“Either–or”: a gateway to complex neuropathic conditions
Rebekah DELLA CASA
OT, CSTP©
Looking for tools
Twenty years ago, as a fresh Occupational Therapist, I was eager to know more about somatosensory dysfunction and rehabilitation for my hand therapy patients with hyposensitivity or hyperaesthesia, in order to offer an efficient rehabilitation for quick recovery of cutaneous sense and better function in their daily tasks.
This is how I discovered the existence of the somatosensory rehabilitation method. Reading the handout of the first course in French I then purchased the very first edition of the book that had just been published in 2003. I found what I was looking for at first: a clear assessment and follow up of somatosensory loss and alteration. But there was far more in the teaching I read. A whole new universe of understanding was opening in front of me. The first step of my journey was to reorganize the information to better understand the mystery this orange book was containing.
This is what I did through the presentation of the somatosensory rehabilitation method I made for my former occupational therapists and physiotherapist colleagues. At that time, I understood that what I was calling hyperesthesia was officially called static mechanical allodynia by the IASP since 1979 (Spicher, 2006). I understood the great importance of bringing mechanical allodynia out, in order to undertake the right assessment and treatment which is radically different than the one prescribed for hypoesthesia. In other words, the rule of the “either – or”. The skin will either be numb or painful to touch.
May I haven’t heard it or may I have missed it in the teaching I received before that, I hadn’t understood that minor nerve injury, should I better say Aβ axonal lesions, could induce severe neuropathic pain issues. To be honest, it took me some time to come to a real understanding of this type of pain and its various severities.
Neuropathic pain to neuralgia
Some of the first neuropathic pain patients I remember having in my practice, were suffering from Complex Regional Pain Syndrome (CRPS) what I, later on, learned to define as a stage V of Aβ axonal lesions. At that time, they were sent to me with a diagnosis of Reflex Sympathetic Dystrophy (RSD) and were addressed for functional rehabilitation. Letting go of what was taught to me until then in order to focus on the somatosensory system, assess the alteration of touch to offer somatosensory rehabilitation was no evidence for me. My attempt, at that time, was to try to get both treatments to coexist. Functional reeducation with an objective of reintegration of the limb in the activities and somatosensory rehabilitation. In these cases, it gave poor results. Not that all other treatments should be avoided, but activity and energetic mobilizing are now known as to nourish the CRPS (Bouchard et al., 2020), as well as touch on a portion of skin presenting mechanical allodynia, which is the case of 65% of patients suffering with CRPS (Spicher et al., 2016).
The patients I met later in my practice, when I started working at the Somatosensory Rehabilitation Centre in Fribourg, were different from the ones addressed to me before. 76% of the patients addressed there, present intermittent or incessant neuralgia (Spicher et al., 2020a). It took me time to grasp who they are and what these conditions induce in daily living, keeping in mind that every situation is unique. In the case of intermittent neuralgia, my observation is that, the successive waves of pain still let the patient breath between the gusts, although the unpredictability of the crises is, for some of them, totally distressing. When crises are not too long nor too strong, life habits can, for some time, stay unchanged. The coping stays possible until patients end up being too exhausted and moody and start being unbearable for their surroundings. In other cases, the patients’ nights become restless and pain starts haunting every single moment of the day. At that degree of pain, the risk of social break is real.
This is a point some of the patients we are caring for reach when they suffer from incessant neuralgia or CRPS. They try to cope with life, family, work best as they can in a world which has started going too fast and being too loud for them ever since pain has invited itself in every crack of their existence. Some have been dealing with the monster of pain for many months even years. They come to us with a vague hope that one day something will change.
As I described above, the existence and manifestations of neuralgia was, for me, a whole new stage of understanding. This knowledge had to build up from theory to practice. The first step towards that understanding was to fully understand the possibility of the co-existence of touch evoked pain (mechanical allodynia) and spontaneous pain (neuralgia) as well as the possible existence of spontaneous pain in the absence of touch evoked pain. This is where, I think, many of us get confused. The concept of a hypoaesthetic territory inducing pain throughout the somatosensory nervous system is not of first evidence. The second step towards a full understanding is to learn to listen to the daily complaints of the patients I have in my care and take them seriously whatever the diagnosis (Spicher et al., 2020a). This is, one of the key skills I try to develop in my daily practice.
Powerlessness
Brought up with the sense that the medical doctor knows what is best for them, some patients wake up to the fact that the neuropathic pain they developed distresses a lot of care givers, medical doctors as well as therapists. Unfortunately, when a care giver has tried everything, he knows to help, sooth or heal and feels powerless, the therapeutic attempts can start being devastating.
