Fibromyalgia FMS and spinal fluid pressure dysregulation

[Merida]

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

 

[Cort]

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

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

https://www.healthrising.org/blog/2...rebral-spinal-fluid-chronic-fatigue-syndrome/

Twenty people with ME/CFS (and headaches0 were given lumbar punctures. Other than their headaches they had no signs (such as papilloedema or visual disturbances) of IIH. They simply had significant headaches and were severely fatigued.

The spinal taps revealed that twenty percent meet the international criteria for IIH ( CSF pressure >20cm H20). They were reclassifed as IIH patients and treated.

Most of the ME/CFS patients in the study felt better after their spinal fluid pressure was reduced – but they do meet the other criteria for IIH.

Removal of the cerebral spinal fluid during the spinal tap – which reduced the cerebral spinal pressure – resulted in symptom improvement in no less than 85% of the patients (17/20) in the study -despite the fact that only five of them had CSF pressures above 20 and most had CSF pressures in the ‘normal’ range.

That suggested that even normal CSF pressures could be too high for some.

 

[Beth from Oz]

https://www.ncbi.nlm.nih.gov/pubmed/29317060

I hope this link works! I'm not so good with technology myself.

I also hope I have the correct study!

 

[Merida]

@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.

@Cort
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."

 

[Paw]

@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:

Because psychological problems are believed to underlie chronic pain conditions and patients exhibit exercise intolerance, the patients are often stigmatized and held responsible for their pain. Based on this hypothesis, the psychological symptoms of FMP, such as depression and catastrophizing, would be a consequence of the underestimated refractory debilitating neuropathic pain instead of the cause. In addition, the patients’ fear of moving may be realistic because an upright position and particularly exertion may increase CSP and thus produce more neurogenic pain, leading to exercise intolerance. Conversely, lying down decreases CSP and may relieve the pain, which explains the typically more sedentary lifestyle of FMP.

If the hypothesis is confirmed, FM and several other unexplained widespread pain syndromes would be considered chronic neurological disorders. Psychologically, this definition would represent a significant difference in the way the patients and their relatives, peers and physicians view the disease.

 

[Merida]

@Paw
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.