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Saturday
Mar252017

Chronic Fatigue Syndrome/ME diary, part 2

This is a continuation from my first blog post (multi-entry) about my Chronic Fatigue Syndrome/Fibromyalgia/ME pain/weakness condition, which started two years ago. Figured I'd start a new blog post entry instead of continuing to add a bunch to the long first one.  

March 25, 2017: Alcohol, Hyper-Sensitivity, Gradual vs sudden onset thoughts 

Hunger/alcohol: Haven't had any taste for alcohol/beer for long time. Too much malaise to have much of a hunger for anything generally. Generally feel the malaise of when you have a cold and nothing tastes good. Alcohol/beer generally tastes very bad. Going on 10 day boat vacation recently, it was very depressing that I couldn't even enjoy having drinks, and really barely enjoyed the food. Just sat around on the boat, reading. I did have a few drinks (mostly the fruity ones; those are more palatable) and I still do drink occasionally, but it is more out of a habit and desire for normalcy and for social reasons than enjoyment.

The "high" itself isn't the same, either; brain feels much more sluggish and physically feel a bit repulsed by it, and I pay for even a small amount of drinking or the occasional smoking of weed much more the next morning; body is physically sore, very tired, stomach hurting from drinking. Why do I still do it at all, then? Good question. I talked with another sufferer of this stuff, someone with more extreme symptoms than me, and he said he had to give alcohol up completely. 

Pain/sensation sensitivity: Overly sensitive to everything, and that includes being over-sensitive to the sensations inside my body. When I lay in bed, I can sometimes feel the thump of blood pumping at several points in my body; my heart, my neck, my arms, my legs. It's very uncomfortable; it is maddening sometimes. The off-kilterness of the rhythm as the blood pumps means that the pulse hits certain areas a split second after the areas closest to the heart. There are also other sensations in my chest, the weird electrical buzz feelings, that I wonder if they're just me being super-sensitive to activity there. 

I had realization that the feelings of anxiety I get sometimes are actually not anxiety; it's just me feeling these pulsing sensations in my chest, being much more sensitive to that activity, which is a very similar feeling to anxiety; tightness in the chest, a weird sensitivity in the chest. So in other words, I think these physical sensations, because they are so close to the sensations of anxiety, that we think we're having anxiety when in fact we're just associating these hyped up physical sensations with emotion that isn't necessarily there. Ever since realizing that, the chest/blood sensations and feelings like anxiety in my chest have been easier to deal with and differentiate. Not that it helps that much; it still feels exactly like anxiety, it just doesn't really have the mental aspect to it; just a body anxiety. But realizing that helps prevent the mind from jumping onboard and thinking "Oh I'm anxious." 

It reminded me of Molly sometimes saying her stomach hurt in a way she associates with nervousness and her wondering what she was anxious about to cause the nervous stomach. And me pointing out and wondering, "Can't it just be your stomach issue coming first and you assuming it has to do with nervousness? Who says the anxiety has to come first?"

App work: I won't go into too much detail, but I made some progress on the application/database idea. Talked to some high-up people in the community. One high-up researcher said it was definitely a good idea, and that someone had done something similar for autism once; it was just a matter of making sure no one else was working on something similar so you didn't waste your time. This is motivating to me to get on this. I'd really like to contribute in some way, and this would be something I'd be passionate about (really mainly angry/frustrated, but that's passion, too) working on.  

Gradual vs sudden onset: I was thinking more about whether this condition came on suddenly or gradually. It's strange how it's so hard to say. I initially said it was sudden, because I first noticed the main symptoms when I tried to go for a run one day and I found I had no energy. Then the pain started not long after that. But after thinking about it more I think it was more gradual. I still think the major symptoms of having zero energy and the pain came on rather suddenly, but there were other indicators that show this was a build-up in many ways. A few examples of things I was piecing together:

  The intestinal pain I'd been having for 2-3 years preceding that. There was a lot of weird pain and discomfort, enough that I 1) went in to get a bunch of tests, including a colonoscopy, 2) gave myself a hemorrhoid trying to shit when I felt pained/constipated (before I realized trying too hard is bad to do), 3) at one point I read about chronic intestinal bacterial overgrowth (CIBO) affecting your energy levels and went in for CIBO test (I need to confirm that was actually before my major symptoms; my memory is shot and everything is a jumble now).

