It took a long time but I have known for a while now (from self-observation) that the crux of my chronic pain, which seems to abate at times but then, confusingly, come back and get caught in a downward spiral “for no apparent reason”, is as a result of rigidity or spasm in my muscles…not due to muscle strain as such but as a compensationary measure for hypermobile connective tissues.

Realising this was a lightbulb moment shedding light across all those many bewildering years of chronic pain, wondering how, and why, my limbs had (yet again) turned into blocks of painful, rigamortis-like concrete with very little provocation and yet, at other times, could behave almost as per a normal set of muscles. There seemed to be no rhyme or reason for it, and all my efforts to improve with fitness, exercise, diet etc seemed to make no lasting inroads at all…until I realised I am hypermobile, which informs everything that is going on in my body.

Since learning this, I have seldom found a more succinct description of why this is the case than as follows below, borrowed from the blog of Sports and Orthopaedic Therapy Services (a company I have no experience of except that I just found them on Google but I am especially grateful for the following description of what I have come to know about the place of muscle spasm in EDS):

“In the condition of joint hypermobility which is the primary problem in EDS, the secondary stabilizers, the muscles are found to be in spasm, in order to help stabilize the joint. A muscle in spasm will appear rigid and inelastic, but not due to true tightness, but as a result of a facilitated nervous system. Muscles in spasm are maintained in that state by the central and peripheral nervous system”.

The article continues “A muscle in spasm is painful in part because it will have reduced blood flow. With a reduced blood flow the tissues become hypoxic and there may be a buildup of lactic acid. Without normal blood flow to remove these substances the tissues become irritable and painful to touch. The tissues may feel stiff, but they do not need stretching, because the tissues are inherently lax in EDS, stretching will further compromise their stability. The goal of treating muscle spasms is to normalize the output from the gamma motor neurons which results in facilitation of the muscle spindle, making the muscle much more reactive to stretching. Effective manipulation is that which results in resetting of the gamma gain, and therefore results in normalization of the movement characteristics of the joint and periarticular tissues. An excellent method of treatment for this condition is strain/counterstrain treatment, which gently positions the tissues in a shortened arc of movement for a period of time. The length of time (90 seconds to 5 minutes) allow the muscle spindle to underreport to the central nervous system long enough to allow the suprasegmental (CNS) influences to decrease, relaxing the muscle, and the gamma output. If a muscle has been “released” strengthening of these muscles in a neutral joint position will follow”.

Build-up of lactic acid is a perenial problem in chronic pain that I have talked about before. I have also been aware of this central nervous system involvement for some time, indeed I have tried to tackle it with techniques such as meditation and relaxation (I keep at it…hard when you are ADHD), via amino acids such as GABA (great for physical tension and I do use it a lot but the downside: this can add to fatigue and brain fog if used too often), l-theanine (relaxes mind but doesn’t seem to affect muscles), via improved sleep (the holly grail of chronic illness, easier said than done when in pain), CBD (seemed, to me, to have a downward sliding scale of effect and also got too expensive), via hormone therapy such as progesterone cream (downside being that in excess or after years of use, from experience, this can add to muscle laxity and complicate matters considerably), and via magnesium (which, even in hefty daily doses by supplement and topical application, has gained me only the most marginal amount of improvement). What this article proposes is that there are physical solutions to the problem though, clearly, what it refers to are manipulations at the hands of a therapist. I am also left wondering, can a version of these be adapted for self-administration at home, as would be far more useful when chronic pain due to spasm is a daily reality that can occur day or night, sometimes for extremely prolonged periods, and at will?

Take this week, for instance, I am in a LOT more muscle spasm that usual due, no doubt, to a combination of well-and-truly overdoing it on a bank holiday weekend spent visiting family, travelling long-distance and walking too much, plus a subtle (but then it doesn’t take much!) downturn in temperatures since we got home. In fact, every single limb rigth now is in severe pain, my joints are likewise inflammed, back pain is severe and my digestive system has all-but ground to a halt in some sort of muscular lockdown, as it is wont to do. Cold can vastly increase the likelihood of muscle spasm and is one of my most major triggers, making me intolerant of even the vaguest draught, especially at night in bed (a cause of much marital disagreement about the opening, or otherwise, of windows). A few days ago, I felt pretty much fine, was averagely mobile and getting on with things but not so this week; on the contrary and its the yo-yo nature of these conditions that can trip you up and get you down!

