Friday, July 29, 2011

Health Newsletter

This week, work was a challenge.  I can't get into the details, but there were scandals, deadlines, confrontations, staff absences, and critical meetings.  I was doing fine on Monday, even after pushing my health luck at that party, eating cake and staying out late and all.  But the week took it out of me, so I'm at home today, keeping in touch with the office via e-mail.  Fortunately there's sweet f.a. going on over there today, so it all works out.  And Monday is a statutory holiday in Canada, so I get a superlong weekend!

I continue to do sporadic research into my chronic-fatigue-like condition.  I go online and see if I can drum up anything new when I'm not feeling well.  On my good days I just forget about it for a while.

I've had a curious new symptom that appeared at the same time my wheat intolerance spontaneously manifested itself.  It's back pain, but not the type I'm used to.  I've had my share of muscle spasms, but this is not a muscular pain.  There's one particular vertebra, right in the middle my spine, T-something, that hurts under pressure, i.e. if I lean back against a hard surface it hurts.  It gets worse when I'm feeling tired or unwell, and much worse if I eat wheat.  At its worst it's very sensitive; when I lie down on my super-soft pillow-top mattress, the pain makes me say "ow".

A doctor friend of mine poked at it through my shirt and said it didn't feel like anything special.  I said "Am I just getting old?" and she said yes, probably.  It might be arthritis.  I shouldn't worry about it unless I see that the joint is visibly red and swollen.  So that's something for the "hmmmm" files.  I will mention it to my g.p. next time I go in, but it seems to be stable so I don't see the point in making an appointment now.  Do any of you other persons of a certain age experience anything like this?

I found something in my research that seems to correspond to some other symptoms I've had.  It's a condition called "Central Sensitivity Syndrome", although it also goes by other names.  I've seen it defined a few ways.  The more narrow definition refers to a sensitization of the nerves that causes normal touch and pressure to be perceived as pain.  The broader definition, which is supported by several first-person blogs I've been reading by people who have CFS/ME (the naming convention is not yet settled in the literature), refers to an overall neurological sensitization which makes all sensory stimulation more acute, and sometimes uncomfortable or even unbearably stressful.  CSS goes hand in hand with CFS/ME and fibromyalgia, and possibly other conditions.

With regards to pain, fortunately I only have one small area of hypersensitization: the nerves in and around my ears.  If the temperature is at all chilly and there's any wind at all, I need to wear earmuffs or I get excruciating earaches.  I mean, other people are walking around in T-shirts on some days when I'm wearing my earmuffs, if it's cool and sunny but quite windy.  It makes me look like a dork but frankly I'd rather look stupid than suffer through the pain.

I also have trouble with certain styles of glasses, and even certain hats which come down far enough to press on my ears.  I can't wear my current sunglasses for more than 20 minutes before the pain kicks in.  Yes, I suppose I should just get new sunglasses, but the problem is I have to wear the glasses for 15 minutes before I can tell if they're going to trigger the pain.  This makes trying on frames a frustrating process.  Sunglasses tend to be more problematic than regular glasses because they tend to have big, wide arms to block out the sun from the side.

With regards to overall sensory hypersensitivity, I do believe that I qualify.  My levels of sensitivity change, corresponding to how overtired my body and nervous system are on any given day.  On good days I don't like rock concerts and crowds.  On the worst days, days when I'm in the middle of a flare and have very little energy, anything can be overwhelming.  The noise, motion, and vibration of riding in a car can cause my heart rate to skyrocket.  Even eating food that is rich or tasty can be too much, although thankfully that was a phase that I only went through once, for around a week.  I had never heard of anyone else having that kind of reaction, but even with the limited amount of blog reading that I've gotten around to, I have found someone else who has trouble eating due to it being perceived by the body as a stressor.  I never had it as bad as this blogger; I was able to do alright if I stuck to baby food and brown rice for that week.

I try not to research these things obsessively.  It's important to be informed, but it won't help to focus only on my health concerns.  On one hand it's a relief to know that I'm not alone with my bizarre symptoms.  On the other hand it's scary to see how bad things can get.  It's a good reminder to me to take my body's cues seriously and not try to push my luck very often.  I have read many times that people ignored their fatigue and to this they attribute their current state of affairs, which is worse off than where I am.  I am grateful to them for posting their experiences so that I can learn from them.  I am not in any way wiser than these good people, just randomly lucky to have online resources at my disposal that didn't exist back when these other bloggers were starting to have problems.