  A weird episode where I went for a run, a few months before my major symptoms, and I got this weird pain in my leg that I'd never experienced before, and I had to limp home. That pain was kind of similar, though much more extreme, to some pains I now get in my legs after working out or just randomly when I've got more pain than usual. It's a sharp, very localized pain in the middle of the thick muscle of my lower leg. Like something snapped in there and is very wrong.

  I remember several instances in the months leading up to my major symptoms of feeling abnormally weak. I used to do 20-40 pushups in the bathroom of the poker room I used to play at, when I'd take a break. I remember feeling like I had no energy, and wondering if it was because I wasn't eating right or because I hadn't gotten enough sleep. Like just sapped. 

  I remember being very weak doing random things. I sometimes lay in bed and readjust the covers from laying under them, instead of doing it from above. So it involves me lifting the covers up and moving them around, trying to center the sheets/covers. And I remember being very worn out by this several times, to a weird degree. This was when I was still able to do quite a few pull-ups and was in pretty good shape, so it seemed very weird to me. I almost made a tweet joke about how: you think you're in shape until you find that just making the bed is tiring, or something like that, can't remember. 

All this stuff makes me pretty sure it was just a gradual build-up, and then a sudden onset of the major symptoms. Perhaps it was only "activated" in some way by the food illness in Panama; maybe it's this way in a lot of people but it gets kicked on by a recent illness. Just thinking out loud, no idea. 

Osler's Web: Reading this book, Osler's Web, which is a book about CFS/ME. Very good read so far. The case studies with people's histories are very interesting; haven't been able to find many detailed case studies online that show the onset of people's symptoms, so that was very interesting to me. 

Dental work: One reason major pain was getting a couple fillings. I was in pain for weeks, not able to chew on that tooth as there was so much pain caused by pressure on it. Saw the dentist twice, he said everything looked fine (but did say if it kept bothering me they could dig out more and do it again, or else get a root canal to kill the nerve. I told him that it was probably my fibromyalgia-type condition that was just exacerbating my reaction to it. It has gotten better, but it still hurts to put any pressure on it and it is super sensitive to hot/cold. But basically I've gotten used to living with pain/discomfort, so in that sense it doesn't even matter to me. 

Kind of related to the dental work: when I got these fillings, the lymph node behind my jaw on that side swelled up huge, and was very uncomfortable. Still is a bit. I feel like those lymph nodes are related to the sore throat-type symptoms and throat-randomly-closing-up things I've had going on. When I press on that lymph node it feels like it connects with my throat, and the sensations kind of match up. Just a hunch, though. But reading that Osler's Web book, about all the sore-throat/cold symptoms has me wondering what the role of the lymph system is in all of this. My symptoms in that regard have been relatively minor compared to others I've read about, though. My symptoms in general are relatively minor, comparatively, though; many people are completely struck down by this stuff. (Does make me wonder if the vegetarian/vegan diet is helping, which I've seen other people say, but of course there's no conclusive stuff out there on that.)

Fatigue: I'm tired all the time. That's just standard. I feel much more energetic when I go to bed than when I wake up or throughout the rest of the day. It doesn't even really matter much how much sleep I get; I feel the same the next morning anyway. I find that I also can't really sleep that well; I find myself getting up early and not being able to get back to sleep. And in some ways it's also mental because I feel like: I'm going to feel tired/horrible even if I manage to get an hour or a few more hours of sleep, so I might as well just get up. Relatedly; I like the standing desk at work because when I stand up, I am not in danger of falling asleep.  


