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Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
TrustIt
Well known member
Is TMS Help another forum or one here? I'm looking for the best support and success stories for digestive and anxiety issues. I am on a roller coaster! I'll be in pain and discomfort for a day or so until I can get a grip on my thoughts that go right to "what did i do to cause this today...blah blah blah". When I feel good I am 100% convinced it's TMS and feel totally healed. Then here it comes again seemingly out of the blue. But I know it's not. I know what to do but it seems my mind is the enemy and I feel trapped and not wanting to be in my body. Anyway thank you for sharing your story and answering about any other helpful sites.
Drew
Peer Supporter
Hi @Dorado
Been a big admirer of your posts and recovery journey and stories.
. I have crps and neuropathic pain (burnint tingling pins and needles bugs crawling biting and cold water feeling twitching bfs and nerve pain) for last 3-4 years and what crazy I have seen some amazing improvement when I just pushed myself at the gym and became very active and got busy in life the pain subsided. The neuropathic pain was always mainly in my legs and certain times in last two years I have been working out like an athlete doing lunges, squats upto 200lbs, step up, leg press upto 500 lbs and a lot of biking and cardio. But last 4 months all neuropathic pain has come back with a vengeance and not just in legs but all over especially the burning skin, tingling, electric shocks, cold water feeling, fire ants biting crawling, you name it and I have that neuropathic symptoms. I had these nerve symptoms before too but they slowly faded I even travelled all around Europe and went to 16 counties on my own working out going to bars having a great time. But last 3 months my mom visited I panicked to her about still getting these symptoms and more I panicked it’s like everything came back and then we went and met 3-4 more doctors and the more I explained my old symptoms it’s like my brain was listening and I have debilitating pain in legs and all nerve symptoms back all the time, the nerve sensitivity and when my mom was still here my full body was having nerve symptoms shocks tingling burning, it was like in just the 3 weeks she was here the more I focused and panicked about my problems it just kept intensifying and now I almost feel like a cripple in just last two months. It’s astonishing to see I was lifting 200 lbs squats and doing Such hard workout again thinking I’m mostly past it with most of my nerve symptoms restricted to stressful times or night time while sleeeping or in morning to now them being there 24/7 and some days I can’t even walk. When I started getting better 2 years ago I couldn’t walk anymore so I forced myself to Walk 10-15 miles everyday, I couldn’t wear jeans or any clothing pretty much would cause sensivity pain in knees classic CRPS allodynia sign. I have been overly obsessing and spending about 10-15 hours on forums everyday since this relapse and everytime I have to explain my stmptoms even right now as I’m writing I can feeling them Going up and up. If I pick up and call mom n dad and vent or start getting sad or panicky the symptoms go up 100 times but if I don’t call them every morning I wake up with full body burning tingling and every nerve symptoms everywhere. I can’t belive just 7 months ago I was dancing in Ireland and running around in Barcelona and here I am restricted to my bed unable to do anything and because of wrtiting and explaining my symptoms to so many people over the last 2 months it’s like every single one of them is back which I thought I had forgotten or loved past from. It’s like my nerves are so hyper and nervous system can’t seem to turn off anymore.
Dorado
Beloved Grand Eagle
Hi, @Drew! I apologize for missing your tags. I don’t read my direct messages very often and am also sorry if you tried messaging me that way as well. I’m not a doctor and always encourage people to get a physician’s “all clear.” That said, symptoms that come and go are suspicious. You should ask yourself what was going on in your life when the symptoms started and what you were doing when they seemed to dissipate. We have had members recover from neuropathic symptoms (including me!) and even severe conditions such as CRPS. How do you deal with stress on a daily basis? Has your mother been supportive?
Remember that the mind-body connection is perfectly normal and experienced by all humans at some point, and even animals such as cats. You are not alone! What support networks are available to you? What makes you feel relaxed? How do you calm your nervous system down? An upset sympathetic nervous system can cause all kinds of symptoms that may be completely terrifying and off the charts painful and bothersome, but are ultimately not permanent, as evidenced by many of our success stories. We are here for you!
Remember that the mind-body connection is perfectly normal and experienced by all humans at some point, and even animals such as cats. You are not alone! What support networks are available to you? What makes you feel relaxed? How do you calm your nervous system down? An upset sympathetic nervous system can cause all kinds of symptoms that may be completely terrifying and off the charts painful and bothersome, but are ultimately not permanent, as evidenced by many of our success stories. We are here for you!
Leonardo
New Member
Hi @Dorado ,
When you were healing did you feel it was imperative to feel the sensations (emotions) running through your body?
When people say, you need to feel your emotions, is this what they mean?
When I remove all of life’s distractions and actually be mindful of right now, there is always a bodily sensation present. I feel I have been totally disconnected from my body and way to invested in my anxious thoughts. I was curious to get your opinion on this?
Thanks!
I hope everyone is doing well! Your best days are ahead of you!!!
When you were healing did you feel it was imperative to feel the sensations (emotions) running through your body?
When people say, you need to feel your emotions, is this what they mean?
When I remove all of life’s distractions and actually be mindful of right now, there is always a bodily sensation present. I feel I have been totally disconnected from my body and way to invested in my anxious thoughts. I was curious to get your opinion on this?
Thanks!
I hope everyone is doing well! Your best days are ahead of you!!!
TrustIt
Well known member
I had panic attacks a few years ago. The thing that brought me relief was something I read that was similar to the Sarno ideas of it being psychosomatic and that Claire Weeks calls The Second Fear. In other words the physical symptoms of an attack start that brings up the first fear. The second fear is the "what if" story you immediately tell yourself about it. E.g., Are you saying to yourself things like "oh no this is harming me!" or "How long is this going to last!" Or whatever your fear is of something terrible happening right now or next. I learned that a panic attack actually is NOT harmful to your body. That was huge for me to know that. My old belief of harm was changed to its just my mind. It is over relatively fast, so if you can manage to sustain your thought at the moment you feel it coming on to just being with it and not think anything further or that it is harming you they will go away. For me the cure was the change in my belief that it was harmful. Since I stopped seeing it as a huge threat, it just didn't work anymore as a distraction and my mind had to come up with a symptom imperative. Lol Not that that is ideal but I was glad for the change into something I could more easily deal with as TMS. When symptoms tend to appear at the same time and/or in the same situations again and again, we set ourselves up in an anticipatory state which is the signal for the mind to repeat and it will certainly accommodate.@Dorado
Thank you so much for your reply with the great advice!
