What else is there - Seriously

[eskimoeskimo]

Eskimo,
I’ve been reading threads here on this forum to see what the trajectory of treatment is for stress illness. As fate would have it, my own son fell ill as a college freshman, and I had a devil of a time persuading him to understand his own nerves to the point that he could function. He has miles to go to normal, but if he has the will to see it through, he’ll win.

I actually just joined this forum today to speak directly to you. I don’t want to get into a 150 email reassurance race with Dr. Schubiner, so I’ll be brief. You have had all the medical imaging known to science, have tried drug treatments, talk therapy, and many other therapies, and still you are stuck, unable to work or function because you have a ruminating suspicion that you’re damaging your neck somehow. Or you substitute a thought that you have damaged your neck irreparably, so there isn’t any hope in living with a mild neck pain, as you describe it. Do I have that correct?

There are countless people here and otherwise scattered that struggle exactly as you do, but they hold their jobs, raise families, travel, and live a full life that they can be proud of. I hope this for you as well as anyone else who can read this. I know what I robbed myself and my family of while I was suffering from my own creation. Once I was sick of holding onto my own story and arguing with those who spelled it out for me clearly, everything changed. You must now choose to live and accept life’s unpredictability, suffering, grief, triumph, loss, all of it — or cower at your imagined doom (nothing at all, in fact) in your parents’ house. Yes, that’s a challenge. I hope you take it on and stop sniveling.

You are a bright person. You have learned to communicate well. But you haven’t learned yet to look back at your own illogic and stop it. Here is an example: Your neck hurts and you are afraid that if you do certain things it will damage it further, yet in 10 YEARS the imagined dragon hasn’t appeared, and you tell yourself it’s because of your seeking shelter away from work, social gatherings, etc. This behavior has, you imagine, saved you from your feared outcome, yet in reality it has ruined your entire reputation and relationships in the process. This is textbook anxiety behavior, and so long as you behave anxiously, you perpetuate anxiety symptoms and suffering. You are afraid of your own thoughts. Not your pain, but what you THINK it might mean or lead to. That’s it. Nothing more to understand.

That’s where my suggestion comes in. Recovery International is still in existence, and I believe you would benefit greatly from participation in a group meeting. There you will meet people whose sufferings will amaze you, as will their determination to achieve a full life despite them. You can download Abraham Low’s works online. I don’t know where you live, but most likely there is a local group or two active near you. Please visit and consider joining.

P.S. Please fight the urge to respond with, “But I’ve already done that.” You haven’t or you wouldn’t be here. You might not be cured, but you’d be a functioning adult. That’s the first step. The rest comes when your life is compelling enough to stop thinking about your body. I wish you the best.

I'm honored that you should enter the chat Hillbilly. Honestly it's like hearing from a celebrity. I can't tell you how many times I've read your summary posts to steel my nerves and point me in the right direction (though I recognize that rereading might be contra your recommendations in those very posts).

I'm not sure what to say because what I want to say you asked me not to say. So instead I'll just try to absorb your message. I hope that you're right. I certainly want to believe that you are.

Just to clarify slightly, I'm not much afraid of damaging my neck via activity. It's more the latter ... not sure how to cope with constant pain - whatever the cause - and I find the symptom extremely distressing and distracting. If I'm afraid of damage, it's more so the fear of all the damage that constant stress is doing to my brain, my heart, my health generally. And my appearance actually, but that's a whole other can of worms.

Anyways I'll stop there because I don't want to start reflexively litigating. I'll just sit with what you said.

Thank you

 

[eskimoeskimo]

Interesting, I find laundry to be pretty straightforward and head-clearing.

Me too, I find repetitive chores and hygiene stuff to be pleasantly diverting

 

[eskimoeskimo]

I think commiting oneself to being or becoming, a self-supportive, responsible adult is the highest goal any of us can attain. I’m still trying to get there.

I've certainly never achieved that. I've tried and tried ... but I won't make excuses

 

[eskimoeskimo]

Honestly though, it's not like I've been living in my parents' basement for 10 years. I've had full time jobs, travelled all over the world, and earned an Ivy League degree. What else is 'living your life' supposed to look like?