When in pain I tend to dissociate from my pain to cope with it, usually by hyperfocusing on some research or writing project, often from a “comfortable” position on the sofa. This, however, can cause me to hold parts of my body rigid and for prolonged periods without even noticing it, often sat in some highly unnatural position because of fixating on using a keyboard or ignoring that my knees, for instance, are hyperextended and in need of a bolster support beneath them, even if I am “just” lying there so-called taking it easy (because hyperextension is the very nemesis of EDS and is so easily done). In my case, unnoticed over-extension of joints (including when I am asleep if I don’t bolster myself appropriately) is a major cause of setting off the whole spiral of pain, and most of the time I don’t even realise I am doing it because it is so normal to me and didn’t used to cause me chronic pain in my younger years. Even when I stand boiling a kettle, I tend to arch my legs an all-important couple of millimetres too far against the natural joint, locking my legs into a subtle bow-shape that means pain later on.

Becoming more conscious of everything….standing posture, sitting or lying posture, how long I sustain a position, whether I am holding tension, or telling myself “just another minute or two…” (when really, you and I both know, I will still be there doing that thing an hour later if I am so engrossed) is so important. Noticing temperature…too hot as well as too cold…is also important as this has massive effect on the autonomic system, especially if my body is feeling more toxic than usual due to all the reasons above, constricting and preventing adequate blood and lymph flow…in fact, I often feel nigh-on poisoned during these chronic pain episodes, as though I have been exposed to something quite horrible when it is probably “just” a lack of appropriate circulation and waste removal that is making me thus, setting off unexplained stomach bloat and IBS and causing that burning tongue sensation that no amount of water ever seems to allay. Noticing, also, how cranial instability is so quick to join in means I will hopefully consider adequate support for my neck and upper back while I am doing whatever it is I am self-distracting with.

On these topics, no surprise the same article also mentions: “Other conditions which typically are found in patients who have Ehlers-Danlos syndrome include orthostatic intolerance, dysautonomia, Mast cell activation syndrome, tethered cord, Chiari malformation, cranial instability and those with vascular EDS arteriole or organ ruptures. Patients may also have allergies to tape, gastrointestinal issues such as IBS, food and drug allergies”. Yes to some of the above.

Blood pooling episodes, Reynaud’s in fingers and toes, inflammation joint pain, brain fog and clumsiness are also typical add-ons once this cycle of pain begins again. From the article:

“Patients with EDS also frequently have altered sensory awareness of where their joints are in space (proprioception), which further complicates the ability of the patient to protect themselves from injury. The muscles when functioning properly provide feedback through a small muscle fiber inside the muscle itself, called the muscle spindle (considered the primary proprioceptor). When the muscle is activated it is much more likely to provide this feedback. Joints are likely to be injured when they are in a non-neutral position, and especially when at an end range, such as when the knees are hyperextended. To the patient they may not notice their knees are locked up because of the sensory aberration, but their ligaments do. Ligaments which are loose typically will be inflamed by the overstretching resulting in pain.”

So what does it take to resolve all this? From the post in question “Patients with EDS require dynamic and static stability, strengthening in a neutral position for each articulation. We are going to ask the patient to contract the muscles gently and sustain the contraction for a period of time. Strengthening the muscle in a somewhat shortened range of muscle length will help establish the sensitivity and improved functioning of the sensory feedback system in the muscle”.

In a related article entitled Top-10 Positional-Release Therapy Techniques to Break the Chain of Pain, Part 1 (September 2006 Athletic Therapy Today) it describes how, in such techniques, “tissues are placed in a position of comfort for a brief period (90 sec) to resolve the associated dysfunction. PRT, in the shorten position, decreases gamma and alpha neuronal activities and resets the muscle spindle mechanism of the affected tissue, and thus helps improvement in vascular circulation and removal of the chemical mediators of inflammation” (Speicher et al., 2006;Al-shawabka et al., 2013;Singh et al., 2014). “Primary goal for the therapist is relive taut bands, trigger points and tender points for pain relief” and the “secondary goal is to reduce the rate of recurrence” (same source).

