Vitamin B12 and Neuropathy

Posted by lorirenee1 @lorirenee1, Dec 9, 2019

I went to my Neurologist and saw the nurse, because my neurologist had to cancel all her appointments. The nurse went thru all my blood work, and said my B12 is way too low for someone with Neuropathy. She repeated that B12 test, and again it is low. Because it is in a low, but normal range, 2 neurologists, 2 pain specialists, and 1 primary care physician of mine, did not catch that it was low. Only this nurse did, and now I need a week of daily Vitamin B12 shots, and then weekly, for a month. If you have neuropathy, B12 level should be at least at 400. Mine is at 185. I am praying Vitamin B12 helps. I really know nothing about Vitamin B12. Just found out mine is way too low for neuropathy. These doctors need to read the actual numbers, not just the highlights of what blood work is out of range. Maybe this could have been caught 2 years ago. I don't know if Vitamin B12 will help, but I am giving it a try. We all go thru so much.... Lori Renee

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@mcgatt

Oh God! Think I'm headed that way. Just hope my screams at night don't awaken my neighbors. There must be a way to get to the place where there is no pain. Mind over matter?

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So far as I can tell that place of no pain only comes only when I finally fall asleep. That sleep only last a couple of hours and then I am back at it. Here is something I learned from my neurologist when discussing this subject of pain. There is your tolerance to pain and there is your memory of it. They are separate. I have a very high tolerance to pain other wise I would either pass out from it or I could die from it. The memory of my excruciating pain is where my brain is stuck. It has accepted this as how I should feel it all the time. I have read a lot of research on this and it is a very complicated subject. There have been a lot of very smart scientists working on why this happens but so far no real answers. If someone did discover why they would win the Nobel prize. As far as trying to separate yourself from your pain, good luck on that. I read a long time ago about certain monks who could do this but I don’t understand how. I have been practicing meditation for sometime and I can stop my thought process for about 3 or 4 minutes and I have experienced some relief from pain but that is very hard to do. Your mind always wants to think. Thinking is what causes stress and too much stress causes and increases your pain. Really very hard to get around any of that. With having Central Sensitization Syndrome it is almost impossible now to meditate. I still think that anyone who doesn’t have my medical problem can reach some pain relief this way. It is a natural process, there no side affects, and it won’t cost you a thing to try.

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@goldleaf

So far as I can tell that place of no pain only comes only when I finally fall asleep. That sleep only last a couple of hours and then I am back at it. Here is something I learned from my neurologist when discussing this subject of pain. There is your tolerance to pain and there is your memory of it. They are separate. I have a very high tolerance to pain other wise I would either pass out from it or I could die from it. The memory of my excruciating pain is where my brain is stuck. It has accepted this as how I should feel it all the time. I have read a lot of research on this and it is a very complicated subject. There have been a lot of very smart scientists working on why this happens but so far no real answers. If someone did discover why they would win the Nobel prize. As far as trying to separate yourself from your pain, good luck on that. I read a long time ago about certain monks who could do this but I don’t understand how. I have been practicing meditation for sometime and I can stop my thought process for about 3 or 4 minutes and I have experienced some relief from pain but that is very hard to do. Your mind always wants to think. Thinking is what causes stress and too much stress causes and increases your pain. Really very hard to get around any of that. With having Central Sensitization Syndrome it is almost impossible now to meditate. I still think that anyone who doesn’t have my medical problem can reach some pain relief this way. It is a natural process, there no side affects, and it won’t cost you a thing to try.

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That is very interesting ... I appreciate you sharing your studies. Peggy

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@jimhd

@lorirenee1

Thanks for the information. It sounds like I don't need to worry about it.

