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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, January 30, 2014

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:
  • 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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