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.