Friday Tidbits: Factors in Developing CFIDS/CFS/ME and Fibro (Part 2)

 Oh how I wanted a horse: but it was not to be...think of all the falls and head injuries I managed to escape! 

Continuing my article from yesterday where I told y'all about a few of my childhood head traumas... I'm in the midst of trying to figure out which contributes more to CFS/fibromyalgia: trauma, genetic predispositions or.... We've discussed head trauma and are on our way through to genetics.

In 1996 my mom and I flew to Russia for a most extraordinary family reunion which I'll write about some day. While we were there visiting one set of very close relatives in the far north, we also wanted to visit another branch of the family, my cousin, in the (far) south.  Well, this particular cousin is my half-cousin if you want to get technical and in this instance, we do want to keep that in mind.  My half cousin is the daughter of my mom's half brother.  In other words, we both share the same grandfather.

Visiting my cousin was an incredible experience.  We planned on being there for two weeks.  She lives off the Black Sea and the Azov Sea, not too awfully far from where the Olympics will be held in Sochi. 
 
Keep in mind that in 1993 we had visited my cousin for one day and night (it was a two-day train ride from Kiev, each way!) not knowing when and if we'd ever see each other again.  In the course of the visit, it came out that I was ill with CFS/fibro. (I did look just a tad peaked when I got to their home.  My mom, in her 70's, looked like a teenager compared to me!)
 
So, when my mom and I visited in 1996, my cousin was determined that I would have a restful time and not do anything but rest, rest and rest some more.  And I did.  My cousin is ten years older than me and though she is one of the kindest people I've ever had the joy to meet, there is no mistaking that she is the matriarch of the family and what she says goes. (Sort of like my mom, me, my daughter....)

I rested, rested and rested.  Other relatives would come by and I was still forced to rest.  I visited with relatives and a few friends but there was an old cot set up for me in their patio-like area and I did most of my visiting from there.  My mom went on a few trips here and there, but I rested, too sick to attend a party thrown in our honor, and so forth.
  
In the course of the first week, I made an incredible discovery.  My cousin, it appeared, has CFS/ME and fibro! This was why my cousin had insisted on my resting so much, pampered me and knew what factors would be stresses.  I also learned some handy tips from her I hadn't known...like never taking a too hot bath or shower, because it is so debilitating. (This was ages ago and I can't believe I hadn't make that observation consciously.)  She monitored the water temperature like some dictatorial, though benevolent, water official!  I was served the freshest food around, despite the fact that oh so many in Russia and Ukraine were starving after the fall of the Soviet Union.
  
My cousin did not have the label of CFS nor fibro because Russia was having its changing into a "democracy" problems where people were dying of starvation - there were over 100 children who died in my cousin's city the winter after my second visit.  My cousin's family was spared because she had two goats (for very rich milk for her grandchildren), chickens and jars of canned goods, food she'd grown in her garden, not to mention the many American dollars we gave her to split amongst the various family members. 
 
As I looked around me at how hard her life was, it saddened me to no end.  This was a time when no medicines were manufactured in Russia.  From home I'd brought as many basic medicines as I could fit into my suitcases.  Even Tylenol was a premium med not available at the time.
 
But I still had a hard time seeing my cousin so ill.  She had no choice but to run a "household," a word that meant taking care of not just the house, but the chickens, goats, garden, all those things that you absolutely have to get out of bed for.  

I discovered that a few times a year she would have what we would call a "flare" and she'd be in bed for a couple of weeks while her daughters would come over to her home and would try to take care of the basics which couldn't be ignored.

She had absolutely no help on the medicine side.  But what I found fascinating is that she had the opportunity to go to a sanatorium for a week or two each year.  This, hard to believe, was not state-funded but private. How, why, I don't know.  But each year her family would chip in and somehow get the money for "mom" to get away for total rest and relaxation.  They all felt that this was the only reason she was doing as well as she did and was, for all practical purposes, still alive.

