The Role of the Rheumy in Treating CFS/ME, Fibro & Other Sundries

It was The American Academy of Rheumatology which set the criteria for fibromyalgia and used "The Three Graces" when they introduced the  fibromyalgia tender points!

Last night a reader left a comment on one of my posts asking me about my rheumatologist and what he treats me for.  She wondered if I would mind letting her know what, indeed, my rheumy addressed in terms of my health.  And how sweet: she asked ever so nicely, wondering if she could "impose" on me.  She also mentioned that because she doesn't have diseases "inflammatory in nature," her rheumatologist said that he/she wouldn't see her anymore.  

I slept on this reader's comment (for a whole two hours) and decided that there are two big things in play here. Today I'll address the first part and my next post will be the other "thing" in play.  Teaser: it's controversial, but it's the truth. 


Before I get carried away, let me say that I love readers asking me questions - often just because it gives me a topic to write about, true - but also because it gives me the opportunity to address something that will help others.   My only problem last night was that I was afraid that I wouldn't remember all that is, indeed, "wrong" with me. However, I'm giving it the old college try.

First, let me say that my rheumatologist insists on all his patients having a General Practitioner (GP) or Primary Care Doctor (PCP).  Understandable: he doesn't want to be treating broken legs, colds, flu, pneumonia and so forth.  In my case, my GP and rheumy work closely together. That being said, we need a "central guy" who is checking to see if anything falls through the cracks as I go to this "ologist" and the other.  For example, I get all my prescriptions from my GP - save one, the Human Growth Hormone (HGH), which is a story in and of itself.  My GP sends me to other specialists as situations arise, usually in discussing symptoms with my rheumatologist. 

Having said that, I have to point out in that in many ways, my rheumy is perhaps often more involved in sending me to other specialists when need be, because when it comes right down to it, most of my heath issues are a result of ME/CFS and fibro.  I also worry about getting on my GP's nerves and so try not to burden too much.  
  
So, what does my rheumy treat me for, in conjunction with my GP?  

Obviously, the ME/CFS/CFIDS and fibro are the biggest issues.  But we all know that there are a lot of comorbidities going on, and in my case, I'd venture to guess that 99% are a direct result of my ME/CFS and fibro.  Here is a good start as to what my rheumy addresses/treats, in my case:

• ME/CFS/CFIDS 
• Fibromyalgia 
• Myofascial Pain Syndrome (MPS) 
• Orthostatic Intolerance
• Migraine Headaches
• Body Migraines 
• Severe Insomnia (called "malignant insomnia" by one neuro though "malignant insomnia" has a different definition) 
• Pain
• Myoclonus 
• Low resistance to infection 
• Neuropathy 
• Restless Leg Syndrome 
• Tinnitus 
• Irritable Bowel Syndrome (though in the last few months you can read how severe it became, leading to hospitalization and calling in a GI)
• DHEA deficiency
• Nutritional IVs (I have trouble absorbing many vitamins and nutrients)
• Chelation (I'm a walking - crawling? - toxic waste dump with much heavy metal poisoning.)

For my migraines and ridiculously severe insomnia, I have been to neurologists and have had sleep studies (ordered by neurologists and pulmonologists), but they've not done much good - because I can't fall asleep for even the 5-10 minutes needed to register any sleep problem.  

I find that my rheumy and GP are much better than any of the neurologists I've seen over the past 38 years, when it comes down to dealing with my migraines and insomnia.   I've had one notable exception (and what an exception!) back in the mid to late 1980's, he who diagnosed my ME/CFS in the first place.  Sadly for me, he moved his practice to Hawaii. We're trying to find someone good just a tad bit closer.  I really need a fantastic neurologist because the problems are just becoming too complicated. 

And it's not that the doctors I've seen aren't good doctors.  It's just that we have a couple of problems in play here: 

• They don't understand ME/CFS and fibromyalgia enough to mesh their specialty with the ME/CFS & fibro.
• Too many simply do not believe that ME/CFS and fibro are real.  
• We are such a mystery that doctors have a hard time seeing and understanding the whole picture.
• We are a headache to most doctors.  

As you can see, I have problems which overlap and do need other specialists.  For example, I have HGH deficiency, going on since 1999.  In the last two years or a bit less, I developed hypothyroidism.  My rheumy and GP send me to an endocrinologist about once a year to have my levels checked.  Since my rheumy sees so much fibromyalgia in his practice, he sees a lot of HGH deficiency, so he ends up working pretty closely with my endocrinologist as well.  (My rheumy sees many fibro patients with HGH deficiency - sending so many to my poor endocrinologist that he can't retire, though he'd very much like to.)