4/13/17 Thoughts on cognitive issues

I've had a good amount of negative cognitive effects from this CFS/ME condition. They've gotten worse over time, it seems. In the first year, since I first noticed my major pain/weakness symptoms, I didn't notice much cognitive stuff. Mainly just depression and some anxiety, which I chalked up to not exercising as much (which I've in the past used to combat my natural levels of anxiety/depression) and also the obvious depressing aspect of being limited in my physical activities. 

But since the start of the second year of having the condition, it's been much more obvious that I have some serious cognitive decline. I'm still functioning (in the past year I've held down a full-time tech writer job and written a new book) but I'm much worse than I was a couple years ago. Main symptoms are: 

When there are multiple inputs/sensations/things to process, my mind doesn't handle it well. It is prone to shutting down and going blank. I struggle much more to work through ideas and see them through to their conclusion. 

I miss very obvious things occasionally, almost as if I have a gaping blind spot in my cognitive functions. (For an instance of this, see the poker hand situation I wrote about in my first blog; there have been quite a bit of things like this.)

Besides the big holes, there are numerous small things throughout the day. I'm a writer, and know my capabilities. I frequently get done writing something now and find that I have missed several obvious words that I thought I'd typed but aren't there; that never used to happen to me before a year ago. My mind also often goes blank when looking for a word, which also is new. 

Long story short, I feel much less smarter today than I did 1.5 years ago. Just foggy/blank an increasing amount of the time. I'll also say this is very similar to the kind of mental fogginess I've had when sick with colds/flus, and I have no doubt it's related to that kind of physical malaise. 

Sitting in a work meeting today, my mind was especially "foggy" and I found it very difficult to grasp what people were talking about. It took a great effort to focus on people's words and follow the threads of thoughts and tie them to something tangible. 

I'd been trying to reconcile the fact that I've been intellectually quite productive but also, in many settings and circumstances, feeling confused/blank. It makes sense to me now considering the kinds of things I'm working on. Most of the work I've been successful at (writing a book, doing technical writing) is self-directed and completely dependent on me doing it and finalizing it. Although I'm diminished, I can still see a project through with enough thought and edits and get to a good outcome. But for other projects/jobs, that involve real-time/quick action/feedback, I'm dramatically declined. I wouldn't be capable of doing extensive real-time/responsive work. 

Just wanted to share this as it was an eye-opener today because I hadn't made that realization of how I could be high-functioning while still dramatically cognitively declined. Fortunately I'm high-functioning as these conditions go; I've been reading a lot about the condition, and there are people who go from being accountants and math teachers and other high-functioning people to struggling to do simple arithmetic. The book Osler's Web talks a lot about the various cognitive tests they did on CFS/ME sufferers in the 80s and how dramatically some of them declined. 

The interesting thing I learned from Osler's Web is how prevalent the cognitive issues are in CFS/ME. The bullshit name "Chronic Fatigue Syndrome", which was created by skeptics of the disease at the CDC, is even more anger-inducing when you realize that even back then, the cognitive aspect of this condition was the most commonly cited symptom, even more than muscle weakness/energy-loss. 

 

4/16/17 - Cognitive blind spots

Just a random happening that to me was a good example of the kinds of mental blind spots that happen way too frequently. Was walking in the local Rhododendron Garden, which is (obviously) filled with Rhododendrons. There were a bunch of plaques in front of different trees that said, like, 'R. Nestucco.' I stared at a plaque for a few seconds, and said something like, "The 'R' stands for the technical name of them. I can't remember what it is." And my dad said, "It stands for Rhododendron." And I was like, of course it does. But I had sat there for several seconds wondering about what latin name or other type name it might stand for, despite how completely obvious that is. It's like a blind spot. 

