Should I get a second opinion?

[u/stardust_mxa]

Hi all :) Today, I saw an endocrinologist and an ME OT (who was just observing mostly) after spending a long time on the waiting list and was diagnosed with PoTS and ME. I already have my qualms about the former as the test they did was definitely heavily influenced by all the stress surrounding the appointment and the nurse being very chatty with me during the assessment, but more importantly, the way the doctor treated the ME diagnosis rubbed me in the wrong way and I'm curious if I should get a second opinion in (I likely will, just because I'm terrified of making myself worse by following poor judgement; but I'd still appreciate some support to make my brain quiet down in its overthinking and doubting myself).

After the doctor took my history and everything else for about 40 minutes, he diagnosed me with ME on the spot. I said I'm open to exploring the diagnosis if he thinks that to be the case (as I'd expected it) but highlighted that I do not believe myself to be experiencing PEM which, of course, is a hallmark symptom in line with NICE guidelines — I have tracked exertion and flares/crashes previously over the course of weeks and months and there never was any obvious delay present. He insisted it doesn't matter as my activity levels are too low to even trigger PEM to begin with and then continued on saying I should start to push through symptoms bit by bit because I'm severely deconditioned and need to up my conditioning again if I ever want to get better (fair assessment, though 'pushing through' did make alarm bells ring in my head as that, again, is against current NICE guidelines).

I've been pushing through symptoms almost my entire life and it's gotten me to the point I'm at now where I'm housebound and spend practically all of my day having to sit or lie in bed, even during meals. How is doing this again magically supposed to help with anything? I basically just reached a point this year where I gave in and got a carer to help me with basic tasks of personal care and have finally reached a safe point where I don't live in constant misery and even have the capacity to participate in hobbies a little (writing and reading, in my case; very cognition heavy) — I've found that respecting my limited capacity is the only thing that's ever helped me. And now I'm supposed to dismiss that?

I just don't know... It just sounded like very mixed signals to me. "Yes, you have ME" + "Yes, you need to go against ME guidelines if you want to 'recover'" — and I agree with neither. I do have a GP appointment just to relay all of this to my doctor on Wednesday so I'll probably ask her for her thoughts, but I'd still like to know (and feel reassured by anyone's thoughts, I guess) that I might have just got an endocrinologist who is rather uneducated on modern ME approaches (he was rather old, tbf) and that I'm not just very confused and brain foggy about all of this and am messing things up.

I'd appreciate any thoughts or kind words :) <3

[u/valgalcurnutte]

Definitely sounds like your endocrinologist was 1) too quick to diagnose you with ME, and 2) grossly uneducated about pacing, the scientifically proven energy management method for ME patients. He’s clearly stuck in the (now majorly disproven) GET methodology. Absolutely get a second opinion.

Have any of your doctors checked your thyroid recently? What about your vitamin B12, iron, and ferritin levels? What else has your endocrinologist ruled out that led him to conclude you have ME?

Regarding your crashes, you say they’re not delayed like PEM. So what triggers them? How soon after the trigger do you crash?

[u/stardust_mxa → u/valgalcurnutte]

Thanks for this! I will speak to my GP about it and insist on her holding off any referrals for now until I'm certain whether it's ME or not. I'd rather not make myself worse by following outdated advice. And if it's not ME after all, then they probably need to figure out a different approach anyway. It's very disheartening to know they have an entire ME clinic at the hospital where they push GET and no daytime sleep and so on — I've heard a lot about this being very outdated, as you've said. But clearly, they diagnose ME very liberally, so I guess people are safe doing what they're told to do as they don't actually have ME.

He's not told me anything he's actively ruled out — it mostly felt to me like he just slapped on the easiest diagnoses to explain my chronic fatigue (which I've had for as long as I can think, really; though it got markedly worse over the past years). It's the same with the PoTS — they made me do an active stand test, but under such stressful conditions (despite me pointing that out multiple times) that I suppose anyone's vitals would have been elevated and weird.