Which leads to my next post - and the fact that this reader whose rheumatologist wouldn't see her because her diagnosis wasn't "inflammatory in nature."  There are other issues here in play.   But like I said, that's for my next post.  I'll just say it's a doozy of an example of what is going on in the minds of all too many doctors.  And, sadly, I can't say I blame them...

In the meantime, I hope this helps some of my readers.  

I also hope everyone is feeling their best, only better!  Ciao and paka! 

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Ethical Dilemma: Friday Tidbit

At a rheumatology medical conference in the mid-80's, one of many, talking to two rheumies...

Today I have a truly horrid feeling in my stomach.  I had planned to write an "up, up, up" post, knowing that I've not laughed much in the past month. I've written entirely too many medical posts lately.  Worse, I've been complaining a bit too much about my health.  OK, not complaining as much as reporting but it makes me feel a bit too self-absorbed. But today I had a fit!  A complete and total fit.  

Today I read a tweet on one of those Internet newspapers/newsletters that come out each day with various "articles," which are actually links to various blogs/websites.  These links are to writings which deal with CFIDS/ME/CFS and/or fibromyalgia that come across on twitter, depending on which newsletter, etc.  These various newsletters have been a boost to my blog and I appreciate that, more than I can ever say, believe me. A few of them publish an almost embarrassing number of my posts, just as they publish other people's posts. They do a pretty good job of getting hold of some rather great blogs/websites which I've read. They try to publish links to doctor's posts and even links to medical links if those are on their radar and are thought to help others.  

With all of that said, I want to make something VERY CLEAR because I have a huge BUT coming.  It is a HUGE but and I really don't know how to word this in order to convey the levels of concern - and more than a little outrage - that sometimes hit me.  

There are a few issues that are inherent in this age of "information."  I have hesitated to say anything at all for fear of being misunderstood and because I have found much social and emotional support with some of the people, and dare I say "friends" with whom I tweet.  And I LOVE twitter for that reason.  I have even found ideas for living life as a person with my fibro, CFIDS and the bucket load of medical conditions that I've managed to accumulate.  I've had great laughs.  I've had company in the middle of the night when the rest of the world sleeps. 

On the other hand, I do have a problem with some of the chatter on twitter.  And when I say this, understand that this complaint includes MYSELF as much as anyone else.  I hope I'm being clear here.  Stay with me because, as many of you know, I sometimes have to write more than seems necessary - but I want to cover all bases, crossing every "T" and dotting every "I" and I want people to know that this is a problem that I normally just dismiss as an annoyance.  However, today, for many reasons, that tiny percent became a big deal.

First, I want to know, what the heck are doctors doing on twitter?  If these doctors are any good at all, why are they advertising on twitter, because when it comes down to it, that is exactly what those doctors are doing: they are advertising and marketing themselves.  Actually I want to say they are "whoring" themselves, but I'll refrain from that.  

Instead I have a few questions:

• What decent doctor even goes to the trouble of doing such things?  Shouldn't a doctor be reading medical journals or seeing patients, or even returning calls to patients about their lab results, renewal of prescriptions and the other million little things that would actually involve patient care? 
• If a doctor really has valuable advice wouldn't the right thing be to publish it in a medical journal or at the very least have a letter written to the editor of a medical journal? These letters tend to be published if the doctor makes an interesting point to his peers on various concerns about patients.
• What responsible doctor gives out medical advice on the Internet or even face-to-face at a cocktail party or at church to the person sitting next to him in his pew?  That would be totally irresponsible because patients need a thorough evaluation and THEN given medical advice.

I have to wonder if the doctors on twitter went to an inferior off-shore medical school and if they even got beyond an internship in this country (the bare minimum required by law in order to practice) in some Godforsaken prison with the worst scumbags in the world?  I have to wonder are THEY twittering from a prison themselves?  I have to wonder the following as well:

• a) what is their agenda?
• b) how good are they?
• c) can they not make a living and therefore have to sell themselves?

Second: who are the people who write blogs?  And this is where I have problems with blogging in general. 

Let me say that I suffer over each and every post I write.  The medical ones give me huge stomach aches and make me physically nauseated when I am finally ready to hit "publish."  I have worked on those posts for at least a day and even longer - and I'm talking at least 8 hours if not MUCH longer for the most primitive form of my more complex posts - in order to make sure that I have all the correct medical information.  I consult with impeccable sources and then I do a little bit of research to see what I can find on the Internet.  I tend to check out places like the Mayo clinic or other sites that I know have more or less accurate information.  Heck, I've even found mistakes there.  They aren't God, after all.  I'm not God either - but at least I know it! 