I don't know if what ails me could correctly be termed Myalgic Encephalomyelitis or Chronic Fatigue Syndrome with all the capitals, but there are certainly similarities, and either way it can't hurt to respect my body's signals.  I don't get a sore throat or swollen glands when I'm down, which I believe are elements in an official diagnosis.  So, who knows?  Whatever it is, I'm still managing, and if I ever feel sorry for myself, all I have to do is take a look at some of the people who are unable to work, or even housebound, and suddenly my life looks pretty sweet.

P.S. Shortly after posting this I was directed to this recent article defining Myalgic Encephalomyelitis and it certainly does appear that I could qualify as a mild case, if I'm interpreting it correctly.  I will be printing this off for my g.p. to review.


Lynn said...

I thought about you when I was reading about the author Laura Hillenbrand. She has chronic fatigue syndrome and rarely leaves her house these days. I hope you can get to the bottom of all that.

Warped Mind of Ron said...

I've watched a show, "Medical Mysteries" or something similar where doctors will miss a diagnosis and treat a patient like they are making up symptoms for years until finally one doctor will listen and figure out this rare illness. It just seems that doctors have a list of "common" illnesses and all the rare items get crossed off because "Like only 3 people in a million get that" where the poor patient is one of those three people. Keep making a fuss and doing your homework and hopefully one day the right doctor will catch what this is.

Sparkling Red said...

Lynn: I just read an article she wrote for the New Yorker in 2003 called "A Sudden Illness". It's stunning, both in content and writing style.

Ron: Yeah, it's amazing that although medical research is constantly making new discoveries, most individual doctors act like everything in the medical field is already known. If they don't know about it, it doesn't exist. That is a nonsensical approach, absolutely.

Jenski said...

It may not always be the case or easy, but you certainly sound like you have a healthy approach to listening to your body and slowly getting to the bottom of what affects your health. I also think that things like random pains happen as you get older (like my ankle that aches when a storm is coming), so good luck separating the two. ;-)

DarcKnyt said...

I wonder if you're having thyroid problems, or low iodine problems. Iodine deficiency has many of the same symptoms as CFS. But I'm not a doctor, nor have I ever played one on TV.

Hope things get figured out for good soon.

Sparkling Red said...

Jenski: I have spent the last few years learning to read the "tired" cues of my body, and disciplining myself to respond to them. The trick is not to wait until I'm what most people would call "tired" before I go and rest. By then it's probably too late.

DarcKnyt: Thanks for the suggestion. I have had my thyroid tested, and it's nice and normal. :-)

Pixiebaby said...

Something came to me last night as I was sitting here wondering what in the world has happened to me with all this stuff. I have a very hard time believing that this is the way that my life is going to be from here on out. Then I remembered seeing a doctor over twenty years ago who ran allergy testing and others on me and treated me for Candida overgrowth. Don't even know why this just popped into my head but it did and I looked into it. All I can say is that I sat there stunned to see that each and every one of my symptoms is on the list for a candida problem. I am going to start treating for it and go back on a special diet and see what happens. Anyway...when I just read your post I thought I would mention it for you to look into. It's frustrating to have all these symptoms and no real answers...let alone a solution.

Claire said...

I hope you and your GP can get to the bottom of this sweetie. It must be very difficult to live with.


Sparkling Red said...

Pixiebaby: That's certainly worth looking into. Dietary changes can make a big difference. Sometimes it takes a couple of months for you to start noticing a difference as your system adjusts - that's what happened to me when I cut out dairy, and it seems to be the same slow but sure change with getting rid of wheat. So stick with it a while and be patient. I hope it helps!

Claire: Thanks! It is certainly frustrating at times. Then again it makes me very grateful for the good days.

DarcsFalcon said...

Very wise of you to listen to your body like that. So often we don't, and push ourselves too hard.

Darc beat me to the iodine thing!

But what Pixiebaby said struck a chord with me (and I thank you Pixiebaby!) I know I'm personally dealing with a yeast thing on my skin and have been for at least a year. It's nasty stuff and I'd forgotten just how bad it can be until I read again some stuff I found after seeing her comment.

Your symptoms do sound quite a bit like fibromyalgia. This CSS might be a close relative.

Boy Spark, you sure do inspire a lot of medical detective stuff! It reminds me of the saying, "when you hear hoofbeats, look for horses, not zebras." I think in your case, it might really be a zebra this time, in terms of diagnosis. Whatever it happens to be, you continue to be in our prayers. *hugs*