I didn’t have to wait too long for the doctor this time, but still thought this was hilarious.
The single best thing the chronic fatigue specialist said was, “We’ve been puzzling over your case for a while.” I said, “Well, at least that makes more than one of us.”
Somehow, it meant more than anything else he could have said ~ except, perhaps, “we have a cure” or “we found a previously-overlooked treatable tumor.” He only spent about 20 minutes with us, but he did seem to have prior knowledge of my case ~ details I had told the PA six months ago. That was reassuring. Maybe he actually was back in his office, reading my file thoroughly, pacing back and forth, stroking his beard, massaging the bridge of his nose, calling his colleagues, looking up case histories in large, dusty medical tomes… Ok, doubtful, but I’m grateful he took a cursory glance at my paperwork before coming in the room.
When the main doc finally joined us, he said…very slowly… “your symptoms are confusing” …pause… “they’re so varied” …pause… “but” …pause… “we still consider this chronic fatigue syndrome.” About five minutes later he said, “the reason you’re confusing” …pause… “is because you tested positive for…” For what? FOR WHAT!? “…plasmodium.” Oh. Yeah. But that was a false positive. Right? He didn’t seem to quite buy the false positive for whatever reason, which now has me thinking about malaria again. He didn’t want to pursue it, but he just was so slow and thoughtful about this malaria conundrum that it made me think he knew more about how those tests work than I do and that the positive results shouldn’t just be swept under the rug. Regardless, I have no symptoms of active infection, so he thought we should move forward with CFS symptom management.
The main doc, to his credit, didn’t dumb anything down and emphasized repeatedly that the medical community does not fully understand the mechanisms behind what happens in chronic fatigue syndrome, but that it is a central nervous system disorder. He said the etiology of CFS, fibromyalgia and chronic pain is the same, so the treatments are similar. He used to work with Jon Kabat-Zinn, which excited me since I’ve read Kabat-Zinn’s book, listened to his meditations and podcasts etc., and my therapy has been based on his mindfulness models.
Unfortunately, I didn’t get a chance to ask any of my questions: Should I see a rheumatologist? Cardiologist? Neurologist? Should I be tested for heavy metal toxicity? Hormone levels? Serum electrolytes? Coxsackie? XMRV? They didn’t want to retest any of my year-old blood tests without any new and/or severe symptoms.
Ultimately, my marching orders were to start Cymbalta at 20mg, see the clinic’s psychotherapist and read The Pain Survival Guide (written by Dennis Turk, a colleague of theirs, incidentally). Also, both doctors were emphatic that exercise was the best medicine (although, they called it “activation” to try to trick us into thinking it was more technical and less threatening). My husband piped up about our fears when it comes to graded exercise. I said, “I try to keep active, but if someone is going to ask me to lift a weight… forget about it.” Momentarily, I wanted to scream: Get into my body for one week and then tell me to exercise or waste energy seeing your psychotherapist or come back to useless appointment after useless appointment! But, it was only momentary. They’re trying. They’re treating us. They’re our only hope.
As we were leaving, I said, “Call me if you need a guinea pig.” The main doctor said, “You’d be amazed how many people say they’d like to be part of research studies.” “Not really. When you don’t want to live like this, there’s not much to lose. We need all the help we can get.” This coming from the lady who has unopened bottles of SIX different prescriptions that might supposedly help me. I’ll participate in a research study as long as you don’t touch me or give me any drugs.
Daily gratitude: for all the doctors and researchers trying to find the answers to ME/CFS/FM. Thank you.
Rag and Bone Shop of the Heart 
The specialist I saw concluded that it was attempts to exercise that caused my condition to become so profoundly debilitated. Do what you can to keep as conditioned as possible, but I would strongly caution you not to push through the point that it is difficult or is causing your condition to go down overall. 😦 The slope is steep and climbing back up sucks royally.
