other vessel abnormalities, almost always had complaints of pain in their residual limb. That paper also summarizes that the majority of people without symptoms of phantom pain have normal vasculature in their stump, whereas the majority of people with phantom pains have pathological vasculature in their stump.

The problem of such vascular abnormalities has been studied more extensively in lower leg varicosis [7]. There, congestion, and burning pain, are all there, described in detail.

Activating the stump by using its muscles helps to reduce stasis as well [8, 9].

There is no other way than to regard vascular problems as one highly relevant clear peripheral cause for stump problems.

This, totally, matches my hand(s) on experience with this. This really resonates, makes sense, is very plausible.

It has been published repeatedly. There is a clear correlation between pathological vascular findings and pains, and treatment while not perfect can be somehow approximated real fast and real cheap.

Evidence base: studies that examine central nervous reasons for phantom pains mostly do not exclude the possibility of obvious peripheral causes in their study subjects explicitly first

As outlined above, I feel that it might be justified on a clear evidence base, to first address obvious frequent and treatable if not peripheral, profane and simple causes for phantom pains before starting to spend a lot of money on or mess with the obscure depths of brain function.

  • Clearly, neuroma, vascular and other peripheral issues seem to be at the forefront of what could be considered and addressed before going into the realm of neurobiology of central nervous system issues. One particular study that evaluated phantom pain, in fact, acknowledged neuroma, while not mentioning vascular issues, injuries of the amputated limbs such as skin rashes or asymmetry related musculoskeletal problems [10].
  • Myoelectric prostheses [11, 12] or TENS (Transcutaneous Electrical Nerve Stimulation) [13, 14] have been claimed to reduce phantom pain. A clear separation of activating muscle pump [8] or compressing stump for improved blood flow [5, 6, 9] as bare physical mechanisms to reduce pain was not separated from the prosthesis use. So the effect of a prosthesis on phantom pain may be less specific than assumed.
  • Magnetic Resonance Imaging (fMRI) was performed to investigate after phantom pains [15, 4, 16]. Some two-point discrimination tests did not study whether underlying muscle contractions to improve blood flow happened or did not happen in their study group, nor were any vascular causes or neuromata taken care of, according to the manuscripts that got published [17].
  • There seems to be no mention of what appear to me rather obvious peripheral causes for phantom pains in the study group in the cited papers: neither neuromata nor vascular or other peripheral issues had been considered in their study groups, leave alone examined, or understood, and from these writings, these possible causes also had definitely not been addressed in any attempt of treatment. It thus remains unclear whether simply activating a forearm muscle pump to improve vascular backflow [9] might be one of the pathophysiological mechanism at work here.
  • No double-blind study using distraction was employed either, further weakening their actual evidence base. More importantly, it also remains unclear whether the unfortunate subjects that ostensibly did suffer pain and were in the hands of these specialists there ever got involved in actually getting a closer look at possibly more relevant examinations for profane peripheral problems and whether there had been any attempts for directed treatment.
  • None of the studies named distraction as possible cause for study effect, and none addressed that. Even though it is the most obvious cause for reduced phantom pain, when I sit in your lab, and you look the part. Of course not every research has the suitable lab assistant that matches al individual research subjects' profiles, there are aspects there.

Evidence base: what can be regarded as actual evidence base with regard to phantom pains needs to be considered also for recommendations and study designs

