physical activity & exercise

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GET not working

Postby Valentijn on 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:
Re: Old patient harmed by exercise programs

Postby Jessica Bavinton on Fri Aug 16, 2013 1:46 pm
Dear

Valentijn 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?

Dear Valentijn

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 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?
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'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.
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.

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.
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.

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?
Valentijn
 
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Re: GET not working

Postby megadishu on Fri Aug 16, 2013 9:37 pm

Having lived with ME for now 8 years, my personal view is that in no way should anybody try to exercise.

The Pacific University in USA have published extremely interesting reports from in depth testing done specifically on people with ME. The testing has been closely supervised including taking blood, before and after.

To date they have found many people with ME just by standing up are exceeding their anaerobic threshold and are potentially damaging themselves. I am now using a heart monitor watch and strap 24 / 7 to try to help slow me down as I constantly relapse. I have read several articles using google and pacific university and ME / CFS as search words. Good to use CFS as many folk in the US use CFS instead of ME.

Please have a read as it is clearly explained and you can estimate your anaerobic threshold, mine is about 106 bpm. Having pushed myself and relapsed constantly over recent years I am determined to put my health first.

Can I please ask all contributors to use short paragraphs. People with ME are usually overwhelmed by huge paragraphs and lengths of text. It is exhausting to read.

I saw a quote that said "even being animated makes me sicker" referring to ME.

Someone with ME may find that physically, emotionally and mentally excess and the excess maybe getting out of bed, listening to music, talking for 10 mins on the phone, exhausts them. I have too much personal experience including hand muscles hurting after peeling sprouts one Christmas!!! When I overdo it talking I start to sound drunk, cannot think, or focus.

In my opinion the word "exercise" should not be even associated when talking about people living with ME. The word itself conveys something much much bigger and is dangerous, misleading and inappropriate. I am lucky then when my dr tried about 6 years ago to refer me for Graded Exercise Therapy, luckily our Berkshire PCT only had £1,000 for CBT and GET for west Berkshire ... That is for everyone in west Berkshire for the year!!!! There was no money for me, thank goodness.

CBT is useful when you are horribly ill as for some reason it is quite difficult finding overnight that you cannot walk, speak, eat, stand, sleep, lose your job, over 2-3 years lose friends, your social life, ability to do anything except vegetate ... So mentally tools can help. I had CBT years before for childhood abuse so was happily "tooled" up.

Interestingly sitting, just typing this has raised my heart rate to 103 bpm literally I am at my limit!!!
megadishu
 
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