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.

Tuesday, November 20, 2012

3 Fibromyalgia Tips (A New Series?)

Four-month-old Irene wants to have a discussion about saying "no"!

I thought I'd start a series dealing with fibromyalgia tips, very short ones.  OK, I know.  You've heard "short" from me exactly HOW many times?  However, if I can pull this off, it would be no more than 3 tips with each fibro tip-dedicated post.

These would be "things" that I've had experience with personally with my severe fibromyalgia and/or "things" my rheumatologist and GP have found to be of help with their own fibromyalgia patient, be it accompanied or caused by CFIDS/ME/CFS, lupus, rheumatoid arthritis or the scores of other problems that can cause fibro.  Some tips will seem obvious whereas some might be a complete surprise - or so I hope. Now I just need to come up with a good title for the "series," in addition to those ideas. (Irene bangs head against headboard today!)

The usual caveat comes in as it does for most blogs dealing with fibro, and indeed any illness.  That is, I'm most certainly not a doctor, though I AM a veteran of the fibro war from well before fibromyalgia was even described.  Furthermore, we have all found ourselves in this rotten situation for all too many different reasons and we're all made differently, so what may work beautifully for one person, may be a complete non-starter or non-issue for another.  So with those thoughts in mind, I begin this new "feature":

1. HGH (Human Growth Hormone):
More research and positive results (the "bad news" kind) in regards to the low level of adult growth hormone in fibromyalgia are seen every day and in staggering/surprising numbers.  Two clues to HGH insufficiency are a "big" belly and slight scratches or tiny kitchen burns which would normally not show up at all, suddenly not healing.  If this is happening to you and no matter what you do to try to remedy the situation, nothing works,  and you suspect a problem with your HGH levels, please discuss this with your doctor. Keep in mind that this is one area which most doctors are not well versed in: it's pretty specific or specialized knowledge, so you may need a bit of documentation/homework to present to your doctor (with as much humility as possible) if you decide this area needs investigation.

2. Disability stress: 
If you're getting stressed out because of bureaucratic run-arounds and nothing seems to be helping in resolving your disability paperwork to come through, consider notifying your local representative.  I realize that this may be more effective in areas not heavily populated - getting to your local representative in places such as Chicago or Los Angeles gives you some mighty stiff competition from so many varied areas of concern. But really, you'd be surprised at how quickly some things can be processed if you go this route if you've been banging your head against the proverbial wall, with no results, paperwork always stuck in some limbo.  Better yet, a one-on-one talk with your state congressman is even more effective than a letter or phone call if you're able to be "out and about."  I'd also venture to say that getting to know your local representative in the first place is not a bad idea.  You just never know when that personal connection might come in handy.

3. Learning to say NO!
Just because you have ALL this time on your hands - which is how the world perceives those with "invisible" illnesses - don't get bullied into doing tons of favors for other people.  Listen up, please: tell those who are insensitive enough to ask for health-draining favors that your doctor forbids it (whatever the "favor" is) and put the blame on him. And this would, most likely, not be even close to a "white lie."  (I have a real bugaboo about any sorts of lies.)  Your doctor, if he's worth his salt, most likely HAS spoken to you about your limitations, talked about "health credits," pacing yourself, avoiding needless stress, the need for rest and so forth.  So don't be embarrassed to evoke doctor's orders when in a bind!  I know that it's hard to go this route because I rarely did so myself - and look where it got me!  Yet WHY is it that we're hesitant about being honest?  Furthermore, that's what you're paying your doctor for: to be your health advocate.  Take advantage of what you're "getting," ie, great advice!

What do you think about these tips or this fibro tips concept?  Let me know ... if the comments box works for you, that is!

Happy Thanksgiving to those celebrating my favorite holiday.   As always, I hope that everyone is feeling their best, only so very much better!  Ciao and paka!

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  1. Great tips, Irene. And not too long either! I am with you on the problem of saying 'No'. Sometimes we heap too much on ourselves too as we want so much to engage with the world, yet the process exhausts us. Being honest may have to start with ourselves as we face up to what we can or cannot achieve without burn-out and relapse. :)

    1. Thanks, Joy! (So glad you agree that it's SHORT!) Hopefully, many more tips to follow, though in small doses as I try to face up to what I can and cannot achieve without paying too big a price. xx

  2. Sadly growth hormone is very hard to get, unless you can pay thousands a month. I don't have fibro, but I have CFS/ME and bad growth hormone deficiency, and I can't get it.

    It's possible to raise growth hormone levels with many meds, e.g. melatonin, Xyrem, baclofen, buspirone, bromocriptine and pyridostigmine. Sadly in my case none of them would work (I'm already taking baclofen and melatonin), as I have severe pituitary damage. But some of them have been shown to work in fibromyalgia (and others may work).

    1. Hi Maija!

      Unfortunately, your body has to be producing what is basically NO HGH for insurance to cover it. This is one reason that I dislike the fact that it is called a "deficiency" when it really means you're not producing it at all, for all practical purposes. It's "med speak," misleading, but if I said "no HGH" that would be medically misleading/inaccurate.

      It was tough but I went through it all back in 2001. Today the arginine stimulation test is available in our small town (available only in one hospital in a very large city 1 and 1/2 hrs from us at the time). The whole process is much faster now, though there is a "convenient" shortage of arginine in the US (the problem is being addressed) and places will try to tell you you can do the insulin route, a very dangerous way to go.

      Please do check the search box for HGH or the arginine stimulation test. I've written a bit more about it, though I should probably write more. Dr. Robert Bennett and now others have written much about this in the med literature.

      Without the HGH, I'd be dead. By the time the insurance company, government, etc, ok'd everything, I was in the hospital literally dying and the crazy part was that we could NOT buy it ourselves! All other roads had been tried and nothing works when your body stops making it, though if it's a low deficiency, the meds you mention can be quite helpful. i've also suffered irreparable damage because of the whole delayed process and dying "bit."

      I'm sorry you're having a rough time of it, an understatement, I know. I really hope that things improve for your situation. Heck, 2 yrs before we started my process it wasn't even allowable for adults to get it at all. It's all very hard to do. Again, i encourage you to read my post where i go into much more detail. I truly wish you much luck. xx

    2. Majia, here is the post I mentioned above. I'm sorry it's so long.
      Best of luck to you. I know how frustrated you are.