  • There seems to be a high correlation between vascular abnormality and phantom pain [5], and with raised body temperature without treating or removing the vascular problems, phantom pains would rise [5]. So to not warm up the arm without treating the congestion first.
  • Vascular problems and congestion are real problems in amputees and they are highly correlated with particularly severe phantom pains [8, 9]. In other words: the majority of people without symptoms of phantom pain have normal vasculature in their stump, whereas the majority of people with phantom pains have pathological vasculature in their stump [6]. As long as these are not primarily addressed, also in studies investigating other avenues to examine, quantify, or understand and even treat phantom pains, they clearly miss this relevant aspect.
  • A relevant remedy for vascular congestion (but not causal treatment) may be the compression of the stump, which also may effectively reduce associated burning pains well known from addressing similar issues in varicose legs [7]. Compression can be effected through bandages, compression stockings, or a narrow prosthetic socket and liner. Conversely, one needs to exclude that effect if one wants to examine specific aspects of other phantom pain treatments.
  • A second way to reduce congestion is the activation of the muscles, which improve the vascular perfusion of the stump [5, 6, 9]. Any study that goes beyond that, and, for example, suggests the use of a myoelectric arm to improve phantom pains, wants to separate any specific effect of a myoelectric arm from stump compression (socket, liner) and pure activation of the muscle pump alone.
  • Electrode stimulation seems to have some effect on phantom pain [13, 14] but as stated here (above), necessary to look at the other aspects first. A congested stump may react with even more pain from electrode stimulation alone, or at least that was my own experience across myoelectric control without any socket, together with sensory feedback stimulation (link).

Off-label use character for almost all things concerning prosthetic arms

Last but not the least, chronic use of a prosthesis with usually frequent if not permanently prevalent skin damages may in itself be rather harmful rather than beneficial inasmuch as phantom pains are concerned. For other skin damage, that is, outside the narrow subject of prosthetic overuse of residual limb characteristics, neuropathic pain due to skin damage itself is a known effect [18]. For amputees, that issue likely was never studied.

If any researcher or developer suggesting that the chronic use of a myoelectric prosthesis, based on their own, possibly insufficiently investigated research (see above), clearly recommends a more wide and deep, hard and thorough use of myoelectric prostheses, their recommendation will have to be backed up by reliable, trustworthy and sensible caveats and warnings.

At this moment, we appear to be far away from a situation like that. There are no guarantees. They don't know. They really overlook. If they miss, provide sloppy work, we get the hype and we get the unsolved problems that remain. After 10 years of empty promises, I still wrap my stump to reduce pain and a body-powered hook is still the best prosthetic arm for real work, I get a hot bath or go swimming, and I distract myself as much as possible - and none of that constitutes a problem. Nothing has changed at the front. The amputee is still the only person truly in charge of their problems, doctors or R&D are far too far away. And what do they want!? Have they ever achieved anything there that actually helped me? Truly? Yes, and they provided the negative or maybe more even the "empty" experiences, they provided all the useless attempts, they did constitute the "control group", so to say. They were not without value on my path towards trying to work out my phantom pain issues.

The rest remains truly experimental.

In terms of neuropathic pain and exacerbation thereof, currently, with just about all that we do - including stump compression to reduce possibly vascular pathology induced pain, avoidance of direct stump skin stimulation to stay clear of neuroma and other injuries, to avoid electrode-induced skin burns, even including the apparent recommendation to use a myoelectric prosthesis more despite possibly massive consequences to direct skin damage [link], treating asymmetry-related overuse before it happens by wearing a useful prosthetic arm and after it happened by treating musculoskeletal problems - seems entirely off-label. Heuristically justified, well educated in the attempts, yes, sometimes. Conversely, because R&D and medicine clearly stopped caring about this maybe decades ago, "caring" as in really directing full attention and following up on truly effective treatments, the planets stopped to be the same, and as I never fail to say: today, an arm amputee (de-facto) lives on a different planet than R&D and much of clinical medicine. There is little to no overlap. With that separation of planets, I read of another study that asks for physical participation and I immediately dismiss it. That is how far this has come. That had not been the case at first - so they had worked hard to get me to that point, to suck up the fact that we are on different worlds altogether.

No prosthetic socket or liner ever was approved for real use across any larger cohort of users that yielded systematic and unabridged user feedback or that was available for systematic deep and thorough evaluation for any actual benefits or side effects of wearing these. No prosthetic use pattern ever was really administered in a well-based fashion to see what would happen, and the prosthetic options were not varied sufficiently well to compare actual outcomes in comparison to other off-label attempts to reducing phantom pains, to increasing rubber hand illusion, and so on. At a time where amputees are regarded as generally and permanently unfit to cognitive judgment [link], it is also a rather difficult time for anyone to ask for such studies.

If anything, we may have to realize just how fully stalled the whole attempt to have users wear stuff that was just built but never really tested really is.

