Interview with yours truly about pain and pain management

[funny_polymath]

1) As best as I can determine, I had to basically forge new pathways to my hands. I say this for many reasons, but one of the most telling bits of evidence is that I 'lost' the "mediating reflex arc" to the brain. The primary reflex arc stems from a ganglion in your spine - it's what jerks your hand away from a hot stove way before your brain could possibly react. But the mediating reflex arc then comes in to say, "OK, everything's cool now, chill". That doesn't happen with me. My arms and hands will flop around for a second or two (I continue to get better at supressing this and no longer spill hot coffee on myself, thankfully!). So, when learning to reach and grasp, to use my fingers, I had to... hard to put into words. I had to 'find another way' back to my limbs, my fingers - and it is a different way - yes, I no longer take it for granted - there is an intentionality - and sometimes I forget to pay attention, and I'll suddenly drop something. But it's also a different... sensation. I don't just mean the sensation of touching something, which is WAY different because of numbness from the shoulders down - I mean that the 'sensation' of willing to reach for something and then reaching for it is... foreign, different. Of course after over 20 years, it's becoming more familiar, but it's still 'wrong' in some ways. To be concise: I think it's a combination of new pathways and extra concentration. As to learning, it's pretty fascinating, and frustrating. ANYTHING new on guitar (or anywhere else, really) is hard as hell. The old muscle memory for scales and chords came back - for those I played before I was hurt. But for new stuff - ANYTHING NEW, but my hands are now exceedingly slow learners. I had to get them to 'remember' everything pre-accident - so the first time I did something I hadn't done since before was/is always kind of crazy. The first time I had to wrap christmas presents again, my brain had to tell my left hand (the less neurologically compromised of the two - parts of my right hand still feel like prostheses), and then my left hand somehow taught my right hand. Can't really explain it better than that. But I ain't gonna win any awards for guitar ability, that's for sure - I am limited - but so was Vic Chestnut, and he wrote great songs - you work with what you've got - but I do get VERY upset sometimes when I simply cannot learn a new scale or chord progression.

2) EMDR indeed gives the brain the opportunity to process unprocessed truama. It gets all of the parts of the brain to 'see' each other and integrate a common experience that had previously been sort of Balkanized in the brain. In my case, resolving those experiences through recapitulating them actually worked to alter (radically alter) physical symptoms. The mind and the body are not divisiable. We think they are, but they're not - and even our language hints at this knowledge. For instance, people talk of a 'gut feeling' - well, the gut has 90% of the Serotonin receptors in the body - not the brain. And through the autonomic nervous system, the gut sends approximately 9 times more information TO the brain than it receives FROM it. Western science is just starting to wake up to the fact that our beings are much more connected, that our physical and intellectual lives are really more manifestations, flavors, of a common experience.

Absolutely worth watching. Thanks for sharing your experiences.

I've a couple of questions. You mention that picking up a cup now is a very different action from before you had your most serious spinal injury. Do you think it's because you have had to reconsider the action more from a quantum point of view (as in which muscles are moving) with all of the awareness of an adult than when you learned it as a child (and essentially took the ability to move for granted)? If so, it has ramifications regarding teaching and learning the guitar and other musical instruments.

Also your observations regarding psychological and physiological pain are huge. While never having been in the kind of long term pain you have experienced, I have been in pain for a week to the point where my brain shut down and I blacked out, and the thing that got me through it was hope, in that I knew it would be resolved. Without that hope I too could see how a person could lose the will to live. I share your observations regarding PTSD, and in fact the chemically reactive nature of Western Medicine as a whole, although it's more applicable to individual cases...... IOW, I'm not going to throw out all the rules regarding hygiene, but I'm not going to take it to the extremes where my immune system has all germs removed and cannot build a suitable defence. The trauma of the injury took it's toll, and the EMDR therapy you received was incredibly interesting. It sounds like a form of regression that lets you deal on a one-to-one basis with the pain itself. In a way, it seems like the physical pain builds up in much the same way as psychological pain does, and EMDR therapy provides a safe release, in much the same way as therapy provides a controlled regression (referring not to hypnosis, but more to a psychodynamic clinical treatment) and lets the brain treat incidents on it's own terms.