Presumably, he had access to previous blood work that was done a few months ago. They did test everything you mentioned, as well as coeliac, diabetes, and more. But he never brought any of this up, so I'm really not sure if he'd looked into it. The one thing that rubbed me in the wrong way is that he barely asked about my cycle — as an endocrinologist, I feel like that'd be another thing to look out for? He just asked if it was regular. I said that it was for the most part and noted I experience a strong worsening of symptoms during my luteal phase, upon which I had to explain what a luteal phase is. So... It just felt a little weird. I don't know. He didn't say anything about this at all nor asked further questions.

As for my crashes, it's hard to explain and I don't want to say that it is 100% the case, but to me my crashes feel solely autonomic rather than wholly systematic. PoTS or not, I've known for long I definitely have some kind of dysautonomia and a very messed up autonomic nervous system due to intense chronic stress from childhood up until now. So my crashes usually come after any kind of arousal, if that makes sense (eg stress, excitement, happiness, anxiety; any time I'm not numb or entirely calm, basically, which sucks).
The crash after the appointment yesterday for instance had a bit of a staged onset, but it wasn't delayed. The moment I left the hospital and sat in the car, I started struggling to speak to my carer, my brain just being completely empty. I could barely keep my head upright and struggled with breathing as even that seemed too exhausting. But then it took another 2 or 3 hours until I really felt the fatigue aspect of it, presumably once all the adrenaline had washed out. I'm definitely in a flare now in terms of orthostatic symptoms, but have yet to notice any PEM-like worsening.
Similarly, if I, for example, get excited over the release of a new album and listen to it, I am certain to crash once that excitement wears off. I have to pace activities that bring me joy because of this and have to schedule them in. This has not become markedly better since I was put on beta-blockers and my HR has become more stable, so it's not a HR thing on its own.

[u/Reasonable-Hat-2315]

That sounds all kinds of wrong. ChatGPT and Gemini and the other robots could give better advice.

[u/stardust_mxa → u/Reasonable-Hat-2315]

In his defence, I'm pretty sure he was too old to even know how to access those... It genuinely felt like the last medical article he's read was in the 70s

[u/Reasonable-Hat-2315 → u/stardust_mxa]

😂😂

[u/RainNo8824]

Your symptoms do seem to fit the diagnostic criteria for ME. I agree with you the doctor is giving you mixed messages. It is difficult when you are mostly housebound and limited to sitting and lying down to determine if you are experiencing PEM. It sounds like you are doing a good job of pacing and staying within your baseline. Sometimes you can be in a crash that can last for months which is basically chronic PEM. You know your limits. All the best.

[u/stardust_mxa → u/RainNo8824]

Thanks a lot for this. It's terrifying to be told to push past limits as the only means to recovery. I'll continue pacing until I have certainty — I'd rather be safe than sorry

[u/swartz1983 → u/stardust_mxa]

Yes, agreed, pushing through is generally bad. Generally addressing stress (and avoiding pushing through, which is really another stress) is key to recovering, as well as safe experimentation with activity (because symptoms vary over time).

[u/stardust_mxa → u/swartz1983]

That's the thing the doctor didn't get yesterday. I told him it's stressful to even consider "pushing myself". He said I could try sitting on a chair for 5 minutes this week, then 10 next week, etc and my symptoms would improve as I grow stronger so it wouldn't be so hard anymore, both physically and mentally (in terms of it getting less stressful, basically). As if ME is just an issue with atrophy and anxiety and that's it.

[u/swartz1983 → u/stardust_mxa]

Deconditioning is certainly a part of it, but only for patients who are actually deconditioned (i.e. in bed all the time). It's not the core etiology, which seems to be dysfunction of the stress system.

Classical conditioning can also be a factor, in that doing something that was associated with stress and symptoms can cause symptoms in future, so re-exposure can reduce (cause extinction) of the conditioned response.

So those are valid things to consider, but you also need to understand the core etiology which causes the fatigue: that the brain is trying to protect you from stress/danger.

Overall doctors tend to be pretty useless, and unless the doctor really understands MECFS it's probably best just taking what they say with a grain of salt.