The Ugly Truth about Looking for a Cure for Fibromyalgia and a Cure for ME/CFS that few dare to admit!

Cure, Remission, Recovery – Not Just a Play on Words!

There is much information out there on how to diagnose Fibromyalgia Syndrome (FMS) or Chronic Fatigue Syndrome (CFS) (also described as Myalgic Encephalomyelitis or ME).  And whilst a diagnosis can be elusive for many people suffering with this illness, there is certainly no doubt for them that they are ill, even if their doctors, family or friends don’t always share this certainty.

But there is little talk about how to identify if you have recovered from Fibromyalgia or ME/CFS.  Perhaps because so many people including doctors will simply make the assertion that recovery isn’t possible, a negative belief shared by many long-term sufferers of the illness. (admittedly, I was one of these!)

Well having recovered myself after 6 years of illness and having spoken to people that recovered after decades of illness, I no longer share this belief.  Of course, not everyone is easily convinced by hearing recovery stories, and with good reason!  Because,

Many so-called “Recoveries” are little more than symptom suppression and management!

People often hear the word recovery and quickly say

“There is no cure for ME/CFS and there is no cure for Fibromyalgia”

So what is a cure for fibromyalgia or ME/CFS?  What is remission or relapse?  And what is an accidental recovery as I describe it?

People will have different definitions and different views, so here are some definitions that Wikipedia currently offers:

A cure is the end of a medical condition; the substance or procedure that ends the medical condition, such as a medication, a surgical operation, a change in lifestyle, or even a philosophical mindset that helps end a person’s sufferings. It may also refer to the state of being healed, or cured.

A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.

So cure is an “end” of a medical condition which implies that there is no chance of the patient relapsing.

In my mind, the word cure also suggests a guaranteed positive result as well as a single treatment that works for all people. This is why I am not comfortable with this word for Fibromyalgia and Chronic Fatigue Syndrome or ME.

But when I think about, are there really ANY conditions that have a cure under that definition?  Cancer, heart disease, depression, MS, ALD, AIDS, Diabetes, the list is nearly endless.  None came to mind for me, so perhaps the word cure is a misnomer.  Even for simpler things that such as bacterial infections where effective antibiotics exist – does it guarantee that the infection will not come back or that re-infection will not occur again?

So given that nobody knows of a “cure for Fibromyalgia and Chronic Fatigue Syndrome” that works the same for everyone, perhaps the words remission is more appropriate.  However, the word ‘temporary’ in the definition is obviously very negative and not necessarily correct.  Because of course there is no guarantee that a relapse will occur, so how can we call it temporary?

My preference is for the word recovery.

So what do I mean by recovery?  A recovery is a restoration of health or functioning according to Wikipedia.  So we are talking about being asymptomatic – sounds pretty good right?  Better than cure in fact because even if you are ‘cured’, doesn’t mean that you have a restoration of your health.

And a recovery can be full or partial.

But how do you measure it?

In the end, no matter what you say, it is going to be somewhat subjective.  And in that lies the power of the sceptic.

Don’t get me wrong, I have no problems with sceptics.  I am sceptical myself, pathologically so in my later years of suffering with ME/CFS and Fibromyalgia.  Frankly, I think it is perfectly reasonable to be sceptical and I think most of us who have had the illness have earned that right through countless trials and tribulations.  But the questions is; Does this scepticism serve us?

I think it depends on how far we take it.  Given that there are way too many claims of treatments or explanations for our symptoms that frankly either lead nowhere, or provide temporary covering up of symptoms only, a healthy dose of scepticism makes sense.  And anyone who has gone through what seems like a never-ending bleeding wallet for tests, treatments and empty promises, all whilst having a very limited income due to their inability to work, has to find some way of dealing with things.

But it can go too far.  Way too far!  And when people make a full recovery and people say that they hence never had the illness or had something else, that is too far in my view.  There is no scientific basis for such claims.

I think most of us find it offensive that given that we have to ‘prove’ our invisible illness with the medical community for so many decades and have been labelled as depressed or hypochondriacs, that finally now when people at least recognise it as a real physical illness, that some within our own ranks would stoop to accusing each other of never having had the illness, just because they got well again.

But I do agree that people often haven’t actually recovered when they claim they have!

SO WHAT IS RECOVERY FROM FIBROMYALGIA/ME/CFS?

In previous blogs, I have summarised some the main symptoms of ME/CFS/FMS.  Some people have lots of various symptoms and some people have few.  Clearly many of us find it to be an ever-increasing list over the years and we often see how Fibromyalgia pain and Multiple Chemical Sensitivities get added to the collection of symptoms of ME/CFS.

But if you cover up your symptoms using a range of medications, hormones and supplements that reduces your symptoms to something resembling normal – is that recovery?

Not in my mind.

