This is a post about some recent health issues I’ve been having. I currently suspect I have CIDP: chronic inflammatory demyelinating neuropathy. I am not certain of this, but I am confident. [update: I now believe I have an illness that is in the Chronic Fatigue/ME/Fibromyalgia class of conditions] CIDP fits all my symptoms (including some unusual ones, like pain caused by applying pressure on the body). And it is also known for being hard to diagnose; this fits all the common medical tests I’ve had thus far being normal. And it’s known for being rare and fairly unknown: this helps explains why no doctors have brought it up as a possibility to me. I am seeing a neurologist next week, so hopefully I’ll get some more answers soon.
A year and 4 months ago, I was in the best shape of my life. I could easily run four miles at a pretty good rate, I could do ten pull-ups pretty quickly, I could do 25 push-ups easily.
A few weeks after that, I noticed that my muscles were becoming weak. I initially noticed this when running; my legs felt like blocks of wood, and it felt like they had no “push.” I also noticed when I did push-ups that they had become much harder.
Around the same time, I also noticed other weird changes in my body. Not long before I noticed the above, I had went for a run and had gotten a strange single spot of pain in my leg, unlike anything I’d ever had before, that caused me to stop running and limp back home. I noticed that I was sweating more than usual, just sitting around doing nothing.
Not long after noticing the weakness, I got pain. Not intense pain, more like an aching pain in my arms and legs that was not like any pain I’d ever experienced. It was not like workout pain; it felt more like my muscles contained some slightly corrosive chemical that burned slightly, constantly, but especially after working out.
I saw some doctors, including a neurologist, a few months later for this. I got all common tests for neuromuscular disorders and common causes of weakness (vitamin levels, common diseases, CK levels after muscle exertion, EMG) and all showed normal. The doctors were not and have not been very helpful and didn’t seem to take it seriously seeing as I was still getting around and functioning okay. While they didn’t come out and say it, I assumed they were mentally placing me in the ‘Chronic Fatigue Syndrome’ bin, which is just a catch-all category when doctors don’t know what’s causing general pain and weakness symptoms. Or else they thought I just had mental issues. Based on the lack of concern and the lack of answers, I realized I would have to be my own advocate and do my own research.
For the first six months, I tried to work out, although it was difficult. I didn’t do it much (like running once every couple weeks and lifting some light weights or doing push-ups every few days). I figured the more I could stay active, the more it would help combat whatever was happening, although I wasn’t sure that was true. My muscles definitely hurt a lot more after exercising and nothing I did felt good.
Around October of last year (6 months after noticing weakness), the pain got pretty bad. It felt like my body was going through a massive change. My muscles became painfully tight. I had to sleep with pillows under my legs and arms because it hurt for them to be completely outstretched.
The extreme pain went on for a few weeks. I thought it was building up to me being an invalid of some sort. Then it ebbed slowly away, as if my body was adjusting itself to whatever process was going on.
It was also difficult to do very simple things. It was hard to push myself up to a standing position. It was hard to climb stairs. I was more clumsy than usual; I kept tripping and bashing body parts into things (which hurt even more than usual). Even very simple things were difficult: for example, using my fingers to operate my phone required a weird level of exertion and was uncomfortable.
I also was losing muscle/fat mass from various areas of my body, most noticeably from around my ankles, wrists, feet, and skull. My bones were much more exposed. And my increased general overall pain meant that any light hits to these areas were quite painful. For example: stubbing my toe felt multiple times more painful than it did before.
I was frequently trembly and shaky. My arms and hands would sometimes shake doing simple things. For any muscular exertion that went on for a few seconds, I would get shaky and weak. I had strange, uncomfortable sensations (for example, a feeling like there was an electrical "buzzing" feeling radiating through my chest).
Also, my body became sensitive to any mechanical pressure. Pressing lightly on any part of my body was moderately painful. (When I first realized this, I recalled that, not long after I first got muscle pain and weakness, I’d gotten a massage and found it very unpleasant and uncomfortable, and that incident made more sense in that context.)
I have not gotten any answers from the few doctors I’ve seen. The length of time it’s taken me to book appointments and get referrals has been frustrating. I’ve only seen one neurologist, and that was about 8 months ago. I started seeing a new general doctor (due to last one seeming unconcerned about me) a few months ago; that appointment took me more than a month to get into. After that, I had to schedule a new neurologist visit, which I had to wait for for two months; I’m seeing that new doctor next week.
