2 Explosive Realisations About the Suffering with MECFS and Fibromyalgia

The pain was suddenly so severe, that I screamed, “Call an ambulance!” I was writhing in agony. What happened next was an explosive realisation – more about that in a moment.

But first, let me tell you, that after around 7 years of illness, I have been recovered for several years now. So long, that it is starting to truly feel like a thing of the past and the rawness of the experience, the suffering with Fibromyalgia and ME/CFS has somewhat worn off. In fact, I had to look up the dates to realise that it is 4 years now that I have been recovered.

We often feel frustrated that others don’t realise the depth of our suffering with ME/CFS and Fibromyalgia. In fact, many people get so stuck in this frustration that they never move beyond this towards recovery.

But if you still have this illness, then what might surprise you, is that NOT EVEN YOU realise how bad the suffering with Fibro, the suffering with ME/CFS REALLY is. I have seen people become very emotional as they recover and finally realise the depth of the suffering they experienced during their years of illness. I myself experienced this.

In fact I distinctly remember going to a theme park with my wife and children when I had recovered, when I suddenly remembered my previous visit during my years of illness.

The memories of how I dragged myself around the park, constantly looking for respite came flooding back. I remember suddenly feeling very emotional, finally realising how I had gritted through the symptoms and tried to put on a brave face all those years. I finally realised just HOW DIFFICULT IT WAS, because I now saw how easy it was for a well person. I kind of felt sorry for “that guy”, even though that guy had once been me.

When we are sick for a long time, we lose perspective. What we describe as ‘feeling OK’, a well person would describe as ‘feeling terrible’. But it isn’t just the depth of the suffering, which only truly becomes apparent as we regain a healthy reference point and perspective again. It is also the awful frustration of having little ‘proof’ of our suffering with ME/CFS and Fibromyalgia and constantly feeling like we have to prove it to others.

A recent experience reminded me of this!

It was the end of the working week, and I was back at my desk writing the recovery program, when suddenly a severe pain pulsed into my ear. I had finally gone to the Doctor that morning as I had been feeling dizzy the last few days, and the Doctor had prescribed some anti-biotics for an ear infection.

“Hmm, finally a bit of pain, no matter, glad I went to the Doctor this morning” I thought.

But suddenly the pain became severe. I went in the living room to find my wife with our kids and their little friends, and told her of my ear when suddenly there was a loud scream.

I was shocked to realise it was me!

“Oh – sorry. It really feels a bit severe”. I felt sheepish and retreated away from the kids into the bedroom with my wife following.

But moments later the pain grabbed me again and I called out again, more muffled this time as I was ready for it, or so I thought. My wife looked at me with concern and I said “something is wrong, it hurts like crazy”.

She picked up the phone to call the after-hours nurse and went through a series of questions that she tried to relay to me. But I found myself unable to answer as I was writhing in pain. Writhing – I didn’t realise people really do that. Then, suddenly I started to scream uncontrollably. Even though I had thought my pain had maxed out at level 10, IT NOW GOT MUCH WORSE!

How was this possible? This was a new experience altogether.

“Call an ambulance” I called out as I screamed uncontrollably in pain when suddenly my ear started to make popping noises.

My wife looked at me as I became silent. The pain had subsided to about a 5. As I took my hand away from ear, my wife startled as she looked at my shaking hand – it was covered in blood!

The emotion I felt next is so STUPENDOUSLY BIZARRE, that I had to share it with you! I felt a kind of happy satisfaction. I felt like saying “see, I am not making it up or exaggerating”.

There it was, part of me STILL felt the hangover from all those years where everyone looks at you like a malingerer, not believing the extent of your symptoms and suffering. Like you are being some sort of weakling exaggerating your symptoms or being a hypochondriac.

The injustice of being judged like that for so many years, the frustration of never having PROOF how bad the illness was, it was all still part of me despite the years of being well.

That was my first insight.

The second wasn’t anything new to me, but I think it helps you put things into perspective. During the coming 7 days, my pain stayed very high, up to an 8 or 9 at times, despite my second different course of antibiotics. Nights were the worst, and despite the fact that I was maxing out my daily dosage of pain killers including Panadol, Codeine and Ibuprofen, I was still in too much pain to get any sleep.

I admit, the bursting of my eardrum that first day left me shaken, slightly traumatised. The specialist told me that the pain is comparable to child birth in severity even if it doesn’t last as long. He said that over the years, he has had many grown men writhing (there is that word again) and crying on the bed in his practice.

I had only experienced such ACUTE pain when I had appendicitis as a child, but still, compared to ME/CFS and Fibromyalgia – THIS WAS ALL A WALK IN THE PARK!

Now, I am not being cavalier here, I really mean it; this experience was nothing compared to when I was suffering with ME/CFS and Fibromyalgia, even though the severity of the pain was higher.

So Why Is ME/CFS and Fibromyalgia Much Worse?

