Fear-of-Exercise hypothesis

[Mary]

I have recently become well enough to physically go to doctors, and have run into this problem. I wonder if any of you all could advise me on how to handle doctors?

My real problem is that I push myself too hard, physically and mentally. But 'too hard' IRL looks like 'fear of exercise' to healthy doctors.

How can I explain this to them? Is there any way, if I encounter someone who is not 100% closed-minded? What do you say?

I tell them I have an activity window of about 3-1/2 hours. If I stay within that window and rest the rest of the day, then the next day I can do another 3-1/2 hours of light activity. If I exceed my limit, I crash the next day and end up in bed and can't do anything the next couple of days. So instead of using the words "too hard", I tell the doctor what my limits are. Most just nod. They don't get it but they don't say it to my face.

If someone says, well can you go for a walk when you do feel well? I have to explain that if I have the energy to go for a walk, then usually I have a stack of stuff that needs doing that I have not been able to get to - grocery shopping, laundry, etc. Going for a walk for me is like spending all your money on candy! I used to love to walk BTW.

 

[NilaJones]

Thank you, @Mary!

For me it is more about injuries than fatigue, although fatigue is an issue. I guess that is an EDS thing.

Unfortunatly, RL EDS is like RL CFS, in that it is completely different from what docs are taught in medical school. If I went for a walk I would end up with torn cruciate ligaments in both knees, detatched achilles tendons, dislocated femurs, etc. And if I say that, I am obviously insane.

 

[Mary]

@NilaJones - I'm afraid I don't know what RL EDS is, or RL CFS for that matter - could you explain?

 

[NilaJones]

@NilaJones - I'm afraid I don't know what RL EDS is, or RL CFS for that matter - could you explain?

'Real-life' EDS and CFS, as opposed to the imaginary forms of EDS and CFS taught in med schools.

 

[Mary]

'Real-life' EDS and CFS, as opposed to the imaginary forms of EDS and CFS taught in med schools.

Thank you. I've heard of EDS but know next to nothing about, but I know it must be rough --