Since then, nothing much has changed. My muscles are essentially always sore with that same strange “corrosive-chemical” feeling. It’s usually very difficult and painful to climb the stairs and get up from chairs and the bed. (This sometimes gets better throughout the day as my body gets used to the exertion.)
Even walking has gotten quite difficult and painful; it’s gotten to point where I dread even doing that; the feeling that my legs are energyless blocks of woods, the pain, the uncomfortable sensation I have of every single little muscle movement. I went once to the gym a few weeks ago and did some stair master stuff, but aside from that the last few months I have not exercised except for light weight lifts and home and stretching. The thought of running or riding a bike, over the last few weeks, has been hard to fathom.
We went to L.A. and walked 5-6 miles last week, and after that my muscles have been the most painful and weak they’ve ever been.
I also noticed a few months ago that my joints are very creaky. Just climbing the stairs, my knees make a horrible, quite audible, spongy sound that I’ve never had before the last few months.
CIDP is known as being basically a chronic, more subtle version of Guillain Barre Syndrome. In these diseases (and a bunch of other similar neuromuscular diseases), your body’s immune system (white blood cells) starts to attack the myelin in your muscles, thinking it is a foreign body.
Myelin is what covers your nerve fibers and helps electrical signals travel quickly and efficiently from place to place. When the myelin is reduced, your electrical signals are not sent as they should be, causing a lack of control of muscles (i.e, weakness) and pain.
Why do I think it’s CIDP? A few reasons:
- It’s known for being hard to diagnose. Because it’s fairly subtle, it is often not caught by many of the common neuromuscular disorder tests like nerve conduction or CK exertion tests. It progresses slowly. It can present in many ways with many different symptoms. They say the average time between symptoms and diagnosis is several years. Many doctors are not knowledgeable about it, due to it being rare. This fits my own experience of not having any answers from the tests.
- It is a problem of nerve signal communication, not muscle loss. Some other diseases I researched (like Pompe disease) matched many of my symptoms but involved actual muscle degradation. In my case, most of my large-group muscles (arm, leg, chest) seem still quite present and large (main exception being loss of fat/muscle around my wrists/ankles/head) but I do not feel like I can access their strength. This makes sense if the problem is one of signal communication and not actual muscle degradation.
- My symptom of having pain upon mechanical pressure to my body is rather unique. CIDP is the only disease I’ve researched as a likely fit where that is a symptom.
- The weird physical sensations (like the electrical charge feeling in my chest) are also reported by people with CIDP.
- Leading up to onset of these symptoms, I’d had bad intestinal pain for a couple years. This was unexplained and I had a rough diagnosis of irritable bowel syndrome, just due to it being unexplained. Upon having the muscle pain and weakness problem, my intestinal pain went away. One of the common symptoms of CIDP is not just pain but also numbness (which I have a little of but most of my symptoms have been discomfort/pain/weakness.) This might fit the idea that the CIDP was reducing sensation in my stomach/intestines. (Interestingly enough, since becoming 99% vegan in the last three months, my bowel movements have been dramatically improved, so it's possible it was at least in part lactose-related.)
- Guillain Barre and CIDP are often associated with recent instances of infection, both viral and bacteria. Basically: as the infection is fought and/or destroyed, your immune system mistakenly starts to attack your myelin, thinking it’s part of the same infection (at least that is a common theory that explains the association). This could fit with my own case; a few weeks before onset of my symptoms, I had gotten food poisoning in Panama (most probably from some bad chicken). Campylobacter jejuni is the bacteria most frequently associated with food poisoning, and it is also associated with Guillain Barre and CIDP.
I’m finally seeing another neurologist next week, and I plan on being forceful in having them order all possible tests that might help diagnose this. I think it’s possible my symptoms have gotten significantly worse and will now show up more clearly in possibly the nerve conduction test they do. But it’s possible I will once again not have any tests show anything, which will be frustrating. I’ve heard it said that for some hard-to-diagnose cases of CIDP, the only way to know if you have it is to see if you respond to the hormone treatment.
It’s definitely frustrating to feel like I’ve become an invalid and not yet have any answers. I just want an answer.
