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SprinkL3
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Member Since: Oct 2021
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Question Oct 31, 2021 at 10:53 AM
  #1
Does anyone have Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) here?

Apart from my CPTSD and DID and many other issues, my CFS/ME has really affected my quality of life. I'm looking for support.

I do NOT have fibromyalgia. I do NOT have multiple sclerosis (MS). I only have CFS/ME. From what I understand, the fatigue in each condition differs in severity and symptoms. I understand that CFS/ME often accompanies fibromyalgia and MS, but my case is different. I don't have the pain or the neurological symptoms that go with both of those disorders, respectively. I am bedbound, severely fatigued, and experience post-exertional malaise (PEM) quite often.

I've tried a different forum that caters to CFS/ME specifically and exclusively, but it's hard to find out tips for things like determining baselines and figuring out what self-help methods there are since this disorder is controversial and therefore hard to find treatment for. I was told to avoid GET (graded exercise therapy), and my previous physical trainer nearly crippled me when trying to push me to my limits. I was bedbound for months, and I got so worse after that experience in 2018 that I've still not yet recovered to the CFS/ME levels I had before I saw him. So, I know that GET will NOT work for me, as warned.

I heard that pacing works, but it's hard for me to figure out what my baseline is.

I wish there were a workbook or something, so that I could figure this out on my own.

The VA doesn't have any competent therapists in their physical therapy department where I live who specialize in CFS/ME. They also believe it to be partly a mental disorder, so they ask me to simply talk with my therapist. My therapist even said to me that CFS/ME should be treated by a specialist, not solely by a mental health provider. She understands, in part, that it's not a mental disorder. But the stigma surrounding CFS/ME makes it harder to find treatment.

So, I'm reaching out here.

I'm dealing with PEM after a very busy outing on the 29th. It takes me about 4 days to recover, so I'm bedbound most of these days. I come online and type as fast as I can to get online here, before going back to bed.

Any resources or advice would be great, since there are too many books and different approaches for CFS/ME. Ideally, I'm looking for something that does NOT include the GET program, and is more recent. I'm looking for the kind of resources that see CFS/ME as a physiological/biological disorder, not a mental disorder. And I'm looking for resources that truly differentiate fibromyalgia and MS fatigue from CFS/ME because I think the treatments and severity are different for fatigue and being bedridden. I'm miserable being bedbound and housebound most of my days.

Thank you!
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