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.

Sunday, May 20, 2012

CFIDS sensitive skin: Some of us need to learn the hard way...

My mom is proof positive that eating healthy and exercise really helps you look great even when you're 70.  Here in Kiev in '93.

At times I marvel at my colossal stupidity.  I mean, I've had CFIDS/ME/fibromyalgia and all of the health issues that have resulted from this core illness for 37 years.  And yet, somehow, I'm still in denial and do incredibly dumb things.  

I KNOW I have sensitive skin.  I've even written in this very blog about some of the problems I've had because of this.  I take an anti-histamine every night in order to keep hives at bay.  For Pete's sake!  You'd think by now I'd be a bit more careful about what I put on my skin and what I eat and/or drink.  But I'm constantly doing stupid things. Well, I guess I needed to go too far in order to start back to where I would get some real help.

Yesterday, Saturday afternoon, was quiet around here.  Hubby was exhausted and was taking a long nap.  I'd gone to the dentist on Thursday, a hugely needed event, and had my teeth cleaned - YAY!  The plaque was driving me absolutely bonkers and I had two year's worth because of the whole thing going on with my daughter.  Now we're, of course, catching up with everything.  

BTW: I had some really good news that could be taken as a tip perhaps.  For the first time in my life, I had no cavities.  My dentist (of almost 30 years) was quite surprised and said so: with my dry mouth, it's always a given that there'll be major problems, at the very least, cavities.  Given how long it'd been since my teeth have had any professional attention whatsoever, this was nearly a miraculous happening.  But once the conversation turned to bad backs, I thought to mention that I was able to brush my teeth more frequently because we had remodeled our attic bathroom (the one we've been living in for a year because the "master" bedroom and bath are being remodeled - SCREAM!) and that we'd put in a tall vanity with the sink.  Rather than those low vanities where you have to bend down so far when you wash your face and do your morning or nightly routine, our new vanities are now the height of the ones in a normal kitchen.  What a difference.  Now I have much less back pain so my brain doesn't rebel as much when I try to go brush my teeth.

But on Saturday, I came down with hives and couldn't figure out what the heck was happening. 

We remembered that on Friday I was feeling so cruddy that I called hubby at work and said that I absolutely needed a hero, loaded down with tons of processed meat: salami and ham, especially.  I needed the salt big time.  And I told  him to add a pizza to the whole bit.  If I was going to be "bad" and eat those things that hurt my body (the carbs and combining carbs with proteins/fats, plus processed food in general), I was going to at least enjoy it.

On Saturday, having already messed up my good eating habits, and feeling worse, I added cookies and milk to the whole eating disaster, and asked hubby to defrost some of my piroshki while he was at it.  Piroshki are these wonderful baked rolls with a ground beef filling that also has my beloved dill in it, etc.  (Everything Russian has dill, or sour cream, or better yet, both!)

So hubby and I tried to figure out what in the world had caused these baby hives that were breaking out all over, section by section, like a general sending troops out to occupy new territory a bit at a time.

I remembered that after the dentist we had stopped at the pharmacy nearby.  I had needed some retail therapy. I've never been a believer in "retail therapy," but now that I am getting out even more rarely than before, I just needed to hit a store and look at those items I see on the Internet.  Wow.  The shampoos and products I see on "Project Runway" or even on the occasional commercials I don't manage to skip through - I never thought I'd get excited seeing them in real life!  What has my life come to?

So, as hubby had laid snoring next to me, I'd picked up the bag of what I'd bought two days earlier.  Yes, by the time I got home I was in no shape to even look at what I'd bought, much less appreciate it.  Friday, the day after the dentist's appointment I was in more pain than I've had in a long time, weaker than I've been in a long time.  

Post-exertional malaise anyone?  

As I wondered about the adventures at the dentist, I  remembered a nurse who was a patient at the holistic clinic I went to weekly for an entire year, back in 1997, something I'll get into at some point, I promise.  I'd see Betty there every once in a while when I'd get my weekly chelation or a "nutritional IV," a variation of a "Meyer's cocktail" (one of many therapies I underwent in that clinic each week) and wondered why she was there.  She didn't appear to be sick.  Yes, she was "elderly," but that certainly didn't "mesh" with what we had going on at the clinic.

I got to know Betty and she was fascinating.  She loved talking to me because she'd gone to nursing school in my home town - back in the early 1940's - and would love to hear if certain stores were still in business, what had happened to this place and that.  I loved listening to her because she'd been a nurse during WWll and I was absolutely stunned by the one time she did open up about what she'd seen when she worked at Dachau for just a few days or a week, after the war once the concentration camp was liberated.    

So, Betty was truly one of a kind.  I wondered, why was she there, hooked up to an IV?

Well, Betty was also very spry for her age, very energetic, looked at least 10-15 years younger than her real age. But she had always taken good care of her health, even when we Americans were not doing so.  Like my mom, she exercised every morning as soon as she woke up and took walks, even when people would stop and ask if she (or my mom) needed a ride.  No one walked when I was growing up.

