Guardian: "My maddening battle with [CFS]: ‘On my worst days, it feels almost demonic’" - [mentioning but not endorsing (?) brain retraining]

[wabi-sabi]

Like, I was given the impression that if I managed my pacing just right and stopped myself crashing all the time, it was likely I would improve to moderate. Which gave me hope, and a sense of control. But when I didnt improve, I blamed myself.

I feel like this a lot myself. I've been using visible, which I find very helpful on pacing, or at least showing me how often I fail to pace well. But despite that, I've gotten a tiny bit better, and it's due to medications. I am so impressed over and over with the ability of medications to help where lifestyle changes, be they diet, pacing etc., cannot. When I am not properly medicated, I get PEM from rolling over in be to get the glass of water that's on my nightstand. When I'm medicated, I can walk to the bathroom without PEM. None of my years of pacing could do that.

I'm also curious, as others have been, about the relapsing-remitting course of her illness. Mine has been steadily progressive, or at least platueaing and then progressing again. Is ME/CFS really that much like MS?

I appreciate her eloquence in the last paragraph. Illness isn't about meaning. I didn't realize this bothered me until I read her words. I have tried and failed for so long to make meaning of this illness, and it's been very discouraging. there just isn't any. It's only a fight for survival. Banal is such a wonderful word.

 

[Woolie]

This is such an odd course of ME/CFS.. she’s hit with it for weeks or months at a time, but in between has complete remissions where she is healthy. I wonder how many people have this type and what it means. How do you recover like that? I would give anything to have that version of ME, which I’m sure is awful and hard but at least there are respites..

@Braganca, what this author described was exactly my pattern for the first 16 years of my illness, and it gained me a diagnosis of CFS back in the 1990s. I got the same periods of complete relief, with no PEM or brain fog. I could run, hike, even ski. That's so much better than most here get. But the episodes themselves were an agony of burning fever, flu-like malaise, intense headaches and crushing pain which left me completely bedridden and unable to do anything for myself. In the early years, they lasted upwards of 10+ weeks. And you never knew when they would come and how long they would last.

This pattern is really different to what others here describe, but most doctors are still happy to apply the MECFS label, because they don't think the details really matter. As it turns out, I've since received a different diagnosis of an autoinflammatory disease and have found some drugs that help shorten the epsiodes. Not perfect, and nowadays the in-between periods are not as symptom-free as they used to be. But at least I have a tiny bit of control.

Its hard to know how many other, distinctly different conditions might get rolled into the MECFS diagnosis. We can't start to sort that out until we know more about the underlying mechanisms.

 

[Evergreen]

Its hard to know how many other, distinctly different conditions might get rolled into the MECFS diagnosis. We can't start to sort that out until we know more about the underlying mechanisms.

I wonder if, in the meantime, those with a relapsing-remitting course should have more testing for alternative diagnoses e.g. autoinflammatory diseases and their mimics.

 

[Woolie]

I wonder if, in the meantime, those with a relapsing-remitting course should have more testing for alternative diagnoses e.g. autoinflammatory diseases and their mimics.

That's an excellent idea, @Evergreen. It took me 27 years to get a diagnosis, and a lot of self-advocacy, but it was so worth it.

If anyone with relapsing-remitting is reading this, then try to get examined and to get some basic blood tests done when you're at your worst - you know, the days you're too sick to get blood tests done . During episodes, I had swollen lymph nodes, tachycardia, and on the bloods, elevated CRP, some weird T cell proportions, and high serum amyloid levels. Also persistently high platelet counts.

I'm in New Zealand. I persuaded my GP to give me a referral to a rheumatologist (which i paid for myself), who then sent me on to an immunologist at the hospital, which I didn't have to pay for.

 

[wabi-sabi]

It took me 27 years to get a diagnosis, and a lot of self-advocacy, but it was so worth it.

What did it turn out to be? If that isn't too personal to ask...

 

[poetinsf]

@Braganca
This pattern is really different to what others here describe, but most doctors are still happy to apply the MECFS label, because they don't think the details really matter.

