Posted by: christinelaennec | November 7, 2015

Cytokine fest: frozen shoulder and ME/CFS

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.

The bruises from last week's NAT treatment on my frozen shoulder. Read on if you want to know why I am paying someone to do this to me, and very grateful for it!

The bruises from last week’s NAT treatment on my frozen shoulder. Read on if you want to know why I am paying someone to do this to me, and am very grateful for it!

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.

 

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Responses

  1. Christine – I saw your recent mention of “frpzen shoulder.” A few months ago I saw a friend at P.T. ( I find that a good hard workout twice a week, heat before and ice after, helps my knees so much. Give me more strength and stability.) My friend told me she had a frozen shoulder- and mentioned it must run in the family because her brother had one and was not able to get over it. Later she said that she did not have the money to pay for it since her treatment was not covered by insurance, and she did not like the pain of treatment, I’m glad and you and your daughter are able to both pay and keep fighting. My insurance covers so much(if recommended by a doctor) over a period of time. So I just stop for a while until I am eligible again. Also, so I can catch up on my life. I will be thinking about you now as well as the daughter. Do you ever do heat or ice- is it recommended for you? Does the weather affect you – especially the cold? I am sure it might be painful for your daughter – my granddaughter (now 17) injured her arm and wrist in 2008 when she was 10. Natalie tripped during a soccer gamer, and a larger girl fell on her, twisting her arm. She had severe pain, it tuned out to be a soft tissue injury, for which she has had more medicines, treatment, etc. Missed much school which she has had to make up, plus a fair bit of social life. Cold weather seems to give the worst pain. Pain patch, Heating pad, and lots of warm clothes and covers, get in bed and read, if she can. These kids are not asking to let off “life” – my sister goes on and on about “it’s all in her head. they let her get by with it, using the arm as an excuse .” I am sure you have heard that. I’ll keep praying for your family – The Dafter, you, Tilly and Michael. If Miss Tilly is 15, she might need a few prayers. My girls , Jacquie and Lin -Lin who 15 and 14 usually do.

    Love, Linda

  2. The comparison is very interesting, Christine. While we may not know all the particulars about how to bring healing, it is encouraging and exciting and interesting to me to be living now when research is revealing so much. I am so glad that you and the Dafter continue to see progress in feeling better! It is raining today in Boring, so I am expecting that Mt. Hood is getting a thicker blanket of snow on it 🙂 xx

  3. This is very interesting to me. About 6 years ago, I was around 56 and came down with a severe sinus/cold infection and went through great emotional family issues at the same time. It left me with aching all over and after months of anti-inflammatories and pain meds, it finally started to subside. All testing for arthritis type illnesses were negative. No answers. I did much reading and found that emotional as well as bacterial illness can cause this. Your article has made it much clearer to me now. It took years to get better, and the weather and doing too much all affected me. Now, occasionally I still have leg and shoulder pain at night, but I am much better than I use to be. I just keep going, as you said the Dafter does. I know what that’s about. Heat helps sometimes too. I’ve found a herbal salve to rub on painful areas that helps also. I can understand what you and the Dafter are dealing with. Keeping you both in prayer,
    Hugs,
    Anne♥

  4. Christine,
    I continue to learn a lot from you and to appreciate your strength. Wishing you, the Dafter and Michael well.
    Timwa

  5. Votre article m’a beaucoup intéressée et j’espère de tout coeur que vous et votre fille alliez mieux. Comprendre, même un peu, aide toujours !

  6. Hi Christine, I too found your post very interesting. My daughter developed a form of panniculitis after having meningitis. It’s an ongoing treatment for her. I’m happy to hear your therapy is beginning to work and alleviate some of your pain. I wish you a continuing recovery. And please give The Dafter a hug from me. My best to you, Pat xx

  7. That is interesting. Sorry you have had such pain. x

  8. That was all very interesting, thank you for sharing the information. I’m delighted to hear that the pain is no longer keeping you off your sleep, and hope that by Christmas it will feel like a distant memory. The Dafter is doing a wonderful job of battling through the hard times, and I’m sure she feels it’s been worth it when she sees the progress she’s made through sheer determination. Here’s to continued improvements in health for both of you.

  9. Thank you everyone for your most interesting and thoughtful comments. I was reminded, reading some of your stories, of the discussion that followed Kate Davies’ blog post on the fifth anniversary of her stroke: http://katedaviesdesigns.com/2015/01/28/five-years-on-part-1/

    Linda, yes heat does help my shoulder a lot. My osteopath told me only to use ice if I was in so much pain that even with painkillers I couldn’t get to sleep. The Dafter’s pain isn’t helped by heat or cold. Her entire body thermostat has been very knocked by the ME/CFS and she has odd temperature fluctuations, including hot flushes. As for cold weather, I’m not too sure what the effect on my shoulder is. Perhaps I will find out this coming winter! So sorry to hear about your niece. I know that parents can often be disbelieving of children’s pain and fatigue when there is no recognised diagnosis. Perhaps this is because we can’t face the idea of our child being ill? Or as a society we don’t ever imagine a child being ill? I agree with you, children want to be part of life, not sitting at home ill. Lastly, Miss Tilly is just 10 years old, so not a *very* old lady yet! Thank you for your prayers. I’m sending good wishes to your family, including Jacquie and Lin-Lin!

    Gracie, yes indeed we are blessed to be alive in a time when so much is being discovered. Glad to know there may be more snow on the mountain! Take care.

    Anne, I’m sorry to hear about your painful experience. Heat helps my shoulder as well. I’m glad you’re better now, and I hope you will continue to heal up. Emotions are very powerful indeed. Thank you for your prayers.

    Timwa, lovely to hear from you. We were thinking of you just the other day, remembering playing with Lego on Christmas Day some years ago! Thank you for your kind words. I hear you are doing great things with your website. X

    Annie, oui, c’est vrai! Thank you very much for your healing thoughts.

    Pat, I’m sorry to hear about your daughter. I think we don’t realise how many people are left with health problems after something severe has been “cured”. The Dafter thanks you for the hug!

    Jill, thanks – you know so well what it’s like to battle on and not let the health problems get in the way of what you most want to do, if at all possible.

    Lorna, thank you very much. Indeed the Dafter has made good improvements, even with ups and downs and over quite a long time. She isn’t usually able to see that she has made improvements, because she is so focussed on what she wishes she could do. But that dissatisfaction and determination are valuable as well!

  10. I’m glad you are beginning to feel the benefits of your treatment. We mostly don’t really fully appreciate how intricate and clever our bodies are and there’s never a better time to fully appreciate full and good health than when we are in some kind of pain. My arthritis flare up also seems to be on the wane too so lets hope we all have a pain free Christmas to look forward to. 😀 x

    • How true those words are – it takes something going wrong for us to appreciate the miracle of good health. I’m really pleased your arthritis is getting better. Yes – let’s have a pain free Christmas, all of us!

  11. We are fearfully and wonderfully made. Medical science has come a long ways, but there is still so much that is a mystery.

  12. […] Unable to move for a while, I realised the dampness I could feel was a pool of blood under my head. It will recover quickly, but my left shoulder is very painful and I can’t lift that arm. This injury is going to be quite disabling for a long time, I suspect. Yes, Christine, now I really know a little of what you feel all the time. […]


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