Jim

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@jimhd You are very welcome.....Lori Renee

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@goldleaf

So far as I can tell that place of no pain only comes only when I finally fall asleep. That sleep only last a couple of hours and then I am back at it. Here is something I learned from my neurologist when discussing this subject of pain. There is your tolerance to pain and there is your memory of it. They are separate. I have a very high tolerance to pain other wise I would either pass out from it or I could die from it. The memory of my excruciating pain is where my brain is stuck. It has accepted this as how I should feel it all the time. I have read a lot of research on this and it is a very complicated subject. There have been a lot of very smart scientists working on why this happens but so far no real answers. If someone did discover why they would win the Nobel prize. As far as trying to separate yourself from your pain, good luck on that. I read a long time ago about certain monks who could do this but I don’t understand how. I have been practicing meditation for sometime and I can stop my thought process for about 3 or 4 minutes and I have experienced some relief from pain but that is very hard to do. Your mind always wants to think. Thinking is what causes stress and too much stress causes and increases your pain. Really very hard to get around any of that. With having Central Sensitization Syndrome it is almost impossible now to meditate. I still think that anyone who doesn’t have my medical problem can reach some pain relief this way. It is a natural process, there no side affects, and it won’t cost you a thing to try.

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@goldleaf I think that when pain is so very severe, I develop OCD. The pain interrupts me from thinking about anything else. It rolls and rolls and rolls around in my mind, because it is the most extreme of my stimuli. Absolutely nothing interferes, even when I am doing other things. On the occasion that it settles down, which is very rare, I get anxiety wondering how long it will be before it comes again. I have severe peripheral neuropathy in my feet, and definitely have Central Sensitization Syndrome. Unfortunately t there are very few meds for it. I have been able to think myself out of pain, but it does not last long. I find I like the right CBD and marijuana not only because it does help the pain, but also breaks up the OCD cycle for awhile. It is wonderful not to ruminate about pain. Ruminating becomes sickening. It was not part of my personality before I became sick. I take Kratom, because the right Kratom can break the ruminating cycle, and make the pain go away for about 4 hours. Now I just started Low Dose Naltrexone, and my pain, in the last 4 days, has been lower than it has been in 2 years. I feel it is too soon to judge this drug, but I have my fingers crossed. Unfortunately, shoes are a terrible trigger to get pain started, and they got the pain going again by mid afternoon, with the Naltrexone. However, I will do a separate post about Low Dose Naltrexone in three or four weeks, when I see how it is really working. Living this way is not fathomable. I never would have imagined this. Lori Renee

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Looking forward to your Naltrexone 'summary' Lori. What is the dosage right now? Easy to get or compounding challenged?

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@lorirenee1

@goldleaf I think that when pain is so very severe, I develop OCD. The pain interrupts me from thinking about anything else. It rolls and rolls and rolls around in my mind, because it is the most extreme of my stimuli. Absolutely nothing interferes, even when I am doing other things. On the occasion that it settles down, which is very rare, I get anxiety wondering how long it will be before it comes again. I have severe peripheral neuropathy in my feet, and definitely have Central Sensitization Syndrome. Unfortunately t there are very few meds for it. I have been able to think myself out of pain, but it does not last long. I find I like the right CBD and marijuana not only because it does help the pain, but also breaks up the OCD cycle for awhile. It is wonderful not to ruminate about pain. Ruminating becomes sickening. It was not part of my personality before I became sick. I take Kratom, because the right Kratom can break the ruminating cycle, and make the pain go away for about 4 hours. Now I just started Low Dose Naltrexone, and my pain, in the last 4 days, has been lower than it has been in 2 years. I feel it is too soon to judge this drug, but I have my fingers crossed. Unfortunately, shoes are a terrible trigger to get pain started, and they got the pain going again by mid afternoon, with the Naltrexone. However, I will do a separate post about Low Dose Naltrexone in three or four weeks, when I see how it is really working. Living this way is not fathomable. I never would have imagined this. Lori Renee

