Comments on: The Stigma of Neuropathic Pain http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/ Topics from multidimensional biopsychosocial perspectives. Fri, 04 Jul 2008 20:10:00 +0000 http://wordpress.org/?v=2.5.1 By: Belinda Shale http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-228121 Belinda Shale Mon, 23 Jun 2008 10:18:38 +0000 http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-228121 A New Blog from The Patients Voice – about Back Pain Dear Friends Welcome to the newest blog from The Patients Voice. In this blog we are very keen to explore your thoughts and ideas about the experience of suffering from back pain. We would therefore like to invite you to participate in the blog. Firstly by having a look at the blog and secondly by participating yourself. It is a great opportunity to share experiences and information about back pain. To visit the blog please go to http://www.thepatientsvoice.org/Back_Pain/Live_Blog_ver2.asp Blogs are a wonderful way for patients and their carers to connect with each other. But not just that they are a great way to disseminate information with people who suffer from back pain. You may also notice that our site has been re-designed so please feel free to have a look at other parts of the site. If you have any suggestions regarding the site please do feel free to email me about them. Remember The Patients Voice is a great opportunity for you to share with others. Best wishes Belinda Shale The Patients Voice www.thepatientsvoice.org A New Blog from The Patients Voice – about Back Pain

Dear Friends

Welcome to the newest blog from The Patients Voice. In this blog we are very keen to explore your thoughts and ideas about the experience of suffering from back pain.

We would therefore like to invite you to participate in the blog. Firstly by having a look at the blog and secondly by participating yourself. It is a great opportunity to share experiences and information about back pain.

To visit the blog please go to
http://www.thepatientsvoice.org/Back_Pain/Live_Blog_ver2.asp
Blogs are a wonderful way for patients and their carers to connect with each other. But not just that they are a great way to disseminate information with people who suffer from back pain.

You may also notice that our site has been re-designed so please feel free to have a look at other parts of the site. If you have any suggestions regarding the site please do feel free to email me about them.

Remember The Patients Voice is a great opportunity for you to share with others.