“The doctor told me nothing was wrong with my ankle, but I feel it is not right and I cannot work like this”, “The neurography is negative, there is nothing wrong so she said I shouldn’t have any pain”, “They told me to put my crutshes down but when I walk, the pain increases”. These are sentences that can be heard in our practices, sentences from patients who have “pain”, as central complaint. The type of “pain” for which the cause can often not be brought to evidence through traditional medical imagery and other clinical testing. The one you will hear in the patients’ words or read on his physical acting when you are carefully and trustfully listening.
Too often, the absence of direct understanding of strange symptoms or exaggerated expression of pain will lead therapists and diverse health specialists to let the patients understand that the problem is in their head (Spicher, 2017). Yet this is not exactly wrong because technically, the inputs of the different nervous systems are, at a point, delt by the brain, some patients understand that they have gone crazy or that they are accused of inventing their pain.
These are times when we, as somatosensory therapists of pain, need to teach the patient about the somatosensory nervous system and what neuroscience has discovered and measured about neuropathic pain. Quite often, somatosensory therapists of pain are led to help the patient deconstruct the false ideas about their affection or express their anger about what they have heard from health specialists, boss, family, friends, medical experts or even health insurances. It is also important to let them hear that anxiety and stress have an impact on their health and pain and that pain has an impact on their psychological state. As well as to let them know that their feeling of powerlessness takes part in their physiological stress, modifying the chemical processes inside the body systems (Maté, 2003).
Hope
The axiom “When the patient reports neuropathic pain symptoms, he has axonal lesions of, at least, one cutaneous nerve branch, including Aβ neurofibers.” (Spicher et al. 2020b) Tells us, what we should look for. At first, we will try to determine if the pain has a neuropathic character or not with the McGill Pain Questionnaire, or at least the search of the somatosensory qualifiers. This tool has the great advantage of letting the patient feel we take the expression of their pain seriously by questioning it very precisely and articulating it with their life habits and loss in terms of activities.
After having set a hypothesis of which nerve branch could be damaged, the diagnostic testing of Aβ axonal lesions will be done with the Aesthesiography as first assessment if the skin is felt as numb. The complaint or beginning of assessment will lead us to the mapping of the allodynography (the clinical examination sign which measures mechanical allodynia) if the touch is experienced by the patient as painful. These two mappings have the great advantage of showing the presence of somatic alteration, although it has stayed invisible until now.
Beverly Kramer states in the foreword of the Atlas (Spicher et al., 2020b): “The “domains” described in this atlas can only be delineated in living subjects, rather than in unconscious immobile patients.” The fact that touch cannot be measured on an unconscious immobile patient can be taken as evidence, yet, the importance or the profound meaning of “living subject” is often set aside. The question it brings up is, knowing the complexity of a human being, “Is it possible to address the quantity and quality of touch without inducing an emotional response”. Even more, the emotional meaning of a sensitivity loss or lack and the pain it can generate, varies from one living subject to another and implies as well his culture, environment and spiritual beliefs. Questioning ourselves about to whom the portion of skin we are assessing belongs too, is of great importance. The human being, living subject, that is in front of me is to be seen not only as a body but also as a soul and spirit (Fromaget, 2017).
“Being or doing”
Many patients are eager to get back to work, to be able to take care of their family again, to be able to get back to their former activities or sports. “I was one who had two jobs and took care of my family…” “I can’t stand seeing the others doing things for me…”, “I can’t do anything anymore. I want to get back to work. I need to get out of my house, …”, “I’ve been told I wouldn’t get any money nor reimbursement for this treatment, I’m supposed to go back to work but I can’t even cook a meal!”. In these words, patients express the added difficulties they are going through. They feel pressed by their own will, by the expectations of their loved ones and surrounding, by financial needs on one side and the physical impossibility on the other hand. They have pushed the door of maladaptation in this world in which: Doing is of much more value than Being. For most of us, in the midst of modern lives, our value and identities take root in what we do first and not in who we are.
The somatosensory exercises prescribed, after meticulous assessment, to train the somatosensory neurologic system in order to fight against pain are central in the reeducation process. This part of the treatment is central in the fact that it gives the patient a weapon for the fight against pain. But somatosensory rehabilitation of pain involves more than that, depending on the neuropathic condition, the psychological state, and the environment, patients need to be taught to “do less” and “be more” in order to get better. This type of intervention implies the questioning of education, values and beliefs. How do we, occupational therapists sit with this and what is the role we can take for our patients concerning their being?