 

[1] G. Riddoch, "Phantom limbs and body shape.," Brain: A Journal of Neurology, 1941.
[Bibtex]
@article{riddoch1941phantom,
  title={Phantom limbs and body shape.},
  author={Riddoch, George},
  journal={Brain: A Journal of Neurology},
  year={1941},
  publisher={Oxford University Press}
}
[2] J. M. Donnelly, C. F. de las Peñas, M. Finnegan, D. Simons, and J. L. Freeman, Travell, Simons & Simons' Myofascial Pain and Dysfunction: The Trigger Point Manual, Wolters Kluwer Health, 2018.
[Bibtex]
@book{donnelly2018travell,
  title={Travell, Simons \& Simons' Myofascial Pain and Dysfunction: The Trigger Point Manual},
  author={Donnelly, J.M. and de las Pe{\~n}as, C.F. and Finnegan, M. and Simons, D. and Freeman, J.L.},
  isbn={9780781755603},
  lccn={2018024798},
  url={https://books.google.ch/books?id=JxtWPgAACAAJ},
  year={2018},
  publisher={Wolters Kluwer Health}
}
[3] E. R. Larson, "Massage therapy effects in a long-term prosthetic user with fibular hemimelia," Journal of Bodywork and Movement Therapies, vol. 19, iss. 2, pp. 261-267, 2015.
[Bibtex]
@article{larson2015massage,
  title={Massage therapy effects in a long-term prosthetic user with fibular hemimelia},
  author={Larson, Erika Rae},
  journal={Journal of Bodywork and Movement Therapies},
  volume={19},
  number={2},
  pages={261--267},
  year={2015},
  publisher={Elsevier}
}
[4] M. Lotze, W. Grodd, N. Birbaumer, M. Erb, E. Huse, and H. Flor, "Does use of a myoelectric prosthesis prevent cortical reorganization and phantom limb pain?," Nature Neuroscience, vol. 2, iss. 6, p. 501, 1999.
[Bibtex]
@article{lotze1999does,
  title={Does use of a myoelectric prosthesis prevent cortical reorganization and phantom limb pain?},
  author={Lotze, Mi and Grodd, W and Birbaumer, N and Erb, M and Huse, El and Flor, H},
  journal={Nature Neuroscience},
  volume={2},
  number={6},
  pages={501},
  year={1999},
  publisher={Nature Publishing Group}
}
[5] U. Erikson and A. Hulth, "Circulation of amputation stumps: Arteriography and skin temperature studies," Acta Orthopaedica Scandinavica, vol. 32, iss. 1-4, pp. 159-170, 1962.
[Bibtex]
@article{erikson1962circulation,
  title={Circulation of amputation stumps: Arteriography and skin temperature studies},
  author={Erikson, Uno and Hulth, Anders},
  journal={Acta Orthopaedica Scandinavica},
  volume={32},
  number={1-4},
  pages={159--170},
  year={1962},
  publisher={Taylor \& Francis}
}
[6] K. Reinhardt, "Uber den Wert der Stumpfarteriographie für die Diagnostik und ätiologische Klärung von Stumpfbeschwerden," DMW Deutsche Medizinische Wochenschrift, vol. 97, iss. 07, pp. 249-252, 1972.
[Bibtex]
@article{reinhardt1972wert,
  title={Uber den Wert der Stumpfarteriographie f{\"u}r die Diagnostik und {\"a}tiologische Kl{\"a}rung von Stumpfbeschwerden},
  author={Reinhardt, K},
  journal={DMW Deutsche Medizinische Wochenschrift},
  volume={97},
  number={07},
  pages={249--252},
  year={1972},
  publisher={{\copyright} Georg Thieme Verlag, Stuttgart}
}
[7] H. Haimovici, C. Steinman, and L. H. Caplan, "Role of arteriovenous anastomoses in vascular diseases of the lower extremity.," Annals of Surgery, vol. 164, iss. 6, p. 990, 1966.
[Bibtex]
@article{haimovici1966role,
  title={Role of arteriovenous anastomoses in vascular diseases of the lower extremity.},