Best wishes

Belinda Shale
The Patients Voice
http://www.thepatientsvoice.org

]]> By: Shelley http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-93129 Shelley Wed, 27 Feb 2008 06:19:53 +0000 http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-93129 I use to be an RN until at 30 yrs old I was struck down with severe chronic pain. I have also had 28 major surgeries since I was 20 yrs old. I was put on SSI at 32. I was on 25 meds a day for 23 yrs for the pain. 95% of the doctors told me it was in my head! Right! Boy as soon as a doctor reads that on your history they automatically want to get you out of there office asap! It makes me so angry! I have been insulted, called a nut case and worse during my journey. I am now 53 yrs old and they have now found out that I have 14 bad discs starting from 2 past fusions in my neck and it goes down from there and then more in the L-3/4 - Sacral area. And through many EMG's I was finally Dx'd with bi-lateral Peripheral Neuropathy. This past summer of 07'I was finally put in an wheelchair and scooter. I am to young for this and I felt at the time "all those doctors that just didn't care enough or did not want to deal with me put me there!" Totally frustrated, I went on my own and got out of all the Medicare HMO plans and returned to original Medicare so more PPO's would take me and I went to a 22 different doctors before I found 4 that did care. You want to know the difference of the 4 out of 22? The 4 have been patients and had experienced severe pain....had they time to be human and really take an interest in one for a change! In November of 07'these fantastic doctors implanted Neurostimulators in each hip. It is the first time in 23 yrs I am able to live almost pain free! I am off all of the meds that were hurting my liver and kidneys. I do have 2 meds for breakout pain but I hardly use them and I am out of my wheelchair. I thank God for those 4 doctors for "taking the time to get to know me". I was Dx'd many times w/FMS over the years. I believe in FMS but I knew there was something else going on. Most doctors have said to me "it does not exist". But, I do believe that many are getting just labeled with it so doctors do not have to deal with them. Throw them some anti-depressants and out the door. There are still good doctors out there but they are hard to find and you have to take control of your healthcare and remember your interviewing the doctor. If you do not feel comfortable with the doctor or Dx don't just stop interviewing doctors for help and with all the medical websites, research your symptoms not to Dx yourself but it helped me know what specialists I needed to seek out. Your not paying to be insulted either, your already in pain enough without having to listen to uncaring doctor. Sorry for the length of this...maybe someone out there can relate. I use to be an RN until at 30 yrs old I was struck down with severe chronic pain. I have also had 28 major surgeries since I was 20 yrs old. I was put on SSI at 32. I was on 25 meds a day for 23 yrs for the pain. 95% of the doctors told me it was in my head! Right! Boy as soon as a doctor reads that on your history they automatically want to get you out of there office asap! It makes me so angry! I have been insulted, called a nut case and worse during my journey. I am now 53 yrs old and they have now found out that I have 14 bad discs starting from 2 past fusions in my neck and it goes down from there and then more in the L-3/4 - Sacral area. And through many EMG’s I was finally Dx’d with bi-lateral Peripheral Neuropathy. This past summer of 07′I was finally put in an wheelchair and scooter. I am to young for this and I felt at the time “all those doctors that just didn’t care enough or did not want to deal with me put me there!” Totally frustrated, I went on my own and got out of all the Medicare HMO plans and returned to original Medicare so more PPO’s would take me and I went to a 22 different doctors before I found 4 that did care. You want to know the difference of the 4 out of 22? The 4 have been patients and had experienced severe pain….had they time to be human and really take an interest in one for a change! In November of 07′these fantastic doctors implanted Neurostimulators in each hip. It is the first time in 23 yrs I am able to live almost pain free! I am off all of the meds that were hurting my liver and kidneys. I do have 2 meds for breakout pain but I hardly use them and I am out of my wheelchair. I thank God for those 4 doctors for “taking the time to get to know me”. I was Dx’d many times w/FMS over the years. I believe in FMS but I knew there was something else going on. Most doctors have said to me “it does not exist”. But, I do believe that many are getting just labeled with it so doctors do not have to deal with them. Throw them some anti-depressants and out the door. There are still good doctors out there but they are hard to find and you have to take control of your healthcare and remember your interviewing the doctor. If you do not feel comfortable with the doctor or Dx don’t just stop interviewing doctors for help and with all the medical websites, research your symptoms not to Dx yourself but it helped me know what specialists I needed to seek out. Your not paying to be insulted either, your already in pain enough without having to listen to uncaring doctor. Sorry for the length of this…maybe someone out there can relate.

]]> By: buga.daniel http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-66696 buga.daniel Mon, 15 Oct 2007 21:59:57 +0000 http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-66696 But someones gotta do that job.. there are many people suffering of that.. they need to be cured! Don't they?! Even though they have a slight chance of that.. And even though..they probably are addicted to those morphine derivatives.. They should be helped.. But someones gotta do that job.. there are many people suffering of that.. they need to be cured! Don’t they?! Even though they have a slight chance of that.. And even though..they probably are addicted to those morphine derivatives.. They should be helped..

]]> By: Kali O'Malley http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-61165 Kali O'Malley Wed, 15 Aug 2007 17:36:02 +0000 http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-61165 Thanks for the great work.. Doc JC. :) I've suffered chronic bodywide pain from degenerative disc disease and what they tell me is fibromyalgia, a tarlov's cyst at T9/10 and several foot surgeries. This has been path for for over 25 years. I have been prescribed EVERY possible narcotic pain releiver, anti depressant, had multiple nerve blocks etc... I refuse to take the narcotics for 99% of the time because it destroys my conscious contact with God. In my life, without that that I'm sunk and I haven't a chance to control my pain naturally therough rest, meditation, aquatic exersise and swimming, and long soaking baths using essential oils. I fear a life of addiction no matter if it's a pescribed addiction or not. At the current time a Tarlov's Cyst is something that is poorly treated, poorly researched and 99% of Doc's will tell you that they don't cause symtoms. I have severe parasthesia and it can come anywhere in my body. It was so intense it was misdiagnosed as post herpatic neuralgia. My Neurologist is a good and honest man and very skilled but he's honest enough to say " I have never operated on a tarlov cyst nor would I at this point" I've worked with essential oils for 20+ years. I know that they also impressively effect the limbic system as well, just based on my own experiences with them. I'd also like to tell you that medicinal marijuana has also heled me tremendously. However, I dislike the smoking factor and stopped. I am curretly on Marinol and it seems that the canniboid DOES at least help me keep my "God Connection" up and the chronic suffering syndrome down. It takes some brain training ( God Conenction ) to say " Okay, today you are in pain, that doesn't mean the whole day is a wash" I am in severe pain 24/ 7 and I am not able to be as physically active as I'd like. Thanks again Doc, I look forward to more of your posts. Kali Thanks for the great work.. Doc JC. :)