As the time went by I discovered many things.  I learned that my cousin was very healthy until (OK, this bit will sound like some sort of really bad joke!) a tank part fell on her head where she worked in a factory that put together - well, you guessed it, tanks. You did not want to get her started on the whole "tank" thing, quite aside from the unfortunate "accident" she'd had.  No meds in the former Soviet Union?  "Why?" you may ask. Well, it's because the USSR felt that tanks were more necessary than meds, which could be produced in other, Soviet bloc, countries.  And the number of tanks?  Evidently there were enough for each adult and child in the former USSR and with some left over! She's one feisty woman, that cousin of mine.

I have no doubt that my cousin had excellent medical care, despite all the jokes at the expense of Russia's medical establishment.  I was there when there were a few small medical crises as well as a couple of near-fatal ones in Perm - in the far-away north - as well.  Doctors really cared. They may not have had the basic medicines and testing equipment, but their common sense was honed to a fine art and what we call "alternative" medicine or even "old women's medicine" was used if they thought it would help.  They even made house calls, as I was shocked to see. 
 
The doctors wanted to do a spinal tap on my cousin a couple of years before I ever entered the picture.  I had had two of them with abnormalities appearing in the spinal fluid.  I often wonder what my cousin's spinal fluid would show but I don't blame her for not going that route.
  
So, do I think there is a genetic component to CFS and fibro?  Probably. Given a set of circumstances, there is probably a genetic predisposition.  

Do I think that head and neck trauma can contribute to fibro?  Oh, you betcha.  A resounding "yes."

I also realized that my cousin had a luxury that we don't have.  Aside from the food crisis (which can't be underestimated), there was so little stress in their lives.  For example, they didn't use a washer or dryer and I could see that in adding washers and dryers into our homes, we've used that time and energy saved into taking on more things, obligations, commitments if you will, many of which are stressful.  Think of how stressful life has become with cell phones alone, though I'm sure that the younger generation in my cousin's town all have cell phones by now.  In fact, we've even skyped a few times.

I ate three fresh-food and delicious meals a day with little activity.  We were in the midst of a heatwave, with 112 degrees the entire time I was there - and no AC - though there was no humidity.  And yet I who cannot tolerate anything but 70 degrees anywhere at all, managed to come home 15 pounds lighter, looking a decade younger when hubs picked me up at the airport and feeling the best I'd felt in ages.  It was such a successful visit, health-wise, that hubs often suggests that I go back and visit.  Unfortunately, life gets in the way. 

But, just thinking....and observing how things are.  I think that in addition to trauma and genetic predisposition we really can't rule stress out either. 

As always, I hope all are doing their best, only better.  Ciao and paka! 


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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!

My eyebrow miniseries: Part 2

Teaser: some of the items to be discussed in my next post!

And so, welcome back to my continuing saga of the eyebrow, my "miniseries"!  


I happened to ask my immunologist the other day what exactly causes so many of us with CFIDS/ME to have so much hair loss, and he said that he thinks no one really knows, though stress seems to be the most popular theory. I happen to agree, but that alone can be an entire series, including the fact that it is not "psychological" stress, as too many in the "shrink" world would love to convince us, but the stress(es) of CFIDS/ME/fibro, the immunological and neurological ones, to be more precise.  But on to today's continued topic of eyebrows.  Ah yes, I can tell everyone is waiting with bated breath!


As to why some of us have sparse brows and some of us have full ones...well, that's always boggled my mind, thanks to my mom and my daughter.  My mom and daughter both have beautiful Brooke Shields brows (as well as hair and strong nails) that are often the envy of many and when it comes to cutting hair, they give their hair stylists a complete workout.  I've always looked at their hair and brows and marveled at how people with similar genes can have such different characteristics.  But the hair and brow sparsity I'm experiencing has now reached an entire new low because of CFIDS/ME and even the fibromyalgia.  So, I've given up on "hair envy" and just deal with what I've got, just happy for my mom and daughter.


Consequently, over the past ten years or so, I've been on almost desperate hunt for "help."  I have bought many kits, pencils and my favorite route: eye and brow shadows in colors and finishes/polishes that "help" somewhat. You name it and I've most likely tried it.