Simply because with the ear pain, I knew there was an end in sight. With ME/CFS and Fibromyalgia it always felt like there was NO end in sight. Sure, you realised that the current flare up was likely to subside again soon, but even the milder symptoms in between severe flare-ups became unbearable – BECAUSE – I just felt they would NEVER end.

No matter how bad the suffering is, if you know that there is an end to it, you can always find some way to take it in your stride.

That’s why in my book Discover Hope I talk about recognising that things always change over time. Why I share the recovery stories to help people realise that recovery is possible. But of course, we don’t really think it’s possible for ourselves. Or at least we don’t until we get a deeper insight into what is going on and start to make progress as things gradually improve.

When I speak with people about their recovery, the biggest relief for them is usually when they start to see an end in sight for their illness. So if you can find a way to change your outlook about your symptoms, then you too can reduce the suffering with Fibromyalgia and ME/CFS. Hopefully, hearing recovery stories about people sick for more than a decade and recovered since then for even longer will give you some hope for better possibilities.

Share the Hope!
August 11, 2014

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24 Comments on "2 Explosive Realisations About the Suffering with MECFS and Fibromyalgia"

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Darbi
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Dan, great blogging. Yes it’s true. Pain can be amorphous, and sometimes ephemeral. It’s difficult to qualify and quantify. There have been recent articles about the idea that some with Fibromyalgia “catastrophize” pain. While in my practice as an RN, I have known people with the personality type that tends to catastrophize, this is not common. I do not believe it is common in those with Fibromyalgia, either. As you say, pain without an end in sight cannot be compared to acute pain. From the recent reports coming out of Fibromyalgia research, your hypothesis about nervous system dysregulation is being… Read more »
Dan
Guest
Hi Darbi, thanks for your comment and the kudos! 🙂 By understanding the way pain works in the brain we can normalise our experience and downregulate pain. This can occur with all people experiencing pain, but in fibromyalgia and ME/CFS, this is particular effective given the dysfunction. The comments about the ‘catastrophising’ of pain are relevant, although for most this happens on a subsconscious level. Whether you subscribe to the term of catastrophising or not probably depends on how you view it. But clearly, the pain experienced in this illness is much greater than it needs to be and can… Read more »
Ellen Steens
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Hi Dan: I’m following u on twitter, which I haven’t mastered yet. I am an MS sufferer. It is wonderful that u are helping people understand the suffering of us with chronic pain. I have already learned 2 vital things. My suffering will change, and I must change my own perspective in dealing with this illness. I will continue to read and follow u on twitter. Thx for all u r doing.

Dan
Guest

Hi Ellen,

Whilst MS is clearly a different illness with a different pathogenesis, chronic pain conditions certainly have many commonalities, in particular how the pain becomes exagerated. Thanks you very much for the comment and I hope you continue to get something out of CFS Unravelled.

youtube.com/mecfspodcast
Guest

Fantastic, anyone who shares their experiences with ME/CFS is amazing and has my greatest respect. Thanks Dan.

Dan
Guest

Thanks for your kudos. I always welcome any help sharing the hope. Perhaps you would like to add some of the positive recovery stories to your websites?

Tonya
Guest
Hi Dan As a CFS person,i had put together my own self help program from everything i researched and learnt from others including yourself. I had been doing really really well,until this week when i relapsed and completely lost sight of it all,I have hit the bottom and what seems to be pouring out of me is all the emotional pain that the illness has brought me,people don’t see the huge amount of strength it takes to stay on top of this illness to keep working on recovering. So i suppose my point is that CFS is a very painful… Read more »
Dan
Guest

Hi Tonya,

I think only people with chronic illness can get how harrowing the journey is at times. Some of my lowest points were actually on my way back up during my recovery when I had build up hope and experienced setbacks.

The key is to push past this and gain new heights.

Thanks for sharing with your comment and thanks for any help spreading the word of hope.

Kind wishes,

Dan

Jim
Guest
Dan, I suffered from CFS for 20 years. Thankfully I recovered and was able to lead a normal life. I was well for 20 years and relapsed about one year ago. Not an easy pill to swallow. I recently saw a ND and she ran an MTHFR blood test. I was positive for both genes. She and others believe this defective gene may play an important role in CFS/ME.. Has your research found a connection between defective MTHFR and CFS? I hope my current treatment works. If it does I want to share this information with as many CFS suffers… Read more »
Dan
Guest
Hi Jim, I am sorry about the relapse. Yes, methylation came up in my research and much later I also noted Dr Konyenburg’s excellent work, even though I don’t agree with his approach. However, it is not my view that this is the root mechanism. I describe the root mechanism that explains how all the symptoms are created in the book CFS Unravelled. But you can also see it in the VIDEO EXPLANATION. The explanation brings together not just all the symptoms, but why we get this illness in so many different ways and why people recover in so many… Read more »
Lucy
Guest

Yes I think just about everyone knows about MTHFR and methylation now in the CFS world! It is an extremely common SNP though, I think they estimate now that 1:2 or 1:3 people have an MTHFR snp, so it is certainly, on its own, not the cause of anything! Some have good results, some have no result and some have worsening results in treating it! And some have mthfr without it even expressing or causing any problems! There is a much bigger picture! Epigenetics, and all that Dan covers in his book!