Furthermore, I dig and dig and dig until I come up with what is the most accurate information that I can without a healthcare degree.  I wasn't an English PhD student for nothin'.  (And let me make it clear I did NOT get that PhD because I had to drop out mainly for health reasons but got impeccable recommendations which led to jobs in two "major" publishing houses in New York City.)

Back to the way I write my posts: more often, especially in the beginning when I was wetting my feet, I would simply write more about my personal experiences.  When I would venture into anything medical I was especially careful.  That's when I'd check unimpeachable sources to see if my idea for a post was even valid. My "unimpeachable sources" include physicians who have published in medical journals and have even been declared expert medical witnesses in court.  When I tackled complicated concepts, like DHEA or Adult Human Growth Hormone deficiency, I would even vet my information with nationally-recognized specialists in the field.

Furthermore, I know that everyone knows that I'm not a physician - you'd have to be pretty brain-dead to think I'm a doctor.  I also don't give out medical advice.  I report what I know and what I've lived through and even at that, I get my records checked out to make sure that I'm not even giving you the wrong date.

So where am I going with all this?

I have read certain posts which report the opinions and finding of various doctors, many of whom are misrepresenting the facts.  I realize that everyone is entitled to their own opinions, but NO one is entitled to their own set of facts!  

And today, I finally hit my limit of bull in what I read on the Internet.  Why?  Because today I saw a link to an article that caused me to have a fit.  I knew it was not accurate the moment I saw the title.  I got really curious and read the article and I saw the name of a doctor whose name is EXTREMELY familiar to me and not in a good way, whatsoever.

That's when I'd finally had it.  I have tried to be discrete, in part because I don't want a lawsuit on my hands.  There are other considerations as well, but if I keep on we'll never get done with this post.

However, now I have an ethical dilemma.  What  do I do?  Do I report some of the names which I know are absolute sh*theads or do I let it go by me?

On the other hand, if I give out names of doctors who are actually wolves in sheep's clothing that makes me as bad as some patients who will sabotage a doctor's reputation on those idiotic doctor's ratings sites on the Internet, upset because they didn't like to pay for their healthcare or were upset that a doctor kept them waiting too long.  

Too often patients don't even know if their doctor is really any good.  When our daughter got sick, I had no idea who the best people in the Crohn's/Ulcerative Colitis field were.  We had to go into it all semi-blindly and rely on friends of friends who had a bit of "inside" knowledge.  I freely admit that I've had the champagne of care for my own medical problems, going from New York City and working myself south and west, geographically speaking.

I knew when the doctors treating my daughter were wrong with her pain management, but when it came to her unique and never-seen-before case of vicious and sudden onset of Crohns/UC, we were basically clueless as to whom we were trusting.  And to give credit to her doctors who dealt with her case in the disease situation, these doctors (and there were literally scores of them) freely admitted that they had no idea what was happening to her precisely. 

I, personally, have been to more doctors than I can ever remember.  I do have contacts - excellent contacts - in the medical world.  I've come across great doctors who knew their stuff, at least one who has testified in front of congress, mediocre doctors (the ones you forget) and awful doctors who are out there advertising the stuffing out of themselves.  Yet I've never besmirched anyone by name.  I know that people are loyal to doctors.  I know that doctor/patient relationships are complex but are also sacred, often a matter of you love one or hate one.  

I've had only one doctor whom I've seen that I can say that I absolutely LOATHE on my own behalf and I have complex feelings about the one "major medical center" which saved my daughter's life, but also put my daughter's life in jeopardy.  Had I not been by her side 24/7, with a relief of a family member if one was around, she might have very well died.  If anyone's a very careful reader of this blog, a great detective, they can figure out who these people are, because there's always a trail left behind.   

Yes, I HAVE withheld personal information, but I have never actually lied to anyone on this blog.  I don't lie in life.  I don't hang around with liars.  I don't lie here.  I can be outrageous.  I can be wacko, and I can be a lot of other things, but I have never lied here.  I have a HUGE bugaboo about lies.  A real "thing." 

Yet part of me feels that in withholding names it feels as if I'm lying.  Of course there are quite a few things that I've left out that don't give a complete picture of who I am.  This is not a blog for my most personal details!  I AM entitled to my privacy, be it because of good taste, or other reasons.

Why is it then that today, however, I feel like I am lying?  Excuse me as I go take a bath to wash the brown stuff that got on me today when I read some real rheumatology, and more specifically, fibromyalgia sh*t.

As always, I hope everyone is feeling their best, only better.  Ciao and paka.


