Comments for PainOnline.com http://www.painonline.com A Source For Central Pain Fri, 18 May 2012 14:21:03 +0000 http://wordpress.org/?v=2.5.1 Comment on Incomplete Lesions Are Often Associated With More Severe Pain by ricochetred http://www.painonline.com/2009/04/incomplete-lesions-often-associated-with-more-severe-pain/#comment-99 ricochetred Thu, 05 Nov 2009 04:04:16 +0000 http://www.painonline.com/?p=434#comment-99 This is a response to my last response. I tried to share this website with my two close friends, boyfriend and Mom in hopes they would understand better. One friend glanced at it (very briefly) and declared that she understood because her husband had died of spinal cord cancer (thoracic). Lucky he did not have to live long with the pain. that may sound callous, but but not meant to be. She did confirm that "people just DON"T want to hear about it!" It's obvious she still does not understand or want to. The other friend and boyfriend did not think it was worth their time to look at the site. My Mom thought it was helpful. I feel even more discouraged and isolated. Seems like most people are saying sit down and shut up. But I do still appreciate having this information for myself so once again, thank you. This is a response to my last response.

I tried to share this website with my two close friends, boyfriend and Mom in hopes they would understand better.

One friend glanced at it (very briefly) and declared that she understood because her husband had died of spinal cord cancer (thoracic). Lucky he did not have to live long with the pain. that may sound callous, but but not meant to be. She did confirm that “people just DON”T want to hear about it!” It’s obvious she still does not understand or want to.

The other friend and boyfriend did not think it was worth their time to look at the site.

My Mom thought it was helpful.

I feel even more discouraged and isolated. Seems like most people are saying sit down and shut up. But I do still appreciate having this information for myself so once again, thank you.

]]> Comment on The Muscle Problem in Central Pain by ricochetred http://www.painonline.com/2006/04/the-muscle-problem-in-central-pain/#comment-98 ricochetred Sat, 24 Oct 2009 07:46:08 +0000 http://www.painonline.com/?p=221#comment-98 I am a Physical Therapist suffering with CP for 1 yr now after a MTB accident resulting in C4 incomplete SCI. The best PT for me has been MFR (John Barnes Myofascial Release). I have also had water therapies namely Watsu and Aquatic Integration (by Cameron West). In the water, my burning/tingling pain is gone. The problem is that these treatments are needed on a frequent basis and it is not fully and sometimes not at all covered by third party payers. For someone on disability the cost can be prohibitive. It is true that I suffer after hard activity. But I also suffer doing nothing. At least there is some emotional/mental benefit from doing something...and doing nothing and feeling pain is very depressing. I am a Physical Therapist suffering with CP for 1 yr now after a MTB accident resulting in C4 incomplete SCI.

The best PT for me has been MFR (John Barnes Myofascial Release). I have also had water therapies namely Watsu and Aquatic Integration (by Cameron West). In the water, my burning/tingling pain is gone.

The problem is that these treatments are needed on a frequent basis and it is not fully and sometimes not at all covered by third party payers. For someone on disability the cost can be prohibitive.

It is true that I suffer after hard activity. But I also suffer doing nothing. At least there is some emotional/mental benefit from doing something…and doing nothing and feeling pain is very depressing.

]]> Comment on Incomplete Lesions Are Often Associated With More Severe Pain by ricochetred http://www.painonline.com/2009/04/incomplete-lesions-often-associated-with-more-severe-pain/#comment-97 ricochetred Sat, 24 Oct 2009 07:03:16 +0000 http://www.painonline.com/?p=434#comment-97 This is the first information I have read that actually talks about what I have been dealing with for the past year. I wish I had found this sooner. This pain is destroying me, my relationship with my boyfriend and my friendships because I did not know how to get anyone to understand what this pain is like and I felt so isolated and misunderstood. It does not make my pain go away but I am beginning to understand and maybe sharing this with my family and friends will help. Thank You This is the first information I have read that actually talks about what I have been dealing with for the past year. I wish I had found this sooner. This pain is destroying me, my relationship with my boyfriend and my friendships because I did not know how to get anyone to understand what this pain is like and I felt so isolated and misunderstood. It does not make my pain go away but I am beginning to understand and maybe sharing this with my family and friends will help.