Possible mental/memory issues
More scary to me than the physical symptoms has been the possible mental and memory issues I’ve been having. While cognitive impairment isn’t a majorly reported symptom of CIDP, it does have an association. (Here’s a summary of one study mentioning it: http://www.jns-journal.com/article/S0022-510X(15)01722-0/fulltext.) Possible cognitive impairment is not hard to fathom considering CIDP affects nerves and the brain obviously has many nerves.
I’ve been aware that I’ve been pretty depressed and anxious over the last year. (Prior to that I’d been feeling the best mentally I had in my life.) This was understandable to me considering the hardship of my symptoms and how they’ve affected my general life enjoyment. And it’s also understandable considering my lack of physical exercise, which has always been my way of combating my existing depression/anxiety issues in the first place.
I’ve had an increasing amount of memory loss and mental fogginess over the past year. It was easy for me at first to write this off as just due to general depression or tiredness or anxiety but it has become harder for me to do so. A few example of things that have become more common:
- Mind going blank. I’ll be doing something and just kind of zone out and forget what I’m thinking about or what the conversation is about. I’m also often easily distracted.
- Forgetting words. I’ve always had a strong vocabulary and been good with words. Lately, I’ve been frequently taking an abnormally long time to find certain words, some of them quite common and simple words.
- Missing words when writing. Over the past year, it’s become increasingly common for me to write a sentence, then look back over it and realized I didn’t write a word or two. This is very unusual for me.
- Missing letters when I type and having to go back and type things multiple times.
- Long-lasting headaches. I generally never got headaches. Lately I’ve had headaches that lasted multiple days in a row.
I’ve had a few strange, scary cognitive dysfunction moments over the last year. A couple of the more weird and extreme examples:
I had one incident where I noticed something strange in a short story I was reading that didn’t make any logical sense. It was so strange that I went back and double-checked it several times to make sure it was really as strange as I thought it was. When I went to show it to my wife a few hours later, the inconsistency was not there.
The scariest incident I’ve had was when I was playing poker in L.A. last week. I was playing in a $5-5, $1K buy-in game, waiting to do commentary for the poker show Live At The Bike. During the course of playing in this game for just five hours, I lost $3,000. This is a significant amount for that game; I've never before lost near that amount in one session in a game that size. I was feeling a little mentally foggy but believed I was functioning okay. I believed that until the last hand I played.
It was a big pot, where I was the aggressor in the hand, and where I was (so I thought) fully mentally focused the entire time. But somehow I did not notice a) that there was a flush draw on the flop, and b) that the flush draw completed on the river. Not seeing this caused me to a) bet small on the turn with trips in a big 3-way pot, and b) pay off a large bet from a very tight player on the river, not seeing anything logical that beat me.
If you play poker frequently at all, you’ll know this is disturbing; noticing the suits of community cards is one of the most fundamental aspects of poker. It’s as basic as breathing. I was sitting right in front of the cards; they were easily visible. This was disturbing not just because of this single hand, but because it called into question every previous hand I’d played in that session and for possibly significantly longer than that.
That incident scared me more than anything I’ve yet experienced. For the time being, I've decided to not play any poker. I’m actually now avoiding doing anything that requires good mental alertness, including driving. I still am confident I am thinking well most of the time, but these strange blind spots have me worried.
In addition to getting the CIDP test, I will try to get some sort of brain scan to rule out brain issues. But I think it’s probable that I have CIDP and it's affecting me. On the plus side, if I do have CIDP, there aren’t extreme cognitive functions associated with it, so if it is that, there’s apparently a limit to the severity of the brain-related symptoms.
I saw the neurologist today. This was the second one I’d seen; saw one last November. This guy today gave me an EMG and a nerve conduction velocity (NCV) test. He said that everything was normal and he was confident that I didn’t have CIDP or any other similar neuromuscular disorder.
His certainty was surprising to me, as I’d read several articles and anecdotal reports online that said that CIDP sometimes didn’t show up on EMG or NCV tests. Some of these were from people who claimed to have been diagnosed with CIDP and who said they initially had normal tests for a while. So I'm not exactly sure what to think about that and want to look into that more.
