Yesterday I was going downtown to attend a trigeminal neuralgia support meeting. There would be a speaker and I wanted to give him a copy of my book. His book, and speech to us, asserts the pain of trigeminal neuralgia can be helped by nutritional changes,. These supplements may include "daily shots of B12." among other large amounts of vitamins and minerals.
He is a retired cardiovascular surgeon. TN is a neurosurgical/neurological condition,.
I caught up with him before he left and was able to give him my book.
He told me he had a relative who had TN; but he only works with relatives and friends. Based on his belief in this "treatment" it was hard to believe he really understood what tn was like. I hoped the book would help him know the true pain of it. (I do not know how bad the tn of his relative was but his vitamin, mineral remedy indicated to me it was not to the level many of experience.)
As I rode the train I opened the book to the first page. I have never forgotten the moment the first pain struck but then I thought back further to how I was feeling at that time.
I had just moved to NYC. I had a job I hated and was fired from a few days before Christmas (the social worker I worked for came in the office one day and said "I can see the contempt you have for me every time I walk in the office. You're fired." He was right. He was a primal scream therapist. I felt he was taking advantage of clients and the therapy was a farce.)
Maybe, I thought for the thousandth time, the pain started because I was so depressed at the time.
My pain is from a birth defect. Maybe the stress finally set it off.
So many of us think this way; it is something I did, the way my life was at the time, the way I lived my life.
I thought about it a little more. The first surgery worked, 99.9%. I got a job as soon as I was allowed. The job was okay, a clerk in the advertising department of HOUSE BEAUTIFUL magazine, but I made two friends, almost immediately. I was happy. I was not acting but I had a job, I had friends, I had a salary. I was enjoying my life.
And then, out of the blue the pain came back. There was nothing I could blame it on. It just 'was'.
How often have you had that thought, if I only had not (been, done) that the pain would not have started?
It is hard not to find a reason, it is easier when we think we have one, even if it means putting the blame on ourselves.
The truth is, not matter how we felt, no matter what we were going through, the pain may be our burden to bear, but the blame is not ours to shoulder.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Put these two statements - copied from the above paper - together and the question is answered as to why "Out of the Blue" the Pain came back
ReplyDeleteTO ANALYZE THE BEGINNING IS POINTLESS.
And then, out of the blue the pain came back. There was nothing I could blame it on. It just 'was'.
There are only two types of Pain:
1. Pain which self repairs and requires no treatment intervention.
2. Pain which never repairs and is always changing and treatment resistant.
Whilst from a conscious point of view Pain can seem to provide a degree of protectionism, it cannot and must not be relied on to protect us.
Yes of course Pain, particularly Chronic Pain is extremely debilitating in as many ways as one can think, touching all members of the community at some time in their lives.
However most Pain is never successfully treated.
Pain can be considered in a number of ways Pain! Pain! And more Pain!
Pain is a process of the mind following childhood emotional traumas, treatment resistant Pain is never in the body and the reason why it is so poorly understood and treated.
Peter Smith Talking Cures
Hi Peter, You and I have respectfully disagreed on this on Linked.
ReplyDeleteChronic pain does not affect all members of the community at some time unless you are talking about the effects of those who live with daily chronic pain that is debilitating and often disabling as well.
It is not an effect of emotional trauma holdover. My trigeminal neuralgia, for instance, is from a birth defect. I could have healthiest or the most abusive childhood, it would not have made a difference. The phantom pain I have is from surgical error and cutting of nerves, neuropathy is not an issue of emotional travail.
It is hurtful to those of us who deal with this pain day in, day out, moment in, moment out to have it dismissed (and I know you do not see your position this way) as psychological. That is what many of us have been told by doctors who did not understand chronic pain or know how to diagnose it or what to do about it.
I appreciate your taking the time to comment. Carol
I can't state how strongly I agree with Carol, and I would not be able to state it as clearly or nicely as she did, so I will leave it at that. omg. Patty
ReplyDeleteThank you.
DeleteThank you for this blog. I am so grateful that you have shared your story. Most people can't comprehend what it is really like to have to constantly adapt and function with chronic pain. Saying that chronic pain is based on stress is just a way of blaming the sufferer when society doesn't have an easy answer. Anyway here's wishing you a happy turkey day! Keep doing your thing.
DeleteNiki
Hi Niki, Thanks. I agree with you about the blaming.
DeleteI hope you had a good one.
Carol
I have to agree that sometimes the pain just is. It is that level of acceptance that can give us a way to take the steps we can. My chronic pain is cyclical with only some sever episodes but I know the cost of self blame.
