GET not working
Posted: Fri Aug 16, 2013 5:17 pm
I'd asked a question on another thread but then it got locked down after getting a response, so I couldn't respond to it. Maybe because someone else started the thread? But I'd really like to know why things aren't working for me. Here was the post I made and the response:
I have had other things investigated, as much as possible. Aside from elevated ESR, CRP, liver enzymes, and blood in my urine (probably from inflammation), everything has been pretty normal on the standard tests. Are there other tests which are indicated for someone with pretty typical ME/CFS when CBT/GET fail to help at all?Re: Old patient harmed by exercise programs
Postby Jessica Bavinton on Fri Aug 16, 2013 1:46 pm
Dear ValentijnValentijn wrote:Thank you for the information. Regarding the above quote, I'm wondering how we can tell if it's going to be a temporary increase in symptoms, or an ongoing deterioration?
Due to the delayed nature of post-exertional malaise, I often don't even know that I did too much until the next day, even with very small amounts of extra activity. And I've had episodes where I couldn't even sit up for a week or three, and there was no way for me to know if this was going to be a permanent change in my condition, which was quite scary.
I also tried CBT/GET for about a year with no improvement. I wasn't pushed to do too much, but my condition deteriorated steadily during that time. But maybe that would have happened even without GET?
Firstly, if your condition deteriorates in the presence of treatment and remains unexplainable, it is always worth undertaking a medical review to see if there are other factors that explain your deterioration.
I'm afraid my deterioration has been pretty consistent thus far, aside from making some progress when getting my orthostatic intolerance treated and trying a supplement mix which only helped for a few months. I'm confused about the references to deconditioning - when I've been bedbound for 1-3 weeks due to orthostatic intolerance, my threshold for activity was temporarily quite a bit higher when I was finally able to sit up again, compared to before the episode started. It seemed more like the prolonged rest had given me some additional energy, though it ran out after a few days. I'm also not sure how deconditioning would explain the drastic (albeit usually temporary) remission which I and some others have experienced. When starting on a supplement mix I went from being in very bad shape one night, to being able to dash up the stairs the next morning without anything worse than the typical muscle soreness a healthy person would have - which felt very different (and so nice!) compared to my typical ME/CFS reaction to stairs.Setbacks, or decreases in function/ accompanied in increase in symptoms, tend to be temporary and not a permanent change (even if they last a long time). They may stay permanent if nothing else changes: e.g. even in the total absence of a condition or disease process, if someone goes to bed for a year and doesn't ever get out, then permanent changes will start to happen to the body. The body will weaken considerably and contribute to significant symptoms. Likewise, if someone sits in a chair for 2 weeks, physiological changes will happen to the muscles, movement and body systems - this would be permanent unless the person in question actively addressed these issues.
I did this during the year or so I spent doing CBT and GET. It helped to break down my activities and asses how they were affecting me, and also to manage my symptoms better by resting for 60 minutes or so after 5 minutes of light household activities. But I never got to the point where I was able to do more - on the contrary, my threshold for triggering PEM continued to slowly get lower and lower.Analysing your activity, using an activity daily, can be a helpful start - once you may have tried this already, perhaps, but a useful tool. By noting the relationship between activity and symptoms, you can gain some control and then find ways to gradually build up again.
My sleep has been quite good, since I found a supplement to help with my brain being over-stimulated, and some other things to reduce pain. A sleep study didn't turn up any abnormalities either. I also haven't had any anxiety issues yet. Maybe there are infections - I do have a chronically enlarged lymph node (right tonsil) and other lymph nodes (armpits, neck) can get swollen and tender after too much activity. But these are very common ME symptoms (in the CDC definition even), yet the general approach seems to be that we shouldn't be tested for infections unless there's something even more unusual?Of course, there are so many other things that can impact on symptoms, it's not just activity: sleep, infections, anxiety, etc - so getting to the likely cause is important in working out how you can build up again.