December 5, 2015 - CFS Unravelled

When we first get sick with ME/CFS or Fibromyalgia, we often get bombarded with a million and one treatment options and all kinds of explanations or reasons for our symptoms. You have candida, treat candida. You have adrenal fatigue, treat adrenal fatigue. You have low thyroid function, treat that. The list is almost endless, right?Then later, once we get diagnosed with Fibromyalgia Syndrome or Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (or SEID or CFIDS or PVFS or MCS or EMHS) we are often told that there are no effective fibromyalgia treatments or ME/CFS treatments at all. Or perhaps we are told to treat every observed symptom and dysfunction, which often eventually leads us to frustration and treatment exhaustion (like we are not exhausted enough already!), where we simply don’t want to try anything given our experience of not recovering.Pin MeMy own experience of going down this road with years of ME/CFS & Fibromyalgia is similar to most people I have spoken to. Most of us first experience confusion and uncertainty, desperately trying to work out what is wrong. Eventually we get a diagnosis, but whilst that may give us some validation (I told you I was not making it all up!!!), we often just end up feeling more hopeless when we are given the prognosis for Fibromyalgia/ME/CFS recovery.And so, having tried ‘everything’ we can, and being told there is really no chance of recovering from the illness because there is no cure, we often decide to simply live with the symptoms as best as we can. We learn to avoid all the things that flare our symptoms up and to simply cope as best as we can. And that’s where many of us stay stuck.But when things get worse with our health (I learned that thinking things can’t get any worse is never true), we get that nudge to ask for answers again. Not because it makes sense to do so, but because we are driven by our desperation and struggle to cope with Fibromyalgia and ME/CFS symptoms.Not everyone’s journey is like that, but I see something along those lines with so many people that have recovered from ME/CFS or Fibromyalgia Syndrome.Those that learn about the dynamics and the pathogenesis of ME/CFS & Fibromyalgia Syndrome will then come to a point where they see a number of paths before them as they decide on making yet another push for recovery.Whilst ME/CFS has been classified by the World Health Organisation as a nervous system disorder, and whilst Fibromyalgia pain is recognised as being chiefly an issue of brain sensitisation, for most people that doesn’t translate into knowing what is going on or knowing what they can do to recover.But those that have read my book CFS Unravelled, or have come across other explanations that identify dysautonomia (the Autonomic Nervous System dysfunction I refer to) as the central dysfunction driving all the secondary dysfunctions and symptoms, will inevitably consider a mind/body program. Not just because such programs also identify such a dysfunction (often described as an out of control fight or flight response), but because they have probably come across lots of people who have recovered with such approaches.The question is what therapy or program to enrol in? Is it Gupta Amygdala Retraining, The Lightning Process, Dynamic Neural Retraining, Reverse Therapy, Mickel Therapy, or some CBT program (with what premise and treatment focus)?It’s not easy to choose, because whilst you might discover lots of people that have recovered using these programs, inevitably, if you dig a little deeper you will also find plenty of people who tried these programs and DIDN’T recover. So how do you know if it will work for you or which one to go with?You might even ask yourself:Can a mind/body program ALONE really ensure I recover from ME/CFS/Fibromyalgia?Well, the fact is you can really only answer that question after you have tried it. What you can know is that these programs on their own really help SOME people make a full recovery.However, in my experience, it is often a combination of things that leads to recovery success, for reasons that I have outlined in CFS Unravelled. In fact, you will often recognise how many people who have recovered using mind/body strategies and programs, actually used other ME/CFS & Fibromyalgia treatments at the same time!The reason they have found these helpful is that there are numerous secondary dysfunctions that not only trigger the nervous system, but that actually perpetuate in their own right. Now most mind/body programs will tell you that once the nervous system function normalises, that these problems resolve on their own. And this makes sense given that most problems are directly or indirectly caused by the nervous system & the resulting immune dysfunction.And whilst I agree with this viewpoint to a large extent, my view is that the nervous system often won’t normalise unless some of the most severe physical dysfunctions and triggers are ALSO addressed. And so we don’t just have to look at psychological triggers (most people recognise that when they feel stressed, their symptoms worsen), but also the physical AND neurological triggers. And of course one of the biggest neurological triggers for people here is PAIN!Will the mind/body program help with pain?Pain in fibromyalgia and ME/CFS is largely due to a process known as sensitisation. I say largely, because whilst central sensitisation is usually identified as the key problem (which is why treating fibromyalgia pain with opioids doesn’t tend to