 

4/26/17 - ESR/sed rate results, Doctor's visit, autism, alcohol

Just saw my GP for first time in 8 months (I've only seen him like 3 times total, mainly was using him to get referred to neurologists and couple other specialists), just to get some basic bloodwork and some tests I'd seen mentioned as interesting/worth getting for CFS/ME symptoms (like sed rate/ESR). Conversation quickly turned to how doctor thought I was somewhat autistic and recommended me seeing a therapist to learn how that might be impacting my experience of the symptoms.

I have absolutely zero stigma about autism and do actually believe I am somewhat autistic, just highly-functioning, so I have no problem with that part. But I have no clue how that is related to my situation or why he'd bring it up in that way. I mean, I haven't seen a doctor in 8 months and am fairly resigned to having this mysterious physical/cognitive condition that nobody really understands. And all of my reactions are normal to me; it's a depressing, vicious condition that you could compare to being turned into a sort-of zombie.

Not really knowing what he was getting at, I said something about how I didn't think it was likely to be a factor, if he was implying that my autism made being obsessed/abnormally focused on my condition a factor. I didn't feel like I was abnormally focused on anything (also pointed out fact that I hadn't even seen a doctor in 8 months).

Then he got huffy and said that wasn't what he meant, and that we often had miscommunications when speaking, which was (I'm paraphrasing here) one of the reasons he thought I was 'on the spectrum'. I didn't have the presence of mind to ask him to clarify what he meant, as I was kind of flustered by the weird train of the conversation, but I will send him a message as I still have no clue what he was talking about or how it was relevant.

He finished up with assuring me he's seen "many" people with CFS symptoms and that he was knowledgeable about the disease. This despite the fact that he's never seemed knowledgeable at all about the disease from my perspective, and seemed perplexed when I first went to see him for it.

It's been interesting experience reading Osler's Web book from 1990 about how disrespected Chronic Fatigue Syndrome sufferers were in those early days of the disease being reported. I recognize this is a pale shadow of what those people went through, but still seems to me that the dismissiveness is still there. All the doctors I've talked to, I've got a sense of complete disregard from them. I just feel they've been taught to pay lip service to the disease even if they are skeptical. I still get the vibe that doctors think "CFS people are trouble and a mess and probably a bit crazy so just send them on their way as quick as you can." And it is understandable, of course, for a disease that has no markers. I felt the same way hearing about these conditions before I got it; it is hard to believe that modern science can't find reliable indicators for a condition this serious.

Does raise a random idea in my mind: what if it's true that autistic-spectrum people are more likely to get CFS? What if high-functioning autistic people getting CFS was a reason CFS was associated with high-functioning people back in the day? With it being called 'yuppie flu' and being associated with rich people. Just a random thought. (In actuality, it's much more likely the case that poor/ignorant people just don't have the confidence/motivation or knowledge to seek out treatment for these conditions, and mostly just drop out of society and become homeless. I've seen one theory that CFS is a hidden cause for homelessness, which makes a lot of sense to me after experiencing it; I can see just dropping out of society and not being able to do anything, if my symptoms were a little worse and I didn't have a support network.) This is the kind of theoretical association it'd be interesting to probe with a big-data approach to gathering sufferer data. Along with a slew of other random data. Somewhere in all that data might be clues.  

I just saw my lab results for one of the tests from the visit. I got a 1 on the sed rate (ESR) bloodwork. Normal range is 0-15 and apparently a low sed rate is one of the most reliable indicators for CFS there is. I learned about it in Osler's Web book and that's what got me to ask for it. Here's a quote about it (got this from a post here http://forums.phoenixrising.me/index.php?threads/low-sed-rate-hyperviscosity.14308/):

According to hfme.org, Hyde also mentions "hyper-gammaglobulinemia and hyper-fibrogenemia" as causing low ESR: "An unusually low sedimentation rate of 3 mm/hr is common in M.E. ESR rates as low as 0 have been documented in M.E. patients, and levels of 1 and 2 are very common. Dr Byron Hyde reported in 1989 that, "To my knowledge, there are only five diseases that have a pathological low sedimentation level: Myalgic Encephalomyelitis, sickle-cell anemia, hereditary sperocytosis, hyper-gammaglobulinemia and hyper-fibrogenemia." - (http://www.hfme.org/testingformesummary.htm)

Here's another quote about it:

ESRs approaching zero are characteristic of trichinosis or chronic fatigue syndrome (CFS). [...] The ESR in CFS is also extremely low, approaching zero. Utilizing this point, if a patient is presumed to have CFS and the ESR is in the normal or elevated range, then an alternative diagnosis should be entertained.