But this doctor was very confident that I did not CIDP. He mentioned ‘post-viral syndrome,’ because I had mentioned how I had food poisoning a few weeks before. This isn’t much of a diagnosis, though: it is basically the same as diagnosing fibromyalgia or Chronic Fatigue Syndrome. These are all categories for when there are no answers; they’re just ambiguous groupings for things that aren’t understood. There are no physical tests that can diagnose them; no objective indicators. His final recommendation was: just try to exercise and deal with the symptoms as best you can.
This is very frustrating for me. To basically have become an invalid (a bit of an exaggeration but not too much in my mind) and to be told there’s no answer at all as to what might be causing it and no treatment. Not only that; there’s not even a way to measure the extreme things you’re experiencing on a test to prove that you are experiencing them.
More than anything, it’s been eye-opening to me how much is unknown when it comes to the human body and medicine. If I can feel so weak and pained, and not have it show up on any objective test, that is mind-blowing to me. It’s been eye-opening to realize just how many cases there are like mine: people with similar symptoms who are never diagnosed with anything, and who exist in a limbo of uncertainty and discomfort and pain. I think the uncertainty might be the worst part.
I’ll be honest: I used to believe Chronic Fatigue Syndrome and similar ailments were not real or were psychosomatic. I used to think: well, if it is so serious as some of these people say their symptoms are (extreme muscle pain, extreme tiredness, extreme weakness), then there must be a modern medical test that would show such things. I used to have faith in our modern medical knowledge, so much faith that I just believed all those people claiming those symptoms were either malingering or mentally ill.
Now I have sympathy for those people and now I am more humble about these things. And now it bugs me even more knowing how I used to think, knowing there are probably doctors and acquaintances who suspect the same thing about me. Pretty frustrating and depressing.
The symptoms for both chronic fatigue syndrome and fibromyalgia include cognitive and memory problems, and those match my recent symptoms, too. That’s the scariest part of this whole thing. Hopefully those won’t get worse.
I don’t know what the next step is. The doctor I saw today: his whole demeanor was basically like, “Nothing you can do, you’re not going to get an answer, just deal with it.” But I’m not going to do that. A friend recommended I see a rheumatologist, which I’ll do. I’m also going to try to exercise more; the doctor recommended going swimming, and I think that’s a good idea. (Although right now just walking a little bit every day and doing some slight arm exercises are very physically tiring to me.)
I also want to look into the idea that it could still be CIDP but yet not show up on the standard EMG/NCV tests. I have several links I almost put in here referencing that idea, but then I figured there's so much bad info online that it wouldn't be worth linking them. I think I need to find another knowledgeable person and get a second opinion. Maybe even a third.
I’m also going to start studying up on people with similar symptoms to me; I’m kind of motivated to do some real research and study on this. I’m not going to just roll over and accept living this way, if there's a chance I can find a solution. If it means I have to waste a good portion of my life studying this stuff in my free time and trying to find a solution, so be it. There's always a chance I'll figure something out and that it could benefit others.
Eating meat, researching ambiguous syndromes 7/14/16
I've been 95% vegetarian for the last couple years, and vegan for the last few months. I'm eating meat for the next few weeks just to rule out that these dietary things are a cause for my symptoms.
I am 99% confident that my diet is not to cause for my symptoms, for a few reasons. For one, the timeline of symptoms showing up and my diet changes don't line up at all. Another reason: my vitamin levels measured as completely normal a couple times, and I never showed any anemia, which is one of the main things that deficiency leads to. Also because my symptoms and their severity doesn't match any common vitamin deficency symptoms that might be caused by diet. (The closest thing might be B12 deficiency, which is allegedly somewhat common in vegans, but again B12 deficiency leads to anemia, which tests never showed I had.)
But I still want to rule it out completely, no matter how sure I am that it's not a factor.
I was reading up on fibromyalgia today. The major groupings of fibromyalgia, chronic fatigue syndrome, and post viral/infection syndrome seem to overlap a lot. They are all so-called functional disorders, which means that there are no diagnostic tests for them. In that way, they are just a catchall for all of the vague complaints people have: pain, muscle weakness, mental fog, joint complaints, non-resting sleep.
They have overlapping symptoms and it seems like someone just gets randomly placed in one or the other based on the degree of pain; fibromyalgia indicates that pain is the main complaint. CFS indicates that fatigue is the main complaint.