Long winded, but I hope that makes sense?

 

[funny_polymath]

Beautifully put, Cobbler! We gotta meet and have a cup of coffee some day! We started off on the wrong foot (that being MY foot in MY MOUTH), and I have come to appreciate you and respect you so much. I knew you were in a wheelchair, but didn't know more of the story. I am glad you shared it. You have mega courage, and mega lust for life. And what you say about the 'calm place' isn't silly - it's gospel to me!

Much Respect to you.

Great video! Your experiences paralleled mine in many ways and we solved them in much the same manner. I was paralyzed in an auto accident when I was 21. Though my spinal cord was not severed it was crushed and didn't receive oxygen for an amount of time that rendered it a "complete" injury. I cannot tell you how many times during my initial recovery and even to this day have been told "oh your pain is what we call phantom pain" and my replies were along the lines of let me shove this phantom pain up your ass and get your reaction. I have very little respect for doctors to this day and feel they are more pill pushers for the pharmaceutical companies than healers. It's all about treating and masking the symptoms as opposed to finding and dealing with the cause in my experiences.

I too got tired of being treated like a guinea pig where they did tests and procedures that made no sense to me. As you said, you are in a vulnerable state and at the time and I was just grasping for any help possible to get past the injury, pain, and reliance on others. I too had a great rehab nurse who changed everything for me. I ended up marrying her. Go figure. I also demanded to read my charts and had to have lawyers intervene to make that happen. The doctors and administrators were NOT HAPPY when they had to turn it over to me. I actually had a lot of costs rescinded because they could not justify many of the tests they performed purely as an educational exercise. I could go on for days on the abuses and ignorance I personally was subjected to and saw with respect to other patients.

I still to this day have abdominal pain that comes and goes often for weeks at a time. I have taken all the opiates and as you stated they just take the edge off but only made it worse when they wear off. I hated what they were doing to my mind and the feeling of dependence to only slightly make things more tolerable. Over the years I have found the best solution for me when the pain strikes is to get inside my own head to a calm place and use breathing exercises. That may sound silly but it works for me.

I most certainly have not gone through as much as you but I find it remarkable that we shared so many experiences and came to many of the same basic conclusions. I never did pursue any formal non-western medical assistance but definitely tell everyone that my best advise for anyone with a severe injury or ongoing medical issue is to take control personally and not to blindly believe what the docs say or recommend as the gospel. Do your homework!

Oddly enough and similar to your conclusions that many would say is just plain illogical I count my injury as both a traumatic experience but one that I gained so much from. I was able to excel at wheelchair tennis and basketball and travel the world doing so. I have met so many remarkable people in my journeys that I would never have encountered otherwise. A lot of good came from something so terrible. Crazy I know.

Your story should be recommended viewing for anyone enduring traumatic and painful circumstances. Well said and articulated. Bravo to you and good luck in your future endeavors.

 

[funny_polymath]

Someone mad a comment about these kinds of ordeals making one strong. It's very interesting to me because although I think that's true - I also think it had to be there all along. I saw too many people 'waiting to be fixed' in rehab - sitting like lumps - and indeed, I was that way at first - cowed by the pain, depressed beyond all reason by the loss - but I 'woke up' - and some never do - MANY never do. I think some people have more will in some areas than others. I have very little willpower over a favorite food, but a lot when it comes to trying to recover and rebuild. I met a guy in rehab who'd been paralyzed by a stray shot in a Harlem gang fight when he was 9. He was in his 50s now, and was back in to be treated for massive bedsores because he would not get out of his wheelchair! He hardly slept, and was always busy learning and traveling and.. living. So, there he was, face down on a gurney, after butt surgery, and what was he doing while most people sat like immobile lumps? He was using an arm-bike to work his arms. For hours. He was the only guy besides me who was working as if his life depended on it. The contrast between the two of us and virtually every other person I saw at the Rusk Institute was startling. People would visit me and say: wow, you're working so hard, where do you get the drive? My answer was: why wouldn't someone work hard? I mean, this is my LIFE - I've got nothing better to do! Just the fact that people could even asked this question pointed out to mie that we're all made differently. So, it seems to me that some people give up more easily than others when faced with certain challenges. I give up easily on math problems - go figger. We're all strong, and weak, in differing ways and in different measure.

