In the past year plus that I've been writing this blog, I've pussyfooted my way around who my sources are and about my own qualifications regarding all things fibromyalgia and CFIDS/ME/CFS. Though I'm not ready to out any of my medical sources, I am now ready to "out" myself.
I think that it's common knowledge that Irritable Bowel Syndrome (IBS) is a huge unpleasant problem in CFIDS and fibromyalgia. But do you know who was one of the first to describe this association in medical literature? Music - please.
Moi. Me. Yes, me. Laughing out loud! I've kept mum about part of my backstory here on this blog for many reasons. One of them is that I wanted to establish myself before revealing this bit of my history. I also wanted to make real friends on twitter, for example, knowing that they are my friends because they like me and read my blog without any sort of gimmicks. I'd wanted the support, encouragement and insight into what readers and followers gave me and what I gave them to be untainted by "whom" I might just possibly represent. I also didn't want to start going about showing off or to have people thinking that I'm showing off. However, I think I may have come off as a bit of a braggard because I was so defensive of my sources and my own complete history - just maybe!
But getting back to the IBS. Because this was such a novel idea, at first this correlation was introduced as an abstract at a medical conference. It was later published in a rather small journal, in our then rather-new home state. (It didn't bother my rheumy. He's very well published and internationally known, has a standing column in a pain journal, has out-the-wazoo credentials - I get only the best for my readers!) It took years for this relationship, that is, IBS and fibro, to gain general acceptance. And now look where we are. Irritable Bowel Syndrome is so prevalent and so accepted that it might even be considered a characteristic of fibromyalgia. (Ah! Still waters do run deep don't they? I do look so unassuming, no?)
So why now as far as the outing goes? I've "outed" myself because I'm tired of reading about uninlightened (shall we say?) doctors out there and what they are doing. And I'm thoroughly disgusted with some of the medicine I see practiced by those same doctors.
I'm also tired of seeing bad science out there. I'm tired of reading really bad thinking and hairy schemes that patients are desperate to apply to themselves and I'm disgusted with half the psycho-babble out there.
Furthermore, I'm tired of having to write about medical problems which I know to be true and having to try to convince people that I know what I'm talking about when I do write about DHEA, Human Growth Hormone Deficiency and other hormonal deficiencies - or any other aspect of fibro and CFS for that matter. And I want my readers to know that if I write something, it is in fact, true. It may not apply to you, but it is grounded in fact - and is, in many ways, before its time. (She says ever so modestly!)
If a reader doesn't know my "credentials," how can he/she begin to understand that my blog is grounded in real science and real up-to-date developments in the field? This is a problem I've lived with since I started this blog. For the most part, people have believed me in the past because I have been ill for so long, for 38 long years. And doctors believed me, luckily. I have stated that I have impeccable sources and I do, indeed, have them. However, it's getting harder to write posts where I have to tiptoe around what my own "credentials" are. So, in light of making my life easier, I've decided that I won't need to be quite so careful about my own credentials. After all, getting an idea accepted by the medical community is a huge deal, being reviewed by other physicians who have huge names. It's much bigger than a blog or even a book.
I was, in fact, an English major in my former life and I do have a Master's degree in English - hard as it may be to believe because I know my writing sucks is so awful. However, the "awfulness" just gives more credence to the fact that I am quite impaired by CFIDS and fibro. Everything I've written about myself in the past year and a half has been true as far as I can remember. OK. Memory may be a sticky wicket here. (!!!) However - thankfully! - hubs has a good memory and I try to check with him about what he remembers. But that English background was very useful in that it taught me how to research most subjects and, more importantly, how to think logically and thoroughly, much of it to my family's chagrin. They have stated often enough that they don't ever want to be found inside my head. Ever. <sigh>
So, how did this bit of medical history start? When I came to my rheumatologist and brought up my theory of fibromyalgia coexisting with IBS, we decided I would write up a simple questionnaire for his patients and see if I was seeing things right. Lo and behold, I was! Other ideas I had for research (including, infamously, a question about the correlation between breast implants of women who had implants because of cancer vs. those who had implants solely for cosmetic reasons - back in the late '80s!) which I never took credit for. But I know they are out there, as do my doctors, and I have to admit that when I was in my youth I loved to stun (doctor) friends at medical conferences by asking questions - and that they had no idea where these ideas came from. You might say that I'm good at thinking outside the box - thanks in huge part to my left brain damage - the side that is "numbers" and science, and thus medicine as well. My left brain is quite damaged (see this post regarding SPECT scans) and I've had to adapt to right-brain thinking, much to the betterment of understanding what's going on inside of me. Or so I tell myself!
It might also be the time to say that I've done my fair share of advocacy regarding fibromyaglia and CFS/ME. I did it all before there was any sort of advocacy to be done. (Did I forget to mention that my rheumy was on the committee that famously established the criteria for fibromyalgia in 1990, the youngest on that committee? Boy! Did he ever have a hard time getting credence in the medical community with that "newfangled" idea!)