  author={Haimovici, Henry and Steinman, CHARLES and Caplan, LAWRENCE H},
  journal={Annals of Surgery},
  volume={164},
  number={6},
  pages={990},
  year={1966},
  publisher={Lippincott, Williams, and Wilkins}
}
[8] R. Dederich, "Plastic treatment of the muscles and bone in amputation surgery," The Journal of Bone and Joint Surgery. British volume, vol. 45, iss. 1, pp. 60-66, 1963.
[Bibtex]
@article{dederich1963plastic,
  title={Plastic treatment of the muscles and bone in amputation surgery},
  author={Dederich, Rolf},
  journal={The Journal of Bone and Joint Surgery. British volume},
  volume={45},
  number={1},
  pages={60--66},
  year={1963},
  publisher={The British Editorial Society of Bone and Joint Surgery}
}
[9] P. D. Faghri, "The effects of neuromuscular stimulation-induced muscle contraction versus elevation on hand edema in CVA patients," Journal of Hand Therapy, vol. 10, iss. 1, pp. 29-34, 1997.
[Bibtex]
@article{faghri1997effects,
  title={The effects of neuromuscular stimulation-induced muscle contraction versus elevation on hand edema in CVA patients},
  author={Faghri, Pouran D},
  journal={Journal of Hand Therapy},
  volume={10},
  number={1},
  pages={29--34},
  year={1997},
  publisher={Elsevier}
}
[10] C. M. Kooijman, P. U. Dijkstra, J. H. Geertzen, A. Elzinga, and C. P. van der Schans, "Phantom pain and phantom sensations in upper limb amputees: an epidemiological study," Pain, vol. 87, iss. 1, pp. 33-41, 2000.
[Bibtex]
@article{kooijman2000phantom,
  title={Phantom pain and phantom sensations in upper limb amputees: an epidemiological study},
  author={Kooijman, Carolien M and Dijkstra, Pieter U and Geertzen, Jan HB and Elzinga, Albert and van der Schans, Cees P},
  journal={Pain},
  volume={87},
  number={1},
  pages={33--41},
  year={2000},
  publisher={Elsevier}
}
[11] C. Dietrich, K. Walter-Walsh, S. Preißler, G. O. Hofmann, O. W. Witte, W. H. Miltner, and T. Weiss, "Sensory feedback prosthesis reduces phantom limb pain: proof of a principle," Neuroscience Letters, vol. 507, iss. 2, pp. 97-100, 2012.
[Bibtex]
@article{dietrich2012sensory,
  title={Sensory feedback prosthesis reduces phantom limb pain: proof of a principle},
  author={Dietrich, Caroline and Walter-Walsh, Katrin and Prei{\ss}ler, Sandra and Hofmann, Gunther O and Witte, Otto W and Miltner, Wolfgang HR and Weiss, Thomas},
  journal={Neuroscience Letters},
  volume={507},
  number={2},
  pages={97--100},
  year={2012},
  publisher={Elsevier}
}
[12] T. Weiss, C. Dietrich, S. Preißler, H. Möbius, H. Gube, F. Torma, W. Miltner, and G. Hofmann, "Nutzung einer myoelektrischen Unterarmprothese mit Biofeedback," Trauma und Berufskrankheit, vol. 15, iss. 3, pp. 207-215, 2013.
[Bibtex]
@article{weiss2013nutzung,
  title={Nutzung einer myoelektrischen Unterarmprothese mit Biofeedback},
  author={Weiss, T and Dietrich, C and Prei{\ss}ler, S and M{\"o}bius, H and Gube, H and Torma, F and Miltner, WHR and Hofmann, G},
  journal={Trauma und Berufskrankheit},
  volume={15},
  number={3},
  pages={207--215},
  year={2013},
  publisher={Springer}
}
[13] V. Finsen, L. Persen, M. Lovlien, E. Veslegaard, M. Simensen, A. Gasvann, and P. Benum, "Transcutaneous electrical nerve stimulation after major amputation," The Journal of bone and joint surgery. British volume, vol. 70, iss. 1, pp. 109-112, 1988.
[Bibtex]
@article{finsen1988transcutaneous,