I’ve suffered chronic bodywide pain from degenerative disc disease and what they tell me is fibromyalgia, a tarlov’s cyst at T9/10 and several foot surgeries. This has been path for for over 25 years. I have been prescribed EVERY possible narcotic pain releiver, anti depressant, had multiple nerve blocks etc…

I refuse to take the narcotics for 99% of the time because it destroys my conscious contact with God. In my life, without that that I’m sunk and I haven’t a chance to control my pain naturally therough rest, meditation, aquatic exersise and swimming, and long soaking baths using essential oils. I fear a life of addiction no matter if it’s a pescribed addiction or not.

At the current time a Tarlov’s Cyst is something that is poorly treated, poorly researched and 99% of Doc’s will tell you that they don’t cause symtoms. I have severe parasthesia and it can come anywhere in my body. It was so intense it was misdiagnosed as post herpatic neuralgia. My Neurologist is a good and honest man and very skilled but he’s honest enough to say ” I have never operated on a tarlov cyst nor would I at this point”

I’ve worked with essential oils for 20+ years. I know that they also impressively effect the limbic system as well, just based on my own experiences with them. I’d also like to tell you that medicinal marijuana has also heled me tremendously. However, I dislike the smoking factor and stopped. I am curretly on Marinol and it seems that the canniboid DOES at least help me keep my “God Connection” up and the chronic suffering syndrome down. It takes some brain training ( God Conenction ) to say
” Okay, today you are in pain, that doesn’t mean the whole day is a wash” I am in severe pain 24/ 7 and I am not able to be as physically active as I’d like.

Thanks again Doc, I look forward to more of your posts.

Kali

]]> By: James RN http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-60898 James RN Mon, 06 Aug 2007 20:22:31 +0000 http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-60898 Pain is a wholly subjective experience, in my opinion, both as an RN of 30+ years, and as a middle-aged man that has had chronic pain for a decade. The problem is that there are simply too many myths about managing pain, what pain means for the individual, and health care providers - both MDs and RNs -respond poorly to an individual in pain, likely due to knowledge and skills deficits in the area of pain management. Pain is a wholly subjective experience, in my opinion, both as an RN of 30+ years, and as a middle-aged man that has had chronic pain for a decade. The problem is that there are simply too many myths about managing pain, what pain means for the individual, and health care providers - both MDs and RNs -respond poorly to an individual in pain, likely due to knowledge and skills deficits in the area of pain management.

]]> By: Giusebio Chocolino http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-52226 Giusebio Chocolino Fri, 27 Apr 2007 04:48:59 +0000 http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-52226 I disagree in one point, sir. Pain is not subjective. It may be imaginative, I would say, but when it is there, it is there. Some people tolerate it more, other less (a lot of reasons to this, including faith). This does not make the pain subjective. Sometimes doctors ask me the level of my pain. I don't know the answer, but there is an answer. I just don't know how to measure it. I disagree in one point, sir. Pain is not subjective. It may be imaginative, I would say, but when it is there, it is there. Some people tolerate it more, other less (a lot of reasons to this, including faith). This does not make the pain subjective. Sometimes doctors ask me the level of my pain. I don’t know the answer, but there is an answer. I just don’t know how to measure it.

]]> By: Pain May Mask Depression Around the World | GNIF Brain Blogger http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-52224 Pain May Mask Depression Around the World | GNIF Brain Blogger Thu, 26 Apr 2007 14:04:00 +0000 http://brainblogger.com/2007/03/14/the-stigma-of-neuropathic-pain/#comment-52224 [...] see patients with chronic neck and back pain. I previously posted about patients who present with neuropathic pain and how they can be some of the most difficult patients to treat. Often, the etiology of their pain [...] [...] see patients with chronic neck and back pain. I previously posted about patients who present with neuropathic pain and how they can be some of the most difficult patients to treat. Often, the etiology of their pain [...]

]]>