Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

[Evergreen]

@Jonathan Edwards,

I should know better than to question your diagnostic descriptions , but did the "chronic widespread unexplained pain" include joint pain? I always assumed the fibromyalgia diagnosis excluded joint pain and was chronic widespread unexplained neuromuscular pain, but I am a lay person who lives in the USA, so I may be way off base.

Oh you've just reminded me of a rheumatologist I saw. Every time I said "joint pain", they would correct me with "muscle pain". "Joint pain" seemed a reasonable way to me to descibe pain in shoulders, elbows, hips, sacroiliacs etc. But no. I wasn't allowed say it.

 

[Jonathan Edwards]

I should know better than to question your diagnostic descriptions , but did the "chronic widespread unexplained pain" include joint pain? I always assumed the fibromyalgia diagnosis excluded joint pain and was chronic widespread unexplained neuromuscular pain, but I am a lay person who lives in the USA, so I may be way off base.

The history of the diagnosis is a grand muddle. Some of the tender points are muscle, some are bony. I don't think there was any consistent conception. (And the tender points were abandoned.)

 

[Verity]

I only have a moment to post but my answer to the question is that when we looked into 'gastroparesis' on a thread here we found literature suggesting that the motility tests add nothing useful to the history of symptoms. I suspect that stomachs do become immobile but I am very sceptical that there is a 'condition' called 'gastroparesis' that is a useful diagnosis.

Thanks for the input! I am not surprised to hear that was the conclusion on the test.

On the psychiatric side, I think things are more complicated, but I am reading you @Verity as thinking they are too.

Yes, definitely, and thanks for the benefit of the doubt—I’m not sure I expressed myself well.

If all you are saying is that sometimes people with psych diagnoses get additional or are incorrectly diagnosed with other conditions which can cause harm, I don't think that is particularly controversial. But that doesn't negate the fact that psych diagnoses face similar issues when they go beyond describing symptoms/behavior and try to attribute some kind of cause (especially when that cause involves bad thoughts). I think its is fair for pw ME to point out these issues but I agree that telling their doctors that psych patients don't exist isn't the appropriate place for that.

To be honest, I can’t entirely remember what I meant at this point lol, but yes, that was at least part of it. I don’t think it should be controversial, at least. When a diagnosis becomes a fad, all kinds of things are likely to get diagnosed as it! It actually happened to me as a child—very obvious ADHD misdiagnosed as some kind of adrenal problem because I kept complaining that it was fatiguing. Adrenal fatigue was popular then.

I know that ME patients can be understandably very skeptical of individual cases of psychiatric disorders being misdiagnosed as popular diagnoses, and I just wanted to caution that when trying to get through to doctors about our relationship to the hEDS/MCAS/POTS situation, excessive skepticism about things they’ve seen with their own eyes may make some question our version of events.

Quick edit: All that is to say I think it’s more useful to take a “sloppy diagnosis and questionable concepts of certain conditions are hurting everyone” approach, instead of “all patients with hEDS/MCAS/POTS/gastroparesis do not have psychiatric conditions and need their actual organic medical problem to be found.” I get the latter vibe among pwME sometimes.

 

[Verity]

The thing is that this lack of care has been happening to people before any of these newer examples or supposed problem diagnoses that are claimed as ‘causing the bias’ came along.

I don’t think it’s the root cause of the attitude—unfortunately a dismissive attitude is just thoroughly human—but it really does not help. The human mind looks for patterns, and if even one family doctor believes, say, MCAS causes neuropsychiatric symptoms and is consequently inappropriately diagnosing it in cases of psych plus GI, some doctors in the local hospital system are going to pick up on a link between symptoms and diagnosis, possibly unconsciously. Even one bad provider in a system can cause some bias like this. It would not be right to generalize based on seeing those supposed MCAS patients, but at the same time it’s a normal thing for the human brain to do.

 

[Verity]

Anyway, I think I’ve made the point I was getting at as best I can, and I don’t want to take this thread off track! I’ll step back from that now.