 

[Balsa11]

I'm honored that you should enter the chat Hillbilly. Honestly it's like hearing from a celebrity. I can't tell you how many times I've read your summary posts to steel my nerves and point me in the right direction (though I recognize that rereading might be contra your recommendations in those very posts).

I'm not sure what to say because what I want to say you asked me not to say. So instead I'll just try to absorb your message. I hope that you're right. I certainly want to believe that you are.

Just to clarify slightly, I'm not much afraid of damaging my neck via activity. It's more the latter ... not sure how to cope with constant pain - whatever the cause - and I find the symptom extremely distressing and distracting. If I'm afraid of damage, it's more so the fear of all the damage that constant stress is doing to my brain, my heart, my health generally. And my appearance actually, but that's a whole other can of worms.

Anyways I'll stop there because I don't want to start reflexively litigating. I'll just sit with what you said.

Thank you

Same, I fear the damage too. Then it's easy to get caught up in catastrophizing and self blame, which increases stress and symptoms.

 

[Marls]

Honestly though, it's not like I've been living in my parents' basement for 10 years. I've had full time jobs, travelled all over the world, and earned an Ivy League degree. What else is 'living your life' supposed to look like?

Hey Eskimo, just for interest, have you done much charity work? As in hard, full on, stay on your feet, type stuff. Really good for the soul I can assure you and you’ll know what ‘living your life’ is about when you give a bit of it to others, cheers marls

 

[Tms_joe]

Honestly though, it's not like I've been living in my parents' basement for 10 years. I've had full time jobs, travelled all over the world, and earned an Ivy League degree. What else is 'living your life' supposed to look like?

Living a life without fear where you don’t wake up with that feeling of dread.

 

[Hillbilly]

Well Hillbilly, you might be sorry you asked. Lol. According to all my test results, including neurologists, MRI’s, etc I’m fine, but for some reason I still can’t shake my symptoms and sensations. It has kind of gotten to the embarrassing stage, as I feel they should have dissipated by now given all that I know about mind/body symptoms. My mindset is changing, in that I am trying to be more indifferent, and that is a good thing. Having weird symptoms has caused me a lot of distress, but thankfully I have found people that have had symptoms similar to mine that actually got better and that has helped me. Thank you for asking.
How are you doing?

Tgirl, thanks for the update. If all of your tests came back normal, what do you believe is causing your symptoms? All my tests came back normal as well. I didn't believe it when people told me I was perfectly healthy because I felt so bad every minute of every day. But that is 100% understandable in the circumstances. Once I really understood that my symptoms were just stress, they began to diminish. They died away over a period of months, not hours. This was after I had full confidence that I would get better. If you aren't receiving that reassurance from being here and seeking only that information, you are prolonging your illness. I did that to myself. Please don't make that mistake. It will happen, so don't be dismayed.

 

[tgirl]

Tgirl, thanks for the update. If all of your tests came back normal, what do you believe is causing your symptoms? All my tests came back normal as well. I didn't believe it when people told me I was perfectly healthy because I felt so bad every minute of every day. But that is 100% understandable in the circumstances. Once I really understood that my symptoms were just stress, they began to diminish. They died away over a period of months, not hours. This was after I had full confidence that I would get better. If you aren't receiving that reassurance from being here and seeking only that information, you are prolonging your illness. I did that to myself. Please don't make that mistake. It will happen, so don't be dismayed.

Hillbilly, I ask myself that question (what do I think is causing them) all the time - maybe too often. I’m a ruminator. Even my doctor says I’ve been in and out of his office for years with symptoms that just ‘disappeared’. Draining for sure. I know that my CNS is always revved up, and probably has been since I was a kid. Also, self doubt, for me is a killer. One day I feel I am absolutely going to beat this mind/body #&@$, and the next day I’m planning my funeral. Lol.

Just a question, what do you mean about ‘seeking only that information’ ?

Thanks for explaining how you got better.

Hillbilly, I hope you are doing well!