  title={Transcutaneous electrical nerve stimulation after major amputation},
  author={Finsen, V and Persen, L and Lovlien, M and Veslegaard, EK and Simensen, M and Gasvann, AK and Benum, P},
  journal={The Journal of bone and joint surgery. British volume},
  volume={70},
  number={1},
  pages={109--112},
  year={1988},
  publisher={The British Editorial Society of Bone and Joint Surgery}
}
[14] M. R. Mulvey, A. Bagnall, M. I. Johnson, and P. R. Marchant, "Transcutaneous electrical nerve stimulation (TENS) for phantom pain and stump pain following amputation in adults," Cochrane Database of Systematic Reviews, iss. 5, 2010.
[Bibtex]
@article{mulvey2010transcutaneous,
  title={Transcutaneous electrical nerve stimulation (TENS) for phantom pain and stump pain following amputation in adults},
  author={Mulvey, Matthew R and Bagnall, Anne-Marie and Johnson, Mark I and Marchant, Paul R},
  journal={Cochrane Database of Systematic Reviews},
  number={5},
  year={2010},
  publisher={John Wiley \& Sons, Ltd}
}
[15] H. Flor, T. Elbert, W. Mühlnickel, C. Pantev, C. Wienbruch, and E. Taub, "Cortical reorganization and phantom phenomena in congenital and traumatic upper-extremity amputees," Experimental Brain Research, vol. 119, iss. 2, pp. 205-212, 1998.
[Bibtex]
@article{flor1998cortical,
  title={Cortical reorganization and phantom phenomena in congenital and traumatic upper-extremity amputees},
  author={Flor, Herta and Elbert, Thomas and M{\"u}hlnickel, Werner and Pantev, Christo and Wienbruch, Christian and Taub, Edward},
  journal={Experimental Brain Research},
  volume={119},
  number={2},
  pages={205--212},
  year={1998},
  publisher={Springer}
}
[16] K. MacIver, D. Lloyd, S. Kelly, N. Roberts, and T. Nurmikko, "Phantom limb pain, cortical reorganization and the therapeutic effect of mental imagery," Brain, vol. 131, iss. 8, pp. 2181-2191, 2008.
[Bibtex]
@article{maciver2008phantom,
  title={Phantom limb pain, cortical reorganization and the therapeutic effect of mental imagery},
  author={MacIver, K and Lloyd, DM and Kelly, S and Roberts, N and Nurmikko, T},
  journal={Brain},
  volume={131},
  number={8},
  pages={2181--2191},
  year={2008},
  publisher={Oxford University Press}
}
[17] H. Flor, C. Denke, M. Schaefer, and S. Grüsser, "Effect of sensory discrimination training on cortical reorganisation and phantom limb pain," The Lancet, vol. 357, iss. 9270, pp. 1763-1764, 2001.
[Bibtex]
@article{flor2001effect,
  title={Effect of sensory discrimination training on cortical reorganisation and phantom limb pain},
  author={Flor, Herta and Denke, Claudia and Schaefer, Michael and Gr{\"u}sser, Sabine},
  journal={The Lancet},
  volume={357},
  number={9270},
  pages={1763--1764},
  year={2001},
  publisher={Elsevier}
}
[18] G. R. Hadley, J. A. Gayle, J. Ripoll, M. R. Jones, C. E. Argoff, R. J. Kaye, and A. D. Kaye, "Post-herpetic neuralgia: a review," Current Pain and Headache Reports, vol. 20, iss. 3, p. 17, 2016.
[Bibtex]
@article{hadley2016post,
  title={Post-herpetic neuralgia: a review},
  author={Hadley, Graham R and Gayle, Julie A and Ripoll, Juan and Jones, Mark R and Argoff, Charles E and Kaye, Rachel J and Kaye, Alan D},
  journal={Current Pain and Headache Reports},
  volume={20},
  number={3},
  pages={17},
  year={2016},
  publisher={Springer}
}