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As we seem to be in the boat, so to speak, I might give you some of my understanding of stress. OCD is a stress disorder. Almost all so called mental disorders that doctors have names for, are stress related. As I understand it, genetics are to blame for this. Anxiety is an is in inherited problem in a lot of people. Here again, doctors have no cures for they dish out different named tranquilizers. I have had experience with that crap too. They never helped and gave me more problems than I already had. I was diagnosed with PTSD. I will tell you of some similarities and some differences between you and me that you have mentioned so far. The day I had surgery, the surgeon was suppose to fix a rectal tear, instead he permanently damaged the nerves in that area. When I went home that evening, both my feet started to feel weird. By the next morning they hurt like hell. Peripheral nerve damage. PTSD is a stress disorder and now this doctor just made that condition worse. Here is one of the differences between you and me and I find this odd. Most of the people that I have read about that have been diagnosed with Central Sensitization Syndrome are women and I am a man. I am 71 and have been married for 42 years. I have two sons and 5 grandchildren. I use to work for a telephone company and mostly climbed telephone poles all day. It was the area that I worked in, Watts, Compton, that brought on the PTSD. I had too many fights with the people that lived there. I had to retire to early from my job. I was in a war and I didn’t even have to leave the U.S. I don’t know if you have been really diagnosed with Central Sensitization Syndrome and since I have been unable to carry on a real conversation with someone who has this, I will give you some of my inSite on how this affects me. If you talk to any doctor, and I have had to talk to way to many, about anything that bothers you, such as racing thoughts, or pains throughout your body, they jump to a psychiatric or a medical problem diagnosis. This is so dumb. I made that mistake a couple of times. These guys shouldn’t be doing this. This has to do with the way they are trained I have been told. I call them the 15 minute wonders. I learned never trust anyone who does this. With Central Sensitization Syndrome, a lot of what goes on mentally and physically, is driven by all the side affects of hypersensitivity. In reality you don’t have those medical problems they come up with. I am not saying you don’t really have medical problems, you probably do, but not those they come up with. I have a couple of real ones. I was born with Thyroid disease. This is probably why I am in the company of so many women. Women tend to have this medical problem more then men. My mom had thyroid disease. She had Hyperthyroidism and I was diagnosed with hypothyroidism. Again a genetic problem. Again no cure and just a pill to control it sort of. I don’t know if you have diagnosed with this but from what I have learned from the neurologist I have been seeing and the research I have been doing on my own, this plays a major role in why you end up with Central Sensitization Syndrome. It makes you predisposed to this. Thyroid gland controls your central nervous system. I know it’s not that simple but if you understand that when some part of you is not working right, it affects the rest of you. The snowball affect. I am not a doctor so I won’t use medical terminology. The thyroid gland produces hormones that go to a couple of places in your body. One of them is your pituitary gland and one is the central nervous system in your brain. The pituitary gland produces endorphins. The endorphins are necessary in respect to pain. They help your body deal with physical pain. In my case and the fact I am lacking in that production, I have started out in life being more sensitive to physical pain. When it comes to your brain, endorphins affect your pleasure center. Too little of this will make you depressed too much will make you aggravated. Snowball is a good term for all the crap this can cause. It affects who you are and how you deal with life. Then imagine if you hyper sensitize that. I see you use meds. I can’t. I started noticing back when the psychiatrist I was seeing was trying those meds he was prescribing and all the bad reaction I was having, it was chemical sensitivity that was taking place. After my operation, that problem got worse. I could no longer use antibiotics and I had developed problems eating foods I could eat before that surgery. I had developed digestive problems. It took me a long time to find out what was really happening. Doctors missed all of this. The next piece of crap was pain meds. Because I was having digestive problems the idea of these idiots was to use a pain patch so I didn’t have to put the pill into my digestive system. The fact that this crap goes into your digestive system anyway I guess most of been too much of a stretch for these guys to get. I was prescribed the Fentynal patch. Talking about a real mistake this was it. This is the worse thing that you can do to someone like me. The only reason I lasted so long on this drug was because I was only using 25 mg. The other was my chemical sensitivity. I only needed a small does to deal with my pain. The operation took place in 2006 and I started using this crap in 2011. It worked for awhile. Then in November of 2016, I had a pancreatitis attack which nearly killed me. I never had a problem with my pancreas before and after a lot of tests and exploratory procedures, I still didn’t have one. The doctors were stumped. I wasn’t. Trying to deal with these guys was useless. The result of that attack and the resulting starvation of an entire year, my pancreas had stopped working, made me research this problem on my own. It took about 1/2 hour of my time to come up with the answer. Fentynal was the cause. I was only using two meds at that time. Thyroid med and Fentynal. Thyroid med wouldn’t do this but after looking up what Fentynal can cause, it was plain to see. I was finally referred to a gastroenterologist who is a pretty bright guy and he agreed with my findings. I had to detox from that crap and that was very painful since as I found out the hard way, I could no longer use any pharmaceutical meds. Chemical sensitivity. Three days into the detox and my pancreas started working again. Here is a weird part. The pancreas prudence to things, insulin and an enzyme that helps in the absorption of food nutrients. It didn’t stop the insulin production just the nutrient part. I started to gain my weight back and some of my health and I thought I was on my way back to some recovery when I was smacked in the face with this new reality of Central Sensitization Syndrome. I am sorry, I have already told this story to too many people already and sometimes I can’t help telling someone else. It is boring to lot of them so I will apologize. I did keep a lot of the gory parts out though. The doctors I see now know all this now and it is real. The snowball affect and those who caused to happen know to.

