Published on March 1, 2020 by Dan Neuffer
Last updated on March 4, 2020 by Dan Neuffer

10 comments

What is recovery from fibromyalgia, ME/CFS, POTS or related syndromes?

Video Transcript

Recovery from Fibromyalgia…recovery from ME/CFS or recovery from Chronic Fatigue Syndrome, POTS or Multiple Chemical Sensitivities.

What does that mean? Is it really possible?

There are no cures for these illnesses, right?  So what are people talking about?

I will answer this question and why this may be the most important question of all if you are suffering with one of these conditions.

In the face of no single panacea cure for these conditions, this idea of recovery from fibromyalgia or one of these conditions can be a bit of a shock.  This is especially the case if we have been ill for a long a time and tried a lot of treatments.

So let’s start with a definition of the word recovery.  A recovery is a restoration of health or functioning and can be either partial or full.  So it is not the same as what people think of as a cure.

For example, somebody could be cured of cancer, but it doesn’t mean their health or functioning is restored.  So tests may show that the underlying disease process of cancer is gone, but in fact the patient is still very ill and not functioning, especially if they used a very aggressive treatments or have been ill a long time.

So the patient in that instance would still require time to recover from the treatment and from the disease, even though the underlying disease is gone.

But how can you recover from fibromyalgia if the underlying disease process cannot be stopped or cured? 

Well, first of all, just because there isn’t a one fits all cure, doesn’t mean that people cannot have the underlying disease process resolved.  In fact, there are many such people – so more about that in a moment.

But regardless of whether the underlying process that causes the condition ceases, a recovery of health is clearly possible.  In fact, chances are that you have already experienced this, if you have been ill for some time.

This is what people call a partial recovery.  A combination of lifestyle changes and treatments can allow people to function better over time and they can be described as having reached a partial recovery.  Makes sense right?  Hopefully you have found some such strategies yourself over time and experienced an improvement in your condition – a partial recovery.

But what is a full recovery from fibromyalgia, ME/CFS – Chronic Fatigue Syndrome, POTS or other such conditions?

Well, let’s first of all recognize that people use words and definitions differently – so what that means to different people is clearly going to be different.

However, a reasonable place to start is recognising that we are talking about a full return of functioning, so for most people, that means a 90-100% reduction in symptoms and a 90-100% ability to engage in the daily activities of living, in things like work and sports and other fund activities.

One of the key characteristics of this group of illnesses is that when people engage in too much activity, physical, mental or emotional – their symptoms flare up.

So in my view, that’s a key feature of whether someone is experiencing a partial or full recovery.  It’s not just how much their symptoms are reduced, but whether they can again engage in life without a worsening of their health, without a flare up of symptoms.

But what about if someone is still using some treatments or strategies to maintain their recovery?  What if without those, the symptoms return?

Well, now it gets even more complicated right?

Now I generally don’t like using the word ‘cure’, because it conjures up all kinds of ideas and thoughts in people that are perhaps a little misguided about how a restoration of health happens in the real world, from any condition or disease.

But I think it’s fair to say that someone who cannot fully engage in life or who relies on treatments to do, so isn’t cured per se.

So the question is, can people who have severe or long-term illness with Fibromyalgia, ME/CFS, POTS, Multiple Chemical Sensitivities or related conditions, can they really get their full health back?  Can they achieve a FULL recovery WITHOUT any ongoing medications or any major lifestyle restrictions?

The answer is yes.  Absolutely they can.  In fact, I have been sharing stories of people who have done just that for many years now. And you will find that they get there in many different ways.

I encourage you to listen to those stories to look for common themes in how these recoveries occurred, but be mindful not to look for that single magic cure, even if that’s how people describe their treatment or their approach that was successful for them.  Recovery requires a personalized approach, so learn from others’ experience, but tailor your approach.

So why is this question of ‘what is recovery from fibromyalgia, ME/CFS and POTS’, why is that the most important question?

Quite simply, because this myth that recovery isn’t possible would likely stop you from even trying.  In my experience from talking with hundreds of people that have recovered, I have found that people virtually never recovered spontaneously.   Their recovery is usually always a combination of multiple actions and treatments.

So…. What do you think?

Recovery, cure, remission – partial, full or near full recovery …what do these things mean to you?  Does it matter?  I look forward to hearing what you think!

So what are your thoughts about the questions I pose in this video?

Please leave your comment below or on YouTube here.


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Sarah

Hi Dan, interesting listen. I had been having doubts about what full recovery means – whether in just means an improvement to a certain level, ongoing strategies to manage symptoms etc rather than really a full recovery. It is encouraging to hear that what I was concerned is deemed a full recovery is in your eyes a partial recovery and that a real
‘full’ recovery is possible. Thanks for the post.

Cathy Morgan

Thanks for the video which was a good explanation of the difference between a partial recovery, full recovery and cure. I have used the word remission in my recovery as I have spoken to several people with ME/CFS that have “recovered”, gone back to work and resumed their life only to be hit with the return of all symptoms shortly afterward. For myself , my symptoms of ME/CFS have abated significantly and I can work a few hours and drive a car, shop and do social activities. But if I overdue it then the following day my symptoms of brain… Read more »

Heather

Listening to Dan always boosts my motivation and believe that 100% recovery is possible . Thanks for the video .. I am starting the day with renewed determination and positivity.

Barbara D.

Hi Dan. I chuckled to myself when you mentioned something about spontaneous recovery because I have been ill for just over 20 years now and it was only maybe a year ago that, upon waking, I finally gave up on the idea it was going to happen to me. Every morning I awoke with the same thought ‘Am I cured? Did it the illness vanish into thin air’?????!!! Anyway, I am looking forward to full recovery and thank you so much for your continued, dedication, inspiration and encouragement. I look forward to seeing more recovery interviews as they come on… Read more »

Isabel

Hi Dan, Full recovery is possible – but is it possible for everyone? The OHC has shifted its thinking on this over the years. Not to say that it isn’t something to aim for, but for myself I’ve found that failing to reach it has led me to dismiss the progress I’ve made and its value, as well as making the approach I’m using and/or me a failure. I’ve found it more helpful to focus – as you suggest elsewhere – on building on incremental gains rather than always aspiring to some all-or-nothing goal. Hope that makes sense!

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