 

[funny_polymath]

Keep going! And try everything that feels like it might harbor help - even if it's wildly unconventional. Large amounts of fish oil, tumeric, and bitter cherry extract have helped some friends with both osteo and rhumatoid arthritis. And I highly recommend Ortho-Bionomy if you can find a practitioner near you. That stuff is magic. Honest!

I found that very interesting and inspirational, thank you for sharing it.

I think one's attitude towards the condition is the main factor in managing it successfully. A couple of years ago I was diagnosed with an arthritic condition which was searingly painful and affected my hands and wrists mainly. I could hardly pick up a guitar let alone play it for about 6 months and I became quite depressed. However I learned to manage the condition, and was able to slowly start playing again using very different techniques than I was accustomed to and I am now truly grateful that I can still play, albeit for short periods at a time.

 

[scottburrow]

Wow, Thanks for your story. You have inspired me.

 

[Fro]

Very fascinating. I just had to watch the video straight through. Thank you so much for sharing.

My wife and I are still in the early stages of dealing with her life-long muscle disease. She is 40, and we have been married for 15 years, and she has been in pain the whole time I’ve known her. The simplest way to describe it is that she has chronic muscles spasms. She says it feels like all of her muscles are basically turning into stone.

They have ruled out just about anything you can think of. After 2 muscles biopsies, they have determined that she is deficient in an enzyme. I guess less than one percent of the population has this. They had to do the 2nd muscle biopsy without any anesthesia, because that would have contaminated the muscle sample they removed. The doctors were impressed with how well she managed the pain of the procedure, but she said it was no problem, as it wasn’t as painful as the spasms she gets.

She experiences more pain when she sits. We have set up a treadmill for her as a desk at work. Slowly walking all day is better than sitting. When we go to restaurants, she never sits. We don’t go to concerts anymore. The last one we went to, we made sure to get seats at the very back so she could stand and lean against the wall the whole show. We no longer fly, and long car rides are out of the question.

She is on medication to reduce the spasms, but she is also on morphine pills that she takes every day for the pain. She also needs to take something to help her sleep. She does see a chiropractor and an acupuncturist, and that helps more than anything, but only temporarily. The doctors have no more interest in helping her, so all we are left with now is learning new and better ways for her to manage the pain. This video has given us some new insight. Thanks.

She has no intention of giving up, although there are some days where it’s really hard to get her out of bed. Sundays are sometimes spent recovering from the rest of the week. We have four dogs, and she is very active with them, sheep herding, tracking, etc. The ironic thing is that we came home one day to find our Samoyed completely paralyzed on the floor. It turns out that he has degenerative disc, among other things, and one of the discs ruptured and pinched the nerve. The vet gave us about a 5% chance that he would ever walk again. He had lost about 97% of his deep pain sensation. We did the surgery anyway. We poured all of our time and effort in the next few weeks working on recovery with him, acupuncture, massage therapy, water treadmill, etc. He made a full recovery. He still struggles with his back legs, but he doesn’t care. That turned out to be a great inspiration for my wife, that she could see that recovery through something she had loved first hand.

It’s very easy for me to dismiss what she is going through as no big deal. She has a lot of experience in hiding the pain, so it’s very easy to forget it’s there. When she does finally break down, it’s a very cold reminder to me of what she is going through, and that it’s not going to go away on it’s own. We would love to get my wife off of the medication. We’re sure the doctors don’t really know what they are dealing with, and I can’t imagine she could possibly take morphine daily for the next 40 years. This video makes me feel better for questioning what the doctors are doing, and to take matters into our own hands. Thanks again for sharing your experience. Not only the fact that you have shared this, but the way you were able to explain everything with such calm insight shows what is possible, and how powerful the mind can be. Thanks.