Footnotes

Footnotes
1 Conference: Hand, Brain and Technology 2018, August 26-31 2018, Monte Verita, Ticino, Switzerland. Title: Obtaining and maintaining cortical hand representation: Evidence from acquired and congenital handlessness. Authors: Daan B Wesselink1,2*, Fiona M.Z. van den Heiligenberg2, Naveed Ejaz3,4, Harriet Dempsey-Jones1,2, Lucilla Cardinali3,5, Aurelie Tarall-Jozwiak6, Jörn Diedrichsen3,4, Tamar R Makin1,2 -- 1 Institute of Cognitive Neuroscience, University College London, London, UK; 2 FMRIB Centre, Nuffield Department of Clinical Neuroscience, University of Oxford, Oxford, UK; 3 Brain and Mind Institute, University of Western Ontario, Canada; 4 Department of Computer Science, University of Western Ontario, Canada 5 Unit for Visually Impaired People, Istituto Italiano di Tecnologia, Genoa, Italy; 6 Queen Mary’s Hospital, London, UK. ----- Abstract: Hand representation in the primary somatosensory cortex (SI) is thought to be shaped and maintained by experience. However, although the fine characteristics of digit topography could be fine-tuned by altered behavior, overall hand structure is highly stable across people and time [1]. Recently, we even showed that three amputees experiencing highly vivid phantom sensations maintain cortical representation of their missing hand [2]. Still, it is unclear whether this persistence of hand representation depends on experiencing vivid phantom sensation, or whether it is immune to the long-term withdrawal of sensory feedback. In this study, we scanned 18 unilateral amputees (17±10 years since amputation) with varying degrees of phantom sensations, as well as individuals with congenital unilateral limb absence (without phantom sensations) and two-handed controls. Inside a 3T MRI scanner, all participants performed individual digit movements with either hand (missing/non-dominant and intact/dominant hand), as well as a more demanding motor synergy task with their intact hand. Using representational similarity analysis, we interrogated the inter-digit (activity) pattern structure within the SI hand area. The deprived cortex, contralateral to amputees’ missing hand, was activated by the movement of both phantom digits and the (ipsilateral) intact hand. In both cases, the representational structure of the hand was stable, as we found no differences between the pattern structure of amputees and that of controls. The deprived cortex was stable in all amputees; this did not depend on perceived phantom sensations (assessed using questionnaires). In contrast, the representation of congenital one-handers’ missing hand was severely diminished. Finally, activation of ipsilateral resources (e.g. amputees’ deprived cortex) during high motor demands alluded to a functional role in (intact) hand motor control. Together, our findings suggest that once cortical organization is formed, it is remarkably persistent, despite the drastic loss of afferent input and lack of sensory experience. References [1] Ejaz, N., Hamada, M., & Diedrichsen, J. (2015) Hand use predicts the structure of representations in sensorimotor cortex. Nat. Neurosci., 18, 1034–1040. [2] Kikkert, S., Kolasinski, J., Jbabdi, S., Tracey, I., Beckmann, C.F., Berg, H.J., & Makin, T.R. (2016) Revealing the neural fingerprints of a missing hand. eLife, 5, e15292. Short Biography Daan Wesselink is a PhD candidate at University of Oxford and works both at the Welcome Centre for Integrative Neuroimaging (Oxford) and the Institute of Cognitive Neuroscience (University College London). He uses MRI to study somatosensory representation in the human cortex. More specifically, his work examines the boundaries of sensorimotor plasticity following changes in input.

Cite this article:
Wolf Schweitzer: swisswuff.ch - Coping with my own phantom pain {summary: vascular congestion and cold skin: compression really helps - musculoskeletal contribution to pain: hot baths, non-steroidal anti-inflammatory drugs, massages}; published 17/12/2018, 22:07; URL: https://www.swisswuff.ch/tech/?p=9034.

BibTeX: @MISC{schweitzer_wolf_1653030454, author = {Wolf Schweitzer}, title = {{swisswuff.ch - Coping with my own phantom pain {summary: vascular congestion and cold skin: compression really helps - musculoskeletal contribution to pain: hot baths, non-steroidal anti-inflammatory drugs, massages}}}, month = {December}, year = {2018}, url = {https://www.swisswuff.ch/tech/?p=9034} }