 

[Hillbilly]

Ah Eskimo,

Thanks for engaging. I was so drawn to this thread, I suppose, because you appear to be a skeptical sort. It reminded me of myself. If you have read even once my posts on the old forum, you're well aware that I attempted to mount Rocinante and joust all the TMS windmills on the internet. I yelled bullshit at every turn. I just wanted a straight answer and couldn't find it for all the fear of stepping on the theory and theoretician. I've kind of mellowed a bit since then. I'm 54 and well past the need to find any answers to nervous illness questions. You owe no one anything, so you are free to find your own way through this mess. And believe me when I tell you I understand. I'm afraid to say that as time goes by you are less likely to have the type of person show up in your life that I did who absolutely would not hear my whines and excuses. She only wanted to hear my reports of accomplishments. This is desperately needed in your case. Mom and Dad won't do it. Too much history. You need a calm, dispassionate voice. I hope you don't mind my frankness.

In your responses on this thread, it appears that you might simply be suffering from information overload. You are getting advice from too many people, have read too many books, seen too many doctors and therapists, and so you now have all these arrows pointing in disparate directions. That's sort of the nature of forums. How you found this place is proof enough for me that you are here among fellow TMSers, OCDers, anxiety disorder sufferers, or whatever label you'll accept. So, instead of going through all the components of theories and treatments you have tossed for inanity, ineffectiveness or just plain moonbattery, what do you think is the most plausible reason that a person's neck aches 24 hours a day, 7 days a week for 10 years? You might be one of the brightest people I have corresponded with, and yet it seems you have missed entirely the most fundamental, foundational, basic point: stress causes soft tissue tension and pain. It's listed as a primary symptom of GAD in the last DSM volume I consulted. Perhaps your analytical mind sees too many possibilities. Scan results negative for tumors, fractures, or other anomalies? You're weary of making excuses and trying to explain. So stop.

But why doesn't the pain go away? Easy answer. It is the sum of all the stress you've put on yourself to explain it, analyze it, glorify it, use it as an identity for a decade. It has its own zip code and gravitational pull. If stress causes your neck to get stiff, how does adding unrelenting stress BECAUSE your neck hurts make it go away? You seem singularly focused only on getting your pain to go away as if reading a book or attending a lecture has anything to do with it. This process is about identifying the absurd fears in your life that you use to erect limitations on your behavior and eradicating them. This is all you need to know. Your body is systemically affected by stress, so if you manage to calm your ruminations about your neck, don't be surprised if you notice your knee or elbow or something else hurts. Treat it mentally the same. It's all nonsense.

I see a few struggling people have grabbed ahold of your doubts and treatment failures and started a chorus of harumphs, which are in no way helpful to anyone. If you really, really want to get better, join Recovery, find an accountability partner, preferably a former patient who is willing to spend time listening to your situation and advising you. If anyone here is willing, that will do fine. But you can't dilute hopeful, inspiring thoughts with wallowing with the woeful. It won't work. Understanding one sentence will. Your symptoms are not dangerous. Have a great recovery and send me a message when it's over.

 

[Hillbilly]

Hillbilly, I ask myself that question (what do I think is causing them) all the time - maybe too often. I’m a ruminator. Even my doctor says I’ve been in and out of his office for years with symptoms that just ‘disappeared’. Draining for sure. I know that my CNS is always revved up, and probably has been since I was a kid. Also, self doubt, for me is a killer. One day I feel I am absolutely going to beat this mind/body #&@$, and the next day I’m planning my funeral. Lol.

Just a question, what do you mean about ‘seeking only that information’ ?

Thanks for explaining how you got better.

Hillbilly, I hope you are doing well!

Only seek information that points you in the direction of living a normal, pain-and-other-symptom-free life. Eschew all others. There are many more malingerers out there and here than people who have found their way back to full living. I strongly advise corresponding only with cured or nearly cured people. Reading other people's woes can put you in a doubtful place. There is no other explanation for your symptoms but benign responses to stress. Be happy!

 

[tgirl]

Only seek information that points you in the direction of living a normal, pain-and-other-symptom-free life. Eschew all others. There are many more malingerers out there and here than people who have found their way back to full living. I strongly advise corresponding only with cured or nearly cured people. Reading other people's woes can put you in a doubtful place. There is no other explanation for your symptoms but benign responses to stress. Be happy!