I actually struggle a lot with this *surrending* method..
The last week was more or less positive for me because I managed to not have a panic attack .. TILL Yesterday..
Again I was lying in my bed and watching a movie ( at 7 pm) as I again felt that my heart started to beat fast .. all the last time I could calm myself and tell to myself that its just anxiety and it went .. This time I also tried again to do it but I couldnt I calm myself and freaked out..
My heart started to beat fast and I left the room.. I really dont know what to do because when I get this feeling of fear I really feel like Im dying.. I don’t understand how to not react to this…
I get so weak, sweaty and begin to shake.. and then I can not stop thinking that now is something bad about to happen with me.. and I get this full blown attack - where I fear I might get a heart attack or a stroke or whatever..
Its just this overwhelming SYMPTOMS which start in the first place.. they are so fearful .. Its so strong, like my heart starts to beat fast (out of nowhere), I get extremly sweaty and shaky.. and this feelings are so extremly scary to me.. I cant tell other then fear them, because they feel so dangerous to me..
I dont know how to not react to heart which beats with 160 bpm, sweatyness, shakyness, hot flashes and so on.. HOW?
I dont uderstand how you could just let this all be, whithout fearing it? I try, but it doesnt seem to work, because I honestly just freak out when I feel this.
Dorado
Beloved Grand Eagle
@Leonardo, I did not really take time to notice the sensations - I simply accepted them, understood that they were a product of the mind-body connection, and believed they would go away when my nervous system was fully relaxed (which may take some time). However, that doesn't mean the approach you're asking about won't work for you! I appreciate the positivity in your post. 
@TrustIt, it sounds like you are truly living up your username! Great post; thank you so much for sharing.
@TrustIt, it sounds like you are truly living up your username! Great post; thank you so much for sharing.
@Dorado your story has been one the most helpful I’ve come across on this site but there’s one shared symptom on your list I can’t quite get past.
As someone who suffers from intermittent back pain/chest tightness when sitting/lying I would find it a whole lot easier to push on with my life without the emotional numbness. I’d love to know how you overcame that particular symptom as I often find myself wondering “what’s the point?” when trying to enjoy a film/music when all i feel is a tightness in the chest or a pain in my back.
As someone who suffers from intermittent back pain/chest tightness when sitting/lying I would find it a whole lot easier to push on with my life without the emotional numbness. I’d love to know how you overcame that particular symptom as I often find myself wondering “what’s the point?” when trying to enjoy a film/music when all i feel is a tightness in the chest or a pain in my back.
Dorado
Beloved Grand Eagle
I accepted every symptom as a product of the mind-body connection and treated my body with empathy, understanding, and patience. This took time to truly commit to, but ultimately proved to be very worth it! There was no need for me to fear the symptoms so much after truly believing they’d go away once my sympathetic nervous system had sufficient time to relax.
We’re all particularly afraid of or disturbed by specific symptoms. For me, panic attacks as well as the highly painful, visible changes in my hands and feet were more disturbing than anything else.
We’re all particularly afraid of or disturbed by specific symptoms. For me, panic attacks as well as the highly painful, visible changes in my hands and feet were more disturbing than anything else.
TrustIt
Well known member
Getting the central nervous system to relax is my biggest challenge. Even with meditation, walking, breathing, herbs. So frustrating to feel like I believe all the digestive and sinus stuff is tms and follow so much advice on this forum and I know it takes time but I am having a rough time right now and it's one of those moments where I wonder what I'm still doing here if it's just to suffer. I'm not suicidal mind you just so very frustrated and turn here just to release "something".
Dorado
Beloved Grand Eagle
@Ashley A, I’m going to respond to your alcoholic neuropathy question here because it’s a complex story for me and I feel like my response would overtake someone else’s thread! Pretty much all of my nerve symptoms mentioned here were triggered by things like alcohol, caffeine, vaping, etc. (basically like a "chemical sensitivity syndrome"): https://www.tmswiki.org/forum/threads/how-i-healed-from-a-myriad-of-symptoms.18723/ (How I healed from a myriad of symptoms)
The "chemical sensitivity" started with alcohol before caffeine, vaping, etc. ever bothered me. I didn't understand why alcohol was triggering nerve symptoms, and the internet of course said alcoholic neuropathy. What a spiral that was. Because I'd experienced nerve symptoms as a child (they weren't triggered by chemicals back then, of course), I figured that perhaps I was predisposed to some type of neuropathy and alcohol was simply more potent to me. WRONG.
This can happen with anything. That's why someone can have an injury that should heal but ultimately leads to CRPS - emotions can cause your nervous system to become overreactive. Chronic Lyme that should have been healed with antibiotics is another perfect example. For me, I wasn't able to get over hangovers, and nerve symptoms started coming on even after just a single drink. That doesn’t happen anymore. Now, I absolutely love champagne and wine on a Friday night, but it's ultimately not the best way to regularly alleviate pain. One of the issues is that it can often lead to more anxiety, depression, exhaustion, rage, etc.
