Derek S. Chronic Fatigue Syndrome (CFS)

Howard took a lot of grief for that article from the CFS community. I don't know which side is right, or if the truth lies in between, but there is zero common ground between people who view CFS as a phenomenon with psychogenic causation and a very militant group who insist that despite the failure to identify a pathogen or other physiological cause (or cure) after 30 years and many false hopes, the condition is physiological in nature.

 

Derek: Are you Derek Sapico, under a slightly different handle?

Well, I am the incarnation in a body and mind of a common ground between these two groups, and I can tell you it is extremely confusing. I have had manifestations of the CFS/TMS that, if I didn’t attend to at the level of symptoms, it would be like self-abuse. When I go into a feeling of wellness and energy, it’s easy to say “it was just TMS.” But, honestly, this is not like back pain. It is an all-systems crash. And the challenge of working your way out of this, in many cases and my case for YEARS, with no real support for this particular brand of TMS, can seem like believing in the tooth fairy when you are alone, unable to move for days, perfectly capable of processing your emotions and thoughts... Until you have walked in my shoes, judge not what is happening to me.

And, again as I said in my last post, that is the issue here. The reason people with CFS are so enraged about anything that doesn’t validate them is that it makes us feel victimized, yet again, by being treated like lepers. There is so much emotional energy in this for me personally, as explained above. Being rejected and judged and basically ostracized because I had this... (what to call it? Not illness. Symptoms sounds a bit wimpy...) — well, talk about rage, whether conscious or unconscious! I’ve written on the other TMS Forum about how it was almost a relief when I got the C diagnosis, although it was no more or less emotionally caused than any of my fatigue experiences.

And I am left, actually, with my own experience. I am responsible for my own ability to make it through life. Sometimes I have stuff go on in my body that I just have to get help with, and yet it is intricately woven into the group of symptoms lumped as CFS/TMS. In fact, when I had acute pneumonia earlier this year and nearly died, it seemed to be part of a continuum of symptoms, the other end of which was fatigue that a TMSer would say was just “created” by my brain. My honest current understanding is that all illness is TMS. And all TMS can respond, at times, to certain physical interventions. Sure, it will move around, and in the more “minor” symptoms of TMS, this is fairly obvious. Oops, the shoulder is stiff. Did such and such to alleviate it (bringing oxygen back to the cells, and so on). Oh no! Now the other shoulder is bad. I must have overused it...

But when it is just the normal lifetime of various illnesses which everyone has, one of which will git ya, how do you distinguish? This one is real. This one is unreal.

A concern I have, and have had to watch in myself, is that the levels of frustration from chronic and at times disabling problems can drive people to manifest more serious problems in order to get taken seriously. I wish there really were people with genuine recovery from decades of this kind of thing. I mean, I can count myself as one. I DO count myself as one. But I still have phases that are debilitating, despite doing everything “right.” Oops - outed my goodist self there. ;-)

One more thing: there are no experts in TMS. It is more like a 12-Step Program: we are all bozos on the bus. People can sponsor other people, but only if they are recoverING addicts themselves. Anyone who presents themselves as having recoverED is probably using TMS to make a living. Oops. Again. Yes, messages of strength and hope, great.

But I was recommended through various links on this site and ended up going to a therapist that I only discovered after traveling a long way to see him, had not actually suffered from TMS. He just knew “about it.”

So there is a lot of potential for frustration and rage in this matter of resolving CFS and other more complex bodily manifestations in a TMS fashion. It is a work in progress. Let’s be kind.

 

Hi Wavy Soul,
I'm so curious by you calling Gupta "much simpler" because I've been finding it the opposite! In fact, it became overwhelming to me and I stopped it, even though I know it's helped so many people. When I had chronic daily backpain, it took about 2 months of educating myself and doing a TMS journal workbook to rid myself of the pain. But the CFS... not budging. I'd love if you could share what a typical Gupta Program day for you looked like. I know it's a commitment, but I also need to be reasonable and kind to myself as someone with a full-time job who is also a single mother of a toddler -- and is, of course, brain-fogged and exhausted all the time.
Ashok will sometimes say you just need 20-30 mins a day. But then he’ll add that you should do another 20 mins meditating at night. And then he'll add a handful of times throughout the day where you do 5-15 mins of work (retraining, the Accelerator, ART?, the jargon is a lot for me, too, and I don't remember what's what). And then there are videos on the website, corresponding worksheets to do, and then the webinars.
At first I tried to "let go" of that stress and just do my own pace, maybe 20 mins meditating and another 10 on other work to start, but I found that the message vacillates between “Let it go” to “Don’t you have an hour or so a day to devote to yourself?” It's confusing. So I'd love to hear how you did it, just to get someone's experience and perspective.

(And side note -- a while back Ashok posted on the Facebook page looking for more volunteers, and I commented that I thought they should be paid, and that too often caregiving-type jobs like that, most often taken on by women, went uncompensated. The admin kicked me out of the FB group for saying that publicly instead of messaging them privately. If that's wrong, I don't want to be right! But that's why I can't ask these questions there )

 

Hi Ellen,
I know it's been years since you posted this, but just checking in on your progress and if anything has been working for you. I'm not sure if I've written to you before. I appreciate your comment, because I feel the same as you (and was frustrated by the advice to "take a nap" and go on with your day, since our tiredness does not go away with any amount of sleep). I've been confident my CFS is TMS for a long time now but not able to change the way I feel, despite ridding myself of chronic pain years ago. I really need to hear from people who are having positive results.

 

Hi AMarie,

I'm not Ellen and I wouldn't pretend to fill her shoes. But I did recover from CFS using the TMS mindbody approach. In addition to feeling tired, I had constant cold/flu-like symptoms. I guess I'm a little different from you in that my symptoms would sometimes improve with a lot of extra rest and extra sleep. But not always.

Like you, I recovered from chronic pain issues years ago thanks to Dr. Sarno's work, as well as using other similar resources. Chronic fatigue was definitely more challenging. It took a more focused effort and more time. Essentially, what I did was work Alan Gordon's free Pain Recovery Program | TMS Forum (The Mindbody Syndrome) (tmswiki.org). I've mentioned this multiple times and people are probably sick of me saying it. But when I say I worked Alan's program, I mean I really jumped into it with both feet. I went through it again and again. I re-wrote the program in my own words multiple times. I replaced the word "pain" with "symptoms".

I think it was helpful to have a solid background in Dr. Sarno and TMS concepts from the past.