Article: Living in the Shadow of Pain: Jennie Spotila's Senate Testimony

You can view the page at http://forums.phoenixrising.me/content.php?540-Living-in-shadow-pain-Jennie-Spotila-Senate-testimony-cfs-campaign-end-chronic-pain-women

 

Very moving Cort - yes pain everywhere - the easy opt out here is just reactive arthritis (what in the bladder etc too ?). It is good to see your Senate so much involved now and research picking up in 2012 ....... might say we are watching all over.

 

I wonder about a kind of central sensitization process. Dr. Vernon described this as like hitting your thumb with a hammer and the pain never goes away and gets worse...the injury seems to be gone but the pain remains! Dr. Clauw thinks this is a huge issue for many disorders.

Hopefully this will be more than just a hearing and the Senate will devote some more resources to it. The NIH did a big overview and they recommended many more resources go to fighting chronic pain. We'll see!

 

A completely uneducated guess Cort - some kind of neuropathy from damaged nerves - I do recall one Doc in ER speaking about myelin sheath damage (he suspected). But Dr Vernon and Dr Clauw will hopefully solve for us.

I heard PPS does involve damaged nerves.

 

A completely uneducated guess Cort - some kind of neuropathy from damaged nerves - I do recall one Doc in ER speaking about myelin sheath damage (he suspected). But Dr Vernon and Dr Clauw will hopefully solve for us.

I heard PPS does involve damaged nerves.

Got to think some sort of nerve damage is involved Enid - have too many nerve symptoms such as burning sensations after exercise to think otherwise.

 

Yep, similar here. Even when on the path to recovery, the chronic pain seems to linger and get worse after (but not during) exercise. Like a switch turned on and forgotten to turn off..

 

It occurs to me that if you were to subject prisoners to the conditions that ME/CFS live with every day, it would violate international laws against torture.

 

A completely uneducated guess Cort - some kind of neuropathy from damaged nerves - I do recall one Doc in ER speaking about myelin sheath damage (he suspected).

Hi, Enid.

I think you might be on the right track in suggesting damage to myelin in ME/CFS. Probably the best documented brain-related observation in ME/CFS is slow processing speed. Since myelin is what allows nerve impulses to travel rapidly down axons, damage to myelin could likely explain the observed slow processing speed.

I think there is also a good basis to suspect myelin disrepair from the standpoint of the biochemistry of ME/CFS. We have good evidence for a methylation deficit in ME/CFS, and it is also known that at least three components of myelin require methylation for their synthesis: myelin basic protein, phosphatidylcholine, and choline plasmalogen.

Beyond this, it has been reported for many years that MRI images of the brains of people with ME/CFS show "white spots" in the white matter. The white matter is dominated by myelin, and this suggests damage to myelin.

I have also suggested that the sensitivity to electromagnetic radiation that some people with ME/CFS experience is due to disrepair of myelin, which removes the electrical insulation from the nerve axons and allows currents to be generated in the axons, producing neurological symptoms.

I think that all of this is consistent and is pointing to problems with the myelin in ME/CFS.

Best regards,

Rich

 

Rich you are a marvel !!!!! - please keep going. Yes of course to methylation and all your understanding - what struck/infiltrated/infected the CNS (I've MRI white spots on my brain but out of the fog now). Why, why, why one still asks (the cause). We'll get there so no-one has to go through 13 years of this.

 

Excessive amounts of pain receptors could explain this (as in the Light studies). Or any widespread malfunction to the peripheral nervous system (as in Jay Goldstein's theory).

 

Deepest sympathies to all those suffering from chronic pain. Whenever I suffer from short term aches and pain, I notice what a profound affect it has upon me, and how much easier everything becomes when it goes away. Best wishes to everyone with these problems, and I hope that more effective treatments are found soon.

 

I think the good news is that the research community is starting to address chronic pain - not associated with obvious injury or trauma - as a field in itself - a good thing for those with body-wide pain such as Jennie and so many others experience.

 

Thanks to Jennifer Spotila for this moving and spot-on testimony.

 

Thank you! It was cathartic to write it.

 

I just reread your testimony. This is one of the best descriptions I've read. I'm glad you were able to present it. And I'm sorry you are not able to get better help.

There is a thread over at proheath that lists doctors who are willing to use stronger pain killers. I read it there a few years ago. Maybe you already saw it. i can't find the link to it now, but it's possible the following URL was related to it. Not sure: http://www.fmscommunity.org/findingadoctor.htm

 

This the first time I heard anyone say "whole spine on fire" as this happened to me 3 months ago and lasted for over a week. Nothing helped, not Vicodin, intervenous steroid and inflammatories, prednesone I just had to wait it out. My Dr and the Drs at ER never heard of it and said it was probably a FM flair-up. Right?? It felt like someone took a blow torch to my spine.