To further provide context on why I felt like I had alcoholic neuropathy, part of my time at college was spent living it up at fraternity and sorority houses, which some friends joked that I became an "honorary member" of because I could “hang.” That ended, but at 24 I moved out of my parents’ house and into a lively neighborhood that I spent several years in. Alcohol was promoted nearly everywhere and normalized to a far higher degree because of all the games and concerts at a very famous sports stadium, parades (gay pride, sports champs, Halloween, etc.), street festivals, clubs, restaurants, etc. I love statistics, so here’s one: it was ranked in the top 20 among 29,000 U.S. neighborhoods in the area of binge drinking and the CDC publicly called us out on it. We were literally in the top 1% in the U.S. I’m not blaming anyone else - I’m fully responsible for my own actions.
In an attempt to fit in with some people, I was living it up too much for my personal capacity and felt guilty. I was successful at work and doing well in many other aspects of life, but the partying didn't sit well with me. I also allowed myself to feel guilty when my friends said I wasn’t “drunk enough” or staying out late enough. I really think this complex guilt tied to a unique situation and culture *further* perpetuated my loop of nerve symptoms. And looking back on it, it was actually a relief to have an excuse to get away from alcohol, although I should have just put my foot down like an adult and said no. However, I realized this and have definitely made changes. I very likely disappointed some people on my 30th birthday when I only had three standard sized drinks at night. But even though I’ve made significant strides in the management of my anxiety and overcoming various obsessive thoughts, too much alcohol continues to do NOTHING for my mental health. So this had a deep history for me, especially as someone who worried that I might be predisposed to neuropathy.
What are some other things that relax you and soothe your nervous system? Taking a nice walk, hanging out with an animal, talking on the phone with a loved one, reading a good book, etc.? This is for you to think about on your own: what was going on in your life when the symptoms started? What makes you feel balanced? Because alcohol usually isn’t the best for our mental, emotional, or physical states, it’s not the most reliable way to decrease our pain and other symptoms. It also loses its effectiveness over time and we quickly need more to get the same effects. The good news is that your pain can and WILL go away with other techniques that truly help you feel calm.
The "chemical sensitivity" started with alcohol before caffeine, vaping, etc. ever bothered me. I didn't understand why alcohol was triggering nerve symptoms, and the internet of course said alcoholic neuropathy. What a spiral that was.
Because I'd experienced nerve symptoms as a child (they weren't triggered by chemicals back then, of course), I figured that perhaps I was predisposed to some type of neuropathy and alcohol was simply more potent to me. WRONG.This can happen with anything. That's why someone can have an injury that should heal but ultimately leads to CRPS - emotions can cause your nervous system to become overreactive. Chronic Lyme that should have been healed with antibiotics is another perfect example. For me, I wasn't able to get over hangovers, and nerve symptoms started coming on even after just a single drink. That doesn’t happen anymore. Now, I absolutely love champagne and wine on a Friday night, but it's ultimately not the best way to regularly alleviate pain. One of the issues is that it can often lead to more anxiety, depression, exhaustion, rage, etc.
To further provide context on why I felt like I had alcoholic neuropathy, part of my time at college was spent living it up at fraternity and sorority houses, which some friends joked that I became an "honorary member" of because I could “hang.” That ended, but at 24 I moved out of my parents’ house and into a lively neighborhood that I spent several years in. Alcohol was promoted nearly everywhere and normalized to a far higher degree because of all the games and concerts at a very famous sports stadium, parades (gay pride, sports champs, Halloween, etc.), street festivals, clubs, restaurants, etc. I love statistics, so here’s one: it was ranked in the top 20 among 29,000 U.S. neighborhoods in the area of binge drinking and the CDC publicly called us out on it. We were literally in the top 1% in the U.S. I’m not blaming anyone else - I’m fully responsible for my own actions.
In an attempt to fit in with some people, I was living it up too much for my personal capacity and felt guilty. I was successful at work and doing well in many other aspects of life, but the partying didn't sit well with me. I also allowed myself to feel guilty when my friends said I wasn’t “drunk enough” or staying out late enough. I really think this complex guilt tied to a unique situation and culture *further* perpetuated my loop of nerve symptoms. And looking back on it, it was actually a relief to have an excuse to get away from alcohol, although I should have just put my foot down like an adult and said no. However, I realized this and have definitely made changes. I very likely disappointed some people on my 30th birthday when I only had three standard sized drinks at night. But even though I’ve made significant strides in the management of my anxiety and overcoming various obsessive thoughts, too much alcohol continues to do NOTHING for my mental health. So this had a deep history for me, especially as someone who worried that I might be predisposed to neuropathy.
What are some other things that relax you and soothe your nervous system? Taking a nice walk, hanging out with an animal, talking on the phone with a loved one, reading a good book, etc.? This is for you to think about on your own: what was going on in your life when the symptoms started? What makes you feel balanced? Because alcohol usually isn’t the best for our mental, emotional, or physical states, it’s not the most reliable way to decrease our pain and other symptoms. It also loses its effectiveness over time and we quickly need more to get the same effects. The good news is that your pain can and WILL go away with other techniques that truly help you feel calm.
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Ashley A
Peer Supporter
Hi Dorado,
I just wanted to take a moment to say thank you SO much for taking the time to respond to my post! You always put in so much thought and effort into your responses hence why I don’t want to just rush to respond, however I’m flared up and exhausted so I plan to respond thoughtfully tomorrow. I just wanted to take a minute to at least thank you. Maybe that wasn’t necessary of me and just further proof of my TMSer personality either way, I’ll reach back out tomorrow.
Thank you!
I just wanted to take a moment to say thank you SO much for taking the time to respond to my post! You always put in so much thought and effort into your responses hence why I don’t want to just rush to respond, however I’m flared up and exhausted so I plan to respond thoughtfully tomorrow. I just wanted to take a minute to at least thank you. Maybe that wasn’t necessary of me and just further proof of my TMSer personality either way, I’ll reach back out tomorrow.
Thank you!
Dorado
Beloved Grand Eagle
No worries and certainly no pressure to respond! My posts ARE quite detailed. I think it stems from me feeling comforted by the details of others’ stories when I first joined this forum. I always felt like I was the only person who experienced XYZ situation, so it helped immensely to realize I wasn’t. These aren’t things I talk about too much with people who know me personally, so it’s also interesting contemplating what the hell went wrong and lead to crazy symptoms. This forum is definitely therapeutic, even as I’ve moved on from those symptoms!