REPLY
@goldleaf

As we seem to be in the boat, so to speak, I might give you some of my understanding of stress. OCD is a stress disorder. Almost all so called mental disorders that doctors have names for, are stress related. As I understand it, genetics are to blame for this. Anxiety is an is in inherited problem in a lot of people. Here again, doctors have no cures for they dish out different named tranquilizers. I have had experience with that crap too. They never helped and gave me more problems than I already had. I was diagnosed with PTSD. I will tell you of some similarities and some differences between you and me that you have mentioned so far. The day I had surgery, the surgeon was suppose to fix a rectal tear, instead he permanently damaged the nerves in that area. When I went home that evening, both my feet started to feel weird. By the next morning they hurt like hell. Peripheral nerve damage. PTSD is a stress disorder and now this doctor just made that condition worse. Here is one of the differences between you and me and I find this odd. Most of the people that I have read about that have been diagnosed with Central Sensitization Syndrome are women and I am a man. I am 71 and have been married for 42 years. I have two sons and 5 grandchildren. I use to work for a telephone company and mostly climbed telephone poles all day. It was the area that I worked in, Watts, Compton, that brought on the PTSD. I had too many fights with the people that lived there. I had to retire to early from my job. I was in a war and I didn’t even have to leave the U.S. I don’t know if you have been really diagnosed with Central Sensitization Syndrome and since I have been unable to carry on a real conversation with someone who has this, I will give you some of my inSite on how this affects me. If you talk to any doctor, and I have had to talk to way to many, about anything that bothers you, such as racing thoughts, or pains throughout your body, they jump to a psychiatric or a medical problem diagnosis. This is so dumb. I made that mistake a couple of times. These guys shouldn’t be doing this. This has to do with the way they are trained I have been told. I call them the 15 minute wonders. I learned never trust anyone who does this. With Central Sensitization Syndrome, a lot of what goes on mentally and physically, is driven by all the side affects of hypersensitivity. In reality you don’t have those medical problems they come up with. I am not saying you don’t really have medical problems, you probably do, but not those they come up with. I have a couple of real ones. I was born with Thyroid disease. This is probably why I am in the company of so many women. Women tend to have this medical problem more then men. My mom had thyroid disease. She had Hyperthyroidism and I was diagnosed with hypothyroidism. Again a genetic problem. Again no cure and just a pill to control it sort of. I don’t know if you have diagnosed with this but from what I have learned from the neurologist I have been seeing and the research I have been doing on my own, this plays a major role in why you end up with Central Sensitization Syndrome. It makes you predisposed to this. Thyroid gland controls your central nervous system. I know it’s not that simple but if you understand that when some part of you is not working right, it affects the rest of you. The snowball affect. I am not a doctor so I won’t use medical terminology. The thyroid gland produces hormones that go to a couple of places in your body. One of them is your pituitary gland and one is the central nervous system in your brain. The pituitary gland produces endorphins. The endorphins are necessary in respect to pain. They help your body deal with physical pain. In my case and the fact I am lacking in that production, I have started out in life being more sensitive to physical pain. When it comes to your brain, endorphins affect your pleasure center. Too little of this will make you depressed too much will make you aggravated. Snowball is a good term for all the crap this can cause. It affects who you are and how you deal with life. Then imagine if you hyper sensitize that. I see you use meds. I can’t. I started noticing back when the