This may have been true in 1990s. But don't we have more stringent diagnostic criteria these days? If one is properly diagnosed and then found to have something else later, I'd consider it a comorbidity rather than misdiagnosis. (Incidentally, I think diseases that have ME/CFS as comorbidity may provide a critical clue).

For what it's worth, I used to have relapse/remission pattern for a few years in the early/mid 2000s, with each episode lasting about 6 weeks. Some might say it was prodromal. I think it was my body finally giving in to the repeated stress.

 

[Woolie]

What did it turn out to be? If that isn't too personal to ask...

Sorry for the slow reply, @wabi-sabi ! I've been diagnosed with an autoinflammatory illness. Most of the illnesses in this group have only been documented recently. You can read about them here.

The best part about the diagnosis was the validation that something was definitely wrong. Mentally, that had a huge effect on me. Physically, though, it hasn't led to a cure or anything. I've tried a few treatments, some that worked for a while and then didn't, some that never really did anything, and some that made things worse.

But I have one medication that really helps to control the length and intensity of my episodes, and that's just amazing. It makes me cry to think of the years I wasted without knowing about this. The drug has been known to the medical profession since the 50s (its a corticosteroid). Maybe if I hadn't been diagnosed with MECFS way back, and told there was no treatment, I might have kept looking and found this treatment sooner.

Also, I'm still subjected to BPS nonsense from time to time. Last year, I started to lose control of my episodes, After coming of the corticosteroids, I would just rebound into another episode immediately. My specialist was away, so I saw a new registrar. I told her my symptoms: burning, hotness, swollen glands, evolving into a sort of hot crushing fatigue after the first couple of days. She said that my medications can only treat the first couple of days, and that everything after that was "fatigue" which could only be treated through sleep hygiene and graded exercise.

It was astonishing to hear a smart person say this. How could she not see the relationship? Obviously, if I can cut the episode short in the first couple of days, then I won't have to endure the fatigue on the days to follow.

People diagnosed with Rheumatoid Arthritis get the same thing. Anything they experience that's not directly trackable using a known biomarker is "behavioural". Including fatigue.

 

[Woolie]

This may have been true in 1990s. But don't we have more stringent diagnostic criteria these days? If one is properly diagnosed and then found to have something else later, I'd consider it a comorbidity rather than misdiagnosis. (Incidentally, I think diseases that have ME/CFS as comorbidity may provide a critical clue).

For what it's worth, I used to have relapse/remission pattern for a few years in the early/mid 2000s, with each episode lasting about 6 weeks. Some might say it was prodromal. I think it was my body finally giving in to the repeated stress.

Hi @poetinsf, your history sounds a lot like mine. But your wording suggests your experience might have been quite different.

I fell suddenly and very severely ill in 1990. My first episode was my worst and lasted 14 weeks, I was completely bedbound, it was a huge effort just to give a one-word response. Then every few weeks another episode would start, and last anywhere up to 10 weeks. So I would never describe these early years as "prodromal" in the way you do. My body didn't slowly "give in" to the repeated stress, it collapsed suddenly!

So:
* I had a collection of dramatic and severe symptoms in Year 1, and a similar set of symptoms in Year 27 (except a little less severe and dramatic, and the remissions a little less complete)
* In Year 27, I convinced someone to do some in-depth testing and they gave me a new diagnosis and a disease mechanism that explained the episodic nature of the attacks and the specific symptoms.
* Therefore, its pretty safe to say that the same mechainsim was probably at play in Year 1 as well. In fact, we should prefer this as the simplest explanation, until evidence comes along that strongly argues for a more complex one.

If a GP met my younger self today, I think they would probably still diagnose me with MECFS. During my episodes, I certainly had severe PEM. The onset of my illness appeared to be a long flu-like illness, which is also broadly consistent with MECFS. I received testing to eliminate several other diagnoses (e.g, lupus, HIV). The complete remissions between episodes were unusual, but many current criteria do allow for a relapsing-remitting pattern, don't they?

The thing that was really different about me is something I didn't discover until joining these forums. It was that I didn't experience brain fog. Headaches yes, sometimes really hard to bear, but nothing at all like the brain fog that others describe.

Maybe that's where we should be looking when tightening the diagnostic criteria.