I’m so sorry you’re dealing with intense symptoms right now. Please let us know if you have any questions for us! Remember that the mind-body connection is normal and something we all experience - many of us have been where you are and feel way better. There is hope.
I’m so sorry you’re dealing with intense symptoms right now. Please let us know if you have any questions for us! Remember that the mind-body connection is normal and something we all experience - many of us have been where you are and feel way better. There is hope.
Hey Dorado, hope you're doing well!
I'm going to try and keep this message as organized as I can, but if I get a little rambly or unclear I apologize.
I've been suffering from Anxiety/TMS/Crazy symptoms for the last 13 years? A new symptom comes and goes every now and then and it kind of takes over my entire life. Since discovering TMS, I used the principals from Unlearn your Pain (the Schubiner book) to get over sever Pelvic pain. Even after all this time it's AMAZING that a symptom that obviously feels so real can be created by emotions. I literally had stinging burning pain down there that felt like someone took a match to my crotch (sorry for the TMI).
Anyway, lately it seems the symptom I'm experiencing is 'fatigue'. I feel rundown. My body feels achy, I just don't feel right. I had this symptom in my early twenties and somehow I got over it (not sure how?). I did myself a disservice and I've been obsessively reading CFS forums, trying to disprove that I have CFS, or that what these people are experiencing is TMS. All I'm actually doing is freaking myself out though. Some of these people are bed bound, like cannot get out of bed, and they are like this for YEARS. The whole forum talks about not pushing yourself. How if you do too much you'll crash and be worse than before. It makes me nervous to do exercise myself.
I see you have fatigue as a symptom and I was wondering what extent your fatigue was? I know what you're saying is right because I've used these TMS principals in the past to remove symptoms, but this fatigue one is very frightening to me because it threatens my life as I know it.
I'm going to try and keep this message as organized as I can, but if I get a little rambly or unclear I apologize.
I've been suffering from Anxiety/TMS/Crazy symptoms for the last 13 years? A new symptom comes and goes every now and then and it kind of takes over my entire life. Since discovering TMS, I used the principals from Unlearn your Pain (the Schubiner book) to get over sever Pelvic pain. Even after all this time it's AMAZING that a symptom that obviously feels so real can be created by emotions. I literally had stinging burning pain down there that felt like someone took a match to my crotch (sorry for the TMI).
Anyway, lately it seems the symptom I'm experiencing is 'fatigue'. I feel rundown. My body feels achy, I just don't feel right. I had this symptom in my early twenties and somehow I got over it (not sure how?). I did myself a disservice and I've been obsessively reading CFS forums, trying to disprove that I have CFS, or that what these people are experiencing is TMS. All I'm actually doing is freaking myself out though. Some of these people are bed bound, like cannot get out of bed, and they are like this for YEARS. The whole forum talks about not pushing yourself. How if you do too much you'll crash and be worse than before. It makes me nervous to do exercise myself.
I see you have fatigue as a symptom and I was wondering what extent your fatigue was? I know what you're saying is right because I've used these TMS principals in the past to remove symptoms, but this fatigue one is very frightening to me because it threatens my life as I know it.
Ashley A
Peer Supporter
@Ashley A, I’m going to respond to your alcoholic neuropathy question here because it’s a complex story for me and I feel like my response would overtake someone else’s thread! Pretty much all of my nerve symptoms mentioned here were triggered by things like alcohol, caffeine, vaping, etc. (basically like a "chemical sensitivity syndrome"): https://www.tmswiki.org/forum/threads/how-i-healed-from-a-myriad-of-symptoms.18723/ (How I healed from a myriad of symptoms)
The "chemical sensitivity" started with alcohol before caffeine, vaping, etc. ever bothered me. I didn't understand why alcohol was triggering nerve symptoms, and the internet of course said alcoholic neuropathy. What a spiral that was.
This can happen with anything. That's why someone can have an injury that should heal but ultimately leads to CRPS - emotions can cause your nervous system to become overreactive. Chronic Lyme that should have been healed with antibiotics is another perfect example. For me, I wasn't able to get over hangovers, and nerve symptoms started coming on even after just a single drink. That doesn’t happen anymore. Now, I absolutely love champagne and wine on a Friday night, but it's ultimately not the best way to regularly alleviate pain. One of the issues is that it can often lead to more anxiety, depression, exhaustion, rage, etc.
To further provide context on why I felt like I had alcoholic neuropathy, part of my time at college was spent living it up at fraternity and sorority houses, which some friends joked that I became an "honorary member" of because I could “hang.” That ended, but at 24 I moved out of my parents’ house and into a lively neighborhood that I spent several years in. Alcohol was promoted nearly everywhere and normalized to a far higher degree because of all the games and concerts at a very famous sports stadium, parades (gay pride, sports champs, Halloween, etc.), street festivals, clubs, restaurants, etc. I love statistics, so here’s one: it was ranked in the top 20 among 29,000 U.S. neighborhoods in the area of binge drinking and the CDC publicly called us out on it. We were literally in the top 1% in the U.S. I’m not blaming anyone else - I’m fully responsible for my own actions. In an attempt to fit in with some people, I was living it up too much for my personal capacity and felt guilty. I was successful at work and doing well in many other aspects of life, but the partying didn't sit well with me. I also allowed myself to feel guilty when my friends said I wasn’t “drunk enough” or staying out late enough. I really think this complex guilt tied to a unique situation and culture *further* perpetuated my loop of nerve symptoms. And looking back on it, it was actually a relief to have an excuse to get away from alcohol, although I should have just put my foot down like an adult and said no. However, I realized this and have definitely made changes. I very likely disappointed some people on my 30th birthday when I only had three standard sized drinks at night. But even though I’ve made significant strides in the management of my anxiety and overcoming various obsessive thoughts, too much alcohol continues to do NOTHING for my mental health. So this had a deep history for me, especially as someone who worried that I might be predisposed to neuropathy.
