Fibromyalgia FMS and spinal fluid pressure dysregulation

Discussion in 'FIbromyalgia and Pain Research' started by Merida, Feb 3, 2018.

  1. Merida

    Merida Well-Known Member

    A new study from Belgium researchers ( Hulens M et. al. Fibromyalgia and Unexplained Widespread Pain: The Idiopathic CSF Pressure Dysregulation Hypothesis. Med. Hypothesis 2018. Jan; 110: 150-154) links widespread pain to abnormal CSF pressure which floods the nerve sheaths of nerve roots and causes damage. It is appreciated that FM patients have definite neurological deficits. Plus, 22% of adult women with diagnosed Chiari malformation report a Fibromyalgia diagnosis. ( If someone can provide direct link to this paper that would be great. New software for me - can not figure out how to do this now
    Merry likes this.
  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I am sooo glad you put up this link. Check out his blog on ME/CFS

    Merida likes this.
  3. Beth from Oz

    Beth from Oz Active Member

    Merida likes this.
  4. Merida

    Merida Well-Known Member

    @Beth from Oz
    Thank you for posting the abstract. Yes, I was diagnosed with Tarlov cysts by a neurosurgeon, as well as dilated upper thoracic nerve roots. The Tarlov cysts are often missed because sacral MRIs are rarely ordered. Plus, it may take a neuroradiologist to evaluate the sometimes subtle changes which indicate dilated spinal nerve roots.

    Again, until researchers appreciate how the central nervous system functions and how spinal fluid circulates between the brain and sacrum, many ( most? ) of us will remain a mysterious conundrum of symptoms.

    But having said that, I have appreciated this particular problem for many years and could find anyone who can solve the problem to the point where I have decent function. I have tried everything, and some of the very fine physical therapists, John Barnes myofascial release, craniosacral, sacro-occipital, etc etc. But my sacrum and neck are still unstable. Think this is happening because of off midline fusion of the filum terminale in the sacrum - related to scoliosis ??

    Neurosurgeons Tubbs, Oakes, Hansasuta ( Univ. of Alabama) published years ago that 3 out of 27 normal cadavers had off midline fusion of filum and dura in the sacrum.

    Would love to get enough energy to do blog: Appreciating the interface and function of the central nervous system and musculoskeletal system.

    Working with a very gifted Filipina woman now. A strange chance connection, and absolutely the best body worker I have experienced. She is from the Hillot tradition of ancient healing in the Phillipines. Speaks little English. Goes right to problem areas. Appreciates how important the pelvis is. Tells me she is doing "body overhaul."
  5. Paw

    Paw Well-Known Member

    @Merida were you ever treated with acetazolamide for your Tarlov cysts? The authors of the new study hint that it might be worth looking at for FM and other conditions.

    The full text is here. It's filled with intriguing possibilities for people like me with apparently neurological etiologies. Lots of familiar connections and symptoms.

    I particularly appreciate the authors' side mission:
    Merida likes this.
  6. Merida

    Merida Well-Known Member

    Sorry this response has taken so long. Yes, I tried Diamox - in Peru in 2013 for altitude. Small doses, but didn't feel quite right on it. I added in methyl prednisone and not only tolerated altitude, but felt much better all over.

    Oh, I am so weary of all of this - as many of us must be. There is something unusual about our structures. Why ? Why hasn't the problem(s) been solved by thousands or millions of years of upright posture?

    There is new info just out on the elongated skulls ( 2,000-3,000 years old) of Paracas, Peru. The foramen magnum is situated much to the posterior compared to regular skulls. DNA studies have revealed haplogroups U2e (think I am remembering this correctly) and H, H1. Maternal haplogroups that are common in the Black/Caspian Sea area. And there is a young baby elongated skull that could not have achieved its shape by cradle boarding.

    I just don't know, but keep searching. Hugs and Blessings.