 

[BigD1977]

1) As best as I can determine, I had to basically forge new pathways to my hands. I say this for many reasons, but one of the most telling bits of evidence is that I 'lost' the "mediating reflex arc" to the brain. The primary reflex arc stems from a ganglion in your spine - it's what jerks your hand away from a hot stove way before your brain could possibly react. But the mediating reflex arc then comes in to say, "OK, everything's cool now, chill". That doesn't happen with me. My arms and hands will flop around for a second or two (I continue to get better at supressing this and no longer spill hot coffee on myself, thankfully!). So, when learning to reach and grasp, to use my fingers, I had to... hard to put into words. O hjad to 'find another way' back to my limbs, my fingers - and it is a different way - yes, I no longer take it for granted - there is an intentionality - and sometimes I forget to pay attention, and I'll suddenly drop something. But it's also a different... sensation. I don't just mean the sensation of touching something, which is WAY different because of numbness from the shoulders down - I mean that the 'sensation' of willing to reach for something and then reaching for it is... foreign, different. Of course after over 20 years, it's becoming more familiar, but it's still 'wrong' in some ways. To be concise: I think it's a combination of new pathways and extra concentration. As to learning, it's pretty fascinating, and frustrating. ANYTHING new on guitar (or anywhere else, really) is hard as hell. The old muscle memory for scales and chords came back - for those I played before I was hurt. But for new stuff - ANYTHING NEW, but my hands are now exceedingly slow learners. I had to get them to 'remember' everything pre-accident - so the first time I did something I hadn't done since before was/is always kind of crazy. The first time I had to wrap christmas presents again, my brain had to tell my left hand (the less neurologically compromised of the two - parts of my right hand still feel like prostheses), and then my left hand somehow taught my right hand. Can't really explain it better than that. But I ain't gonna win any awards for guitar ability, that's for sure - I am limited - but so was Vic Chestnut, and he wrote great songs - you work with what you've got - but I do get VERY upset sometimes when I simply cannot learn a new scale or chord progression.

2) EMDR indeed gives the brain the opportunity to process unprocessed truama. It gets all of the parts of the brain to 'see' each other and integrate a common experience that had previously been sort of Balkanized in the brain. In my case, resolving those experiences through recapitulating them actually worked to alter (radically alter) physical symptoms. The mind and the body are not divisiable. We think they are, but they're not - and even our language hints at this knowledge. For instance, people talk of a 'gut feeling' - well, the gut has 90% of the Serotonin receptors in the body - not the brain. And through the autonomic nervous system, the gut sends approximately 9 times more information TO the brain than it receives FROM it. Western science is just starting to wake up to the fact that our beings are much more connected, that our physical and intellectual lives are really more manifestations, flavors, of a common experience.

That's utterly fascinating to me. It sounds like you have had to form new pathways in the brain, or rather, utilise new areas that are connected to undamaged nerves in new ways, which is documented as a hugely difficult thing to do. Norman Doidge documented cases in his book "The Brain That Changes Itself" where he taught his father to walk again after a severe stroke by taking him back to infancy and the actions that we do to learn how our limbs work. One of these was crawling like a baby, and it sounds like your experiences of the class where you learn how to walk were bypassing quite a few steps of this infantile but necessary stage.

It's also an idea of mine that the reason you find learning new things difficult may be because these new neural pathways now have more than one job, and where old muscle memory can find old pathways, forming new pathways with shared neurological territory is doubly difficult because there are basically less pathways that are fully functional.

There are developments currently in psychology and neuroscience that are breaking down the barriers between the body and mind, and indeed a new term has emerged, "mindbrain" because the two cannot be logically separated. It's unfortunate that a new term such as 'mindbody' hasn't entered the fold as this would integrate specialisms in many fields into one cohesive treatment, rather than lots of separate, and in all probability, conflicting ones. To me, that's the difference between Western medicine and 'new age' (really 'old age') treatments, in that a lot of alternative treatments (much better term) treat the whole body and mind. I'm a firm believer that you cannot treat one successfully without treating the other, even if the form of treating the mind is to get it comfortable. For instance, a patient in a psychiatrists office will more often than not be asked to lie on a reclined chair. That's an example of making the body comfortable so the mind can start treatment. The reverse would be an anaesthetic. The problem is that the treatments over the long term just don't exist in Western medicine, and too much is invested by drug companies and also by doctors in fear of litigation that will allow the current system to do that. I had severe and crippling back problems for years and when I eventually went to see a chiropractor (a reputable one as I'm aware that they are not actual medical practitioners in Ireland at least) I got relief in the spinal manipulations he did. I went back whenever the pain recurred, but was suspicious of a practitioner fuelling repeated visits (I went over six months). So I found a sports massage therapist/chiropractor. He traced the problem to my outer gluteus muscle, completely unrelated to a chiropractors field of study, but not to the problem. One session with this guy involving dry needle therapy and after two weeks stretching and building muscle, I have not once had a recurrence, purely from looking at the WHOLE body rather than an isolated area. The mind and body and brain ARE the whole area.