Sula Maye
Guest
Radio 4 s inside health programme drew attention to some research as to why MS is rarely seen in people with HIV and aids and the one person this dr had treated who had a diagnosis fifteen years prior to contracting HIV had no ms symptoms once being treated. They think it’s to do with the anti retro virus drugs used in the treatment of HIV and aids and the link MS and HIV have via the Epstein Barr virus. It is worth a listen. They are going to be doing some research. It struck me that some sub groups… Read more »
Dan
Guest
Hi Sula Thank you very much for your comment. The herpes group of viruses (which includes Epstein Barr) are relevant because they resurface when the immune system is suppressed (even though many Dr’s say this is not possible). This is why this connection is much seen in ME/CFS/Fibro given the large portion of the population that has this virus. Your partner’s story echos my own, I distincly remember explaining that I never remembered having had EB in the past, but the blood tests indicated it was not the relevant CURRENT cause of my illness, at least that was my Dr’s… Read more »
Martha an
Guest

Hi Dan

Though I have fibro and CFS my symptoms have all but disappeared since changing my diet and adding some supplements. Thank you for sharing your story, I’m sure you will bring hope to other people suffering from this horrible condition. I look forward to more of your blogs.

Thank you
Martha N

Dan
Guest

Hi Martha,

Thanks for your comment – that’s great to hear.

A key to lasting recovery is understanding WHY certain strategies work so that you don’t have a relapse to some other trigger.

I am a strong advocate for dietary changes and supplementation, but in the end we need to treat the cause and not just the consequences.

Hope the VIDEO EXPLANATION resonates with you!

Kind wishes,

Dan

Beata
Guest

Dan, thank you for a great post. Yes, for me the worst part of not being well is the feeling that it will always be like this. Thankfully, my CFS seems to be over the worst phase and now it comes and goes in waves, so each time it hits, I try to concentrate on the fact that it did get a bit better before… I’ve just received link to your three videos and I look forward to watching them…Many thanks again!

Dan
Guest

Hi Beata, I hope the explanation finally helps you to understand how and why people get ME/CFS and Fibromyalgia and how and why they recover.

Thanks for your comment and all the best with your recovery!

Cheers,

Dan

Thank You
Guest

Thank you for this powerful post acknowledging what it’s like to live with a severe chronic illness. Very moving.

Julie Lee
Guest
A big hello to all those brave people out there who are working very hard to recover from CFS/FMS.I am currently making good progress with my condition but seem to be entering a phase in which I am struggling emotionally more than anything.One of my main issues is the fact that my husband and family in general just didn,t seem to realise how sick I felt and I find it difficult not to hold on to feelings of resentment about that.Fortunately after reading about other patients it seems this is a common problem and part of the cruelty of these… Read more »
Dan
Guest

Hi Julie
Thank you for your comment – it’s so true what you say about the emotional recovery and not being understood. Sometimes, being with others can be the most lonely when they fail to realise what we are going through.
But the main thing to focus on is the light at the end of the tunnel. Wonderful to hear about your progress!
Dan

Laheylarae
Guest
See? I told you I would stop by and check your stuff out. Will read more soon. But this story of yours reminds me of a recent trip I took to the dentist for a root canal. During the preparation phase, before the root is killed, I was told that the pain would be pretty bad for a couple of days. And I was given 2 extra-strength motrin immediately after the treatment. I took them with a shrug, used to pain killers being pointless. However, it was sort of like the discovery of the drug by a aboriginal tribe. It… Read more »
Dan
Guest

Thanks for your comment – yes, there are many herbal and indigineous remedies that are underutilised! Looks like I am not the only one still surprised by pain even after years of having had fibro! 🙂

Jessica Mendes
Guest
As a Fibromyalgia sufferer for almost 20 years now, two things stand out about this post for me: knowledge is power, and what it feels like to be finally taken seriously. I appreciate the work you are doing and wonder if you or your readers are familiar with Complex Regional Pain Syndrome (CRPS), otherwise known as Reflex Sympathetic Dystrophy (RSD) – a neurological condition characterized by severe nerve pain that often accompanies conditions like Fibromyalgia. I have CRPS as well and have been shocked by the lack of education and awareness about it, especially in Canada, and along with this,… Read more »
Dan
Guest
Hi Jessica – thanks for your comment and connecting! 🙂 Your comments about “dedicated to alternative ways of thinking about pain” are particularly insightful. Doctors are using this to treat patients with severe pain in hospitals now. So UNDERSTANDING pain is critical. There is much to say about this. IN CFS Unravelled I didn’t go much into this, primarily as the book wasmore about the root cause of the Fibro/ME/CFS, so there was no point going into all the symptoms treatment. However, I will be addressing this in the new recovery program I am working on. Looks like you have… Read more »
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