And Betty felt that going to the dentist was an assault on the body, thus the "nutritional."  Wow.  I was really impressed. 

You see, though she never practiced in the US, my mom became a dentist after the war.  When she was in her DP camp (Displaced Persons camp) near Munich, the DP's, along with various international organizations and the Marshall Plan, started schools and my mom was able to continue the education that was stopped because of WWll when Ukraine was invaded by the Germans.  In her camp, where she lived for five years, she was able to get a wonderful education, including dental school.

Mom was always taught that dental work IS an assault on the body and that they should recommend that patients take it easy after any dental work.  In fact, they were also taught that during the woman's "time of the month," she shouldn't have any dental work done, it was just a bit too much.  

I know this sounds very old-fashioned and I know that it even sounds anti-feminist.  But the times I had dental work done on me at "that time of the month," when my mom wasn't aware of the "scheduling," I always came down with a cold or was generally run down.  One day, I famously barfed and passed out in calculus class, two days after the procedure.  Talk about embarrassment?!  And my mom was furious with me when she had to leave work and drive me home, asking me, hadn't she taught me better?

So, yesterday, visions of Betty bounced in my head as I tried to talk myself out of this awfulness I was going through.  No meds were helping, no mind games were doing any good.  And I tried not to think about the couple of dental projects I was scheduled for in the next couple of months.

Lying there, bored to death, I'd opened up the bags from the pharmacy I'd dumped by my bed and started looking at the "treasures" I'd brought home.  "Treasures," I might add, that hubby had warned me about, unfortunately.

I'd already tried the cotton pads.  Hubby had asked me if I REALLY wanted to buy them, since I usually curse the ones he gets me at the drugstore and I try to go with the Shu Uemura (which are almost impossible to find) or my second choice, Sephora's.  Annoying hubby was so right: when I took my makeup off that evening, it took seven of the new cotton pads to wash off the makeup with the micellar water I used, whereas you only need two pads from Sephora, and to add insult to injury, my face reacted to the very rough cotton, becoming very red and irritated. Those pads are definitely going back to the drugstore.

Also, lying in bed, I'd picked up a certain "correcting powder" that I'd seen someone on the Internet recommend, someone I like to follow on YouTube and whose recommendations which I've tried I've had great luck with.  I brushed a bit on my hand, the one with the huge scar, and wanted to see if I could see any change.  The powder in the compact was not bound together very well and it flew everywhere as I picked it up onto the brush.  As I tried to tap off off the excess, it was still flying all over, as well as when I brushed it onto my hand.  Nope, no difference.  I put it further up my arm, past my watch.  No difference, with powder still flying all over, cough, cough.  I was surprised hubby was still snoring away and that the flying powder hadn't woken him.

About 15 minutes later the area I'd bushed with the correcting powder on my hand started burning.  Stupid me, I tried to rub it off.  Of course that's just rubbing whatever was irritating my hand further into the skin.  Finally, I realized I needed to wash it off.

Finally! I fell asleep before I could do more (inadvertent) damage to myself.  But then I kept waking up, scratching. Each time I woke up scratching in yet another place but made myself fall back asleep - I really needed sleep, the bane of my existence.  After about the fifth time I realized that the scratching wasn't going to get any better, only worse.  My neck was affected, the shin of my left leg, and on and on and on it went.  

Hubby gave me Tylenol PM because it has Benadryl in it.  I knew that wasn't going to cut it so I reminded him of my nightly anti-histamine.  I took that and after about an hour the hives started to die down. We started reviewing everything I'd done, trying to figure out what could have caused the hives.  How in the world did whatever it was get into my system - what had caused the hives?

Later last night, very late, I happened upon a blog and the woman was someone I think someone here wrote about earlier, when talking about a muscle biopsy.  I read a few posts, enjoying the blog tremendously and even left a (long, of course!) comment.  I was convinced it was the milk I'd had that caused the hives.

But today, in the light of day, having analyzed everything, I am convinced it is the cheap pharmacy makeup.  My daughter stopped by as I got ready to take a long bath with a soothing milk product (ironically), and also gave me "a look" and said she was sure it was the makeup.  After all, I do get lactose intolerant if I've gone a long time without any milk, but it's never made me break out in hives.  Cheap makeup?  Yes, it's given me hives and other trouble in the past.

So, a little mystery solved.  And I feel stupid.  I already know I cannot handle silicone, or at least a product that has a lot of silicone in it, especially if it's in a cheap product.  And I also know that I can't handle a lot of the ingredients in the less expensive makeup and skincare products.  When I buy La Mer or Chanel, there is a reason. 

And yet, I worry so much about appearing like a spoiled diva that I end up sabotaging myself.  It's about time that I take a reality check and realize that the there is a reason I come back to the higher-end luxury products and they aren't because I'm trying to be a spoiled brat. 

But Betty and the IV nutritionals...why did I bring all of that up?  