Thank You

]]> Comment on Central Pain press release from the Univ. of Maryland by okysocodonik http://www.painonline.com/2009/05/central-pain-press-release-from-the-univ-of-maryland/#comment-96 okysocodonik Sun, 23 Aug 2009 03:02:04 +0000 http://www.painonline.com/?p=437#comment-96 <strong>okysocodonik...</strong> <a href="http://namelindablog.info/dora-the-explorers/" rel="nofollow">Dora The Explorers</a> ... okysocodonik…

Dora The Explorers …

]]> Comment on Painless People by whimsica http://www.painonline.com/2008/03/painless-people/#comment-94 whimsica Sat, 18 Jul 2009 17:12:37 +0000 http://www.painonline.com/?p=424#comment-94 Aren't there a bunch of tyrosine kinase inhibitors found in soy like genistein. Aren’t there a bunch of tyrosine kinase inhibitors found in soy like genistein.

]]> Comment on Reality Central Pain by naturelady http://www.painonline.com/2007/10/reality-central-pain/#comment-91 naturelady Wed, 20 Feb 2008 18:33:20 +0000 http://www.painonline.com/?p=413#comment-91 Alan, I feel overwhelmed by your suffering. I was searching for information regarding my own pain when I came across your updates. I have daily pain but it's nothing compared to what you go through! My heart aches for you. I can only imagine the frustration you feel with the medical profession based on what I've been through and just life in general. Again, my situation is nothing, nothing compared to your's. I have not been injured physically but, as I said, I do have pain daily. Some days I spend in bed, other days are better. Anyway, this may seem too simple and you may be doing this already, but I found some relief after I started taking liquid vitamins, quit using artificial sweeteners, reduced sugar consumption, reduced processed foods and increased the amount of water I drink. It is eye-opening to read labels on the foods we eat. I used to have tomato soup when I couldn't tolerate anything else. The 2nd ingredient is high fructose corn syrup. Sugar seems to be in almost everything! While Boost is better than nothing, the first few ingredients are: Water, corn syrup solids, sugar, milk protein concentrate....some people are sensitive to milk proteins which can cause stomach pain and that bloated feeling. (I'm one of them.) The reductions and eliminations regarding sugar and food I did because I was willing to try anything in my power to reduce pain and other symptoms. The prescribed drugs seemed to bring more problems/symptoms than they helped. At one time I was on 10 different drugs. I am down to one daily with 2 - 3 I take only when things get too bad. Again, I know it seems like shooting a bb gun at Godzilla but, doing these things may offer a small amount of symptom relief. Not using artificial sweetners caused a great reduction in the "burning" pain throughout my shoulders and episodes of my skin burning/hurting to touch. You may want to look up Chronic Myofascial Pain Complex. You probably have CMP on top of everything else. And read about Candida as well. Reading about these and making small changes at a time is something that helped me. I apologize to you and everyone on this site if I have said anything offensive or just plain dumb in my ignorance of Central Pain. Also for the length of this post. I just couldn't pass by your updates without letting you know that I feel so much for you and tell you what has helped me a bit. I will keep you in my thoughts. I hope you have some relief, somehow, very soon...Melanie Alan, I feel overwhelmed by your suffering. I was searching for information regarding my own pain when I came across your updates. I have daily pain but it’s nothing compared to what you go through! My heart aches for you.
I can only imagine the frustration you feel with the medical profession based on what I’ve been through and just life in general. Again, my situation is nothing, nothing compared to your’s. I have not been injured physically but, as I said, I do have pain daily. Some days I spend in bed, other days are better.
Anyway, this may seem too simple and you may be doing this already, but I found some relief after I started taking liquid vitamins, quit using artificial sweeteners, reduced sugar consumption, reduced processed foods and increased the amount of water I drink. It is eye-opening to read labels on the foods we eat. I used to have tomato soup when I couldn’t tolerate anything else. The 2nd ingredient is high fructose corn syrup. Sugar seems to be in almost everything! While Boost is better than nothing, the first few ingredients are: Water, corn syrup solids, sugar, milk protein concentrate….some people are sensitive to milk proteins which can cause stomach pain and that bloated feeling. (I’m one of them.) The reductions and eliminations regarding sugar and food I did because I was willing to try anything in my power to reduce pain and other symptoms. The prescribed drugs seemed to bring more problems/symptoms than they helped. At one time I was on 10 different drugs. I am down to one daily with 2 - 3 I take only when things get too bad.
Again, I know it seems like shooting a bb gun at Godzilla but, doing these things may offer a small amount of symptom relief. Not using artificial sweetners caused a great reduction in the “burning” pain throughout my shoulders and episodes of my skin burning/hurting to touch.
You may want to look up Chronic Myofascial Pain Complex. You probably have CMP on top of everything else. And read about Candida as well. Reading about these and making small changes at a time is something that helped me.
I apologize to you and everyone on this site if I have said anything offensive or just plain dumb in my ignorance of Central Pain. Also for the length of this post. I just couldn’t pass by your updates without letting you know that I feel so much for you and tell you what has helped me a bit. I will keep you in my thoughts. I hope you have some relief, somehow, very soon…Melanie

]]> Comment on Heuristics in Pain by Virginia http://www.painonline.com/2008/01/heuristics-in-pain/#comment-93 Virginia Fri, 08 Feb 2008 06:56:54 +0000 http://www.painonline.com/?p=421#comment-93 Couldn't remember my sign in info, but your article took my breath away with the accuracy of my own situation, enough so that I signed up again just so that I could post. The mountains, the sky, the ocean, how do you know me so well? To know my pain (as I sit here with the almost constant burning calves) AND my personal therapy? Recovering from a spinal cord surgery which so far has increased my pain, I cannot access the deer trails in the nearby wood. Now, with the reading of your thoughts, I am reminded of why I yearn so much for what is unreachable for me right now. For that unseeable yet tangible thing that for a fleeting moment, yanks away the pain and the 24/7 thoughts of pain and replaces it with a full spirit and an ease of mind. I call it "feeding at nature's trough." once more, thank you. To be understood is a mighty thing. Couldn’t remember my sign in info, but your article took my breath away with the accuracy of my own situation, enough so that I signed up again just so that I could post. The mountains, the sky, the ocean, how do you know me so well? To know my pain (as I sit here with the almost constant burning calves) AND my personal therapy?

Recovering from a spinal cord surgery which so far has increased my pain, I cannot access the deer trails in the nearby wood. Now, with the reading of your thoughts, I am reminded of why I yearn so much for what is unreachable for me right now. For that unseeable yet tangible thing that for a fleeting moment, yanks away the pain and the 24/7 thoughts of pain and replaces it with a full spirit and an ease of mind. I call it “feeding at nature’s trough.”

once more, thank you. To be understood is a mighty thing.

]]> Comment on Curing nerve injury pain in mice by hawaiianbob http://www.painonline.com/2007/10/curing-nerve-injury-pain-in-mice/#comment-92 hawaiianbob Mon, 10 Dec 2007 22:54:25 +0000 http://www.painonline.com/?p=415#comment-92 ALOHA! I HAVE BEEN A CRONIC PATIENT FOR OVER35 YEARS. I AM ON MY 2ND PUMP. I HAVE BUPIVACAINE, CLANCIDINE AND HYDROMORPHINE IN MY PUMP. PLEASE EXCUSE MY CAPS. I CANNOT SLEEP! LATELY OVER THE PAST 2 MONTHS I HAVE HAD VERY VERY BAD RINGING IN MY EARS. IT IS DRIVING ME CRAZY, CRAZY. CAN ANYONE HELP ME? THANK YOU VERY MUCH,INDEED! ALOHA! I HAVE BEEN A CRONIC PATIENT FOR OVER35 YEARS. I AM ON MY 2ND PUMP. I HAVE BUPIVACAINE, CLANCIDINE AND HYDROMORPHINE IN MY PUMP. PLEASE EXCUSE MY CAPS. I CANNOT SLEEP! LATELY OVER THE PAST 2 MONTHS I HAVE HAD VERY VERY BAD RINGING IN MY EARS. IT IS DRIVING ME CRAZY, CRAZY. CAN ANYONE HELP ME? THANK YOU VERY MUCH,INDEED!

]]> Comment on BDNF is Doubly Bad by Glen http://www.painonline.com/2007/09/bdnf-is-doubly-bad/#comment-88 Glen Tue, 23 Oct 2007 18:14:08 +0000 http://www.painonline.com/?p=408#comment-88 It is possible that the BDNF will cause a shift in EGaba making GABAergic neurons excitable. Calling Dr. De Koninck! <a href="http://www.jcb.org/cgi/content/full/159/5/747" rel="nofollow">http://www.jcb.org/cgi/content/full/159/5/747</a> It is possible that the BDNF will cause a shift in EGaba making GABAergic neurons excitable. Calling Dr. De Koninck!

http://www.jcb.org/cgi/content/full/159/5/747

]]> Comment on One of these pains is not like the others. by Virginia http://www.painonline.com/2007/09/one-of-these-pains-is-not-like-the-others/#comment-90 Virginia Thu, 27 Sep 2007 05:45:57 +0000 http://www.painonline.com/?p=412#comment-90 Kevin, When I was young, I believed that lightning zapped down from the clouds to the grounding force of the earth. Then I learned, in actuality, lightning propagates from the ground up to the clouds. I have felt that the words that most help me to get my point across as to how CP affects us (as if anyone will listen) is to say, "An event of CP has immediate access to the brain." Now you tell me CP begins in the brain! I accept your learned words as truth, but once again, the ol' brain has let me down. CP takes on the lightning personna and our brains, the source. Why am I not surprised! Barbarians? Oh yes. My own experience with a neurologist proves the point. As I described my symptoms and the fact that Neurontin, which he prescribed, was not helping, he got up and walked out the door, saying, "This could ALL be emotional." He knew, as did all of my other doctors, that my C1 vertebra had "exploded" into four pieces just 9 months earlier. Did he think to MRI the thing to see what shape it was in when I complained of increasing neurological symptoms? No, the quick assumption was that my pain was "emotional." Suffice it to say, I had to wait 3 more years and travel 3000 miles to see a doctor who cared enough to MRI my Cspine and find my C1 still hugely broken and widely gapped apart. So, how have we progressed since the barbarians roamed the earth, or do they still, only these days, they charge $500 an hour? great article, thanks Kevin,

When I was young, I believed that lightning zapped down from the clouds to the grounding force of the earth. Then I learned, in actuality, lightning propagates from the ground up to the clouds.

I have felt that the words that most help me to get my point across as to how CP affects us (as if anyone will listen) is to say, “An event of CP has immediate access to the brain.”

Now you tell me CP begins in the brain! I accept your learned words as truth, but once again, the ol’ brain has let me down. CP takes on the lightning personna and our brains, the source. Why am I not surprised!

Barbarians? Oh yes. My own experience with a neurologist proves the point. As I described my symptoms and the fact that Neurontin, which he prescribed, was not helping, he got up and walked out the door, saying, “This could ALL be emotional.”

He knew, as did all of my other doctors, that my C1 vertebra had “exploded” into four pieces just 9 months earlier. Did he think to MRI the thing to see what shape it was in when I complained of increasing neurological symptoms? No, the quick assumption was that my pain was “emotional.”

Suffice it to say, I had to wait 3 more years and travel 3000 miles to see a doctor who cared enough to MRI my Cspine and find my C1 still hugely broken and widely gapped apart.

So, how have we progressed since the barbarians roamed the earth, or do they still, only these days, they charge $500 an hour?

great article, thanks

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