Thank you for getting the word out about this. Conflicting "consensus" criteria has made life difficult for people with ME as well.
I think when patients realize doctors use labels that may have different/conflicting criteria, they can be empowered to ask which criteria a doctor uses....
Oh you’re absolutely right, I have an example- I have chronic pain from cervical spine DDD. It was recommended that I have a multilevel disc replacement even though at the time they didn’t do multilevel disc replacements here, and United healthcare didn’t pay for that surgery anyway. So I never had it.
So of course 13 years later I’m still in pain, so that’s chronic rather than acute, right?
But then when I see a new specialist and I list chronic pain from cervical spine DDD on the registration form they enter chronic pain syndrome as a diagnosis.
Chronic pain syndrome is different. We don’t tell people who need a total knee replacement who don’t get one that they have chronic pain syndrome. That means the pain signals are firing even though there’s nothing wrong anymore. That’s not applicable to me or someone who needs a knee replacement and doesn’t get it.
But because my degenerated joints and bone spurs are in my spine I get labeled with chronic pain syndrome which makes them think I take pain medication just for fun I guess, I’m not real sure what kind of judgment comes my way because of that but I certainly feel it from some of them.
I feel like I’ve been slandering myself because I was told my pain was chronic because it lasted more than five months so I’ve been saying I have chronic pain when that’s not actually what’s happening. 13 years of this and it was just about a month ago I figured out that these terms mean different things, and I suspect this is why I’ve had trouble with some of these specialists.
That sounds absolutely awful, I'm so sorry. It's terrible when you realise that doctors have been misunderstanding you because you haven't been expressing yourself the "right" way. (How on Earth are patients supposed to know what is the "right" thing to say to a doctor?)
Years ago I realised that when I told doctors I was sometimes so sick I couldn't get out of bed, the doctors thought it meant I was depressed. But in fact it wasn't depression, I just physically couldn't move much. If I had just said "I'm too weak to stand" instead of "I can't get out of bed" perhaps things would have been very different for me, but I didn't know!
I’m so frustrated for you from reading this. Where is the curiosity from these professionals?
Shouldn’t the next step have been to ask you if you are sleepy, or if you have weak muscles, or if you feel off balance? Shouldn’t they try to get some kind of specificity about why you can’t get out of bed? What if you just mean you have neuropathy in your feet so simply putting your feet on the ground to get out of bed hurts?
That would be an entirely different issue that imaging and lab work could possibly diagnose but instead of asking questions they call it depression and tell you to come back in 6-8 weeks when you’ll know if whatever SSRI they threw at you was working.
Ugh! Yep, i’ve had to stop answering those depression screening questionnaires that the PCPs give every year (idk if it’s just part of the medicare wellness visit or if they all do it) Because it’s only a couple questions and with MECFS if I answer it honestly I get labeled depressed because there’s no nuance, and if I lie so I don’t get a depression diagnosis based on this three question questionnaire then I worry that when SSDI does their review on my medical records they will see me telling my PCP that yes I am able to do things I enjoy (I don’t remember the other 2 questions but they’re similar).
But I’ve decided it’s best to lie (sort of), because I can do things I enjoy, sometimes. It’s not depression it’s fatigue and poverty from disability.
As an original prototype for Holmes 1988 CFS who literally started the syndrome by telling doctors to "Look into mold before there are millions of people sick from it"
I have a litmus test for whether any doctor ever looked into this syndrome.
They have to show some awareness of how toxic mold was the first clue, or their lack of recognition betrays they never looked into CFS and know nothing about it.
In which case there is no reason to waste my time or money on them.
Thank you for getting the word out about this. Conflicting "consensus" criteria has made life difficult for people with ME as well.
I think when patients realize doctors use labels that may have different/conflicting criteria, they can be empowered to ask which criteria a doctor uses....
Oh you’re absolutely right, I have an example- I have chronic pain from cervical spine DDD. It was recommended that I have a multilevel disc replacement even though at the time they didn’t do multilevel disc replacements here, and United healthcare didn’t pay for that surgery anyway. So I never had it.
So of course 13 years later I’m still in pain, so that’s chronic rather than acute, right?
But then when I see a new specialist and I list chronic pain from cervical spine DDD on the registration form they enter chronic pain syndrome as a diagnosis.
Chronic pain syndrome is different. We don’t tell people who need a total knee replacement who don’t get one that they have chronic pain syndrome. That means the pain signals are firing even though there’s nothing wrong anymore. That’s not applicable to me or someone who needs a knee replacement and doesn’t get it.
But because my degenerated joints and bone spurs are in my spine I get labeled with chronic pain syndrome which makes them think I take pain medication just for fun I guess, I’m not real sure what kind of judgment comes my way because of that but I certainly feel it from some of them.
I feel like I’ve been slandering myself because I was told my pain was chronic because it lasted more than five months so I’ve been saying I have chronic pain when that’s not actually what’s happening. 13 years of this and it was just about a month ago I figured out that these terms mean different things, and I suspect this is why I’ve had trouble with some of these specialists.
That sounds absolutely awful, I'm so sorry. It's terrible when you realise that doctors have been misunderstanding you because you haven't been expressing yourself the "right" way. (How on Earth are patients supposed to know what is the "right" thing to say to a doctor?)
Years ago I realised that when I told doctors I was sometimes so sick I couldn't get out of bed, the doctors thought it meant I was depressed. But in fact it wasn't depression, I just physically couldn't move much. If I had just said "I'm too weak to stand" instead of "I can't get out of bed" perhaps things would have been very different for me, but I didn't know!
I’m so frustrated for you from reading this. Where is the curiosity from these professionals?
Shouldn’t the next step have been to ask you if you are sleepy, or if you have weak muscles, or if you feel off balance? Shouldn’t they try to get some kind of specificity about why you can’t get out of bed? What if you just mean you have neuropathy in your feet so simply putting your feet on the ground to get out of bed hurts?
That would be an entirely different issue that imaging and lab work could possibly diagnose but instead of asking questions they call it depression and tell you to come back in 6-8 weeks when you’ll know if whatever SSRI they threw at you was working.
Ugh! Yep, i’ve had to stop answering those depression screening questionnaires that the PCPs give every year (idk if it’s just part of the medicare wellness visit or if they all do it) Because it’s only a couple questions and with MECFS if I answer it honestly I get labeled depressed because there’s no nuance, and if I lie so I don’t get a depression diagnosis based on this three question questionnaire then I worry that when SSDI does their review on my medical records they will see me telling my PCP that yes I am able to do things I enjoy (I don’t remember the other 2 questions but they’re similar).
But I’ve decided it’s best to lie (sort of), because I can do things I enjoy, sometimes. It’s not depression it’s fatigue and poverty from disability.
Good example!
Dr Afrin definitely looked beyond the tryptase yet he says the immune system is mistaken.
Which implies there is nothing there to be tested for.
Which, in effect, tells researchers not to bother looking for an unknown environmental agent.
Did you see him? I wanted to, but didn’t have $3k for initial appointment.
As an original prototype for Holmes 1988 CFS who literally started the syndrome by telling doctors to "Look into mold before there are millions of people sick from it"
I have a litmus test for whether any doctor ever looked into this syndrome.
They have to show some awareness of how toxic mold was the first clue, or their lack of recognition betrays they never looked into CFS and know nothing about it.
In which case there is no reason to waste my time or money on them.
They clearly don't understand the situation.