It's surprising that this isn't part of some sort of standard panel of tests ordered for CFS/ME sufferers. Not that it helps, I guess, but interesting to know. A tantalizing clue. Seems like the focus should be on studying what causes ESR to be low in these other conditions. Seems like if you could understand that, you might be on right track to finding a cause. I imagine someone must have looked into this; hard to believe someone wouldn't have.

I'm completely off of alcohol. Malaise is at an all-time high. In last couple months it's been very bad. Can't even stomach a little bit of alchol. Tastes like poison. (And most foods have no interest for me; eat because it's time to eat or out of psychological habit, not because I'm hungry or craving anything. Food can still taste okay when I'm eating it, though.) Interestingly, I've read that alcohol sensitivy/intolerance is also a key hallmark of the disease. Strange that it took so long to become pronounced in me. I hope the malaise does not get much worse than this; I'm very, very miserable as it is. 

Also saw some news about salt potentially being a way to treat CFS symptoms, in keeping with one philosophy that CFS/ME is a disorder of low blood volume/pressure. http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing/diet-and-chronic-fatigue-syndrome-mecfs-patients-with-orthostatic-intolerance 


5/6/17: Temporary relief; Random thoughts on cause

So strange. A few days ago, out of the blue, I felt the symptoms lift dramatically. Went from being in deep malaise and super-low-energy for several weeks to being very malaise-free and having some energy/power. It was like day and night. I've read that there can be variance in symptoms but this is more an extreme a chance than I would have expected. Just to potentially keep it going as long as possible, I'm taking the same set of vitamins and trying to replicate the same diet for a while. Also I've been eating less soy last few weeks, just coincidentally, so going to stay off soy for a while, see if it has any effect.

Just such an amazing difference to not feel absolutely horrible. Don't feel great, but by comparison with last few weeks it's just such an amazing thing. Actually remember what it feels like to feel normal. To lay in bed and not feel horrible, and actually feel like I can get back to sleep and relax. To have actual hunger for stuff and have stuff taste good. To be able to have an alcholic drink and not be made sick by it. Quite a reprieve.

Another couple things I noticed last few days, while I was feeling better:

  • Tongue actually looks normal. It's looked absolutely horrible the majority of time since these symptoms began. Fuzzy and covered with white/gray stuff. Last few days looked like a normal tongue.
  • Actually felt like I could exercise. Could hold my fist tense and not tremble. Could actually imagine punching something and not feeling like my arm would shatter and be super-painful. 

Random thought I had on causes; seems like everyone looks for discrete causes/origins for these conditions. But what if these conditions are just a common state that has many origins? That a multitude of stressors/factors leads to this weird state. This would explain why there seems to be sudden onset, and also slow onset, and explain the variety of symptoms, and why it's so hard for people to get on the same page about symptom sets. Probably kind of obvious to some, but just thinking out loud.    

 

5/11/17: I've been sick; Dental fillings; Meeting local sufferers; Thoughts on application idea

The upswing didn't last long. Been sick last few days. (Molly was sick, too.) It's so hard to tell where the CFS symptoms start and where sickness begins. My throat is quite sore, but my throat is often sore, but definitely more so. Also have a pain in my inner ear area that is quite painful when I cough or blow my nose or sneeze. It feels infected in some way, and it hurts to poke in my ear. It's unlike anything I've experienced before and feels like something is very wrong, but of course everything feels a lot worse so it's very hard to know how serious things are. (Doctor I saw today said it was probably all just a virus.) Also a bit strange; I've barely coughed much at all but there has been blood in my mucus when blowing my nose or sneezing, and that started almost immediately.

