2. My Success Story

Forest a great video and success story- you go bro

 

Forest, I was particularly struck by your statement that you don't have any fear anymore. That was key for me as well. My migraines were something to be feared, so when one started I had become stuck in an "Oh no! Not this again!" loop. It was only when I could say, "Really? Is that the best you can do?" that I broke the fear cycle.
Many, many thanks for all of the hours you put in maintaining the TMS wiki!!!

 

I noticed this with myself. One of my symptoms is fatigue. My feeling of fatigue kept me from doing my hobbies. Yet I felt okay enough to work full time and do chores at home.
I have been trying just doing stuff even when I did not feel up to it and it has been working pretty good for me. The fatigue seems to be going away.

 

Forest how have you been keeping up with not fearing the pain? Conditioning plays a huge role in this and I was wondering what kind of mentality you finally had that made you take that leap of faith and go the TMS route even though doctors gave you all those diagnoses. What made you finally say Im not going to fear this anymore and push through it no matter how bad the pain got?

 

So as you began to resume activity your symptoms did get worse but you pursued on? Were you frightened that they had gotten worse? Another question I wanted to ask you is that Im sure you started developing expectations of getting pain in certain situations. After I started getting eye tension in the mornings about 2 years ago I think i began to start expecting that it was going to happen, so it does. If you read any information on anxiety this is called "scanning, testing and monitoring". You wake up and subconsciously through developed habit you instantly start checking to see if your condition is better or not, or in my case if the tension is gone. When it isn't, you get discouraged like what you're doing is not working. Did you have to overcome expectations of pain in situations and how did you do this? Particularly Im interested in how to overcome the morning symptoms I get because i know they don't make any sense whatsoever. I shouldn't be waking up with eyestrain and tension in my eyes each morning, I know this is conditioning and a learned habit.

 

hey forest just wondering if you had a chance to read that last post, really interested in hearing your feedback

thanks

alex

 

Heya, dabatross, sorry for the delay. I'm going to try to answer your post above and your PM here as well. I try to avoid answering questions like this in private messages because if I can answer them on the forum, more people can read them. I'm happy to help in any way that I can, though.

No problem there, I just PMed you because I thought it would be the best way to get in touch with you. Didn’t know if you would get a notification if I replied to the thread or not.

When I read what you've written, I sense a lot of fear and anxiety. If you sense it too, I think it's worthwhile to get to know it. Don't give it too much attention, because that only feeds it, but at least greet it and become aware of its presence. Then, perhaps recognize that while it may be trying to protect you, it is only making things worse and stop giving it the time of day. Then start observing your anxiety all of the time and letting it know that you appreciate the thought but gently requesting that it back off. For me it works to be dismissive of the anxiety and remind myself that the anxiety itself is just another TMS symptom and all part of the TMS syndrome.

I’m really starting to realize this that my worry has never helped me. Maybe in the beginning I thought that it was going to save me from future pain and suffering but at this point where I don’t have anything to fear anymore, its not serving me a purpose. It’s a natural instinct that I find very hard to control. Its like telling my brain “no im not listening to you” when its telling me im in danger and that I need to solve this, fix this, investigate these fears that I have otherwise Im going to get worse. Im trying to be dismissive now, and Im not trying to be a pessimist but I don’t expect this to be easy to do. The longest ive gone without significantly worrying/indulging in my fears is about a week… a week in 8 years. This is really the only thing I have left to try.


I don't mean to assume that you have that anxious part of yourself, but the symptom is bothering your so much that I wonder if you do. I only mention it because I think that many TMSers are very anxious folks, and that overcoming that is key to healing for many. Many people seek reassurance on the forum, but I think it has to come from the inside. Like everything in mind body healing, it starts with the mind and slowly works its way down to the body. The first step is soothing one's own mind. You have to "get your head right."
In my opinion, worry is the root cause in TMS. Everybody Ive seen recover from TMS/anxiety disorder had to eliminate their fear of their symptoms even though it felt wrong instinctually. That’s probably the hardest thing to do.. go against what your brain is telling you.

Either way, I'm afraid I don't remember parts of it as well as I would like. I remember that back before I lost my fear (which was the core of TMS healing for me), I used to obsess about whether activity made my symptoms worse. This was because my first diagnosis was "Repetitive Strain Injury." My doctors told me that I had brought my symptoms on myself via "repetitive strain" and that the only way to heal them was to cut the repetitive strain out. In other words, no typing, mousing, handwriting, or maintaining certain static postures like working at a desk or counter.