I whole heartedly agree that only corresponding with people who are healing or have healed is imperative. Unfortunately, while doing this I sometimes inadvertently come across people with devastating symptoms that send me down the rabbit hole. I have to be very careful of this. I’ll add one more thing, as it feels like it’s getting it off my chest. My symptoms first began during a flu, but went away twice for a couple of years each time. The neurologists don’t seem to find this important as they can’t find any damage, but it has always haunted me. I know I have to let this go because it is an area of fear for me. Thank you for responding Hillbilly. You’re a reassuring guy. Be well!

 

[Hillbilly]

Hey Eskimo, just for interest, have you done much charity work? As in hard, full on, stay on your feet, type stuff. Really good for the soul I can assure you and you’ll know what ‘living your life’ is about when you give a bit of it to others, cheers marls

I second that recommendation. Do something for someone else. The man who has no shoes stops feeling sorry for himself when he meets a man who has no feet.

 

[Hillbilly]

I whole heartedly agree that only corresponding with people who are healing or have healed is imperative. Unfortunately, while doing this I sometimes inadvertently come across people with devastating symptoms that send me down the rabbit hole. I have to be very careful of this. I’ll add one more thing, as it feels like it’s getting it off my chest. My symptoms first began during a flu, but went away twice for a couple of years each time. The neurologists don’t seem to find this important as they can’t find any damage, but it has always haunted me. I know I have to let this go because it is an area of fear for me. Thank you for responding Hillbilly. You’re a reassuring guy. Be well!

"Haunted" you? Do you mean buried a suspicion deep in your brain that your lungs are permanently damaged? So all of your visits to the doctor are related to your lungs? Do you see how absurd this is? Listen to your neurologist. There are people who love you who want you back.

 

[tgirl]

"Haunted" you? Do you mean buried a suspicion deep in your brain that your lungs are permanently damaged? So all of your visits to the doctor are related to your lungs? Do you see how absurd this is? Listen to your neurologist. There are people who love you who want you back.

Thanks again Hillbilly. It’s nerve endings on my legs and not my lungs, but I get your point. I really do. Letting go of my layers of fear and preoccupation with bodily sensations is paramount for me. As you can see, I haven’t truly done that yet.

 

[Hillbilly]

Thanks again Hillbilly. It’s nerve endings on my legs and not my lungs, but I get your point. I really do. Letting go of my layers of fear and preoccupation with bodily sensations is paramount for me. As you can see, I haven’t truly done that yet.

Apologies. I've never heard of such from flu. Are you bothered by symptoms other than your legs? Before my back pain started, I had a numbness in my left leg near my hip that lasted a good while. I had so many symptoms it really is difficult to remember them all. I had a brain MRI only after I insisted. This was, I was certain, the beginning of MS. My sister has it. You wouldn't know by looking at her, but she's had it since college. And she's never turned into a hypochondriac over it. That one spot in the family was reserved for me.

 

[tgirl]

Apologies. I've never heard of such from flu. Are you bothered by symptoms other than your legs? Before my back pain started, I had a numbness in my left leg near my hip that lasted a good while. I had so many symptoms it really is difficult to remember them all. I had a brain MRI only after I insisted. This was, I was certain, the beginning of MS. My sister has it. You wouldn't know by looking at her, but she's had it since college. And she's never turned into a hypochondriac over it. That one spot in the family was reserved for me.

I can relate to you. Prior to this nerve sensitivity I had light headedness for quite awhile. Honestly, I’ve been to neurologists throughout my life since I was in my twenties. I always thought I had MS. Nope, no MS. I’ve been tested to no end. One neurologist said they’d just about run out of tests and he told his secretary that I wasn’t coming back. My doctor feels I obsess about sensations. Like you I’ve had many odd symptoms that always went away. As my husband says I’m the healthiest sick person he’s ever met. I definitely have a ramped up nervous system, and I’d be lying if I said these symptoms don’t scare me.

Why do you think your leg, near your hip was numb?