What are some other things that relax you and soothe your nervous system? Taking a nice walk, hanging out with an animal, talking on the phone with a loved one, reading a good book, etc.? This is for you to think about on your own: what was going on in your life when the symptoms started? What makes you feel balanced? Because alcohol usually isn’t the best for our mental, emotional, or physical states, it’s not the most reliable way to decrease our pain and other symptoms. It also loses its effectiveness over time and we quickly need more to get the same effects. The good news is that your pain can and WILL go away with other techniques that truly help you feel calm.
@Ashley A, I’m going to respond to your alcoholic neuropathy question here because it’s a complex story for me and I feel like my response would overtake someone else’s thread! Pretty much all of my nerve symptoms mentioned here were triggered by things like alcohol, caffeine, vaping, etc. (basically like a "chemical sensitivity syndrome"): https://www.tmswiki.org/forum/threads/how-i-healed-from-a-myriad-of-symptoms.18723/ (How I healed from a myriad of symptoms)
The "chemical sensitivity" started with alcohol before caffeine, vaping, etc. ever bothered me. I didn't understand why alcohol was triggering nerve symptoms, and the internet of course said alcoholic neuropathy. What a spiral that was.
This can happen with anything. That's why someone can have an injury that should heal but ultimately leads to CRPS - emotions can cause your nervous system to become overreactive. Chronic Lyme that should have been healed with antibiotics is another perfect example. For me, I wasn't able to get over hangovers, and nerve symptoms started coming on even after just a single drink. That doesn’t happen anymore. Now, I absolutely love champagne and wine on a Friday night, but it's ultimately not the best way to regularly alleviate pain. One of the issues is that it can often lead to more anxiety, depression, exhaustion, rage, etc.
To further provide context on why I felt like I had alcoholic neuropathy, part of my time at college was spent living it up at fraternity and sorority houses, which some friends joked that I became an "honorary member" of because I could “hang.” That ended, but at 24 I moved out of my parents’ house and into a lively neighborhood that I spent several years in. Alcohol was promoted nearly everywhere and normalized to a far higher degree because of all the games and concerts at a very famous sports stadium, parades (gay pride, sports champs, Halloween, etc.), street festivals, clubs, restaurants, etc. I love statistics, so here’s one: it was ranked in the top 20 among 29,000 U.S. neighborhoods in the area of binge drinking and the CDC publicly called us out on it. We were literally in the top 1% in the U.S. I’m not blaming anyone else - I’m fully responsible for my own actions. In an attempt to fit in with some people, I was living it up too much for my personal capacity and felt guilty. I was successful at work and doing well in many other aspects of life, but the partying didn't sit well with me. I also allowed myself to feel guilty when my friends said I wasn’t “drunk enough” or staying out late enough. I really think this complex guilt tied to a unique situation and culture *further* perpetuated my loop of nerve symptoms. And looking back on it, it was actually a relief to have an excuse to get away from alcohol, although I should have just put my foot down like an adult and said no. However, I realized this and have definitely made changes. I very likely disappointed some people on my 30th birthday when I only had three standard sized drinks at night. But even though I’ve made significant strides in the management of my anxiety and overcoming various obsessive thoughts, too much alcohol continues to do NOTHING for my mental health. So this had a deep history for me, especially as someone who worried that I might be predisposed to neuropathy.
What are some other things that relax you and soothe your nervous system? Taking a nice walk, hanging out with an animal, talking on the phone with a loved one, reading a good book, etc.? This is for you to think about on your own: what was going on in your life when the symptoms started? What makes you feel balanced? Because alcohol usually isn’t the best for our mental, emotional, or physical states, it’s not the most reliable way to decrease our pain and other symptoms. It also loses its effectiveness over time and we quickly need more to get the same effects. The good news is that your pain can and WILL go away with other techniques that truly help you feel calm.
@Dorado
I’m finally feeling up to responding - it’s been a tough week!
As for your question of what I can do that relaxes and soothes my nervous system - that would usually be walking (walking has saved me) but unfortunately I also developed headaches/pressure/dizziness a few weeks ago and walks make me feel worse. Showers have now become my new way to calm down.
As far as what was going on in my life when the symptoms started-
My chronic symptom has always been upper left side back pain, NEVER the right and now my right side has started becoming symptomatic after 2 1/2 years of nothing so that has been a HUGE stressor for me.
My sister that I’m very close with (although I had a tough relationship with and still harbor resentments towards her for how she treated me) just moved across the country. It was super sudden as well - 4 weeks from the time they decided to move until the time they were gone. I also hadn’t really been seeing her because of Covid so it was really tough to have barely seen her this year and then have her up and move.
My husband and I are also moving in 2 weeks and I have a lot of mixed emotions surrounding the move. On one hand I’m really excited to get out of here because our home is sadly a trigger for me since all of my symptoms started when we moved in here 2 1/2 years ago so I associate this place with causing it. But even though we’re leaving it’s still just bringing up a lot of bad emotions too - all that I missed out on over the years, wondering if we had never moved here in the first place if I’d have developed chronic symptoms. Sad that I’m still dealing with symptoms and will be taking them to a new place with me. A lot of things are triggering me right now.
So I guess to answer your question - I have a lot of stressful things going on in my life.
Even with all the stress and potential reasons for new odd symptoms - I still just can’t seem to shake the thought that I gave myself alcoholic neuropathy from using wine to both numb the pain and fall asleep. My husband seems to think that it’s just not enough for long enough of a period to do that. But I just don’t know. My usual drinking is two glasses of wine a night and sometimes three, with days off here and there and never during the day. But the symptoms came after three nights of heavy drinking - easily 3 glasses of wine each night if not 4. And the next morning is when my right pinky had a strange sensation. I then of course freaked out and assumed the worst and started checking all my other fingers and toes and basically convinced myself that’s what it is. It’s now been 12 days and the sensations have gotten worse and are in both hands and one foot. It’s really freaking me out and keeping me up at night. I don’t know how to stay calm about this. And the thought that I could’ve done this to myself is just too much. I’ve been so depressed and hopeless.
