How to educate our medical professionals?

[Rufous McKinney]

Yeah. And his treatment was going to include "manual repositioning of my cervix," which he would do. With his hands. It would by necessity involve multiple visits as it would take time for the womb to settle in to the new spot.

Basically, this guy was asking me to let him sexually assault me, repeatedly, to cure a physical anomaly that isn't there, in order to treat my "hormonal" problems.

thats so troubling I wonder if you should be- reporting this to authorities?

If you have endometriosis, this guy does not sound like he has a cure.

 

[Cher Noreen]

What she asked for was help communicating with her doctor that the guidance her doctor was getting that GET is good for ME is wrong, has been discredited, and can make her worse. Because two of her doctors are recommending she exercise more than she currently is, and do cardio exercise. So I gave her links that contain guidelines for doctors, studies, and patient experiences on exercise and GET.

You we're exactly right. Thank you!

Do you already have some sources of pacing guidance in general?

Not that work for me. I was trying to use 50% of HR Max (using a Garmin wrist device) which I found on Workwells site. But I couldn't walk to the dining room without going over that. The last 5 years have really been all about evening out my daily energy levels to really understand what changes it. So I've had to slow down a lot. It's very boring.

I wonder if you can find anything by looking up heart disease on any ME organizations or websites, or reaching out to them, particularly those with doctors as members, like the clinician coalition?

I've been trying that on all the resources I can remember. But I haven't been doing a very good job of keeping up with the various cfs communities. I'll make a list of them and check then off. But, yeah, if heart failure, specifically heart failure, is responsible for 1 in 5 CFS deaths, it seems like this is something one of those groups would worry about.

doesn't sound like aerobic exercise is possible without pem right now, is that your experience? What kind of exercise do you do? Yo

Correct. Aerobic exercise is terrible for me. I enjoy bodyweight exercises - squats, lunges, planks, etc. Yoga has been my most consistent exercise. I have definitely noticed some deconditioning lately, though. So last fall we got a swim spa. I. Love. This. Thing.

In it I can do about 20 seconds of low level cardio at a time. But I can do all sorts of things: step ups, warrior pose, planks, stretching - so much good stretching, etc. I use float dumbbells for various presses.

I tried swimming against the jets, but I really wiped out. I think I was a little too enthusiastic about being to swim again and I'm not willing to try it again until I have I clearer upper limit on my heart rate.

Back when I had access to a gym I found that doing fewer reps of heavier weights really helped me gain strength, not just stop the deconditioning. But I had real clear limits on how much time I was doing them - 20 minutes start to finish, how many exercises - 4 rotating compound moves w/1 minute in each station, and how much rest I took in between - as much as I needed to not breath heavily. If I could do a while minute without stopping I needed heavier weights. It was great.

But I haven't figured out how to do heavier weights in the pool yet. Most of the advice is to do more reps or increase the cardio to make it harder.

I've been searching for really good "exercise along with us in your swim spa" videos for disabled, deconditioned, elderly, etc. But again, as they get harder, they focus more on cardio.

Things that require bursts of energy, or aerobic function, just don't work

So true! I was trying jump ups in the swim spa today, just to see. I did 3 before I was gasping. It was very pathetic. So I went back to my measly, boring little step ups and slow rear leg kicks. But it's such a slow way to build glutes that I'm frustrated.

you are the one who will have to live with the advice you take, thus treat any healthcare helper as someone isn't going to have to suffer the direct consequences of the advice

Thank you! This is excellent advice. I was actually feeling really bad after my trip to the ER earlier in the week for heart flutters. Then I saw some ad about how women ignore the signs of heart attack because "it seems like such a small thing". With the end caption "Your life is no small thing." Or something like that. It was pretty powerful. I'll think I'll put it and your quote on my wall.

is it trying to education someone or could you do better by finding someone else

I really like my doctor and think she's trying to do get best by me. Plus, I'm in a rural area and she's very convenient & she does telemedicine if it isn't necessary to see me in person. So I'm going to do my best to see if I can make this work. But I had been considering agreeing to do her regimen just to show her what happens if I do. So thank you for the words of wisdom!

 

[Cher Noreen]

thats so troubling I wonder if you should be- reporting this to authorities?

If you have endometriosis, this guy does not sound like he has a cure.

I actually think he lost his license to practice. But I think you may be right. I've never really processed all the implications of that interaction before writing them out here. I just thought - that was kooky and makes me uncomfortable.

And I didn't even see him for anything relating to endometriosis. I went to see him for CFS symptoms. One of which does include more exhaustion during menstruation. But still.

 

[PisForPerseverance]

I've been trying that

Try ones with doctors as members like the clinician coalition and also contacting individual doctors to say you and your doc are struggling to understand heart disease and ME and are looking to be pointed in the right direction for anything written about it, any cardiologists they know who have experience, or their own advice and insight that your doctor can contact them for.

Also if you haven't already, I wonder what happens when you look up "managing heart disease" or "cardiologists" + ME or + cfs, or + dysautonomia. And playing around with what search words you use. To see if there's been anything written about it, and to find doctors to contact. Getting a referral for a dysautonomia aware cardiologist to treat you I think would also be a worthwhile pursuit

Do you have a doctor for dysautonomia yet? Learner gave you one before, I can send you another one in your state that I am aware of.

Then I saw some ad about how women ignore the signs of heart attack because "it seems like such a small thing". With the end caption "Your life is no small thing."

Powerful. How sad is it that that and the advice @max_yazhbin gave you feel revolutionary. Because they are revolutionary in opposition to the messages and actions embedded in our healthcare (at least in the states), especially so for this disease. Adding those phrases into my brain bank. Our lives are no small thing. And it is MY body and life that's going to suffer or have relief at the end of the day so screw the cold, flippant, dismissive attitude normalized in our healthcare (not that your doc is doing that now). I matter. You matter. We matter. Even when we can't feel like we do because of what we've been through.

 

[Cher Noreen]

Do you have a doctor for dysautonomia yet?

I don't yet and I would love to get your recommendation. I'm gonna have to talk to my Dr next week b/c I had another bad episode this morning. Passed out in the hallway. They seem to be getting worse and more sudden. So as soon as I can get her to sign off on a referral, I'll be making calls and seeing about getting in.

 

[PisForPerseverance]

I'm so sorry, passing out in the hallway sounds like you need a stronger level of care at home. Do you have ideas on how to modify things at home and with your family for the time being until you get better management and treatment? For example to make sure you don't pass out and get injured on something. I will send you the dysautonomia doctor I'm aware of.

In the meantime, can you look into dysautonomia management and see what might apply to you and try things out? Those are discussed on this website and you can find organized management strategies on dysautonomia organizations I'm sure. Post in the section on this website on it to find what you need. Under comorbid conditions. Wishing you comfort cher.