I take my "outing" very seriously and do so with great hesitation. I don't want anything I write to be taken with any more seriousness than it was before. One's doctor is always the way to find your answers. I only write my own experiences and what I know. I am a patient, albeit perhaps a long-term patient, who has had some pretty incredible experiences. I've tried to make the best of my illness. I've always said, decades before this blog could ever have been imagined, that if I had to be sick, I wanted those coming behind me to have an easier time of it, that their doctors could take a lesson from my life. Remarkably, that has happened in the name of my doctors who believed I was sick at a time when fibromyalgia
was considered something that rheumatologists
and neurologists had made up in order to make more money and business for themselves. True!
And so, I hope that when you read my posts you're able to see where this bit of information of how I came to have such "vast knowledge" regarding fibro and CFIDS originated. And for the sake of full disclosure, the presentation of the correlation of fibromyalgia
and Irritable Bowel Syndrome can be found at:
- COEXISTENCE OF IRRITABLE BOWEL SYNDROME AND FIBROMYALGIA. Roma((((Blanked out name can be found if you look hard enough!), The West Virginia Medical Journal 84: 16-18 (February, 1988).
- COEXISTENCE OF FIBROMYALGIA AND IRRITABLE BOWEL SYNDROME. mano,*(Blanked out name), Romano, I. Abstract. Presented at the American Rheumatism Association* meeting Savannah, Georgia, December, 1985.
1985! Can you believe it? I can't! We were still debating what the name of this disorder would be, "fibrositis" or "fibromyalgia." Those were the days, as one song says.
And with that I leave you - but not permanently, I hope! As always, I hope that everyone is feeling their best, only better - fibro-logic at its best! Ciao and paka.
(*Note: The American Rheumatism Association has since changed its name to the American College of Rheumatology.)
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I often think that people still wonder why in the world do I do so many articles on beauty, be it skincare or makeup, when I'm supposedly a blogger who is writing about CFIDS/ME/fibromyalgia and the myriad of problems that accompany these core illnesses. You'd actually be surprised at how often I wonder also.
I'm sure I have at least another hundred reasons and examples, but I thought I'd mention a couple today, even though I've "gone here" before (one example). I'll only cover one or two others today in order to keep this post from getting ridiculously long - I'm really working hard on that! (Huge sigh of relief from my faithful readers: I heard that!)
Those of you who've been following this blog are also probably aware (ad nauseam) of what happened to my daughter just two years ago: that she suddenly came down with some sort of never-seen-before vicious hybrid of Crohn's Disease and ulcerative colitis and within four weeks of going to her first ER visit and hospitalization had lost 45 pounds. She had been hospitalized five times at three different hospitals and during her second hospitalization at one of America's best medical centers for this problem her colon perforated. She needed emergency surgery ASAP. And this was just the beginning of her problems. (Some of it can be read here.)
With each doctor she saw (and there were literally hundreds in the almost two-year history) I was constantly asked her medical history because my daughter was in howling pain, too out of it to understand what was going on around her, not able to swallow saliva, much less water or ice cubes. They asked and re-asked, repeatedly, about her family history. They kept DISBELIEVING my husband and myself when we would say that we had no history of Crohn's or ulcerative colitis in either of our family histories, absolutely convinced we were lying or not seeing something. They were so sure that Crohn's and ulcerative colitis were hereditary, though these diseases are woefully not understood and there are only lots of "trends" that are seen and heredity happened to be this particular medical center's "hang-up," trying to fit square pegs into round holes, if you'll excuse the pun. I wanted to "smack them upside the head" at times, as some of the locals around here often say, hoping in vain that that would put some sense into them but refrained, thinking of the beloved nuns who'd not agree with St. Peter if they saw him let me through those Pearly Gates one day! I did disclose that I had been hospitalized once for colitis in 1975 as a result of the antibiotic use during the flu that led to my CFIDS/ME and fibromyalgia, along with IBS. But Irritable Bowel Syndrome is NOT Inflammatory Bowel Disease, a big distinction. They were just so convinced that their "theory" that Crohn's/UC is hereditary, though really, no one actually knows where it comes from, nor why, at the end of the day. It was simply maddening.
But what I found really interesting yet really frightening (another one of those understatements I tend to make) is the thing that I noticed about six months before my daughter got sick. It involved her beautiful green eyes.
Let me back up for a moment. I had the good fortune to be under an elderly doctor's care at a holistic clinic for about a year back in 1997. He'd been running the clinic for about 50 years - yes!! 50 years! And what was his main interest and that of the patients he saw? CFIDS/ME/fibro!!!! Yes! Amazing! He had patients flying in from all over the country to see this old man and the various practitioners he had working under him.