I also think (and I'm opening myself up to a lot of criticism here) that the US private healthcare system doesn't allow a lot of development in areas that are not immediately profitable as each patient is viewed as an insurance client by the hospital. This is borne out by people doing everything by the book, which just does not work in many cases, but practitioners fear straying from the manual for fear of litigation. I'm not saying that this doesn't happen in every other country, just that the high insurance costs in the US make it more likely.

BTW, I am not a psychologist, psychiatrist or any form of medical practitioner. I'm merely interested in all the process because they help me understand and teach better.

 

[DNW]

Very interesting story, thanks for sharing. I've passed it on to a friend who suffers from severe migraines. Even if there's nothing she finds directly relevant, hopefully she'll be inspired to actually do something about it instead of just putting up with it until it goes away and then waiting for the next crippling episode (although using the word "crippling" seems overly dramatic in the light of your video about recovery from severe spinal injury).

 

[funny_polymath]

Wow! Love what you wrote. It resonates beautifully with me, and I too find this stuff fascinating. I think that both my nerves and my damaged brain had to 'double up', and that has many repercussions, as those noted, and other ones (like I am the most forgetful person in the world). Interestingly re: Stroke, I 'invented' a treatment for myself in 1992/93 that has now become a standard: I am left handed, and my right arm at the time was curved into a long claw, unusable, and I had trouble holding my hand up - it flopped at the wrist. So I had my mother (I was 32, but walked from my apt to her house every day as part of my regiment to get better and stronger), tie my left arm up for an hour a day in a kind of restraining sling, so I HAD to use my right arm. It was hell - so damn frustrating! Nothing I can think of is more frustrating than this kind of physical frustration when trying to get a disabled/paralyzed part of the body to move. But it worked. It worked so well that the entire neuro dept. of Bellevue hospital came up to shake my hand in wonderment when I came back for a 6 week evaluation. I TRIED to tell them about the sling, chi-gung (qipong), chinese medicine, and all of the other stuff I'd done - because they kept saying I was a 'miracle'. I kept saying I'm not: let me tell you what I did. I was met with disinterest, even aversion. Amazing. These 'men of science' PREFERRED to see me as a miracle than to alter their mechanistic, Newtonian view of biology and physiology.

I am also quite interested in what you said about your back problems and the therapy you found for them. I will look into that too, as I still have some residual pain. It's disc pain, radiating at times, but we know that disc pain can totally be caused by things like too-tight glutes causing a shift in the pelvic floor. Interestingly enough, things like IBS and cramps can also cause lower back problems because the ligaments that support the viscera attach to the lumbar spine. It's all connected! Love what you said about mindbody and our health care system. It sucks for chronic issues, and has become a vast drug pusher. I recently switched doctors, got off all of the meds they'd put me on for blood pressure and cholesterol and reflux. I took some supplements, changed to the Whole 30 (Paleo) diet, upped the exercise. My BP, high most of my life, is now averaging about 114/74, my triglycerides etc. are all in he green. Screw the Statins (which can cause DIabetes!), screw the blood pressure medicine, and screw the Prilosec (which can cause osteoporosis and dementia!). I've had really bad reflux all my life. It's GONE now that alcohol and starches and grains are gone.

That's utterly fascinating to me. It sounds like you have had to form new pathways in the brain, or rather, utilise new areas that are connected to undamaged nerves in new ways, which is documented as a hugely difficult thing to do. Norman Doidge documented cases in his book "The Brain That Changes Itself" where he taught his father to walk again after a severe stroke by taking him back to infancy and the actions that we do to learn how our limbs work. One of these was crawling like a baby, and it sounds like your experiences of the class where you learn how to walk were bypassing quite a few steps of this infantile but necessary stage.