Post viral or post infection is brought up when there's a report of a disease not long before onset of symptoms. As happened in my case and as was brought up by my neurologist. But this seems meaningless, for the most part: you get enough people together and a good percentage of them will report some type of illness within a few weeks of any random event you pick. It's almost like doctors have picked that way to phrase the idea because it seems more confident than just saying "I have no clue what it is and you probably will never a clue, either." Also, I think it probably is done to avoid bringing up CFS or fibromyalgia, which have a stigma and which a lot of people think is akin to being told you have psychosomatic symptoms or are just suffering from depression.
8-10-16 Exercise symptoms, other thoughts
I’ve been eating meat about once a day for the last three weeks or so. No real improvement. I had a slight upswing where I had more energy and less pain for a week but then it went back to normal; I’ve been having upswings and downswings of pain/weakness since it began, though. I thought it was a super unlikely cause in the first place and was more just a desperation attempt. My trip to my GP yesterday confirmed that. He said he’d never heard of such symptoms from anything dietary-related. (Indeed, no doctor I’ve seen has ever seemed interested in my diet whatsoever, for whatever that’s worth.) I’ll continue it for another couple weeks to be sure, though.
Went for a run today. It’s the third one I’ve been on in the last month. Went for about 1.5 miles total, and also did some static push-up pose planks for 30 seconds at a time.
As I’m exercising, I’m trying to determine what it is exactly that’s going on. The pain is pretty mild: like a 1-2 on a 10 point scale. I don’t have pain when I’m not moving, generally, not lately (though I did have motionless pain those few weeks in October or so when my muscles felt like they were shrinking up and it hurt to stretch them all the way out). So the pain when I’m running is only present in the major muscle groups that are being worked at that particular moment: the quadriceps and calves.
Worse than the pain, though, is the feeling that I have no energy/push in my muscles. My leg, arm, and chest muscles still feel quite present: bigger than I would have thought they’d be after so long hardly exercising. But it’s like they have no energy potential in them. That’s how it feels. My legs muscles feel devoid of energy. They feel like blocks of woods. As I’m running, it feels like all my movement comes from close to my core: maybe my upper legs? With no real muscles functioning in the lower part of the leg, where I think I typically would be used to feeling like the power comes from.
Besides the slight muscle pain and the weakness/energylessness, there’s also just a “bad” feeling that is hard to explain. My whole life, when I exercised, there was a feeling of goodness about it. Even when I was in pain (physical or emotional) or sore from previous exercise, it still felt “good” to run and exercise. This is no longer true: exercising feels bad and uncomfortable, a feeling of malaise that reminds me of the hard-to-describe malaise that comes with being sick. (And I’ve had a general malaise since the symptoms started that makes me hardly enjoy or crave food or alcohol.)
I wonder if this is the ‘aversion to exercise’ that I often see mentioned in connection to Fibromyalgia and Chronic Fatigue Syndrome. Seeing as it’s a hard to describe feeling, this might be what people are experiencing when they suddenly just stop exercising due to these types of conditions. I’m someone who has always found it easy to push myself physically no matter how much pain or fatigue I was experiencing, so this “bad” feeling is weird enough to feel like a discrete symptom in itself. Just frustrating how so many of these things are so subtle, ambiguous, and difficult to describe.
Doing the push-up pose—just holding myself up above the ground with arms upstretched—my muscles start to tremble after just a few seconds. As with the legs, there isn’t much pain, just a little bit, less than the legs. The tiredness and lack of energy potential is the main problem there.
On the visit to my GP yesterday, he checked my body a bit for skin stuff, as he said it’s possible skin cancer could theoretically have weird effects on your body. I had always thought that any type of cancer would show up in blood work but he said that wasn’t true for skin cancer, which was news to me. Any way, he didn’t find anything (although he did a super cursory exam).
He ordered some more tests. I’m also going to a sleep study in a few weeks.
- Chronic oxygen deprivation has symptoms like muscle pain and weakness, and brain fog. Is it possible I have something preventing good oxygen absorption? This would match my feeling at night that I’m not breathing well. But doesn’t make much sense.
- Neurologist said that CIDP and Pompe Disease would both show up in the muscle work he did. But I’ve seen many things online about how those diseases can take years to get diagnosed and that some neurology tests can show up negative for those early on. Need to get more clear on that and see if anyone reputable says that.