Strange but it seems like the CFS prevents the cold symptoms from being that major. I experienced this with strep throat; it seems like the CFS might be "dampening" the symptoms in some way. I don't really have many other usual cold symptoms (if that's what I have); not much head congestion, no fever, just more of just a ramp up from my usual symptoms. It feels more just like my typical symptoms got a bit worse. It's almost like the CFS keeps you in a fairly constant state (i.e., feeling pretty consistently shitty) no matter if you get sick or not. I've also heard that people with CFS don't get sick as often, and it's been said that getting sick with one thing protects you from getting sick with other things. (I have no clue if that's a real phenomenon.)

Regarding the autism stuff in last post: seems obvious in hindsight, but the doctor was probably just referring to fact that my desire to understand the disease was getting in the way of me seeking treatment for the symptoms. He probably was confused/alarmed by my statement that I wasn't taking any medication in order to "keep my symptoms pure" and that understandably would sound a bit weird, but he wouldn't have known that I was thinking about creating a CFS/ME program. In his follow-up response, he said: "I just thought the autistic spectrum disorder may affect your cope with these inadequately explained physical symptoms that are happening. I don't think is an underlying cause." Not sure why I couldn't see that earlier; it's super obvious in hindsight.

Speaking of cognitive issues. Was doing some measurements around the property yesterday to determine something and was trying to do some light math/logic stuff, and my brain just wouldn't work. It's like it just wouldn't do the simplest spatial manipulation. Made me wonder how I would fare on a math test. My verbal stuff is still quite good generally, but I'm confident I would be garbage on math/logic. It was very frustrating yesterday as I sat there trying to wrap my head around something very simple.

I also realized that my recent couple month downswing was probably directly related to the dental filling I got. That's when the pain and much-more-swollen lymph nodes started up and when I started getting worse malaise and brain fog. I'm supposed to have 3 more fillings done but this experience has made me decide to put that off as long as possible. I still have significant tooth pain where I got the fillings (hurts to cold and when I bite down on it directly). The dentist did a followup a week after and said it looked normal.

Had a very interesting talk with Dr. Nancy Klimas, a researcher/clinician in Florida who's been working on CFS and Gulf War Syndrome for ~20 years. I learned about her work in book Osler's Web. I used the opportunity to ask her a bunch of questions I had about the disease that it had been hard for me to find reliable/knowledgeable answers to, about the state of the research and current thoughts/theories on it. Was very enlightening and I want to put up a CFS/ME website so I can put that interview on it.

Thinking more and more about the database application. I've been encouraged by a lot of people at this point and I think it would be a good move. My main fears now: what if I'm not cognitively fit enough to embark on such a mission? What if I lack the energy (mental and just physically) to work hard and long on this like it really requires? To be honest, the thought of working on anything these days is daunting. It takes all my energy to work on the fairly easy tech writing job I do now. I've had to really cut down on my extracurricular activities, including my own company/publishing stuff, just because I've been too out of it. So that's my main fear.

On a brighter note, maybe this current sickness will pass and I'll return to the better state I was in for a few days after the most recent major malaise lifted.

Oh, I also met two local guys recently who are CFS/ME/Fibro sufferers and we talked about our symptoms and experiences. Neither person matched my symptoms well; one was more just post-viral fatigue symptoms and not pain, and the other one was more fibromyalgia symptoms with localized tender points and pains (and not the overall body pain and sensitivity that I have). Encouraged me even more in the fact that an app like I'm imagining would help me quickly find people with very similar symptoms to me, whether it was for just meeting them and talking symptoms/treatments/experiences, or for comparing these symptom sets in a more formal way. 

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