MECFS Alert Episode 19

[Robyn]

http://www.youtube.com/user/MECFSAlert - Llewellwn King
 

"We go to the Senate in Washington, D.C. for a hearing on pain and get an exclusive interview with Senator Tom Harkin, Chairman of the HELP Committee."

[bakercape]

Watched it.  I was disturbed yet again by a the so called experts talking about how emotions are intertwined with pain. LIke by working on your emotions your pain will be better.

If your in pain it affects your happiness. Duh. SO fix the biomedical cause of the pain and the persons emotions will be better you dolts!

[Duncan]

Real pain?    It seems to me there is a false dichotomy being promulgated that one can have imagined pain. Imagined pain is an overtly silly notion. There is either pain, or there is its absence, and at worse, there is a posturing. Simply because the medical community is unable to source causes of pain, that doesn't render those instances unexperienced; the pain still exists.

[peggy-sue]

But pain by definition includes a massive psychological input.

That's the bit that tells you it's unpleasant, avoid it.

It's well known anecdotally, that there can be a very fine line between pain and pleasure - again - it's the psychological part of the pain which decides which is which.

If pain is chronic and useless - (ie it doesn't give you any useful information about protecting the injured part) then often psychological techniques can be used to reduce the the nastiness of the pain experience.

[Duncan]

A slippery slope there, and you know it.   

[peggy-sue]

You can't dismiss all psychology just because it begins with the letters p-s-y-c-h.

I'm well aware most of it is utter garbage. I have a 2.1 Hons. BSc. in it.

It's not a matter of being dualistic - you can't have body and "mind". (or soul or whatever stupid name you want to give this imaginary entity.

"Mind" is one of the things the brain does, and that's body.

[Duncan]

I know.   I promise I do not dismiss all psych stuff, any more than I dismiss all any-other-type-of-doctor stuff. I just dismiss the overtly self-serving proclamations, the spurious claims that only serve mercenary or small minded objectives - regardless of the discipline.

In a way, your first post here speaks to preferences, where mine speaks to physiology. That can be a starting point, but I know I have oversimplified already, and probably maligned your position in the process. It really is a dicey deal - and I'll wager most in that clip aren't equipped to debate it without falling victim to its inherent traps. It's easy to lose sight of the real topic: people suffering pain. Entire philosophies have been erected around the pitfalls of linguistics, as well as the duality of body/mind.

[peggy-sue]

I don't do philosophy or linguistics 

- they're the source of all the real garbage in psychology.

But it is possible to use certain psychological techniques to help cope with chronic pain. Honest.

[Duncan]

 

Edit: I was chuckling with you at the linguistics and philosophy things, not the techniques that can help with chronic pain.

[Robyn]

Well in addition to the chronic widespread pain that has been my reality for the last 18 years, I have a disk in my back that I believe is almost fully blown.  Now let's see if I could wish it away along with the other 7 herniations I would prefer that.  Wishing myself well hasn't worked so far and surgery does not sound like a fun option. Maybe I can just sprinkle on some fairy dust and I'll be good to go.  That is right up there with the mind over matter BS.  Ok I'm wishing really hard that I can repair myself with the power of my mind.  Wish me luck.

[peggy-sue]

If possible, when pain is really bad, try playing computer games.

These take up a great deal of your attention, continuously.

If your full attention is concentrated on the game, you haven't got much left to attend to the pain.

[Robyn]

I still work and sit for 8 hours which causes all my disks to crunch down on each other.  No amount of computer games can allieviate the nerves being compressed by the unstable disks. Believe me I've tried it all CBT, physical therapy, even biofeedback.  Pain is and has always been there.  It is something I live with at least until I'm not able to walk anymore.

[peggy-sue]

  That must be really, really horrible. I'm very sorry.
I don't think psychological tricks are any sort of answer, just that they can sometimes help make it bearable for periods.
But it sounds like your pain is way beyond that.

Do you not get any pain medication?
My partner's Mum has a morphine patch and uses both paracetamol by mouth and ibuprofen gel rubbed on, where it gets through the skin directly to the point of pain.

Through the three medications she gets some relief.

[bakercape]

All I know is that all the positive thinking, self-help books, relaxation techniques, seeing a therapist etc.. etc.. have not made a dent in my pain or in my disease.

My disease started with an infection and affected my immune system and central nervous system.

It wil not help me if the research community is looking at my emotions in regards to research.

I will be back to my happy running 5 miles a day self when they figure out the biomedical cause of my NueroImmune disease and a way to treat it.

[Robyn]

Having read how mitochondrial damage can escalate the degeneration of the spine, it makes perfect sense with being positive for a gammaretrovirus,  and how it could be causing the extensive damage to my spine.  As well as other major symptoms I have.