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(For full disclosure: Why was "Friday Tidbit" published technically on Thursday, by 69 minutes?  Because it would have been 13 posts for February - it's now March 1st as I add this - and I've been superstitious about 13 (especially Friday the 13th) since that was the day my daughter's nightmare with her IBD began so suddenly. It had always been a good luck number before, but not now!  But it WAS actually Friday somewhere over the Atlantic.  This is as close as I've come to a lie.  But when your kid... well, you know!  69 minutes seemed the heavy investment, though hubs and I discussed it for hours as to whether or not it was ethical.  I was about to wait for Saturday, but I also try to keep my promises and Friday Tidbits was a bit different today, hence "Friday Tidbit" with no "s" coming after the "Ethical Dilemma" part. Plus now I've added this note on Friday.  I almost sound like a Jesuit priest, appropriate for this day when the Pope relinquished his job. (Hey, I'm neutral guys!)  And you wonder why NO family member EVER wants to get into my head?  They are the sane ones! ;))

Fibro Is No Accident

If you're going to fall, fall the right way!

There are many ways in which a person might develop fibromyalgia.  In my particular case I can recall having several significant accidents which involved my head and neck as a child. (Not surprising is it?)  Thankfully these weren't  severe enough for me to have surgery or even any hospitalizations.  However, looking back, I can't help but feel that those falls contributed to my present health problems. (Wanna know how to freak out a rheumy nor neurologist?  Tell him about your head traumas and watch him turn white!)  Although my CFIDS/ME/CFS was most probably caused by a bad "flu" in 1975, my doctors and I believe that the fibro was just ready to come popping out as in "the straw that broke the camel's back": I had become predisposed (by a LOT!) towards fibro because of the freaky (and I do mean "freaky") head and neck trauma I sustained.  I 'll have to save those gems for another post when we all need a huge laugh!

Quite a few people have mentioned to me that it wasn't until they had been in a bad fall or in a motor vehicle accident that they developed fibro.  Would they have gotten fibro anyway?  Or did the trauma somehow trigger the development of fibro in those people?  

Many years ago there was disagreement among doctors as to which it was.  For example, there was a large conference in Vancouver, B.C., Canada in 1994 to settle the issue.  It did just the opposite.  The doctors felt that they needed more information and more studies to answer the questions as to whether or not trauma could cause fibromyalgia.  Up until that time, there were only four published studies linking trauma and fibro in a cause-effect relationship.  The proceedings were published in the Journal of Rheumatology in 1996. 

Since that time, more studies have been done and by 2001 the consensus of the leading rheumatologists at a conference in Toronto, Canada was that in some cases trauma can indeed  trigger the development of fibromyalgia.  This opinion was unanimous and the paper was published in 2003 in a special edition of The Journal of Musculoskeletal Pain whose editor and chief is I. John Russell, MD, PhD., a prominent internationally known fibro expert who was also a member of the committee that published the fibromyalgia criteria in 1990 (mentioned previously).

Despite all of this information there is often resistance on the part of accident insurance companies to pay for the medical expenses of someone who's developed fibomyalgia in a motor vehicle accident due to someone else's negligence.  Just because you can't see this "invisible' problem does not mean that it does not exist. Giving insurers the benefit of the doubt (ahem) this can very well be because the insurers do not understand how a "whiplash" injury to the neck or a low back injury due to a rear end collision can evolve into a widespread pain problem like fibro.  What further complicates the situation is that it takes time for the fibomyalgia to develop.  Even more confusing, is that many patients with such injuries do NOT develop fibromyalgia.  Consequently, a careful evaluation must be made in each and every case to determine whether or not an injury caused fibro.

This situation is not only of theoretical importance.  Injured people need the best treatment possible and conventional health insurance can only go so far.  If an individual is injured by someone else in a motor vehicle, for example, all of their injuries, including fibromyalgia, should be covered.  This often requires a large settlement to cover the cost of medications and treatments that will likely be needed indefinitely as there is no "cure" for fibro.

What can be done?  If you're injured, make sure you get an excellent evaluation and if widespread pain was not present before the accident, make sure your doctor checks you for fibro.  Remember, there are now two different sets of criteria that can be used: the 1990 criteria published in Arthritis and Rheumatism and the 2010 criteria published in Arthritis, Care and Research.  Fibro is not a "wastebasket" diagnosis and can cause a great deal of suffering and even so much impairment as to be disabling.  (See other post re disability.)

Don't let this problem get out of hand.  Take advantage of the "window of opportunity" when healing is still very much a possibility.  Get early diagnosis and treatment so that things don't progress to the point of where you can no longer live a productive life.

As always, hoping everyone is feeling their very best, only better.  Ciao and paka!


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