About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Thursday, July 5, 2012

The Uglies We Don't Want To Talk About

Because of a fancy Flower Show, each night there were extremely impressive fireworks.

Since this IS a CFIDS/ME/fibro/insomnia/pain blog, I should occasionally, at least, talk about some of the "nasties" out there.  Oh, and give my take on them as well.  After all, otherwise, why are we here, other than to hear about my wild adventures and experiences?  Yes, yes, I hear people all over saying, "no, no!  Be your charming self...we don't need the nasties!"   But proceed I will.  I do so hope y'all can forgive!  (This, I'm afraid, is my feeble attempt at humor!)

So on with it!

This year I've been getting a lot of aphthous ulcers in my mouth, otherwise known as "canker sores." I've not really had them a lot before, intermittently off and on over the last few years, though relatively rarely, usually after something silly like accidentally biting my tongue. But this year, they're so bad that my entire tongue has been affected by them, along the ridges of the tongue, the back, the sides, the front and throughout, repeatedly. They can and do affect the back of my throat, the roof of my mouth, inside the cheeks, and along my gum line too, but not as often as with my tongue. They are painful little monsters, and it's gotten to be so bad that when they're in full-blown force, I have trouble swallowing anything whatsoever, including saliva and water.

I've talked to my doctors about them, of course, and have gotten sympathetic nods of understanding and I've been told that it's not surprising that I've developed this problem, especially after the huge amount of stress our family's been under for the last two years. My body is starting to rebel, now that it sees that the fight-or-flight mode it's been in is starting to abate (KNOCK ON WOOD!). But understanding this isn't helping much, so I'm trying to be a bit more targeted in my approach to keeping them at bay, as I'm convinced that there is more here at play than "simple stress."

I read in a few places that there are a few things that can contribute to the frequency of this condition and in doing a bit of my own research on them, here are some of the more interesting factoids/thoughts I've found and formed:

  • Stress seems to be the unifying bad man - yes, stress, the mother of all evil, it seems, and to me, an all too often convenient excuse of science when something is not understood. Furthermore, stress is especially the cause of the proliferation of them. Mine can start with one or two and disappear, or the opposite, can, and usually, happens: they start multiplying and taking over like some weird version of a campy Japanese terror movie. I feel as if tiny little aliens are invading my mouth. Come to think about it, I suppose they are!
  • Lack of sleep (the bane of my existence) can cause an outbreak.
  • As disgusting as they sound, they are not contagious. (Whew!)
  • They are often accompanied by swollen lymph nodes and even fevers...as is the case with me.
  • And here I go with my political incorrectness - it's been a while! They seem to occur more often in non-smokers(!) Funny, I never had them before I stopped smoking, almost two years ago.
  • Sharp food, such as toast or potato chips can trigger them, as in physical trauma. Actually, I've noticed cheese doodles are a culprit too. (Call me wild and crazy but every once in a while I'll get a cheese doodle craving...that'll have to stop!)
  • Citrus fruit is a contributing factor. I forgot this one because it's so counter intuitive and got a terrible case, not surprisingly, on the plane flying to KL: stress, lack of sleep and orange juice was a winning (or is that losing?) trifecta. I also find this to be ironic because I so often drink OJ to boost my immune system. By the time I was on my way to Tokyo, my mouth was in such bad shape that it took everything I had in me to keep the tears at bay.
  • Vitamin C has also been accused of being a culprit. I'm not happy with this little tidbit since one of my favorite facial treatments to reduce hyper-pigmentation (age spots!) and cause new cell turn-over, is full of Vitamin C. I've told myself that I'll watch it and not use this product if I have a break-out (THAT should be fun to see, given my memory, or lack thereof!) and I'll let you know how that comes along if there is anything pro or con here. I do know that what you put on your face does end up in your system, as I've tasted lavender oil, the papaya in a face mask or even the clay in a clay facial mask treatment.
  • Because certain types of toothpastes (those with SLS) are suspected in contributing to these ulcers, I've tried changing my toothpastes a few times; I've also tried changing toothbrushes often, even though they aren't supposed to be contagious, as well as tried different types of mouthwashes, with alcohol - to kill whatever - and without alcohol - to just clean the area. Nothing, alas, seems to make a difference.
  • These canker sores all too often are in for a long engagement, of at least three to four weeks, or longer. Worse yet, too often they'll be almost gone, and then bam! Right back again! For example, if I've not had sleep for a night and day (which is a frequent occurrence), they viciously come back.
  • They also rob you of any energy. I couldn't believe that I was too tired to break the lock on the hotel bar and so had nothing to drink for close to 15 hours because I was afraid to drink the Chicago water: I'm not a prima donna...just someone who tries to realize how precarious my health is and, am, at times(!) reduced to being a slave to it!
  • The lack of certain vitamins/minerals/nutrients (Folic Acid, Iron, zinc and Vitamin B-12) are suspected to be a cause...I laughed when I saw that - lack of Vitamin B-12 was funny since I get daily injections of Vitamin B-12 and my iron levels are fine.
  • Celiac disease has been associated with these ulcers and my tests came back that I did not have it, just as I suspected. Neither do I have Crohn's Disease, nor do I wear braces.
  • Dairy products are implicated. (When are they not?)
  • Immune disorders are also implicated. I think we all know that one, but where does that get us?

So, what do I think? Really, I believe that no one really knows and that a lot of "causes" are thrown out there. I also know that I get rather annoyed when I see "stress" thrown into the mix because it comes all too close to throwing CFIDS/ME/fibromyalgia, and even sleep and pain, perilously close to the psychiatric wastebasket, just as "we" are climbing out of it!

In the meanwhile, I'll continue to monitor this nasty turn of events.

Notice the purple triangle up top and then the red one on the bottom.   This was a bridge that changed colors every few seconds, going from white to red to turquoise, to purple.... extremely beautiful as well as mesmerizing!


  1. Hello Irene,
    Hope those "uglies" go away fast and that you've been well enough to start reading the books and to try the Sisley cosmetics (I've read very good reviews about the flower gel mask).
    I wish you a nice and calm week-end. xx

    1. Thank you, Maria! I am about to leave for the airport. And I found two books by Malaysian writers on my Kindle and devoured them during my down time - yay! I could actually read! I hope to try the face mask on one of the legs of the journey. Oh I do hope they don't cancel flights again! ;). Have a great weekend! xx

  2. Isn't that always the way, we just keep 'getting things', sometimes I think I get it just because I read about it! Never a cause, never a cure.

    I loved my chiropractor who was quite intuitive and tried all kinds of 'cures', mostly because every once in a while they worked. He cured-literaly- my bout if not really there Interstitial cystitis, very painful, undetectble, no infection shows on test, with cold laser-2 easy treatments, gone in a week. Amazing stuff.

    Better success rate than any MD who can really only prescribe expensive tests and dangerous pharmacutecals. (which I now believe I can't live without btw)

    The chiropractor/healer moved out ot town of all things!!!!

    1. I know what you mean! I'll go to anyone who can help me, be they MD's, DO's, chiropractors, holistic or "alternative" medicine routes. As long as it helps, I'm open to it. And it really is frustrating when those who CAN and do help need to retire or move out of town, to name two obvious way of losing someone who's been of much help! xx