Last night hubby and I realized that things have really gone too far.  I'm still recovering from everything my body went through with all those weeks and weeks of staying by my daughter's bedside at the "major medical center." I've not recovered well from the whole hospitalization and surgery thing I had going on back in November/December. I've not recovered from our visit to get my hair done, which was over a month ago.  I've not recovered from the GP's "normal" visit, nor the subsequent visit when I had to get my toe lanced because of the infection that wouldn't go away.  And now my body is trying to recover from the dentist and my stupid application of a cosmetic full of ingredients that don't agree with it.

We had to bring in the big guns.  It was time.

My GP and I have a great relationship.  I've been going to him for at least fifteen years and he remembers how well I did with all the treatments I underwent at the holistic clinic.  His philosophy and I quote: "I don't care if they put cow sh*t on your head.  Whatever they're doing, it's working.  Keep it up." 

One of the things that helped so much were the nutritional IV's.  In fact, there have been athletes in the past who have had CFIDS/ME and been able to play but do nothing else between games.  They've had their doctors on the sidelines pumping simple saline solution during the games.  But when the games were not in play, these athletes have gotten versions of "Myer's Cocktails."  Basically, your physician figures out which vitamins and minerals you are deficient in and puts those nutrients into a saline solution and it usually takes about two hours for the IV to get through your system.

So, last night, we resolved that my "eating right" was no longer enough.  I'd tried for a few months, I'd incorporated vitamins into my routine and I was doing much better on the migraine front but the rest of me...well, not so good. In fact, in some ways, I was doing worse, having become extremely accident-prone, a completely new development.

So, I had a health professional administer a nutritional last night.  We sat in my bedroom and watched a movie ("One For the Money" with Katherine Heigl and Sherri Shephard from Janet Evanovich's series, cute!!!) and by the end of the movie the IV was finished.

Today, I'm still feeling pretty bad, but I can tell that the nutritional has helped and am going to try to get a couple of nutritionals a week for a while, though I have no idea how long that will be. 

However long it is, it is well worth it and I highly recommend investigating this approach if you are in a state where nothing is helping.  

And I recommend that you stay away from some of the cheaper cosmetics too.  

Boy, this illness sucks and costs a bloody fortune! 

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  1. I tried posting a comment via Explorer with no success so now I'm trying via Firefox.

    I can't believe you had no cavities! I'm really happy for you and very jealous. Each time I go (every 6 mo), the dentist finds at least 2 cavities.

    Pre-Neurontin,and during the first 30years of my life, I had only 2 cavities. I've actually lost count of the total cavities filled following my titration up to 1200mg of Neurontin. I've also had 2 root canals. Each cavity is below the gum line so they're excruciating - both before and while they're filled; low pain threshold doesn't help. I always have sugarless gum, sugarless mints,& bottled water with me. I drink water nonstop to deal with cotton mouth from the meds (Ultram also does this). I brush with Sensodyne and use Act mouthwash. I floss too.

    Having a mouthful of fillings is just one more lovely part of Fibro, the related symptoms and side effects of the necessary evil that is the medication.

    As for the skin sensitivies, I learned the hard way to not play with different brands. I developed rosacea several years ago. Anything with glitter (Urban Decay shadow and liner) feels like shards of glass. Certain lotions produce welts or cause small cuts to form and open up on the back of my hands.

    Fibro makes me feel like a canary in a mine; incredibly sensitive to what-feels-like everything. But, you have to find a way to laugh or it all becomes overwhelming.

    Feel well!

    1. Ah, Melissa!  I'm so glad you persevered and got your message through! I feel so awful not knowing how to advise re getting messages through, because my computer skills are so elementary.  If I can figure out the problem, I'll let you know.  Perhaps others here have ideas? Or are not able to get through also?  Agh!

      But thank you!  I'm not completely sure why I had no cavities, though have some thoughts I'm working through.  Rest assured, I do know exactly what you mean.  Those cavities below the line ARE awful.  I'm even getting them on top of my teeth (ugly!) and have had those worked on...great improvement in the looks department!  Luckily I do have a high pain threshold (only because I've been at this game for so long, so fear not...in a very weird way, things DO get better!) but I still feel so terrible because I always feel so "unclean"!   Yes, root canals, too, one of which is painful, still, after I have no idea how many years, yet no one can figure out WHY I have that pain.  

      If you don't mind, I'd like to address this in a post.  I touched on it, why I was suddenly drinking less, etc., earlier somewhere but have been planning to write more about it.  Now I'll move up the schedule for that topic.

      And "the canary in the mine": that too has been on my list!  I know exactly what you mean and have tortured my family with it for eons.   Oh yes, we DO have to laugh...anything else will drive us totally bonkers and it's the only way to survive intact.

      Please keep writing in!  I so enjoy hearing from others.  It also helps me know what are the concerns of others!  Thank you so very much!

      Hang in there.  Somehow, together, we'll make it through.   Friendship, I find, is every bit as important as laughter!   And I know the comments add to the validation we so yearn for!

      Irene xx