The part that’s really hard for me is that I was really starting to do better with my original symptoms and thought I was starting to turn a corner. My husband also says I put to much pressure on outcomes and how our future is going to be.
I did notice that when I’m busy I don’t feel much of the fingers/toes sensations but when I sit it comes back and when I get stressed it ramps up. I just don’t know what to think? I’m trying hard not to overthink and go down the rabbit hole but it is so hard when I feel like I could have irreversible damage. So now of course with my TMS mind I’m either thinking that I gave myself neuropathy or that I’m creating it and keeping it going by ruminating on it. I’m trying so hard to have an attitude of indifference.
Do you really think stress could cause all of this? And could it really just be coincidence that it started after 3 days of heavy drinking? That my mind clung to that story because it’s always been a fear of mine - that I’ll over come my chronic pain but then have caused damage to my body from drinking. I tend to think in catastrophic proportions. At one point I even worried that I’d get cirrhosis. That I’m not worthy of being pain free. Even if it’s not alcoholic neuropathy I also worry that I’m wiring these new sensations into my brain and that either way I won’t be able to get rid of them. It’s just so hard after 2 1/2 years of other symptoms that were finally starting to get better and now this. I’m feeling hopeless.
Side note that I feel could be of importance-
I noticed of the two hands and one foot I’m feeling sensations in all have existing weaknesses. I know TMS is tricky and uses past injuries to settle in. My right pinky is broken and had never been fixed and it’s the only finger on that hand with sensations. My left arm has had shooting pain in the past when my left upper back was super flared (as it’s been) so it seems logical that it could move to the fingers. And on my left foot the sensation is right on my toe that I dropped a marble slab on 2 weeks ago.
Also interesting - I painted an entire living room yesterday and didn’t have any symptoms until I got in bed.
Sorry for the long ramble, just feeling really scared right now and could use some reassurance.
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Dorado
Beloved Grand Eagle
@Ashley A, I'm not a doctor, but I was told by countless neurologists that alcoholic neuropathy generally occurs in people who are much older and have had far more to drink. But I understand your struggle: to celebrate my 26th birthday years ago, my friends and I partied heavily and hopped around from probably 7 PM on Friday until a local nightclub closed on Sunday, which would have been around 5 AM. I have no idea how much we drank, and while we did take some breaks for food and sleep that weekend, it was a complete and utter disaster. I immediately woke up with a headache that stayed for over a month, and I started developing symptoms including tingling in my lips, toes, fingers, etc. I truly thought I had brain damage. The internet told me it was alcoholic neuropathy and the sensations seemed to flare up every time I had even one drink. The symptoms eventually started coming on whenever I vaped, socially smoked, drank caffeine, ate a meal with more salt, etc. So yes, it IS possible for this to happen. I had a couple of neurologists practically laugh me out of their offices and tell me to get mental help, which wasn't very considerate and made me less receptive to their advice.
One of my neurologists explained that this phenomenon was caused by my autonomic nervous system's sympathetic/fight-or-flight mode constantly being triggered by emotional stress. My nerves eventually started overreacting to chemicals and emotions, and even something as stupid as vaping a tiny amount of "organic" strawberry menthol juice with my friends would induce rashes, twitching muscles, unbearable allodynia, etc. This is not part of my life anymore.
For what it's worth, two and a half years may feel like a long time, but it's not much in the grand scheme of things. Many of us said goodbye to symptoms that lasted a decade or longer, including - but not limited to - Steve Ozanich. You are absolutely right when you say that the mind-body connection/TMS can coast off previously healed injuries. Regarding "wiring sensations into [your] brain," please don't worry about this! The good news is that the brain is neuroplastic and always changing. What you're describing is something you can resolve. Have you spoken to a therapist who understands the mind-body connection, cognitive behavioral therapy, or an equivalent about this? Also, it seems pretty backwards that your right pinky is broken and has never been fixed, yet it's the only finger on that hand with sensations. What has your doctor said about this? Did you find their advice reassuring? Were any tests performed?
One of my neurologists explained that this phenomenon was caused by my autonomic nervous system's sympathetic/fight-or-flight mode constantly being triggered by emotional stress. My nerves eventually started overreacting to chemicals and emotions, and even something as stupid as vaping a tiny amount of "organic" strawberry menthol juice with my friends would induce rashes, twitching muscles, unbearable allodynia, etc. This is not part of my life anymore.
For what it's worth, two and a half years may feel like a long time, but it's not much in the grand scheme of things. Many of us said goodbye to symptoms that lasted a decade or longer, including - but not limited to - Steve Ozanich. You are absolutely right when you say that the mind-body connection/TMS can coast off previously healed injuries. Regarding "wiring sensations into [your] brain," please don't worry about this! The good news is that the brain is neuroplastic and always changing. What you're describing is something you can resolve. Have you spoken to a therapist who understands the mind-body connection, cognitive behavioral therapy, or an equivalent about this? Also, it seems pretty backwards that your right pinky is broken and has never been fixed, yet it's the only finger on that hand with sensations. What has your doctor said about this? Did you find their advice reassuring? Were any tests performed?
If you continue to worry, you're only going to continue to miss out on life and only further stress out your sympathetic nervous system. Nelson Mandela spent 27 years in tiny prison cells and he chose to only look forward. It's easier said than done at times, but it really is true! You absolutely would have developed some sort of symptoms regardless of where you lived because the mind-body connection is a normal part of life that we all experience. Some of us have more intense symptoms than others, but we all deal with it. Your symptoms don't have to be chronic - you can heal and overcome them. Where can you turn to for support in your life (i.e., friends, family, therapist, etc.)? Personally, I would take the move as an opportunity to see what else life has to offer. I know COVID makes everything a bit tricky right now, but there are still opportunities to safely explore and find new interests.