- Need to focus on the one symptom that is pretty unusual in all of this: pain on physical pressure. Need to find other people who have the same exact symptoms as me. I haven’t seen this described that much for Fibromyalgia or CFS; those often talk about ‘tender points’ that vary, whereas mine pretty much affects my entire body.
8-22-16 Beach trip, Chiari Malformation, sensitivity
Feel so shitty. Everything hurts and is uncomfortable. Little things. Brushing my body up against things. Fumbling with utensils. I'm clumsy and little things, little pains and fumbles, are driving me crazy.
Went to North Carolina beach for a week last week. Barely got into the water. It was unbearably cold to me for most of the visit. Felt like West Coast water; too painful to get into. My sensitivity to cold has been way up, just like my pain sensitivity. I used to enjoy taking cold showers, because they woke me up quick and jump-started my metabolism. I haven’t been able to do that since I’ve had this thing.
I basically didn’t move the entire visit. I found it difficult to just walk up and down the sand dunes. Also the hot sand was of course ridiculously painful. The sun hurt; I didn't want to go out in it.
I found a new condition that had somehow been hiding from me. Surprised I’d never heard of it before. It’s called a Chiari Malformation. It’s apparently a birth defect where the skull is malformed and the base of the brain extends out of the bottom of the skull a bit, pushing up against the spinal column. Children often show the symptoms but you can also start showing symptoms when you’re in your 20s or 30s. And the symptoms are varied and show up in many different ways. And they’re very close to mine. Pain, weakness, even the weird electrical sensations in chest/body. The main difference I’ve seen is that extreme headaches are usually the most common symptom; I’ve had heaches, including ones lasting several days, but they haven’t been that extreme. But I’ve also read that the symptoms can vary so much that some people don’t have the headaches and have the other symptoms.
The only way that I’ve read about to verify the Chiari is an MRI. I’ve seen that many places. I told my GP about wanting to get an MRI done to rule this (and maybe something else) out; he consulted with the neurologist and got back to me and said he didn’t think it was necessary, as my symptoms don’t match up. This was strange to me, as I hadn’t read anything that negated me having it. I then went online to one of those medical advice sites and paid a doctor who was apparently knowledgeable (who knows how knowledgeable) about Chiari $20 to answer my question as to whether neurological tests (EMGs, NCV tests) would rule out Chiari. He said no, that Chiari is only diagnosed by MRI. So that’s weird. Also weird they’d turn me down without even discussing it more. I told my GP I was going to get an MRI with or without him, even if I had to pay 10K out of my own pocket or something, so if he wanted to help me, he could let me know.
I also corresponded with someone I’d talked to on Twitter a few months ago who has Pompe Disease. She had asked how things were going. I told her that the neurologist had ruled out Pompe and she said that I should keep it in mind anyway. She said her own neurological tests hadn’t been helpful in her Pompe diagnosis and that they’d showed up normal at first. (I have to take all these reports with a grain of salt as there are obviously so many unusual people out there.)
I’m also very much more enthusiastic right now about the sleep test and the possibility of sleep apnea. (Oh that’s another thing; Chiari Malformation can have sleep apnea as one of its symptoms, which is how I found it.) I feel like I’m not getting enough air at night. I woke up from a decent length’s night sleep last night and felt like garbage. Felt like I’d had a plastic bag around my head for an hour or something. Could barely move, body hurt, lungs felt weak, head hurt, mind slow. I have that sleep test coming up in a couple weeks (followed by a rheumatologist visit that my GP wouldn’t recommend me for and that I had to use my other health insurance to get; the insurance that doesn’t require a referral). I bought a blood oxygen sensor thing that goes on your finger; I plan on getting up at random points tonight to measure my blood oxygen levels. I wouldn’t be surprised if they’re surprisingly low.
The mental stuff is very much apparent to me now. Just feeling in a fog. Can’t focus on stuff. Miss weird things. People talk and I hear what they’re saying but I have to really focus to absorb stuff. One scary thing happened in North Carolina: I was driving the rental car in broad daylight and turned left from a small road onto a main road, and I pulled out right in front of this guy who was going like 65. It could have been a lot worse, but he had some room to slow down, and the lane going the opposite way was empty and I pulled into that while he passed and honked. Could have been a lot worse. It was weird because it was super obvious; I saw the car behind him a ways back and the view was completely open on both sides, not like anything was hidden. Was country area. Molly saw me pull out right in front of the guy and said afterwards she just thought I was being super aggressive in my driving. But no. That kind of thing never happens to me, so that’s scary to me.
