I’ve mentioned a few times here that I’ve been dealing with a frozen shoulder. That in itself isn’t worth posting about, but in the course of the treatment I’ve been receiving from my osteopath, I have learned some interesting things about the process of the frozen shoulder that seem to be not unlike what happens with ME/CFS (Chronic Fatigue Syndrome), and I wanted to share them here in case they are of interest to you, too. I am neither a scientist nor a medic; the following are merely personal reflections, not an attempt to solve two medical mysteries.
In the spring, Columbia University released the results of an important study into ME/CFS. Comparing them to what my osteopath has explained to me (on her webpage here), I have noticed the following similarities:
- both ME/CFS and frozen shoulder are caused by the body having an over-the-top immune response to some kind of event. In both cases, the body floods itself (in the case of ME/CFS) or an area of the body (in the case of a frozen shoulder) with far too many cytokines. As I understand it, these molecules are helpful as an immune response when they are released in the right amount. But when the body overproduces them, havoc results.
- My upper arm began aching a year ago after getting a flu jab. My osteopath thinks the frozen shoulder may have been triggered, as this over-the-top immune response, by the flu jab. However, the frozen shoulder may also have been caused by hormonal shifts due to my age (now 55). Similarly, the Dafter fell ill over four years ago with both bacterial infections and viruses, and her ME/CFS followed, as is very often the case [edit: meaning, ME/CFS often follows viruses or bacterial infections, although it can also come on in other circumstances].
- In the case of a frozen shoulder, once the body begins this over-production of cytokines into the shoulder, nothing can halt the process. My osteopath calls the process a “cascade”. It can be sped up by the Neil-Asher Technique (NAT), but it cannot be stopped. It must run its course. This seems to be similar to the findings of the Columbia Study on ME/CFS: the overproduction of cytokines in the body typically begins to fall after about three years or so.
- One of the reasons I opted for the weekly NAT treatments is that my osteopath told me that in her experience sometimes people, whose frozen shoulder runs its course naturally, lose a degree of mobility. It struck me that I’ve heard that some people with ME/CFS never quite recover full health. (The phrase I hear is often, “She still has to be careful, but…”)
- In the case of frozen shoulder, the flooding of cytokines makes the muscles stick together, and causes great inflammation. This is very painful, as well as limiting in terms of movement. What happens to the muscles in the case of ME/CFS is not clearly understood, although a recent study showed a cellular difference in the leg muscles of ME/CFS sufferers compared with healthy sedentary people. It is, however, the case that pain is definitely a very common symptom of ME/CFS. I have mentioned elsewhere on the blog that the Dafter is in pain most days, to varying degrees.
- The bruises on my arm are caused by the osteopath trying to get the adhesions in the muscles (which run up to the neck and down to the wrist) to “unstick”. I was most intrigued when, during my most recent weekly session, as I was trying to breathe through the pain of the treatment (Faith whispering, “sorry, sorry”), I asked her, “Why does it help the inflammation to work into it so hard? Doesn’t that just make it worse?” She answered, “Yes – we have to make it worse initially, so that the body will send the enzymes and proteins to help. The body adapts to the ongoing inflammation so much that it thinks ‘this is the new normal’. We have to worsen the inflammation, so the nerves will send the signals, ‘something is wrong'”. Her explanation made me think about adaptation in the case of chronic illness. I said to her, “So this is like how my daughter fights through every day – it would be easy just to give up and go back to bed, but she gets up, gets dressed, goes to as much school as she can, all the while feeling hellish. In fact, what she’s doing is reminding the body that being ill isn’t ‘the new normal’.” Faith agreed with this comparison.
- [Edited to add:] Another similarity is that both frozen shoulder and (in my opinion) ME/CFS require pacing for recovery. My osteopath has reminded me each week to use the mobility I’ve gained after the treatment, but not push beyond it, or I could make my shoulder worse and go back a step in my healing. Similarly – and some will disagree with this – I believe that ME/CFS recovery requires stretching your limits, but not consistently going beyond them. In both cases, people usually experience steps back in their healing process.
There is so much we don’t know about the body/mind and healing. But, as painful as the frozen shoulder has been, it has helped me to feel I have a better understanding of the process my daughter is going through. After 9 weekly NAT treatments, I have much better mobility in my arm, am able to sleep through the night without the pain waking me up, and have cut back just a little bit on the anti-inflammatories. I will probably have to keep going until Christmas, so if my own little cytokine festival can be over by then, that will be a wonderful present.
In any case, I am very grateful that there’s a non-invasive treatment to help me. By June I couldn’t do much yoga (I haven’t been back, as I still can’t put weight down on my arm); by August I couldn’t hug the Dafter and was really struggling to drive well. I hate to think what state I would have been in if I weren’t lucky enough to access NAT treatment. The Columbia study on ME/CFS points to the possibility of perhaps someday being able to help those whose immune response sets off the “cytokine cascade”. I really pray that the suffering of people with ME will be alleviated sooner rather than later.
As I say, the above reflections are my own personal experiences, and I am not a scientist. But perhaps some of you may find them of interest. I would like to add that I’m not suggesting that everyone with a chronic illness should “just get up out of bed”. In the case of the Dafter, I feel strongly that the way forwards is to battle. But I know that, even in her case, the illness has the upper hand to a large extent, and is out of her control. What the medical field is beginning to understand about these two conditions is minute, compared to what is not understood.