Dorado
Beloved Grand Eagle
@Austin811, chronic fatigue syndrome can absolutely be caused by the mind-body connection/TMS!
I can't say I was confined to my bed and unable to move for significant periods of time like some people, but I started developing fatigue after a particularly severe case of mono (most likely because it seemed like EVERYONE kept telling me that was a possibility), and the fatigue eventually reappeared years later and hit me much harder. I wasn't diagnosed with formal CFS, but it was difficult to concentrate, no amount of sleep was enough, and there were brief times where I did feel like I could barely move. Even attempting to read a few sentences on a page was exhausting for me and my memory - which is something I'm known for by everyone around me - felt poor.
Dr. Howard Schubiner has worked with patients who have had it far worse than I ever did; these people were actually diagnosed with CFS - unlike me because it never got that far because I knew within a few weeks that it was the mind-body connection/TMS and treated it as such. I recommend reading this article: https://www.psychologytoday.com/us/blog/unlearn-your-pain/201606/explaining-the-unexplainable-chronic-fatigue-syndrome (Explaining the Unexplainable: Chronic Fatigue Syndrome)
Here is some other information on CFS: https://www.tmswiki.org/ppd/Chronic_Fatigue_Syndrome (Chronic Fatigue Syndrome)
As I always ask people: does the severity of the symptoms shift? What stressors were occurring in your life while the symptoms came on? What makes you happy? How have you been treating yourself as well as receiving support from others from a mental health perspective?
I can't say I was confined to my bed and unable to move for significant periods of time like some people, but I started developing fatigue after a particularly severe case of mono (most likely because it seemed like EVERYONE kept telling me that was a possibility), and the fatigue eventually reappeared years later and hit me much harder. I wasn't diagnosed with formal CFS, but it was difficult to concentrate, no amount of sleep was enough, and there were brief times where I did feel like I could barely move. Even attempting to read a few sentences on a page was exhausting for me and my memory - which is something I'm known for by everyone around me - felt poor.
Dr. Howard Schubiner has worked with patients who have had it far worse than I ever did; these people were actually diagnosed with CFS - unlike me because it never got that far because I knew within a few weeks that it was the mind-body connection/TMS and treated it as such. I recommend reading this article: https://www.psychologytoday.com/us/blog/unlearn-your-pain/201606/explaining-the-unexplainable-chronic-fatigue-syndrome (Explaining the Unexplainable: Chronic Fatigue Syndrome)
Here is some other information on CFS: https://www.tmswiki.org/ppd/Chronic_Fatigue_Syndrome (Chronic Fatigue Syndrome)
As I always ask people: does the severity of the symptoms shift? What stressors were occurring in your life while the symptoms came on? What makes you happy? How have you been treating yourself as well as receiving support from others from a mental health perspective?
Ashley A
Peer Supporter
@Dorado Thanks for taking the time to reply! I just pushed my self and went for a run even though my symptoms where flared up. I just got home and was feeling pretty disheartened and ready to let the negative thoughts take over when I saw your response - it’s helped way more than you know - so thank you! There are few people that I can exchange messages with or even just see their posts/videos/podcasts, etc and instantly feel better. You are one of them. You mentioned Steve Ozanich - I also keep him in mind all the time. His story is incredible! Dan Buglio and Nicole Sachs are two more of those people that instantly make me feel safer.
Everything that you mention and that the neurologist told you does make perfect sense to me. I really do feel that this could all be my nervous system overreacting - being stuck in fight or flight and getting even more flared up the more I worry and obsess. It’s so hard when those negative scary thoughts creep up. I of course am now moving away from neuropathy a bit and thinking of CRPS. That terrifies me. I remember at the start of my journey I came across some people’s stories with CRPS and now my overthinking brain is clinging to that. I say my affirmations and remind my body that I’m safe but it’s still so difficult. Do you have any recommendations for how to quiet the mind, to reassure myself that I am safe even when I’m in pain, to help move my body into rest and digest, away from fight or flight?
As far as doctors go - I haven’t seen any for my new sensations because I haven’t been ready to go down that rabbit hole - I’m honestly really overwhelmed. When this all began I saw SO many doctors and of course got no real answers and no relief - just lots and lots of debt.
As far as support goes, I do have my husband by I know he’s growing tired of all of this. It’s taken a HUGE toll on our marriage. I don’t really talk about this with friends, they all have a lot going on in their lives - new moms mostly. My family is somewhat available to me but they are all going through their own things - we lost my brother to a drug overdose and my other brother is currently in recovery after 8+ years of heroin addiction. My brothers death is actually what brought on my chronic pain. I do have a therapist so that definitely helps. I just feel like I’m a burden to every else in my life.
Everything that you mention and that the neurologist told you does make perfect sense to me. I really do feel that this could all be my nervous system overreacting - being stuck in fight or flight and getting even more flared up the more I worry and obsess. It’s so hard when those negative scary thoughts creep up. I of course am now moving away from neuropathy a bit and thinking of CRPS. That terrifies me. I remember at the start of my journey I came across some people’s stories with CRPS and now my overthinking brain is clinging to that. I say my affirmations and remind my body that I’m safe but it’s still so difficult. Do you have any recommendations for how to quiet the mind, to reassure myself that I am safe even when I’m in pain, to help move my body into rest and digest, away from fight or flight?
As far as doctors go - I haven’t seen any for my new sensations because I haven’t been ready to go down that rabbit hole - I’m honestly really overwhelmed. When this all began I saw SO many doctors and of course got no real answers and no relief - just lots and lots of debt.
