Sleep dr doesn't get it

Pink

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Went to a sleep dr and she starts taking about good sleep hygiene; doing cbt so I'm not anxious about sleep, exercise in mornings to get my body regulated. Maybe if I sleep well I won't have cfs.
I got so annoyed.
I told her off.
Please drs get educated.
Why does every drs appointment leave me emotionally drained, feeling like I need to justify myself and like they don't believe me?!
 

Wishful

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The doctors don't believe you (they've likely heard somewhere that CFS is psychosomatic, and it will go away if you exercise enough) or they don't want to believe you (they know about CFS, know that they can't do anything, and don't like feeling powerless). Dealing with that is stressful, and thus emotionally draining. Totally understandable.
 

rel8ted

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Went to a sleep dr and she starts taking about good sleep hygiene; doing cbt so I'm not anxious about sleep, exercise in mornings to get my body regulated. Maybe if I sleep well I won't have cfs.
I got so annoyed.
I told her off.
Please drs get educated.
Why does every drs appointment leave me emotionally drained, feeling like I need to justify myself and like they don't believe me?!
I told a rheumatologist once that it was a shame that he spent so much money on an incomplete education that left him prejudiced against the very patients he was in business to serve. That was also the very last doc I allowed under my skin. I had to decide that I could make the decision to not allow myself to get angry over their ignorance, it's simply not worth ruining my day, literally.
 

Wishful

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I encountered a really lousy rheumatologist too. Maybe arrogance is part of their education? I too gave up on doctors (except when I needed a prescription or test I decided I wanted), since they just weren't worth the stress.
 

ChrisD

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She's not wrong about practising all those methods, but they will only help your illness by 1% and most certainly will not get rid of your ME. They shouldn't recommend exercise though.
 

Pink

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She is wrong bec I often cant even sit up propped on pillows so how can I be active by day? Not lie down or rest? Just sit in a chair.
Ok then check my breathing why am I so breathless? (She's a pulmonologist)

And if after 10 mins I can't sleep; I should schlep down 2 flights of steps to the living room couch and read for 10 minutes then try again.
Sure..... nope.

I've been a person who sleeps better in the am than at night since I was a teenager.
 
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I had a cardiologist tell me I need to be walking 30 minutes every day. I said I would love to but I can't, I have ME. She said it doesn't matter what I have I must keep exercising to stay healthy. She knew it was a "real disease" but that specialized psychotherapy would cure me. I thought about arguing with her over her misinformation, but decided my energy was better spent finding a new dr.
It has taken me awhile to learn how to move away from that kind of negativity in my life. If you are not here to help me then I'm not going to let you hurt me.
 

Sushi

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I had a cardiologist tell me I need to be walking 30 minutes every day. I said I would love to but I can't, I have ME. She said it doesn't matter what I have I must keep exercising to stay healthy. She knew it was a "real disease" but that specialized psychotherapy would cure me.
I wish she could talk to my cardiologist who treats POTS and understands that what is heart-healthy for the general population is just not possible for those with ME/CFS. I am lucky! But you are right not wasting your energy trying to convince a doctor who doesn't want to learn. Good luck in finding a better one.
 

Pink

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Also I'm wondering does sleeping better or longer help with pem?
I tried to explain pem to her but I don't think she understood.
 

Wishful

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My guess is that sleep quality/length might be a factor for some ME/CFS victims, but not all. The only way to know if it affects you is to experiment yourself.

Tell your doctor that PEM seems to activate the same processes that are activated by viral infections, leading to sickness behaviour and the other symptoms of viral infections. If sleep affects viral infection symptom severity, it may affect PEM too.
 

Pink

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The sleep dr was skeptical about my high virus blood levels too. (And didnt understand about pem at all)
Honestly I wasnt there for that, I just need a sleep study to figure out if I have z sleep disorder making me worse.
 
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The sleep dr was skeptical about my high virus blood levels too. (And didnt understand about pem at all)
Honestly I wasnt there for that, I just need a sleep study to figure out if I have z sleep disorder making me worse.
I mentioned my increased EBV titers to my endo and she looked at me and said, "So what does that mean?" Ummm...I don't know....I was hoping you could tell me?? She then proceeded to tell me that sleep apnea may be causing my symptoms even though I've been on CPAP for 5 months :bang-head::bang-head::bang-head: