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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Plea to colleagues by doctor felled by ME

A

arewenearlythereyet

Senior Member
Messages
1,478
Snowdrop said:
That's how I find it useful. My hips hurt when I'm trying to sleep from the pressure I expect because I'm in bed a lot. It doesn't completely resolve the pain but at least enough to get to sleep and often works well in conjunction with sleep meds.
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It's funny knees and hips flaring are my warning signs I've done too much. I read somewhere or saw a poll that pain was more likely to be localised to the legs ...I remember wondering why this might be at the time. Perhaps it's POTs related?
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
arewenearlythereyet said:
It's funny knees and hips flaring are my warning signs I've done too much. I read somewhere or saw a poll that pain was more likely to be localised to the legs ...I remember wondering why this might be at the time. Perhaps it's POTs related?
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It may be. For me the other discomfort at night is my feet. That ache and make me want to move them about. Through chance I've discovered that I can get relief by washing them in cold water before bed. So it seems possibly a heat issue. <Blerg> so many stupid symptoms I never even wanted to know about let alone deal with.
 
Countrygirl

Countrygirl

Senior Member
Messages
5,463
Location
UK
A very interesting post on reddit by a doctor with ME. He tried to post it in the doctors' subforum for other medics to read, but it was removed, sadly.


https://www.reddit.com/r/cfs/comments/6sneul/a_plea_from_a_fallen_doctor_on_chronic_fatigue/


A plea from a fallen doctor on Chronic Fatigue Syndrome (ME/CFS) (self.cfs)

submitted 4 months ago by fallendocR53-82

I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits.

I am now completely bedridden from post viral CFS.

I am writing this to beg my fellow colleagues to take this disease seriously, understand that it is 100% organic in origin, and that it can happen to anyone.

I used to see CFS patients fairly often in my practice. Some of them were quite debilitated and some semi-functional. I always tried to be sympathetic and did what I could to help, but truth be told there was always a voice in my head questioning if their symptoms were psychosomatic. At times I delayed a diagnosis because the literature told me to wait 6 months. I recommended exercise, antidepressants, and psychotherapy because that had always been the conventional wisdom. And when patients didn't come back, I subconsciously assumed they had gotten better, and that I was justified in my approach. I feel tremendous guilt about this now.

When I got the flu that started this, I thought I would be out of work for 10 days. 10 days turned into 10 weeks, and then 10 months. The virus was gone, my labs were clean, and yet I still felt horribly ill.

My symptoms:

  • I could barely stand up in the shower due to orthostatic intolerance. Later my wife would have to install a shower chair

  • I could not read or write due to cognitive dysfunction

  • I could not walk more than 45 steps without extreme lactic build up in my muscles
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