ReplyDeleteI am developing a website and coaching business called Thriving with Pain: Beyond Suffering and Blame! http://thrivingwithpain.com I support people to move through the medical/ alternative treatment options and become their own best advocate and expert as well as getting the support they want and need internally and from family, friends, and peers.
I am grateful for the love and grace in my life. Happy Holidays!
Amber Rose
Thanks Amber. Good luck.
ReplyDeleteDear Carol
ReplyDeleteThank you for you most polite response and please accept my apologies for the delay in replying.
Surely we can only improve our understanding of Pain and illness by constantly disgusing and if necessary arguing - respectively and even disagreeing.
May I make my position clear Pain and illness hurt; not only the sufferer but all those around who wish they could help but are unable to do so, never more so when a loved one succumbs to their Pain or illness.
The only thing about Pain in real term that is hurtful is the fact despite the best efforts of our dedicated clinicians it does not either repair at all or is only suppressed by more and more powerful medications.
I am quite confident you will not find in any of my posting or on my website my saying any illness is “Psychological”let alone Pain, especially following injury.
This term is ONLY used by those who do not know the cause to dismiss this well publicized fact; in favour of blaming the sufferer - something that does not in any way shape or form garner my support as all it does is make the Pain illness worse, or move to another part of the body.
The reason is quite clear to me, the term Psychological is a symptom in its self and not in any manner a cause
All of the symptoms you list of course can be seen by some medical examination, surely with medical understanding we all have, we are able to see they are in turn all symptoms created by something else. Moreover the Trigeminal neuralgia you speak of if not caused by an accident has to have a cause in itself as it is a symptom.
You comment about “Talking cannot fix CIP is correct if we accept talking in general conversation which is not to be confused with Talking Cures a unique process of re understanding the causes of illness which in turn allows the persons own immune systems and body replication process to take effect. Is not the cure more important than the process by which this is brought about.
When one takes into consideration the amount of Health Forums and they all make the same or similar comments “I am still ill” despite the best the Worlds Doctors can offer.
Then it becomes rather easy to see something very important is missing.
And my Thirty years findings tell me it is our inability or lack of desire to accept our Mind - which without we could do nothing, but perhaps be a single-cell being - its negative thought processess following childhood emotional trauma - even if a person says they had a perfect childhood - are with the many body chemicals responsible for all illness and this includes Diabetes with the Pancreas being only an innocent bystander to handle the now toxic and caustic chemicals of the body which are perfectly balanced at all times?
Even if a child is born with illness this same process applies?
Best wishes
Peter Smith Talking Cures
Dear Kim
ReplyDeleteI fully accept the explanation of your injuries and have no doubt under the extreme circumstances both you and all of the medical teams around you have achieved what some my well call miracles.
Yet you are still in Extreme Pain.
If we accept you had a wonderful childhood as 100% correct then is allows us to look at the incident itself, there is no doubt in my mind just by the small amount of information you have provided there is a process of your mind, if only, the incident itself which is not allowing your immune system to make the very best of your and the medical teams achievements.
If you care for more information I would be happy to discuss further and even perhaps help you in your recovery, free of fees but in exchange for publication in as many places you are able your wrtieup of experiences of Talking Cures on a shared/free publication agreement. My Skype address is Talking.Cures and on my website you will find a paper about “Whiplash Injuries” you may or not, find interesting.
Kim may I finish by saying - certainly not at your level - I am now nearly Seventy and have spent a lifetime in some form of Pain or other and still do and as much as I search the World am unable to find Scientifically Proven or even story telling which leads me to believe there are any good understanding as to the cause of Pain and effective treatments, MANAGEMENT of pain or illness is not in my remit so I have to rely of my treating myself; whilst it is showing efficacy, it is for me an extremely slow process. I would add I take NO medications.
Best wishes
Peter Smith Talking Cures
Peter, Thank you for your replies. Obviously when you write "Pain is a process of the mind following childhood emotional traumas, treatment resistant Pain is never in the body" and that "talking cures" is the answer then you and I can never agree. You write you did not say it is psychological but that defines psychological: not in body, result of emotional trauma."
DeleteMost of us with chronic pain disorders know it is in the body, there may be a brain misconnect, the brain rewiring itself to remember pain/not disconnect when the pain is gone, causing a phantom pain.
The medical community also knows it is not simp;y a mond issue, mind over matter, what I get from your perception and belief in how it can be helped/cured.
I would prefer that you not solicit here for clients.
This blog is to help and support.
We have been hurt enough already when we have to fight to get treatment, medication, believed, even as, in my case and the case of many others, the physical basis of the pain has been confirmed.
I do not know what kind of pain you have had "have spent a lifetime in some form of Pain or other" but it does not sound as though, and forgive if I misunderstand, it is/was chronic intractable pain. I have arthritis, as one example, in various parts of my body. That is a form of pain, and it is chronic, but it has nothing to do with 30 years of pain from a neurological disorder.