As far as support goes, I do have my husband by I know he’s growing tired of all of this. It’s taken a HUGE toll on our marriage. I don’t really talk about this with friends, they all have a lot going on in their lives - new moms mostly. My family is somewhat available to me but they are all going through their own things - we lost my brother to a drug overdose and my other brother is currently in recovery after 8+ years of heroin addiction. My brothers death is actually what brought on my chronic pain. I do have a therapist so that definitely helps. I just feel like I’m a burden to every else in my life.
Dorado
Beloved Grand Eagle
What you're describing does not sound like CRPS. However, even if it bared similarities to CRPS or were true CRPS, that's another condition we have seen many people overcome with mind-body work. Hope would not be lost!
With regard to affirmations, that's an excellent question. The answer is going to be personal and tailored to each individual. For me, I sometimes like to hold my breath, close my eyes, and say to myself, "I have the ability to feel great, and even if I don't right now, I WILL soon." At one point I wrote a letter to myself when I was feeling fantastic, and I still occasionally reread it when things feel bleak. It also helped remembering that even if someone had true nerve damage, mind-body work could help: https://www.theaustralian.com.au/weekend-australian-magazine/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (NoCookies | The Australian)
When you do feel more relaxed, what brings on those feelings and what are the associated sensations? Those are usually highly effective areas of focus for affirmations and visualization. If you saw a ton of doctors and none of them had a clear diagnosis, I think that's your cue to do mind-body work!
I am so sorry about the pain you have endured with your brother and other life situations. You have been through a lot, but that doesn't mean you are broken. It takes a significant amount of strength to keep going like you are. You are not a burden and you are far from alone. Based on what I’ve gathered from your posts, it sounds like you’re an empathetic person who can provide a lot of value in the lives of other people. Please do not forget or question that!
Additionally, we all know this has been an incredibly challenging and isolating year, which does not benefit our overall mental health. You are still here and clearly you're trying; otherwise, you wouldn't be looking for advice on these forums, researching, etc.! That should make a difference to the people you love, too. I had a cognitive behavioral therapist in the past say they were impressed with my progress and we agreed that meeting was no longer necessary, but I'm not perfect. None of us are without our bad moments. And we are always subject to the mind-body connection!
The main takeaways: don't be so hard on yourself, we're all doing the best we can, and we can and will get better. What is the longest period of time in which you've gone without these symptoms? I’m also asking myself this when it comes to my vices: what other outlets do you have? Steve Ozanich posed this question to me twice. This may help you find better ways to relax your sympathetic nervous system.
Also, I understand symptoms putting a strain on relationships. I don’t even have to go into detail on this one - relationships with my mom, siblings, and friends were all impacted at some point. Our loved ones may feel frustrated when we’re truly falling down a deep hole. They know they can’t fix our problems for us and eventually they have to set boundaries with our reassurance seeking and independence. I do recommend taking small steps to address anxiety in a CBT-like style if you and your therapist can, and continuing mind-body work. So many of us have been there and get it.
With regard to affirmations, that's an excellent question. The answer is going to be personal and tailored to each individual. For me, I sometimes like to hold my breath, close my eyes, and say to myself, "I have the ability to feel great, and even if I don't right now, I WILL soon." At one point I wrote a letter to myself when I was feeling fantastic, and I still occasionally reread it when things feel bleak. It also helped remembering that even if someone had true nerve damage, mind-body work could help: https://www.theaustralian.com.au/weekend-australian-magazine/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (NoCookies | The Australian)
When you do feel more relaxed, what brings on those feelings and what are the associated sensations? Those are usually highly effective areas of focus for affirmations and visualization. If you saw a ton of doctors and none of them had a clear diagnosis, I think that's your cue to do mind-body work!
I am so sorry about the pain you have endured with your brother and other life situations. You have been through a lot, but that doesn't mean you are broken. It takes a significant amount of strength to keep going like you are. You are not a burden and you are far from alone. Based on what I’ve gathered from your posts, it sounds like you’re an empathetic person who can provide a lot of value in the lives of other people. Please do not forget or question that!
Additionally, we all know this has been an incredibly challenging and isolating year, which does not benefit our overall mental health. You are still here and clearly you're trying; otherwise, you wouldn't be looking for advice on these forums, researching, etc.! That should make a difference to the people you love, too. I had a cognitive behavioral therapist in the past say they were impressed with my progress and we agreed that meeting was no longer necessary, but I'm not perfect. None of us are without our bad moments. And we are always subject to the mind-body connection!
The main takeaways: don't be so hard on yourself, we're all doing the best we can, and we can and will get better. What is the longest period of time in which you've gone without these symptoms? I’m also asking myself this when it comes to my vices: what other outlets do you have? Steve Ozanich posed this question to me twice. This may help you find better ways to relax your sympathetic nervous system.
Also, I understand symptoms putting a strain on relationships. I don’t even have to go into detail on this one - relationships with my mom, siblings, and friends were all impacted at some point. Our loved ones may feel frustrated when we’re truly falling down a deep hole. They know they can’t fix our problems for us and eventually they have to set boundaries with our reassurance seeking and independence. I do recommend taking small steps to address anxiety in a CBT-like style if you and your therapist can, and continuing mind-body work. So many of us have been there and get it.
Hi Dorado. Is that link to the excellent article about Dr Michael Moskowitz's recovery from pain? If so, unfortunately, you now have to pay to see it (leastways I'm in the UK and a window pops up telling me that, but it may, of course, be different for those in other parts of the world). All is not lost though as you can see Dr M's story in the 'look inside'/preview on the UK amazon website of Norman Doidge's book https://www.amazon.co.uk/Brains-Way...swatch_0?_encoding=UTF8&qid=1598258241&sr=8-1. Dr M's story is chapter 1 in the book and, fortunately, the whole of chapter 1 is shown. (Hopefully, those in the States and elsewhere will also be able see the first chapter on the UK amazon website...It doesn't seem to be available as a preview on the US amazon site, but then maybe I can't see it as I'm in the UK!
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