It's also an idea of mine that the reason you find learning new things difficult may be because these new neural pathways now have more than one job, and where old muscle memory can find old pathways, forming new pathways with shared neurological territory is doubly difficult because there are basically less pathways that are fully functional.

There are developments currently in psychology and neuroscience that are breaking down the barriers between the body and mind, and indeed a new term has emerged, "mindbrain" because the two cannot be logically separated. It's unfortunate that a new term such as 'mindbody' hasn't entered the fold as this would integrate specialisms in many fields into one cohesive treatment, rather than lots of separate, and in all probability, conflicting ones. To me, that's the difference between Western medicine and 'new age' (really 'old age') treatments, in that a lot of alternative treatments (much better term) treat the whole body and mind. I'm a firm believer that you cannot treat one successfully without treating the other, even if the form of treating the mind is to get it comfortable. For instance, a patient in a psychiatrists office will more often than not be asked to lie on a reclined chair. That's an example of making the body comfortable so the mind can start treatment. The reverse would be an anaesthetic. The problem is that the treatments over the long term just don't exist in Western medicine, and too much is invested by drug companies and also by doctors in fear of litigation that will allow the current system to do that. I had severe and crippling back problems for years and when I eventually went to see a chiropractor (a reputable one as I'm aware that they are not actual medical practitioners in Ireland at least) I got relief in the spinal manipulations he did. I went back whenever the pain recurred, but was suspicious of a practitioner fuelling repeated visits (I went over six months). So I found a sports massage therapist/chiropractor. He traced the problem to my outer gluteus muscle, completely unrelated to a chiropractors field of study, but not to the problem. One session with this guy involving dry needle therapy and after two weeks stretching and building muscle, I have not once had a recurrence, purely from looking at the WHOLE body rather than an isolated area. The mind and body and brain ARE the whole area.

I also think (and I'm opening myself up to a lot of criticism here) that the US private healthcare system doesn't allow a lot of development in areas that are not immediately profitable as each patient is viewed as an insurance client by the hospital. This is borne out by people doing everything by the book, which just does not work in many cases, but practitioners fear straying from the manual for fear of litigation. I'm not saying that this doesn't happen in every other country, just that the high insurance costs in the US make it more likely.

BTW, I am not a psychologist, psychiatrist or any form of medical practitioner. I'm merely interested in all the process because they help me understand and teach better.

 

[funny_polymath]

Very interesting story, thanks for sharing. I've passed it on to a friend who suffers from severe migraines. Even if there's nothing she finds directly relevant, hopefully she'll be inspired to actually do something about it instead of just putting up with it until it goes away and then waiting for the next crippling episode (although using the word "crippling" seems overly dramatic in the light of your video about recovery from severe spinal injury).

Tell your friend to investigate an elimination diet, and 'histedelia' - big cause of migraines. I don't have them, but I did have chronic headaches, which resolved when I changed my diet.

 

[MrGuitarabuse]

Speachless!!! I will never whine ever again

 

[funny_polymath]

Sounds like a very complex and difficult problem, the kind that I think will eventually be solved through gene therapy. In the meantime. have you tried large (I mean large, it's quite safe) doses of magnesium? You might also try rubbing all of her muscles down with magnesium oil (you can find it on Amazon). It's the greatest anti-spasmodic (and anti-anxiety) treatment I know of. I know I sound like a broken record, but Ortho-Bionomy might help. And possibly a really good chi-gung (qipong) teacher - the muscle spasms are involuntary, I know, but qipong can actually give you some control over autonimic functions. Even though they are due to a missing enzyme, she might learn to at least partially override the spasm signal. I did - but my problem was far, far different - but maybe... Sorry I didn't reply sooner. I went back to re-read Cobbler's story and found you post. Apologies.

Very fascinating. I just had to watch the video straight through. Thank you so much for sharing.

My wife and I are still in the early stages of dealing with her life-long muscle disease. She is 40, and we have been married for 15 years, and she has been in pain the whole time I’ve known her. The simplest way to describe it is that she has chronic muscles spasms. She says it feels like all of her muscles are basically turning into stone.