work), there are of course some inflammatory issues associated with the immune dysfunction and a range of other issues.Nonetheless, research has clearly shown that central sensitisation is the main factor and functional MRI scans clearly show how our brains light up excessively during pain stimulation. Whilst our pain may be particularly bad during flare-ups, the point is that pain itself is a nervous system trigger.So even if you can see that various mind/body strategies might be helpful for recovery, if they don’t specifically address pain, you might wonder if that leave a big gap in your Fibromyalgia treatment or ME/CFS treatment plan? In my view; Yes!Even though some people recover without specific brain training on pain desensitisation, in my view, if pain is an issue it makes sense to include this as part of your recovery program.Is there a better solution than mind/body programs alone?The best way to answer that question, is again in hindsight. If something less complicated or easier works, great. Why would you bother with anything else, right?But those that only had limited success, or worse, no success at all, clearly need something else, or should I say, something MORE!The problem with these failed attempts, like all failed attempts (including other physical strategies and treatments), is that the result is often used to judge the strategy. And when it doesn’t work, it is frowned upon and discarded.What many of us don’t realise is that chances are that the strategies or treatments probably helped, they just didn’t work ENOUGH in their isolation to tip your nervous system back into normal function.That is why I have always advocated a MULT-LATERAL treatment approach for Fibromyalgia Syndrome and ME/CFS, and why I explained the importance of this and reasoning behind it in CFS Unravelled (Addendum Feb 16: "and also in my online recovery program for ME/CFS/Fibromyalgia; ANS REWIRE")Any strategy or treatment requires resources, both financial and other (including our efforts and energy, which also is a sparse resource much of the time). That’s why I always encourage people to line up all their ducks in a row!So rather than just focussing on one strategy, use all of them at the same time. Yes, brain training certainly makes sense to be part of the solution, but if you have been diagnosed with fibromyalgia or experience a lot of pain, you really ought to ensure that pain desensitisation is part of your overall action plan.And of course, you need to continue to follow the advice of your Doctor, especially on managing any medications you are using. But it also makes sense to seek treatments to accelerate physical healing and to address the physical dysfunctions which will take the pressure off your nervous system. Of course, we need to ensure that this doesn’t interfere with your core brain training program. That’s why education and a deeper understanding of the dynamics is key.Areas of treatment might include treatments for the severe fatigue in ME/CFS/Fibromyalgia due to our poor cellular metabolism. Treatments to reduce inflammation. Treatments to deal with gut issues as well as treatments for infections and to improve detoxification as well as others. And understanding how diet and certain lifestyle factors tie into both the root and secondary dysfunctions and symptoms is also important.Other physical strategies such as physical activity and movement can also be very helpful as long as they don’t trigger flare ups. Unfortunately the benefits are often crushed by the detrimental effects – but does it have to be that way? Of course not. The key is in understanding how and why flare ups are triggered by exercise and in personalising your approach.Are all these ME/CFS/Fibromyalgia Treatments too complicated & how do I choose?Well, perhaps sometimes it feels that way. In the end, if a simple single focussed approach works for you, then that’s clearly the best solution for you.But in my view, it makes sense to understand the dynamics and maximise your probability of recovery from Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome. Which is why my own recovery program ANS REWIRE focusses on education and coaching, brain training, physical strategies, pain desensitisation and guidance on some important additional physical treatments.It probably reflects the severity and length of my own illness and the deep level of dysfunction that this created in me. Having studied well over a hundred recoveries now in some detail, I see the vast majority of people use multiple and tailored strategies to recover. I have also seen the importance of being surrounded by the right support people. The right coach to guide you, the right doctor to advise and treat you and of course the right people to encourage and uplift you in those moments when we have set-backs.But in the end, it’s not about what is the ‘best’ program or treatment or strategy for ME/CFS/Fibromyalgia recovery, it’s about what is the best for YOU!And inevitably, only YOU can judge what most resonates with you and who you can work best with. So ensure that you not just choose the RIGHT program, strategy, coach, doctor and treatments, but that these resonate with you, that they feel right for you, and that you make sure you follow through with them until you reach recovery.So when creating your ME/CFS/Fibromyalgia treatment recovery plan, remember to go with your gut instinct and never limit your options!

Choosing the Right Fibromyalgia Treatments or ME/CFS Treatments for your Recovery Action Plan