Occupational therapists are trained to empower, to increase the possibilities for patients to act in and on their environment. (Chapdelaine, 2020). In the case of neuropathic pain, this stays as a finality but the path often leads through times of rest and being with oneself. In the case of neuralgia with mechanical allodynia and CRPS with or without mechanical allodynia, patients are taught not to touch, even, not to use a specific joint, they are, for a time, intentionally casted away from their normal life routines and will have to find a new balance once the pain will have decreased. In that time, patients will need to learn to say “no” or to say “stop” in order to follow the therapeutic prescriptions. The therapists will be the ones who will help patients set their limits and take their decisions, reminding them regularly that their decision could be to stop somatosensory rehabilitation.
Twenty years later, I can say that my search for a tool for hand therapy opened my practice to a new therapeutic field which concerns patients from all medical horizons, suffering from the consequences of Aβ axonal lesions of one or several nerve branches, anywhere in their body.
One of the strengths of the method of Somatosensory Pain Rehabilitation (SPR) is that it leads therapists to the management of sometimes, very complex neuropathic pain conditions with, at the start, a very simple question “either – or”. May the patient’s condition be a stage I of Aβ axonal lesions, stage IV with mechanical allodynia, or CRPS, may the patient be suffering for several years or bothered for a few weeks only, may his life be a mess or not, the therapist will try, at first, to determine if a portion of skin is either numb or painful to touch. In this way, the method of SPR is a gateway to offer hope in situations which may have sometimes been seen as hopeless until then. Complex it gets though, to lead a treatment which seems so simple with individuals who would rather want us to use a magic wand in order to stop their suffering immediately instead of Semmes-Weinstein monofilaments in order to lead them into a sometimes-long journey away from their debilitating pain.
References
Bouchard, S., Chapdelaine, S., Packham, T.L., Della Casa, R. & Spicher, C.J.(2020). Restless sleep, fears and isolation: the CRPS is NOT incurable. e-News Somatosens Rehab, 17(2), 60-61. Available (02/11/2022): https://www.neuropain.ch/sites/default/files/e-news/e-news_somatosens_rehab_17_2_0.pdf#page=24
Chapdelaine, S. (2020). Guesteditorial My Experience at the Somatosensory Rehabilitation Center: Power and Positionality. Where do I Stand? e-News Somatosens Rehab, 17(3), 80-85. Available (02/11/2022): https://www.neuropain.ch/sites/default/files/e-news/e-news_somatosens_rehab_17_3.pdf#page=3
Fromaget, M. (2017). Corps, âme, esprit. Introduction à l'anthropologie ternaire. Paris : Edition Almora.
Maté, G. (2003). Quand le corps dit non ; Le stress qui démolit. Montréal : Les éditions de l’Homme [The English translation of: When the Body Says No. Alfred A. Knopf Canada].
Spicher, C.J. (2006). Handbook for Somatosensory Rehabilitation. – Foreword: A.L. Dellon. Montpellier, Paris: Sauramps Médical [The English translation of: Spicher, C. (2003). Manuel de rééducation sensitive du corps humain humain (1e édition) – Préface : J.-P. Roll. Genève, Paris : Médecine & Hygiène].
Spicher, C. (2017). Douleurs neuropathiques : NON, ce n’est pas dans la tête ! Tribune de Genève, 15 (une page) [Translated in twelve languages as: Neuropathic Pain: Myth or reality?] Available (02/11/2022): https://www.neuropain.ch/sites/default/files/e-news/e-news_somatosens_rehab_14_2.pdf#page=32
Spicher, C.J., Fehlmann, P., Maihöfner, C, Sprumont, P., Létourneau, E., Dyer, J.O., Masse, J., López-Solà, M., Maupas, E. & Annoni, J.M. (2016). Management Algorithm of Spontaneous Neuropathic Pain and/or Touch-evoked Neuropathic Pain illustrated by prospective observations in clinical practice of 66 chronic Neuropathic Pain Patients. e-News Somatosens Rehab, 13(1), 5-35. Available (02/11/2022): http://www.neuropain.ch/sites/default/files/e-news/e-news_13_1.pdf#page=5
Spicher, C., Barquet, O., Quintal, I., Vittaz, M. & de Andrade Melo Knaut, S. (2020a). DOULEURS NEUROPATHIQUES : évaluation clinique & rééducation sensitive (4e édition) – Préface : F. Moutet. Montpellier, Paris : Sauramps Médical, 379 pages.
Spicher, C.J., Packham, T.L., Buchet, N., Quintal, I. & Sprumont, P. (2020b). Atlas of Cutaneous Branch Territories for the Diagnosis of Neuropathic Pain (1st English edition stemming from the previous 3rd French edition) – Foreword: B. Kramer. Berlin, London, Shanghai, Tokyo, New-York City: Springer-Nature.
