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763858 tn?1234811737

What Fibro REALLY is!!

Sorry I haven’t posted back…have been extremely sick and incapacitated!  I'm desperately at the "end of my rope!”   I went to the ER today, bc I've been dizzy, nauseous, vomiting, & having diarrhea (with some blood in stool), with off-&-On Migraines from hell, for about a month now. My neuro, rheumy, & PCP had NO ANSWERS for me this month, with all this.   So, desperate, I went to the ER. It only served to make my husband mad at me (as if we need any more distance between us!), and as usual...make me look like a hypochondriac.  ER Dr. did refer me to a gastro specialist, and I already have an apt. for a new ENT. ER Dr. thought I might have an inner-ear problem...PT told me the same thing...as I also have balance problems. I just feel like giving up!!  No one can seem to REALLY help me.

I DID buy a new book by Devin Starlanyl, the other day entitled..."Fibromyalgia & Chronic Myofascial Pain Disease...a Survival Handbook."  It was AFTER I posted this topic!   I've read some pretty fanatical ideas about Fibro in there (although, a few are fairly well-known to Dr.’s at this point), that no Dr. I've talked to believes in.  She quotes numerous clinical trials and research studies backing up the latest theories. For example, this book clearly defines Fibro as a CNS (Central Nervous System) & Bio-Chemistry Disorder.  She talks about how out biochemistry is so out-of-whack, that it affects the WHOLE body.  You can’t just have Fibro in the legs, arms, back, etc…  You either have Fibro ALL OVER, or you don’t have Fibro at all!  

Also mentioned was about the ground-breaking advances they are having with Neuro Bio-Feedback.   It helps to re-synchronize the brain wave patterns & BioChemistry in Fibro patients (as well as numerous other debilitating conditions).   I’d already decided that I was going to get Certified to become a Neuro Bio-Feedback provider, to advance my Speech/Language Pathology scope of practice.  However, when I read, not only in this book…but on numerous webites, that Neuro Bio-Feedback is making huge gains in Fibromyalgia…I WAS SOLD!!!    So, I’ll be going to a Neuro Bio-Feedback training seminar in 2 months for certification.  Trust me, I’ll be my 1st patient!!!!   I’ll be sure and keep it posted as to the results.  ;)

D. Starlanyl states that Fibro causes a dysruption in the Autonomic Nervous System...as well as the CNS & Peripheral.  I just took an EMG last week, with my newest Neuro, & passed it fine. Devin states that with Fibro, most neurological tests (as well as others) will come out fine, however, because our problems are in the biochemistry, we still suffer from the symptoms (hyperaroused & exaggerated at that!)...all the same!  So...every Dr. that I see thinks that I'm making this all up. They don't "tell me that", but they're actions say so!  

She also mentions that there are different “subsets” of Fibromyalgia…as Rapunzel was asking someone to list the different “categories of Fibro.”  I’d like to see that list too.   I’ve just got to the 3rd chapter so far, but if I run into any such “list,”  I’ll come back on here & post it.   I already know that I obviously belong in the subset which includes Hypoglycemic & Autonomic Neuropathy conditions.   Oh yeah…she mentions that there is a “subset” group who ALWAYS test positive on an ANA (Anti-Nuclear Antibody test).  I’ve tested positive for all 3 ANA’s that I’ve had done…and no Dr. can seem to figure this one out!  

The facts about “elevated Substance P…one of the fairly well-known accepted ideas in the medical field right now,” were mentioned in the book…along with tons of other research data.   She also points out the specific differences in Fibro & CFS.   They are not even close to being the same syndrome, although they are BOTH under the “Umbrella Category” of CNS Disorders.   Many of her other theories, however, ARE NOT!...especially the one about the Autonomic Nervous System being dysrupted.   I asked my neuro this the other day (as several Sjogren’s ppl had mentioned this to me, when I brought up my symptoms in the SS forum), and got laughed at.  I got laughed at again today when I asked the ER Dr. about it.   When I mentioned this book, he laughed again and said…”Oh yeah, you read it in “some” book?”   I’m SOOOOOO tired of getting laughed at and ridiculed for the condition that I’m in….ALL BECAUSE MY BODY/FIBRO CONDITION DEFIES THE LAWS OF MODERN MEDICINE!!!....at least through their eyes!   I found my book at Borders.   However, if anyone would like to order her book online, here is a link to her website:
http://www.sover.net/~devstar/

Has anyone here had “specific” tests done relating to the latest findings in Fibromyalgia??  These would include, but not limited to:

~Testing of the Cerebro Spinal Fluid for levels of Substance P, Argenine Vasopressin (AVP), & numerous other Bio-Chemicals
~Functional MRI (determines brain activity during “painful” episodes, etc.
~Levels of phosphates in the muscles
~Levels of phosphocreatine & Adenosine Triphosphate (ATP)
~Metabolic disorders (i.e. thyroid)
~Homocysteine & nerve growth hormone factors
~Insulin growth factor (IGF-I)
~Cerebral blood flow in the caudate nucleus
~Cell differential count in the CSF at the level of the brain stem
(and these are not exclusive!)

Wish all my docs thought like yours did Abotsd!  Cappie…yes, to your question.  I’ve had Vitamin D, and everything else you can think of…tested!  I feel as if I have one last hope...going to the Fibro clinic in Denver, CO.   At least THEY believe in the latest research data!   If they can't help me...THEN NO ONE CAN!!!
~tj  
4 Responses
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763858 tn?1234811737
Great idea VaBreeze!!  I hadn't even thought of posting the book there!  That's why many heads are better than one, & why we need each other!  ;)
~tj
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Avatar universal
I am interested in the difference of FMS and CFS that are stated in the book (as many who are dx'd with FMS also have a dx of CFS or end up with it).  

The Whittemore Peterson Institute has defined these diseases as neuroimmune.  This would indicate that not only is the CNS involved, but our immune systems as well.  

I am sorry that you had a bad experience in the SS forum.  No one needs ridicule when they are trying to seek medical assistance or advice.  I'm adding your book to our Library in the Health Pages for others to be able to refer to in the future.  I'm glad you are seeking answers and taking this path with your health.
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Avatar universal
"For example, this book clearly defines Fibro as a CNS (Central Nervous System)"

You bet it is !  Many of these "syndromes" are all CNS conditions... even CFS and multiple chemical sensitivity.
Helpful - 0
763858 tn?1234811737
Scratch the 1st sentence in the last paragraph...as I copied and pasted my "post" that I also posted in another forum.  Sorry.  ;)
~tj
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