It seems the time may have come for me to seek some strain/counterstrain therapy, something I need to look into in my locale, especially as the winter season does its worse with me (though I am filled with trepidation as I have not had good track record with hands-on therapies so far). Those I have tried in the past have typically sought to address my “issues” with the classic sport-therapy approaches that are more about stretching, deep massage and brusk realignment manipulation (noooo!), so this takes finding a therapist that realises that, in many ways (as ever), I am quite diverse to the mainstream client and need the very opposite!

The cross-over of Fibromyalgia and Ehlers Danlos is common; I certainly have it (the one, I believe, feeds the other). So are these techniques also recommended for Fibromyalgia? Yes, they seem to be as there are resources all over the internet, including YouTube, for both EDS and Fibro.

In the meantime, I wonder what manoeuvres I can devise for myself, not dissimilar to some I already use (quite instinctively) involving twisting and counter-twisting my torso, hips or arm joints (for instance) on the yoga mat though perhaps making more effort to do these exercises throughout the day than I have been doing (and not just at the beginning of the day, when I first wake only to allow myself to languish in pain for hours afterwards). I also realise that going for a daily walk come what may is not only NOT the best approach on such days but could be quite literally the worse thing I could do…and that I need these periods of absolute respite to recover my nervous system, in the hope it will reset its instructions to my muscles!

In a sense, what I speak of here is a sort of counter strain of the mentality, that allows you to have some genuine time off, to reset and be comfortable in a very languid way, and this is NOT about being lazy!

Key to such techniques is that you are not seeking to stretch as such but to head towards what feels more comfortable as the desired outcome (which is why certain kinds of yoga, yin especially, can be the wrong thing to use, being all about the stretching). In fact, be wary of all stretching mentalities and much more focused upon the principle of straining just so much as you need to in order to prepare for the all-important counterstrain manoeuvre and then (more promptly than you may be used to doing) cease the strain completely, allowing the muscle to go soft, relaxed, at ease… remember, it should all be gentle, pleasant…and then hold that relaxed, supine feeling for the longer time out of the whole exercise as this is what is doing the magic, resetting the CNS.

One to be aware of is, once you have done this, hypermobility may seem more severe for a time but at least the muscle tension is down, the pain subsiding. Because I was in a lot of pain, I just did some of my self-informed strain/counterstrain exercises for 10 minutes on my yoga mat (there are no particular exercises to recommend as the body is often the best teacher, we just have to listen to it, do what it most wants us to do… remember when you were a kid and “just knew” how to stretch and relax on your bed?) They were incredibly effective, even my stomach has released, but now I feel like Bambi…I can hardly stand up so its off to the sofa for me. My heart is so uplifted, however, to discover tangible evidence that by doing no more than lying flat on a mat and moving limbs and torso as I feel called to (think of a cat stretching slowly for pure pleasure), however not sustaining or forcing the twist or tension so much as lingering in the relaxation and release that comes afterwards (that‘s the important bit), I can achieve so much in the way of pain relief!

Always paying attention, even when sitting watching TV, for example, or when being a passenger in a car, standing talking to someone in a doorway, whatever it is and no example of an activity too small to ask “am I comfortable right now, is this limb where it wants to be, is there an absence of tension” (and adjusting if not) can become a whole new way of being. Its a life choice that feeds into a better-feeling body, one where chronic pain is not so easily triggered in the first place because the CNS is not so easily provoked; that has to be the goal.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. This article does not constitute a recommendation or lifestyle advice. Opinions are my own based on personal experience. Any links and information shared are for your own assessement and research purposes, I have no affiliation with any of the attached information sources and share them as point of interest, with no recommendation implied. You should check all health-related supplement and other protocols with your medical doctor before proceeding. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet, your nutrients, your habits or anything else.