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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.

Friday, June 14, 2013

Friday Tidbits: Cortisol 101

Have you been tested for "everything" and "everything" comes back normal - yet you're fatigued and just want to cry or scream because you still have no plan of attack for getting better?  Are you (or your doctor) on the hunt for another reason why you are constantly running out of gas?  Do you yearn for a non-psychiatric diagnosis, some sort of tangible answer to at least some of the problems you're having, in addition to or because of your CFIDS/ME/CFS and/or fibromyalgia?  Are you tired of being looked at askance, or even accused of being depressed when you know you're not, or know that if you are depressed it's a secondary depression caused by illness, not CAUSING your CFIDS or fibro?  (I address the differences in depression here - and it's one of my favorite posts.)

How many patients with "invisible" illnesses have been told that they are in denial when they express their opposition to the notion that they're depressed and want their doctors to search for medical reasons why they're in pain, fatigued, have low stamina and overall feel like poop?

I've already written - ad nauseum for some I'm sure - about certain hormone deficiencies in patients with fibromyalgia, such as low levels of DHEA, growth hormone and thyroid hormone.  One hormone I've not gone into, however, is cortisol, the body's natural cortisone.  It was alluded to when I wrote about Dr. Janet Travell, one of my "medicine heroes."  She discovered that then-senator John Kennedy was suffering a severe deficiency of cortisol known as Addison's Disease and she treated him with cortisone injections. Without them JFK would never have had the energy or the stamina for the presidency.  This underscored how vital cortisol was for the body to function, especially in stressful situations.  (Remember the Cuban Missile Crisis from your history books - ancient broad that I am I barely recall it, remembering only the drills for nuclear holocaust!  And good heavens: can you imagine how many spoons JFK needed for that "tiny" little episode???)

Anyway... skip to more than half a century later, into a new millennium and doctors today understand its significance much better.  That, unfortunately, doesn't mean patients are being tested for cortisol deficiency when indicated.  Mind you, we are not talking about the cortisone shot that you may get if you've had the miserable misfortune of finding yourself reading a book in a field of poison ivy - as I did at age 9.  Whoops. And they only gave us calamine lotion! Whoops again... tangent!

What we are discussing in this post is a deficiency of cortisol and using cortisone medications to replace what the body should be making in the first place.  Again, my point being?

Many years ago, Dr. Leslie Crawford of the University of Michigan discovered that some of her fibromyalgia patients had low levels of serum cortisol.  And why is cortisol important?

I'm so glad you asked!  Cortisol is important for everyone. It keeps healthy people healthy.  Simple! Specifically, it's important because it enables us to tolerate stressful situations without literally collapsing from a strain on the body.  This hormone is made by the adrenal glands. Yes, DHEA is made in the adrenal glands, but in a different section.  

Dr. Crawford suspected that a subgroup of her fibromyalgia patients might be cortisol-deficient and tested her patients by drawing the cortisol blood test in the morning.  (More on adrenal failure and the possible CFS/ME connection in a future post.)  Lo and behold, Dr. Crawford discovered that many of her fibromyalgia patients had levels that were so low that they would become weak, very fatigued and have almost no stamina.  

Dr. Crawford postulated that many of her fibromyalgia patients have a disturbance or a dysfunction of the hypothalamic-pituitary-adrenal axis.  The hypothalamus, which is in the deep part of the brain, sends a signal to the pituitary gland (the same gland where growth hormone comes from) which, in turn, sends a message to the adrenal glands to make sufficient quantities of cortisol.  An interruption in any of these steps results in the body not making enough cortisol to function properly.  If this deficiency is not identified, often the patient will not be able to do the simplest tasks without stressing out his/her body. 

The problem is that if you can't make enough cortisol you can't even respond to the stress since cortisol is one of the body's stress hormones.  The good news is that if a cortisol deficiency is identified, treatment is relatively simple and inexpensive. But if this problem is not identified the quality of life, as you can imagine, suffers greatly. 

What to do? 

  • Make sure that your doctor checks hormone levels if you are fatigued and have low stamina and the explanations you're given don't seem to jive with what you're feeling.  ("Jive" - how about that word!)
  • If growth hormone, DHEA, thyroid levels are OK, an AM cortisol level should be checked.
  • Often low AM cortisol levels can explain symptoms and then proper hormone replacement therapy can begin.  

So, here are the take-aways for today: 

  • On the whole, rarely is cortisol considered in fibromyalgia.  And it should be! 
  • In order for your body to deal with stress, any kind of stress, it needs cortisol at its proper level.
  • Taking cortisone for a cortisol deficiency is not the same thing as taking cortisone for the inflammation common in problems such as hives, poison ivy reactions and the like.

If "everything" has been run, discuss with your endocrinologist (or rheumy who should refer you to an endocrinologist) how likely it is that you're hormone deficient in this area.  I find it truly amazing how many answers to the fibromyalgia and myofascial pain questions come back to hormones these days.  Truly amazed. And it gives me hope!!!  Hear that?  It gives me hope!

And there you have it.  Yet another hormone that might, just might, play a role in how you feel.

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

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