It’s hard to go into work and do normal things. I’m very depressed. All I want to do is not move and do more research on this stuff. Hard to interact with people in a normal way when all I want to do is explain to them that my life as I knew it is over now and that's why I might seem a bit on the depressed side. (While at same time realizing there are obviously always people much worse off than you. But anyone who's suffered knows that cold comfort isn't good for much.)
I’ve given up on eating meat and going back to mainly vegan diet. The meat wasn’t doing anything and was more of just a just-in-case check anyway. Again, no doctor I’ve ever seen has been interested in my diet and that jibes with my own views that nothing dietary would make sense for such symptoms.
I have a plan on creating an online application/database that would be focused on people with these kinds of symptoms. A new approach to accumulating and analyzing these kinds of symptoms. It would let people get in touch with people who had their exact same symptoms. That would be good for morale, but it’d also be good for possibly finding similarities/overlaps in people’s conditions that might have been overlooked so far. My thing is unique in that I have slight pain on physical pressure basically everywhere on my body, which is not that common in all the diseases and conditions I’ve been studying. One of my long-term goals is to get that going.
8-25-16 Painful leg cramps, insensitivity to heat
I’ve had painful leg cramps my whole life. Apparently only a small % of people suffer from these. They’re super-painful; the kind of pain you would push a button to end your life after a few minutes of it. The whole calf muscle tenses up like a live wire is hitting it. Eventually it ebbs away; took me a while to figure out (pre-internet) that if I flexed the opposite muscle group, it’d quicken it going away (although for me when the pain hit it was often hard to remember which way I was supposed to flex). They usually hit in the morning when you get up from bed. Afterwards, if it was a bad one, you can barely walk on the leg, it hurts so much, and then it slowly gets back to normal over the next few hours.
I used to get them more frequently until I realized if I was slightly dehydrated they were more likely. Once I realized that, in my mid-20s or so, I’ve always drank a lot of water, because I live in kind of a continual fear of them. I also try to eat more bananas, as potassium is important for avoiding them.
Since my condition started, I’ve been even more afraid of the leg cramps, because everything has felt that much more painful. Strangely, I’ve had only a couple, which is less than I would have expected, but maybe that’s due to my lack of exercise and how little I’ve been drinking. I had one a few months ago, and it disappeared quick and wasn’t that bad.
Couple nights ago I had a super-bad one, though. The worst I’ve ever had. The pain, luckily, was only like maybe 20% worse than it usually was (was expecting worse). But the after-effects were much worse. I had to stay home from work because my leg hurt so much I couldn’t put hardly any weight on it for hours. And the whole day the leg twitched painfully as if it was ready at any second to go into full cramp mode again.
I wonder if there’s some relation between these leg cramps and unexplained conditions like mine. The one thing I could compare my muscle pain to is the pain I get after a leg cramp. It’s got that same weird, uncomparable pain.
I got an MRI referral; they’re supposed to call me to set it up. So that’s good.
Another thing: I’ve been strangely insensitive to heat sometimes. Last night it was very hot in the upstairs bedroom and it felt fine to me: Molly was sweating and complaining how hot the room was, and cranking the AC, but I wouldn’t have even noticed. This is abnormal; usually I’m the first to get hot and I prefer things cold. And insensitivity to temperature is one of the symptoms of Chiari Malformation. Although I also have extra sensitivity to cold temperatures, but I think this makes sense if my body temperature regulation system is just messed up.
Also, I’ve been sweating more the past year more than I ever have. Not feeling hot; just my underarms have started sweating in normal temperatures. I remember noticing it sitting at the poker table; my armpits would be sweating for no reason, even though the temperature seemed and felt completely fine. I never used to sweat much.
MRI, acceptance, research, main frustrations, mercury
Since being told by the rheumatologist that my symptoms match very closely with the whole Fibromyalgia/CFS class of conditions, I've mostly accepted that this is what I have. It's an unsatisfying diagnosis, and I still want to do a lot of researching, but her telling me that my symptoms match up very well makes me feel better about being at peace with it somewhat. I hadn't had anyone tell me thus far that my symptoms matched up well; just a lot of bullshit and ambiguous advice, so I think that was a big part of me accepting it more now.