They have ruled out just about anything you can think of. After 2 muscles biopsies, they have determined that she is deficient in an enzyme. I guess less than one percent of the population has this. They had to do the 2nd muscle biopsy without any anesthesia, because that would have contaminated the muscle sample they removed. The doctors were impressed with how well she managed the pain of the procedure, but she said it was no problem, as it wasn’t as painful as the spasms she gets.

She experiences more pain when she sits. We have set up a treadmill for her as a desk at work. Slowly walking all day is better than sitting. When we go to restaurants, she never sits. We don’t go to concerts anymore. The last one we went to, we made sure to get seats at the very back so she could stand and lean against the wall the whole show. We no longer fly, and long car rides are out of the question.

She is on medication to reduce the spasms, but she is also on morphine pills that she takes every day for the pain. She also needs to take something to help her sleep. She does see a chiropractor and an acupuncturist, and that helps more than anything, but only temporarily. The doctors have no more interest in helping her, so all we are left with now is learning new and better ways for her to manage the pain. This video has given us some new insight. Thanks.

She has no intention of giving up, although there are some days where it’s really hard to get her out of bed. Sundays are sometimes spent recovering from the rest of the week. We have four dogs, and she is very active with them, sheep herding, tracking, etc. The ironic thing is that we came home one day to find our Samoyed completely paralyzed on the floor. It turns out that he has degenerative disc, among other things, and one of the discs ruptured and pinched the nerve. The vet gave us about a 5% chance that he would ever walk again. He had lost about 97% of his deep pain sensation. We did the surgery anyway. We poured all of our time and effort in the next few weeks working on recovery with him, acupuncture, massage therapy, water treadmill, etc. He made a full recovery. He still struggles with his back legs, but he doesn’t care. That turned out to be a great inspiration for my wife, that she could see that recovery through something she had loved first hand.

It’s very easy for me to dismiss what she is going through as no big deal. She has a lot of experience in hiding the pain, so it’s very easy to forget it’s there. When she does finally break down, it’s a very cold reminder to me of what she is going through, and that it’s not going to go away on it’s own. We would love to get my wife off of the medication. We’re sure the doctors don’t really know what they are dealing with, and I can’t imagine she could possibly take morphine daily for the next 40 years. This video makes me feel better for questioning what the doctors are doing, and to take matters into our own hands. Thanks again for sharing your experience. Not only the fact that you have shared this, but the way you were able to explain everything with such calm insight shows what is possible, and how powerful the mind can be. Thanks.

 

[DNW]

Tell your friend to investigate an elimination diet, and 'histedelia' - big cause of migraines. I don't have them, but I did have chronic headaches, which resolved when I changed my diet.

Thanks. She's kinda looked into some things, but I think the broad spectrum of possible causes (and the rather trial and error means of going through them), and the sometimes lengthy time frames for (possible) results... she ends up just going nowhere with it. Maybe if it gets bad she goes to a doctor who gives her some pain pills, but then she won't take them because she's not really into that kind of thing (and it's not actually fixing the problem). So it's like... why do you bother going? If you go to a typical western doctor, you'll likely get a typical western doctor solution. If you don't want that and you want to look at alternative methods, go do it.

So yeah, I'm hoping she'll look at your video and decide to at least try doing something about it again. Coz the current solution of "make it home ASAP to hide in bed in silent darkness 'til it eventually goes away" isn't really a solution.

Thanks again.

 

[Fro]

No need to apologize. You have given so much information and so many suggestions, it's all greatly appreciated. The trick now is finding someone in the Milwaukee area who can help with some of these things. Thank you for all of your input.

Sounds like a very complex and difficult problem, the kind that I think will eventually be solved through gene therapy. In the meantime. have you tried large (I mean large, it's quite safe) doses of magnesium? You might also try rubbing all of her muscles down with magnesium oil (you can find it on Amazon). It's the greatest anti-spasmodic (and anti-anxiety) treatment I know of. I know I sound like a broken record, but Ortho-Bionomy might help. And possibly a really good chi-gung (qipong) teacher - the muscle spasms are involuntary, I know, but qipong can actually give you some control over autonimic functions. Even though they are due to a missing enzyme, she might learn to at least partially override the spasm signal. I did - but my problem was far, far different - but maybe... Sorry I didn't reply sooner. I went back to re-read Cobbler's story and found you post. Apologies.