psychiatrist I was seeing was trying those meds he was prescribing and all the bad reaction I was having, it was chemical sensitivity that was taking place. After my operation, that problem got worse. I could no longer use antibiotics and I had developed problems eating foods I could eat before that surgery. I had developed digestive problems. It took me a long time to find out what was really happening. Doctors missed all of this. The next piece of crap was pain meds. Because I was having digestive problems the idea of these idiots was to use a pain patch so I didn’t have to put the pill into my digestive system. The fact that this crap goes into your digestive system anyway I guess most of been too much of a stretch for these guys to get. I was prescribed the Fentynal patch. Talking about a real mistake this was it. This is the worse thing that you can do to someone like me. The only reason I lasted so long on this drug was because I was only using 25 mg. The other was my chemical sensitivity. I only needed a small does to deal with my pain. The operation took place in 2006 and I started using this crap in 2011. It worked for awhile. Then in November of 2016, I had a pancreatitis attack which nearly killed me. I never had a problem with my pancreas before and after a lot of tests and exploratory procedures, I still didn’t have one. The doctors were stumped. I wasn’t. Trying to deal with these guys was useless. The result of that attack and the resulting starvation of an entire year, my pancreas had stopped working, made me research this problem on my own. It took about 1/2 hour of my time to come up with the answer. Fentynal was the cause. I was only using two meds at that time. Thyroid med and Fentynal. Thyroid med wouldn’t do this but after looking up what Fentynal can cause, it was plain to see. I was finally referred to a gastroenterologist who is a pretty bright guy and he agreed with my findings. I had to detox from that crap and that was very painful since as I found out the hard way, I could no longer use any pharmaceutical meds. Chemical sensitivity. Three days into the detox and my pancreas started working again. Here is a weird part. The pancreas prudence to things, insulin and an enzyme that helps in the absorption of food nutrients. It didn’t stop the insulin production just the nutrient part. I started to gain my weight back and some of my health and I thought I was on my way back to some recovery when I was smacked in the face with this new reality of Central Sensitization Syndrome. I am sorry, I have already told this story to too many people already and sometimes I can’t help telling someone else. It is boring to lot of them so I will apologize. I did keep a lot of the gory parts out though. The doctors I see now know all this now and it is real. The snowball affect and those who caused to happen know to.

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My first time reading your story. You are obviously an intelligent and persistent man who has shown more restraint and patience in dealing with extremely complicated medical problems and a trying medical establishment than I have in dealing with mine. It's good to hear persistence and intelligence pays off. Best of luck to you in the New Year.

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@jager5210

My first time reading your story. You are obviously an intelligent and persistent man who has shown more restraint and patience in dealing with extremely complicated medical problems and a trying medical establishment than I have in dealing with mine. It's good to hear persistence and intelligence pays off. Best of luck to you in the New Year.

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I can't talk now my phone is misinterpreting my words it's part of the
conspiracy it's part of the conspiracy

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@mcgatt

I can't talk now my phone is misinterpreting my words it's part of the
conspiracy it's part of the conspiracy

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Why did you post this crap?

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What crap are you talking about

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