I got the MRI also; all was normal, so they said. It was good to rule out something brain-related, like Chiari, so that was another factor in making me feel more accepting of the “diagnosis.”
Related to the Naviaux research I mentioned/linked in a past post, I also read this article about Ronald Davis, a major researcher on CFS who is motivated by the fact his son has a severe case of CFS. Here's the article: https://www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html?tid=a_inl.
Here’s another recent article about how a major CFS study was “bad science” and led to the (most probably) faulty idea that CFS sufferers could be cured by exercising more, which hurt the entire cause of CF-sufferers and made it harder for it to be taken seriously and get funding: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial. I was talking to a guy who I know through Twitter about his condition; he's had this since early 20s; it started in college. He said it started out as mild as mine but got worse over the years, to the point where he collects disability and hardly does anything (not very encouraging).
We traded stories about symptoms and treatments. He was doing a DIY cold-water treatments, which I'd read about recently (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2164952/); he's basically been filling the bathtub with water and ice and going in for a few minutes every few days. I did it a few days ago. I've long been a fan of cold showers and thought it was probable there were benefits to cold temperatures, so I'm open to the idea that it's beneficial in some way. I was afraid it'd be super-painful, as I've been so sensitive to even small pains lately, but really it felt like I'm maxed out at a certain pain threshold; it didn't feel too differently than the super-cold submerges I've done before. The one nice thing about being in cold water for a minute or two; once you're so numbed/shocked by the freezing water, nothing else can really bother you for a while. You are immune to cold bugging you for a few hours at least, and the small pain sensations are turned way down in comparison.
My main frustrations these days are:
• Feeling super-tired/weak/pained in general. That’s a major symptom but it’s not the main symptom that bugs me when I’m sitting around not doing anything.
• Motor clumsiness all over, but especially the problems I have doing small movements with fingers. Very frustrating to struggle to do simple things with your hands, like tying shoes or arranging little items or whatever.
• Cognitive decline and mental overload: I've really noticed the fact that my brain doesn't work as well as it did before. I described it to the guy I was talking with recently as like my bandwidth had been cut in half. I don't have as many inputs/outputs as I did before. The guy agreed with the analogy. A good example: just driving to a 4-way stop stresses me out a bit. I feel like I can't keep track of all the elements involved as effortlessly as I did before. It’s very angering and I am easily agitated. The mental stuff is probably most distressing because I think I would be fine living a purely intellectual/Stephen-Hawking type of existence, but if my brain isn’t working well either that is very depressing.
I talked to another person who suffers from these kinds of symptoms; actually a poker player who they talked about in a televised broadcast. He talked about how mercury in amalgam fillings combined with wifi/electromagnetism could be related to chronic mercury-poisoning problems. I was very skeptical, still am, but I'm also very open-minded so did some research and found a study (from group NCBI) that seems to support idea that WiFi/electromagnetism could cause more mercury to be released from fillings: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4944481/. That's apparently a respected organization and fact that they found supporting evidence is pretty surprising.
Also talked to the first guy I'd been talking to; he said that he started a Facebook group for people who got Chronic Fatigue-type symptoms after getting amalgam fillings and he had 6K followers. And if you google ‘amalgam filling removal’ you’ll find tons of references to this belief (not that that means anything). More interestingly: there was another NCBI study that studied mercury levels before and after amalgam removal: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229679/. A quote from that study: “There was a significant decrease in mercury concentration in serum and urine following the removal of amalgam fillings.” NCBI is apparently a respectable organization: https://en.wikipedia.org/wiki/National_Center_for_Biotechnology_Information. That’s two studies they’ve done that to me are very surprising.
I asked my dentist about my fillings; I do have two old amalgam fillings. I'm going to look into getting them replaced; if there's at all a possibility that they're a cause, that's good enough reason for me to take them out, even if I'm skeptical. On negative side, if they are at cause, it would logically seem their effect would come from the chronic, long-term nature of being exposed to mercury, so you wouldn't think removing them would solve much, but maybe it would prevent things from getting worse. I don't know; I'm super-skeptical, at same time, it doesn't matter to me if I have them removed/replaced so I might as well do it. (My acquaintance also warned me that I should have the amalgams removed by people who understand the risks of amalgam removal, or else you risk exposing yourself to even more mercury.)