 

[Hillbilly]

I can relate to you. Prior to this nerve sensitivity I had light headedness for quite awhile. Honestly, I’ve been to neurologists throughout my life since I was in my twenties. I always thought I had MS. Nope, no MS. I’ve been tested to no end. One neurologist said they’d just about run out of tests and he told his secretary that I wasn’t coming back. My doctor feels I obsess about sensations. Like you I’ve had many odd symptoms that always went away. As my husband says I’m the healthiest sick person he’s ever met. I definitely have a ramped up nervous system, and I’d be lying if I said these symptoms don’t scare me.

Why do you think your leg, near your hip was numb?

At the time my leg went numb I suspected I was in the middle of a nervous collapse, but the symptoms made me suspicious of something else. I was wrong about that and every other symptom I let get my attention and stayed in a state of alarm. Sounds like you've been dealing with this for a very long time. I'm sorry to hear that. But as Claire Weekes stated, "You can recover regardless of how long you have suffered." I hope you find a way to let go of your symptoms and move past them.

 

[tgirl]

At the time my leg went numb I suspected I was in the middle of a nervous collapse, but the symptoms made me suspicious of something else. I was wrong about that and every other symptom I let get my attention and stayed in a state of alarm. Sounds like you've been dealing with this for a very long time. I'm sorry to hear that. But as Claire Weekes stated, "You can recover regardless of how long you have suffered." I hope you find a way to let go of your symptoms and move past them.

Thanks Hillbilly (love the name by the way), and for some reason, recently I have felt a shift in how I feel and what I believe about getting a grip on this mind/body stuff. I do believe I will be fine, but I will be careful not to fall to these depths again in the future. Having to make some difficult life decisions probably isn’t helping me either. And as you mentioned, Claire Weekes said a person can recover no matter how long they’ve been dealing with this.
I appreciate all your input, and I can see you certainly understand how nerve wracking this can be.

Stay well Hillbilly.

 

[Mark1122]

Dr. Low advocated attacking your symptoms (all of them are just stress symptoms magnified), one at a time to lesson their hold on your attention. Fatigue was the most common. He gives a brilliant talk about what was known in his time as "neurasthenia" being a made-up label that harms patients because it can lead them to believe they have something incurable. Today neurasthenia would be called Chronic Fatigue Syndrome or Fibromyalgia. I'm sure you are familiar with the list of symptoms associated with those labels also. Perhaps even been given the diagnosis. It's nonsense. You can refute your fatigue symptom more easily than pain, so attack it first. Just stay on your feet for longer periods. Go for walks if jogging brings on strong palpitations or pain, just leisurely stroll anytime you feel like you are about to collapse. You'll see it is only a feeling and that you actually have full strength. If you haven't already read it, grab a copy of Dr. Low's Mental Health Through Will Training. It is literally full of practical advice on how to combat your symptoms in ways that refute that they mean doom to come if you don't obey your alarm.

Hi thanks a lot,

I have been busy living the past days but its been tough. Today i keep falling asleep with a headache i just cant stay awake and my pain is intense as well. I find this exhaustion the hardest part to deal with. I will try to follow your advice but today i am a bit depressed and have a hard time staying positive. It's so depressing to be exhausted all the time.

The thing is with the jogging advice, once i start to get panicy i cant really stop it and most of the time get a full blown panic attack where i cant help to stop thinking im having a heart attack or something. Don't know how to deal with that. Even if i keep telling myself ive had it many times and il be okay. It wont go away.

The hardest part for me is that ever since finding out about TMS like 3-4 years ago my symptoms got 2-3x worse which is a lot. Somewhere im scared it is because i learned about TMS making me ignore my symptoms and making them worse because i dont listen to my body. Because for me it all starts with computer activity and mobile and other repetetive actions. Also i cant carry heavy things anymore etc for too long. My exhaustion just seems to be because of my increased pain. I mean we create exhaustion when we are in pain to force us to rest right? and i guess u will make adrenaline to stay awake and that can cause anxiety?

I don't have this fear all the time, only when i cant follow the TMS route for a while because i couldnt take it anymore for a while. Then after a few weeks i get back to TMS approach until it gets too much to handle again and im back to being depressed and abandoning the TMS approach again.