For instance, let’s look at obesity.  Regardless of whether you agree with the American Medical Association classifying it as a disease, is dressing in a corset covered my flowing black clothing which all makes you look slimmer a cure or a recovery.  Clearly not!

I have come across people who tell me they are recovered and rattle of 20 supplements, regular IV infusions, hormone treatment and so on and then say that they can function fairly normally again.  That is not a recovery, that is a chemistry experiment!

Or some people manage to reduce their symptoms by severely limiting their physical and mental activity.  They avoid all stress, eat the “perfect diet” and stay strictly inside a very limited physical activity envelope.  In fact many people do this over the years to manage their symptoms and limit the severe fibro flares or bouts of symptom exacerbation.  Does anyone see this as recovery?  Some people do, but not I.

To me, a recovery means that your body’s function is restored to allow it to cope with the normal activities associated with full-time work and an active lifestyle that includes doing social activities and exercise, as well as eating a normal diet (normal not meaning good!)

But being symptom free whilst maintaining a reasonable diet and reasonable lifestyle (you know, work rest and play) with a few supplements, surely can still be seen as a recovery.  The question is about how much support and diet restriction exists and how much stress management or lifestyle limitation exists.  But trying to quantify that is difficult and agree on an exact formula may be difficult.

Yet I would hope that we can all agree that getting your life back, being able to be symptom free and able to work full-time, enjoy all the normal social activities and reasonable exercise (perhaps not ultra-marathon running) all without relying on any medication has to be seen as worthwhile.  Surely, regardless of whether we term it partial or full recovery, THAT has to be seen as FANTASTIC, right?

I wonder if sometimes we lose perspective of things when we have suffered with the illness for too long?

I remember when I recovered it became pretty clear that I stopped getting the bouts and my symptoms had reduced to a point where I thought they were gone.  But whilst pain, fever, insomnia, gut dysfunction, brain fog and so many other symptoms are clearly identifiable, others are more difficult to quantify.

The two that come to mind are general malaise and energy.  Even a year after I had fully recovered, I noticed that I felt more energetic and that my health felt more robust than before.  So did I just become fully recovered now, or was I fully recovered 12 months earlier?

My view is that we just don’t have a reference of what is normal after so many years of illness.  Besides that ‘normal’ for many people is far from being vibrantly healthy.  When I came out of my ‘lost decade’, I suddenly was 10 years older, severely deconditioned with severe muscle loss and no cardio vascular fitness.  What was I comparing to, the old self?

But then you keep wondering, how much better can it get.  Well, average Joe next door that never had the illness could be asking the same question!  What is their health like?  Could they have more energy?  Could they have a stronger immune system?  Probably yes.  But because they have been symptom free, they don’t constantly consider this and scrutinise this.  In fact, let’s face it, most of us were that average Joe (or Jane) before we got ill.

So whilst a one-fit-all single treatment magic “cure” for ME/CFS  and Fibromyalgia may not be available now or ever, I can say that recovery is definitely possible.  Regardless of what some people say, if you look at the symptoms and experience of many people that are bold enough to claim recovery, you can clearly see that they really had ME/CFS/Fibromyalgia.  But for some people, clearly no matter what is put before them, they will remain sceptical.  It may feel like a safer place, oversceptical attitudes are a road to nowhere.

And whilst many people experience what I would call an accidental recovery (a recovery where they don’t know WHY they recovered), I believe that those that recover understanding WHY they got ill and WHY they recovered have a much stronger chance of never relapsing from their “remission”, as long as they continue to value and treasure their health and live a normal healthy lifestyle full with all the experiences that life has to offer.

In my mind recovery of health has to be about your body functioning well and giving you access to the experience of good health without being reliant on external powerful drugs or severe lifestyle restrictions.  The ugly truth is that getting hung up on whether there is a cure for fibromyaliga or ME/CFS, or wether there isn’t, or whether recovery is possible or not, could waste years of your life needlessly.  My message to everyone is to just focus on getting your health back.

Fibro MECFS Silver Bullet Just Ahead

 

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17 Comments on "The Ugly Truth about Looking for a Cure for Fibromyalgia and a Cure for ME/CFS that few dare to admit!"

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Heathenlady
Guest
I’m definitely in recovery. I also don’t resonate with the word ‘cure’ as it does infer something which isn’t a process but a ‘quick fix’ like taking a pill, and we all know that’s not how it works with this illness as you’ve quite rightly pointed out. I also have 3rd stage chronic Lyme Disease, which I contracted in 2004, but wasn’t diagnosed til 2008 after becoming bedridden with ‘severe m.e’ (my official NHS diagnosis) in 2006. It’s complicated because I do have both conditions and I had been suffering from the former in mild to moderate form for most… Read more »
Dan
Guest

Thanks for the fantastic comment.

I have learned that having a positive attitude is key to recovery, and you seem to have that in droves. To be honest, I expect I would have had success much sooner if I could have managed to be more like you!