People say "they are still ill" because they are. Lupus, MS, Rheumatoid arthritis, CRPS are not 'curable' but chronic illnesses. If one is lucky trigeminal neuralgia will be resolved from neurosurgical intervention although for a large proportion the vessels come back and the pain returns. (In my case the dozens of tiny blood vessels grew back, proven by a vascularized birthmark in the area of pain. That a talking cure can do nothing about. It takes a knife to remove the vessels.
I see as I respond to you the worst part of yur thesis. I am feeling angry and defensive.
It is when one says "Oh no it is not in your body, it is in your mind, and my specific way of talking will fix it" that those of us with CIP turn our backs on you. It is that stereotype that causes families, friends, colleagues when you can work, to turn their backs as well.
And yes diabetes of the body not the mind, not toxic chemicals that need to be balanced. In fact a newborn should be born with the balance so that negates your question.
(There are children born with trigeminal neuralgia. It is not chemicals, it is their brain anatomy. No amount of talking cure can fix that.
Carol
Carol,
ReplyDeleteSo true it is easy when pain or tragedy suddenly strikes that you can begin to blame yourself for the things you may have done to bring it about. In my case I took the grand route and accused God of punishing me for some sin that I perhaps had committed while I was deployed in Iraq. I just couldn't come to terms with me being a child of God being afflicted with such a horrendous pain that I could not even participate in my daily morning prayer in a quiet spot outside because when the sun hit me I felt like a vampire being turned into dust and fled for solace. At the time I did not know what was wrong with me and oh boy was it a hell on earth experience for me that was only the beginning of much greater pain to come.
Of course that was back in 2006 when I was stationed in Mosul Iraq where it all began for me. My life changed for the second really fourth time, after salvation, and the Holy Ghost baptism, marriage to my beautiful wife would make the third. I'm sure you are not keeping count but since this is blog space it is okay to get personal, right? Anyhow as I have shared before I have been turning things around at a rapid pace for the last 4 years with no drugs.
Now while the blame is not on us I am persuaded in order to have real change and eventual elimination with much alleviation in-between we must accept the fact that we are what we are. Notice I said accept the label but not the situation. Yes I wholeheartedly and profoundly embrace the notion that I Julian Abraham Cox have idiopathic autonomic neuropathy, small fiber neuropathy and hypo and anhydrosis. What I do not embrace is the notion that I will be this way for the rest of my life or that it lies without of my power to change the state that I am in. Oh contraire I believe it is high time for us to realize that the key to be free or obtain control of our state is the realization that we are the only ones that can truly make it happen. I'm not excluding the seeking of help from others but even then we must still exert the brunt of the effort for any treatment or advice to be truly effective lest we just pacify ourselves with a lifelong band aid that never gets to the root of the matter.
See the rest below..............
If I have offended at all please forgive me. Nor do I credit myself as the know it all of pain but I have learned a lot of things the hard way and have realized that between our ears is the key to unlocking those doors that exasperate us in dealing with our painful state. We just need the right tools, encouragement and care to make it useful at times. This is what I seek to provide for any that would chose to work with me. I do not say this to solicit but my way of fighting back is to use my knowledge to make a profit for myself to help my family considering that my VA disability compensation is my sole source of income due to my inability to work for anyone else unless they were willing to let me stop intermittently when I had a painful episode and do next to nothing so that this would not happen. Not a great selling point on the resume. So I just got bold and said why not just do the scariest thing of all and take my knowledge and start a business to help others experience the great relief or better that I have been experiencing these last few years without the narcotics by the grace of God.
ReplyDeleteI'm new to the business world but very experienced when it comes to chronic pain and it doesn't matter the pain to some degree I have dug up the fundamental elements that are behind pain in general and it doesn't take a degree for anyone to get it. The fee that anyone pays me is for the support, encouragement and commitment that I will be providing them along with the tools to help them take what they already know but perhaps have failed to realize all this time and make it work for them.
In a nut shell I am persuaded that those like us who suffer already have the answers they seek but due to the way they have been taught to address pain they fail to see them. I am willing to speak with anyone for at least an hour and just listen to them if they chose to see what I may be able to do for them. Eventually I will be putting a book together breaking it all down, no holds bars to help the most people. I'm just a bit busy with many other projects for now but thank you for listening to me and keep up the great blogging.
Julian, no pffense at all.
ReplyDeleteEveryone has to find their own path with how they deal with what life has handed them. Your will to survive all you have, starting with your military service, is a testament to your strength.
Thank you for sharing your story with me (us)
Carol