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This is exactly my fear. Not only have I read a lot of websites warning about attempting to exercise, but I know people like you that have had it happen. Also, I still think it contributed to me going from not able to work, but able to go to the dog park and run errands etc. to being housebound, having a hard time walking 1500 steps… But I wonder… was it continually pushing myself to keep active or was it the month-long lack of sleep while I was on LDN? Or both?
The doctors insisted that bad experiences came from doing too much exercise too quickly, but that study after study showed that the only thing that helped consistently with ME/CFS and FM was very careful graded exercise. Do you think you should have done nothing? Or do you think you just did too much too fast?
Happy new year, Curiosity! We’re going to turn things around this year. 🙂
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This response is giant, but I have educated myself about this and feel very strongly about it. And I would hate to see anyone end up where I am unnecessarily.
I could guess at the “study after study” they’re referring to. And there are some strong opinions that they are deeply flawed in a number of ways.
Have you looked into the Pacific Fatigue Lab and their findings about aerobic exercise abnormalities, etc.? If you haven’t, it’s worth a look.
If I had known then what I know now, I would have rested much, much, much, much more. I do not believe for a second that exercise would have improved my condition. In fact, the more I rest, the better I get. If I could get myself to lay perfectly still in a dark silent room for a month or two, I imagine I’d come out of it feeling much better than when I went in (except that I might want to move my shoulders and knees so that they didn’t become painful). That is the only thing that is consistent with what I have experienced (and I’ve tested the waters plenty, and am a very scientific and pro-exercise sort of person). I am not increasing my activity level and therefore improving. I am improving through rest, and therefore have been able to increase my activity level.
Once you’re condition improves (though rest and reduced activity), you will be able to do more things without straining or fighting or suffering for it. Or at least, that has very consistently been my experience. It happens naturally as you recover.
As a side note, it was not hardcore formal exercise that landed me here. As I continued not to respect my limits enough, it began to take less and less and less to trigger a crash for me. It was daily activities like running errands, then attending quiet social functions, and then taking gentle walks, and and then just trying to sit upright. And then it was trying to walk to the bathroom, or move my own limbs. It’s a nasty slope, and it really doesn’t take much. It’s worth keeping a close eye on making sure your condition is consistently improving. Overdoing can mean all sorts of things at different levels of functioning.
I believe I recall reading Dr. Klimas (who I respect greatly) stating something like that conditioning and progressive exercise can help patients fix the extra tiny percent of problems due to deconditioning, but then the other 95% of the illness itself doesn’t change at all through exercise.
I do my range of motion exercises, now that I am well enough to do them without causing myself harm (there was a time that this was not the case and I got progressively worse trying to do them before making the executive call to stop). I have read a lot of expert opinions that suggest there is about a 90 second window before the aerobic energy production kicks in, and that you can do a bit more within that time limit without causing issues, so I make use of that now and then. Also that one’s heart rate should be monitored during activity of any kind and that the heart rate should not be allowed to rise above that person’s aerobic threshold (assuming we’re talking about an ME patient – healthy people do that all the time), which varies from person to person. And above all, if the activity causes a decrease in functioning or a crash, then it was WAY TOO MUCH.
The specialist I saw at the Hospital program said exactly the same things. They have a physiologist on staff who has studied the exercise physiology of ME, and the doctor I saw said she is constantly having to tell patients to “do less, do less, do less.” I think naturally we all try to push the limits of what we’re capable of because we want our life back. But really that’s way too far for optimal recovery. She wanted patients doing about 60% of what they’re capable of, and no more.
I wish that I had rested more while I still had more functioning left. Definitely, if you find your condition worsening overall, cut back immediately. It’s not worth it.
…Just maybe don’t mention it to your doctor. I use “I do my range of motion exercises twice every day, and as much activity as I’m able to do without crashing or causing a worsening of my overall condition.” Which is completely true. For some reason if I mention it as a positive towards exercise, they’re very supportive. I have learned that mentioning anything negative about a quantity of exercise, no matter what it is or how valid the concerns, the response is guaranteed to be bad. I’ve mostly given up trying to educate them. The doctors who believe strongly in exercise will continue to do so until they have enough personal experience with patients who follow that faithfully and get much worse. In the mean time, it seems safest just to smile and nod and hope that they read the research.