Wishing you all the best with your ongoing recovery! 🙂

Fiona
Guest
I think whatever level of recovery you are at, it’s important to be realistic about capabilities, so you don’t set yourself back. With this illness, I think it’s easy to find ourselves in an in between situation opp on, so much better than before, in terms of commitments, cognitive activity. But realistically I see there’s a huge difference from being fit for full time work, and managing well at home. It may be easy for somebody to think they can do full time, then find its a big mistake. So many people can’t socialise as well as work, spend the… Read more »
Dan
Guest

Thanks for your thoughts Fiona

Hilary
Guest
I hope that my story might be helpful in the context of cure /recovery . I have had CFS for 25 years and developed Fibro five years ago. When I was initially diagnosed with CFS I had a year off work. I was also a single parent at this time, and for the next five years or so I had recurrent relapses of varying degrees of severity. I was lucky in that as an academic the work that I did was not tied always to my place of work, and that I could be flexible to some extent in terms… Read more »
Dan
Guest

thank you for your comment Hilary. 🙂

Robert Klauka
Guest
I’m 64 and a man who, after many years of searching, finally realized I am a victim of Fibro. As I’ve gotten older, I’ve come to realize that I’ve always had background pain. But, I suppose it’s a survival mechanism to push it into the background and keep going. It wasn’t until I was 60 or so that I realized I had a “woman’s” affliction. No, I’m not a sexist. I finally found a doctor who would help me and diagnosed my problem. I’m surprised at how many doctors don’t or won’t admit that Fibro exists. I’ve been taking Vicodin… Read more »
Simone
Guest
Hi Dan, I think that your analysis of the problems with ‘cure’ is very accurate. For most things there is no ultimate ‘cure’, meanwhile so many people are hanging onto hope for something that might not ever arrive and rejecting out of hand anything that doesn’t look like a cure in a one-shot pill/injection/surgical (i.e. traditional high-tech medicine) form. And I think that its very sad that people are so threatened by others’ recoverys that they feel the need to deny their experience (which I have myself experienced. It means that as soon as people get better they may turn… Read more »
Kath Turner
Guest

Im a great believer in mind over matter. But sometimes when pain is so bad it hits you like a ton of bricks. I feel really positive about starting recovery. I have trigger point injections every three months and want to reduce this to every six months then no more. I am at the moment using the stretching to excercise keep your fingers crossed you have all made me see I am right I will recover thanks love positive people

Jen
Guest
About 5 years into the ME I decided to say “I’m recovering from ME” rather than “suffering with”. I think psychologically I needed to boost my morale! About a year ago I got help from the Optimum Health Clinic and realised that the NHS had been giving me the wrong advice for 14 years. The NHS basically would say, ignore your symptoms, push through, increase activity, it’s imaginary, you’re having ‘incorrect thoughts’. I did my best, not realising it was the worst thing for me. Blindly pushing through because I felt guilty is the reason I kept relapsing. Now I… Read more »
Dan
Guest
Thanks for your excellent comment Jen. “ignore your symptoms, push through, increase activity, it’s imaginary, you’re having ‘incorrect thoughts'” REALLY? I mean; REALLY? Seriously, it seems crazy that we are still having to have this discussion about the illness being imaginary. I am growing so tired of these ridiculous notions – and I am recovered – I can’t imagine how annoying you must find this. I can’t really say it any other way; sugggesting the symtpoms are imaginary is nothing but downright stupid. It’s not ignorant, it’s just silly. Sorry you still have to put up with this sort of… Read more »
Dan Gmaj
Guest
Jen’s comment and Dan’s reply! Nice One 🙂 The NHS (or rather those that assemble normal proceedure for treatment) are unforgivably dragging their feet on this area when it is clear that the knowhow to deal with the condition is already far advanced from cbt, get, and pacing alone! The nhs has an opportunity to lead in this area that would trickle down arround the world like soft summer rain. Sadly, we plebs no more deserve that than we derserve to be guided by honest , unselfish politicians! Dan, you never cease to amaze me with your informed writing on… Read more »
Dan
Guest

Hi Dan – great to hear about your progress – make sure you keep going! The key to effecting neural plasticity is a consistent approach until you effect the desired changes! 🙂 Dan

Layla Morgan Wilde
Guest

As I chronicle my healing journey with words and insightful images at Boomer Muse, I’m struck but the confusing array of labels and terms. My message: we are not our illness or letters, CFS, ME etc. I refuse to let an illness define me and focus on wellness instead. If you’d like to partner with me to share my motivational photo quotes, let me know.

Dan
Guest

Hi Layla,
Of course we are not our illness and commend you on focussing on wellness!
Thanks for your comment.
Dan

Jen
Guest

enjoying your videos and info – thanks !

Dan
Guest

Good to hear Jen – thanks for the feedback!

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