I think my desperation reaches its highest heights when I start to seriously think about and then finally talk about and consider the whole tattoo route.  Understand, I think tattoos are a horrid trend and despair that they've become so mainstream.  Hollywood has a LOT of answer for, especially since they started this craze and just as it caught on big time, so many of those in Hollywood began getting their tattoos taken off by means of extremely expensive and often painful laser treatments.  We are going to have an awful lot of ugly looking body parts once sagging strikes that young segment of our population that's been most influenced by this fad.  Shudder: think of the drooping Chinese bits of philosophy that are so precisely embedded into a body part that will soon look more like ragged and misshapen scrolls as opposed to the sweet little straight-lined rectangular paragraphs they start out to be.  No one should use tattoos as a means of decorating the body (sorry if my age is showing in this one aspect of life) but in my case, for all too many reasons, even I have seriously considered getting my eyebrows area tattooed, even seriously considered getting a fake eyeliner effect!  Of course, I would only go to a doctor or to a tattoo artist recommended by a physician and not simply a tattoo parlor on Main Street, USA.  Here are the sorts of things I ponder and which hold me back, or on the other hand, won't leave my mind as a possibility:

• Do I really want to be stuck with the same kind of brows for the rest of my life?  Brows are like everything else: they change just as fashion changes.
• Do I really want to mess up my face?  I'm not sure it will be done "right," aesthetically.
• My hair color never stays the same.  I'm always adding more highlights and lowlights depending on my mood.  Tattooed eyebrows could limit my choices.
• What ARE the possible health risks, even the ones not yet imagined?
• I don't have enough problems with my vision?  I should go and risk things even more with tattoos in such a sensitive and crucial area?

I suppose the tattoo thing has really been on my mind because I've actually had a few discussions about this on plane rides, of all places, and I'm not one to do much talking with fellow passengers, knowing it's a pain to have a Chatty Cathy sitting next to you.  However, at least four or five women sitting next to me have filled in their brows or had their eyelids tattooed, or both (yes! what an incredible number, especially considering how rarely I fly!) and couldn't be happier.  What's more, they've all been older than me...close to my mom's age.  Now that is definitely mind-boggling and has given me pause as to why I've not gone this route.  I suspect I'm simply scared my luck wouldn't hold and, besides, I'm still trying to somehow manage to get to some really needed doctor's appointments, so I suppose the whole tattoo thing really is low on my list, even in the investigation category, as I seem to use my brain - when it's not fogged up - for more pressing issues.  But a girl can dream....

On the other hand finding Lan in Pittsburgh has done wonders.  As I've written about before (on March 27 and on April 9) Lan can get every single one of the very few brow hairs I DO have to accept color (for some reason, my brow hairs have a hard time absorbing color) and she has a very good and gentle hand with the hair removal so that I've not had the burns that can lead to the unfortunate double brow scenario described in Part 1 of this "miniseries."  After Lan does my brows I am in "face bliss" for about four weeks.  The brows aren't bad for six weeks, especially if I'm careful as to how much product is used to clean my face, not over-washing and over-scrubbing the brows.  However, I still do need to use pencil or brow shadow to help. The dyeing of brows and the removal of stray brow hairs is just good for a fuller look, a guide to see where to go and to make me feel more human when I don't use makeup, which is most days.  Finally, I might add that sparse brows, for anyone, age you: brows often do get more sparse as we age and this is one reason the eyebrow market has been so successful in recent years.  Unfortunately, the CFIDS/ME people have a lot more "filling in" to do.  

Lately, because of energy and health considerations, I can't run up to Lan often enough.  Since I'm happiest when those lashes are done I have put down finding someone a bit closer to home on my to-do list since getting out of the house (bed!) is getting to be harder and getting to Pittsburgh is almost a journey.  I do worry, however, about how safe anyone else would be.

And so, these are my desperate thoughts and slightly desperate measures for the approach to my almost "non-existent" brows problem.  My next post will deal with the less desperate measures.  That is, unless I remember some other aspects of this subject that needs discussing first...not a stretch considering how multi-faceted beauty is and how difficult it is to achieve, especially for those with chronic medical considerations.

Until next time!   And I hope everyone's feeling as well as can be!