Why we all seem to be getting worse...Starlanyl's idea

Discussion in 'Fibromyalgia Main Forum' started by orachel, Oct 12, 2005.

  1. orachel

    orachel New Member

    Originally I wrote this to keke 466 when she said seemed like her illness was degenerative. I'm reposting in case it stimulates anyones interest in light of the "we're all getting worse" post. According to Devin Starlanyl, there IS a reason why some of us might be degenerating....I just hope I did it justice in relaying her theory. If interested, read on.


    Hi there!
    Just wanted to drop you a line bc I saw your response to the "getting worse" post about how you feel your fm is degenerative, though experts say its not.

    I have a theory about this...they're wrong! LOL
    Just kidding....but really, Have you ever read Devin Starlanyl's THE FIBROMYALGIA ADVOCATE? If not, please please do...I'm so dang pleased with it my poor self is going out to buy it because eventually the library will expect their copy back...and I need this book!!! LOL

    Starlanyl's ideas... (and she's an amazing inspirational woman....MD, suffered with fm for YEARS, now dedicates her "best days" to writing amazing works to inform and support those of us who have these conditions, without the benefit of a medical license! She's really just unbelievable!).

    First, she makes a Big Distinction between FM and MPS (myofascial pain syndrome)...most rheumys think they're the same, at least in my experience. Devin says (using her 1st name bc typing last is killing me! LOL Mean no disrespect!) that FM is a condition affecting the neurotransmitters in the brain....fmers have "tender points"...you know, the 11 out of 18 points on body that are how we're usually diagnosed?

    MPS is actually a disease or syndrome affecting the myofascia...(the "skin" under the skin of a chicken, that covers the meat? You know, that sticky stuff on skinless chicken? We have that too).... Devin's distinction is huge....that means MPS is actually a disease of the muscle system in the body...or at least the covering of the muscle system. This covering gets inflamed (for a ton of reasons) and the inflamation on the "covering" of the muscle affects the muscle and makes it hurt like crazy....The way she describes it, this is why so many of us with MPS feel like we're inflamed, even though we're not to the touch of a physician. My godmother recently told me that my skin felt "taut"...kinda like the casing on a sausage! lol....

    I've been diagnosed with both, but like I said, most docs (including mine...grrrrr....looking for another) think fm and mps are the same dang thing.

    Devin says that MPS has "trigger" points...these are points of pain. These trigger points, if not treated (a variety of treatments) and contributing factors like stress and overwork and anxiety reduced from life, these "trigger" points basically branch off, creating 2ndary triggers, 3rd...etc. Even as you work out one trigger point with massage etc, the "contributing factors" such as stress cause them to come back and flare off to more trigger points. And then many of us have FM as well...the FM causes us to hold ourselves very stiff, which exacerbates the trigger points, etc....

    I believe that myself, and many many of us, have both MPS and FM....This is why so many of us feel as if we're "degenerating" in our condition! Isn't that amazing!

    Plus, in her view, those of us with FM and MPS have sort of a double edged sword....they have a contributary effect on each other, making the combination much much worse than either alone. I believe this explains why some people with FM have a few couple day each flares every year like they get the flu, and lead almost perfectly normal lives, and some of us are nearly (or are!) bedridden. If you have combination of both, the standard "exercise" protocol will not work for you unless you first eliminate the contributing factors, and then get pain under control (or vice versa)...then the Trigger points of MPS can be worked out with massage, acupuncture, whatever...and then the treatment of aquatic therapy or physical therapy or whatever can actually make a big big difference in our recovery.

    I'm sure I'm not doing this justice, but when I read this, my jaw dropped. It explains EVERYTHING I'm feeling, and what I love about her writing is that she doesn't just call upon her own experience with fm, or her clinical experience (she's an md) she also sites many many other researchers and publications...so her theory's have serious "weight" in my mind.

    Buy this book...seriously...it changed my life. Plus excellent info on getting pain control from docs, ss and other social services, finding docs, etc...And also a section I found particularly helpful about our responsibilities to the "well" people who love us (never exaggerate the illness to get out of doing something you don't want to, etc) and their responsibilities toward us (work actively in our recovery, accept what we say about our symptoms at face value). This was very very helpful to me.


    Hope this helped you!
    I am totally in awe of this fellow sufferer (she refers to us as a FMily...isn't that great!) and Doctor.

    Hugs!
    Rachel
    [This Message was Edited on 10/14/2005]
  2. gramaT

    gramaT New Member

    for your glowing report on Devin Starlanyl's book. I am going to get a copy from Amazon. I have read your posts recently and I'm sorry you are having such a hard time getting pain meds. My GP had me on Vicodin for a year and then moved me to Oxycodone which Ive been on for a yr or more. It helps a lot. I wish I could get healthy enough to get off of it but not yet. I'm learning a lot from all of you on the board and may someday go to one of the FFC's.

    God Bless and Heal you

    Carolyn
  3. orachel

    orachel New Member

    reading" for all of us! LOL....seriously...so many of my odd symptoms that just seemed to never have explanations for...she has explanations for. I'm sitting there reading going "so that's why my elbow hurts!" lol

    Hope you enjoy it! Now have to read the rest of her works...gonna ask for whole set for xmas!

    Happy reading!
    Rachel