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I have personally found what they call ‘graded exercise therapy’, or at least my version of it, extremely useful but it is not a case of simply “doing more” it is about re-learning how to listen to your body and re-training your body to understand that making a cup of tea or walking up the stairs is NOT the same as running a marathon.
Has anyone talked to you about baselines and limits as they relate to GET?
You need to be very prescriptive in what you do and when and not forget that GET will also incorporate periods of rest and sleep which are just as important as the exercise. You need to make sure that your increases in exercise are small and continued until they are sustained to the point where they become effortless and you MUST NOT be tempted on a good day to do more than you have planned (excepting major emergencies, of course).
It is boring and tedious and frustrating but 3-years,3-months since my diagnosis (but 15 or so years since this started off with glandular fever which was misdiagnosed) I yesterday took my horse to an hour and a half showjumping clinic which was exhausting and today went to my usual Pilates class (which admittedly did kill my thighs) and I’m just a little bit more tired than normal, which I think has more to do with being up in the night with an upset stomach. So it can work if you are strict with yourself.
If you would like more info on baselines, etc, drop me a line and I’d be happy to help.
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I don’t think we’re in disagreement on the basics at all.
The problem I find is that it seems really not to be the exercise and activity that is making someone better when that type of program is followed. It’s the resting, and the prescribed limits, and the crash-avoidance. “Avoid crashing, don’t do things that wipe you out, balance activity with rest, and aim for balance and stability rather than pushing too hard on the good days” is great advice. And those pieces are VERY important, I would agree, but are also all parts of a good pacing program. People who are able to rest sufficiently often get better on their own, even without any interventions at all (I had this happen to me during my first three major crashes). The increased activity follows naturally as the person begins to recover (which happens without the enforced exercise). There’s nothing wrong with doing activities that are a mild reach for you, but I would guess that would happen anyway in most cases since we’re all pretty desperate to get back into our normal lives. I feel like it’s the ‘limiting’ piece we all need help with rather than the ‘consistent activity’ piece.
The major issues I have are that Graded Exercise is often approached by doctors as “more exercise will make you better” and includes a push to do MORE than the person feels capable of, which goes against even the graded exercise’s own philosophy but happens very often all the same. Which makes it dangerous, since overdoing it will definitely make someone worse. And there is an underlying assumption that it is the exercise itself that is curative (which I disagree with) and a premise that it is fear of activity that is causing us to be ill (which I passionately disagree with). “Be as active as you’re able to be without hurting your condition” is fine advice. “Be active no matter what your instincts tell you” is a very different message, and a potentially dangerous one.
As an example, Elizabeth’s doctors are saying that “exercise is the best medicine” and clearly encouraging her to do more (I experienced much the same thing myself, even at my absolute lowest when that was a TERRIBLE idea). While at the same time, it sounds from everything she’s written that her current activity level is already causing her crashes, and that what she does on her most active days is not a sustainable level of activity right now. So the emphasis should really be “do less, do less, do less” for her right now, not “exercise, exercise, exercise”. I think the key elements about respecting limits often get underplayed or overlooked, and that the people prescribing exercise to ME patients don’t often fully understand the dangers if it’s approached improperly. They just see “you’re not very active right now” and automatically assume that you need to be encouraged to do more, when sometimes less is the real key to healing.
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[…] my summation of the visit to the Chronic Fatigue Clinic changed in tone a little when I received the paperwork and called to make a follow-up appointment. […]
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I’ll have to take a look at The Pain Survival Guide. Interesting that the doc used to work with Jon Kabat-Zinn, I recently took a class about mindfulness based stress reduction based on his technique.
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[…] here on out, you should work on treating the symptoms.” In other words, See ya! Even when the chronic fatigue expert spent ten minutes with me after I waited 8 months for an appointment and sent me on my way with […]
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