One of the things that this elderly (ancient) physician believed very strongly in was iridology and also looking at a patient's skin tone, the color, the pallor, the patient's gait - all the many bells that go off in a real physician's and healer's head like a computer that has not yet been invented, which registers everything that is right about a patient and what is wrong with a patient. Given that my mom was always a bit of a health nut herself, when America was interested more in martini's than in carrot juice, I was familiar and even fascinated by this old doctor. Here was a doctor who was spitting back things to me that my mom had been espousing all my life, and I had rejected them not only because it came from my mother, but because it was from my Russian mother and though she had had a degree in dentistry, it was not an American degree, but one from Europe, thus null in the US.
So about six months before the infamous frantic run to the ER and the resulting first hospitalization, I had noticed something that I suppressed for the first couple of months. And how I do NOT do denial - it just takes up too much energy, something I, as a "spoonie" or one who is trying to build up "health credits" constantly, am always trying to preserve and use judiciously.
I had noticed that my daughter's beautiful green eyes were acquiring a translucent quality. Whereas they had been a rich solid green before, they were now almost like see-through marbles. After about two months I was starting to get obsessed about it in the strangest way and this was becoming just too much denial and I don't function well that way. And yet here I was in heavy denial. Finally I realized that I had to mention it to my hubby: after all, if anything was amiss, I'd never forgive myself for it and I knew that when (note, WHEN, not IF) the poop hit the fan, I wanted it on record that this was something I'd noticed before, that it hadn't been an "immediate problem," but something brewing. Yet it took me a long time to work up my nerve because I was just that nervous about jinxing my precious "baby." Her father took note but wasn't overly concerned. I later noticed that she was sleeping a lot and that also give me the heebie jeebies, but it was the eyes that scared me the most.
Why the eyes? Because, for the most part, eyes are no longer studied in a way that gives a doctor the whole picture of the patient. Neither is the skin. And yet both should be taken in as part of a patients' health, good or bad.
Yes, the obvious signs in eyes are still looked for, the ones that can't be overlooked: the yellowing of the eye for jaundice, for example, or the signs of a concussion. But think about it: those are just the first clues that then call for fancy testing. But there are so many other things that are skipped. I remember learning in Psych 101 that the dilation and contraction of the pupil could mean lying or an excited state, that Chinese jade merchants would look at the eyes to see if the customer is truly eager to acquire what he sees in front of him or not and whether haggling should continue or stop. We parents were told to look at our kids' eyes for signs of drug or alcohol use. But doctors? Nah...forgetaboutit!
And we patients should be outraged about it. Look at how a doctor barely touches us any longer. I've been to dermatologists who have not touched my skin - afraid that my freckles might be catching? I've been to a neurologist in the past year and a half who never touched my foot when I told him about my newly-developed neuropathy in order to ascertain if I did indeed have it and how extensive it is. I've been to a famous CFIDS specialist who also claims to be a fibromyalgia specialist, who only touched 3 of the 18 tender points - and reluctantly at that!
And now doctors and third party payers are evaluating patients by phone or computer? Are they nuts????
When my daughter was moved out of the OR and into the Recovery Room, my hubby, the son with us and I were able to visit her for about five minutes, to be reassured that she had indeed made it through the surgery. We had prepped our son by saying that she would look awful when he saw her. After all, she'd just been through pretty serious surgery - panicked immediate surgery - and that she would look a bit banged up, the color of her skin would look awful, and so forth. We felt we needed to warn him: he had been through more than enough already, having been there to help me cope with my daughter 24/7, running errands and seeing things no 30-year old young man should see in that medical center, the suffering not just of his sister, but of all those around us. And he'd had to try to keep me calm until his dad drove like a bat out of h*ll from our home to the medical center, as I tried hard to keep up a calm exterior during said surgery, not very successfully, I might add.
Instead, what we saw in the recovery room was a real revelation: my daughter's skin was almost pink and the eyes, which were rolling around a bit from the anesthesia, already looked better than they had in months. I looked at my son and he looked at me and I could see him asking with his just barely-raised brows, "I thought you said she was going to look awful!" Instead, she looked wonderful. Not wonderful from a year ago, but wonderful for the last 6 weeks especially, and wonderful for the last six months for me. The toxins and diseased colon had been removed. Her color reflected her suddenly improving health - miraculously so.
So, this is yet another reason that we who have the invisible diseases also get a bit "upset," shall I say, when we are told, "you don't look sick." Because really, we do. We know in our hearts what we should look like and it isn't what we look like now. Some of us can disguise it better than others and some of us are very good at it and some of us not so good at it. But it really hurts that our doctors, who should know better, don't recognize the signs and instead rely on machines and tests.
As long as they are able to get away with this, I fear that we will continue to get care that is less than what we deserve and we will continue to get thrown into that psychiatric wastebasket, a trend I painfully see coming back again, one I had hoped I'd never live to see again.
And on that cheerful note (!) I hope all are feeling their best, only better. Ciao and paka!
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