Why test for neuropathy if there is no cure?
I was diagnosed a little over 2 years ago by my PCP I do have RA and when I would tell my ruhematologist about the pain in my feet he would just blow it off. So went to my PCP and he listened, looked at my blood work from ruhematologist and said it's neuropathy we thought maybe trigged by the biologic I was on at the time. He started me on Gabapentin and at my next ra appt we stopped that biologic and started a different one. Silly me I assumed this would clear up and go away after that. Fast forward to now things have progressed enough that I use a wheelchair when not at home and am on permenant disability now. I read these posts and a lot of you know a whole bunch about your PN but the one common theme I see is there is no fix. Somethings help some with the pain others are just a distraction but bottom line nothing gets better. So why go thru all tests, trouble and money to identify all the details when they don't help?
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I have both books by Doige. I would like to know what would be the appropriate mental exercises for reprograming the brain for Small Fiber Neuropathy which was caused by the Shingrix vaccine? Would it be to focus on eliminating the pain (shrinking pain brain maps areas) or stopping the production of the offending antibodies or both. What would the exercises specifically consist of???
Hi Don. I first heard about Doidge's books from Barry @user_che214927 who extols the use of neuroplasticity. From what he has said he uses it to change his own behavior, such as stopping itching and reducing the number of times he needs to get up at night to go to the bathroom. I guess through willpower. But, although he does say his neuropathy is not getting worse, I don't remember him mentioning reducing his pain level with neuroplasticity. I too would love to know whether neuroplasticity related exercises exist that can help to cut down PN pain. I have not been able to come up with anything intuitively. If brain maps have gotten larger from the constant sensation of pain, how does one reverse that, what type of exercises would one need to do? I don't know.
Hi Hank, it appears for the reduction of pain we are supposed to have an image of the brain mapped out with the pain sensory areas. Then determine which area is the one responsible for our particular pain and "exercise" by seeing the image in our minds and visualizing the specific pain map area shrinking. Supposedly, doing this repetitively over time it will cause our pain to decrease and ideally stop. It is unclear how much time per day and for how long this is to be done.
Hi Dan, the brain certanly controls pain ! Carefully read chapter 7 of Doidge's first book ' The brain that changes itself'. It works for me: back itch, or any totally gone, pain in feet and lower legs improving. Repetitively it is not good enough, it must dominate your thinking and become the person you are. You dominate the problem, not the other way. I simply will never ever scratch an itching skin on any part of my body.With pain., I do not take any medication, but, as per chapter 7, I change my thought. You can only have one thought in your mind at the same time. Only humans have the choice, and that is what I do. Reread the chapter and my best wishes. What you want out of life is our choice, and dominant thinking of what we want out of life, and must be a non negotiatable.
Interesting discussion here … good questions (ones I have asked myself) and good answers. Yes, we must tell our doctors, politicians, insurance companies and the big pharma companies that we need pain killers that don't have bad side affects (sleepiness, addiction, dizziness, etc). My neurologist told me that my nervous system is dying and there is no cure for dying. Peggy
Hi Barry, Thank you so much for your response. I just reread chapter 7. There is discussion about chronic pain which is not my issue. My neuropathy pain is an intermittent or episodic burning sensation or pain that affects different areas of the body at various times caused by auto-antibodies attacking my small nerve fibers. The treatment for chronic pain uses imagination and illusions to restructure the brain maps. What is your specific technique? Do you close down the gates of pain through some kind of meditation? You say that you change your thoughts and that it must dominate your thinking. During a pain event, what is it that you are thinking about? What is your dominant thought?? Please provide more detail. Thank you. Don
Hi Peggy. I know, Big Pharma just loves pushing all of this stuff at you that all have a ton of bad side effects. Hey, you got a problem? We gotta fix for you. It will make you feel terrible in a lot of other ways but it might get rid of the one problem you are complaining about. Great solution, isn't it? And they can charge a lot of money because whatever it is comes from someplace like the Brazilian Amazon or someplace and they have exclusive rights to it. Isn't that clever? You just gotta love 'em. 😩
We all need to get off of our collective duffs and write write write to pharmaceutical companies, research companies, politicians, Medicare, and insurance companies – instead of complaining to each other — starting with me getting off of my duff and finding their addresses. Peggy
Peggy you are exactly right. The Foundation for Peripheral Neuropathy is asking for donations to support the cause and scientific research. Perhaps a first step would be to talk to them https://www.foundationforpn.org This is a disease that no one knows about unless they have it or some one they know has it. It's an "orphan" disease. I think we have to make this disease visible in any way we can. Think ads, television, celebrity spokespersons, etc. But we should join with organizations that are already trying to support research but maybe are not doing enough to call attention to this disease and how prevalent it is.
Peggy, I have sent an email to the Foundation for PN asking about making the general public more aware of PN. Their website states that their mission is
Serving as the premier resource of information for patients, their families and healthcare providers
Accelerating a cure for peripheral neuropathies
Funding collaborative efforts of leading scientists
Raising awareness of peripheral neuropathy
You can see that they want to "raise awareness" but I'm not sure how they are doing this to the level needed to acquire the kind of support needed.
I am sure they are very aware of this blog and they have been cited in posts I have seen here. I just think they are the logical place to start and others on this blog may wish to contact them as well. I am not a representative for this group, just had this idea and hope something comes of it. Thanks for lighting a fire under me. I have been thinking about this for awhile without any idea what can be done and still don't know. Maybe all that can be done is already being done, but clearly there are many of who are frustrated and suffering for lack of a real diagnosis, effective treatments, or ultimately a cure. And we are just a small group. I'm sure that the statistics on PN would show thousands of people debilitated from this and many more undiagnosed. I will let you know if I receive a response from the FPN. In the meantime we all need to learn more about the Foundation. Thanks again Peggy.