This is very difficult for me too, and even after getting pretty much 100% confirmation from my doctor that my eyes are fine and Im ok (saw him twice about this same thing in the past 3 months because I was scared), those fears still come up that I’ve heard in the past like “too much computer is causing your eyestrain, you have to stay away, stop using it, nearwork is causing your eyestrain” and those fears stick in your mind. They stick with you even though I know they’re not true. I have evidence that they’re not true.. an evidence sheet 30 items long now. I go for days without hardly using any screens or devices whatsoever and have the same tension in my eyes so that can’t possibly be the cause. Even after eliminating what my doctor called convergence insufficiency, I still have the same pain/tension so that couldn’t have possibly been the cause in the first place. This was again a normal finding that I’ve had for a long time but only discovered because I started worrying about my eyes and became symptomatic.

Later the diagnoses I received shifted more toward systematic diagnoses such as fibromyalgia or myofascial pain syndrome. My doctors stopped connecting my symptoms to activity as much, but at this point I had observed it so closely for so long that I was convinced of that association between symptoms and pain. In hindsight, this looks crazy, but like I said at the beginning of the post, anxiety and stress are often part of TMSing, leading many of us to become quite obsessive in our focus on our bodies.

Definitely, my diagnoses changed over the years too. At first it was just astigmatism, then it was farsightedness that was causing it, then it was my eyes were too far apart, then my eyes weren’t teaming properly, then my accommodative system wasn’t up to par, but none of this was true because I tried all of it and I fixed the “problems” that were found but still had the same pain. I have become completely obsessed with my eyes over the last 5 years, and my brain always wants me to try to figure out why they’re still hurting, try to solve it and fix it by worrying. I don’t think anxiety and stress are just part of TMS, they are TMS. In every case where somebody wrote a success story that they got better, they eliminated their fear of the pain. Your success story, Steve’s, Balto and Hillbilly on tmshelp, all eliminated the fear and got better.. but that is very difficult to do when your brain is saying “YOU’RE IN DANGER!! Investigate this fear and prove it wrong”. In reality all worrying does for me is give me the motivation to investigate my fears so I calm my anxiety down for a short period but then it just comes back.


So how did this play out with me? As I mentioned in my video, my friend Kim showed me some TMS stories that she had found online of people who seemed more like me than anyone I had seen before. They had cured themselves by resuming physical activity, so I decided to try the same thing.

I have to give you a lot of credit for this because I know how hard it is to take this leap of faith. I’ve been told numerous times to take the leap of faith and I’m still scared to do it but it’s the only thing I have left… the only thing that makes sense.

For a long time, I had carefully observed my symptoms, even recording them in "RSI Journals." I now think that that was a crazy strategy that only fed my obsession with my symptoms, but I also realize that I was under a tremendous amount of stress, just wanting to get a job and feel financially independent. I was worried about ever being able to get keep a job or get married and have a family because I couldn't use a computer, couldn't write, couldn't walk much, couldn't maintain static postures like working at a table or working at a counter (it led to flare-ups in neck and upper back symptoms diagnosed as myofascial pain syndrome). The first lessons that we learn are the deepest, and when I was told at age 16 that my "injuries" were caused by my own "repetitive" activity (Repetitive Strain Injury), it really stuck with me. Several years later, my specialist told me that I had damaged my body enough that I could probably never be a programmer. It scared me because I couldn't think of anything else that I felt good at and my father was telling me that I couldn't stay at home if I didn't have a job. How would I avoid damaging myself further?

I relate to this on many levels, I know what that feels like to have the doctor tell you that you’re doomed to pain. My doctor told me my eyes were too far apart and that I would just have to learn to live with it, patted me on my back and that was it. I now know that’s complete hogwash but those things stick with you, and especially when Im trying to go down this path of not worrying anymore those fears can pop up and really make you want to investigate them again. The what if fears come back like “what if he was right? What if I screwed up that test? What if im the only one that can’t get better? What if, what if what if.

Im trying to take this leap of faith and I’m having the same fear as you. I’m worried that if I stop indulging in my fears and prevent myself from worrying anymore, Im going to get worse, and then my catastrophic fears come out like “maybe then I’ll have to quit my job or I’ll get fired, I’ll have to go on disability, I’ll lose my house, I wont be able to pay for my family”. It’s clear that we both have gone through these same thoughts.

At that point I was just exhausted. My TMS had been going on for 18 years and I was tired of fighting it. To me, the most natural term for it was "crazy-bad RSI." I just decided to call its bluff.

This takes a lot of guts, something I’m truly trying to work on now. I’ve been in pain for 8 years and Im at the point of calling it’s bluff. What do I have to lose? I’ve been told countless times that worry is causing my symptoms but I still have the urge to fear and worry. I think if I don’t worry that things will get worse but I have no idea if this is true and it can’t be. If I’ve done everything that can be done physically for this, I must try the opposite and not fear the pain anymore no matter how much my brain wants me to. Much easier said than done.

Was I scared? Of course. But I did try something that helped me and that might help you. Specifically, I did activities that I figured a doctor would tell me would be safe. See, at that point, I was out in front of my doctors. I had been carefully observing how I had increases in symptoms that might stretch on for days, weeks or months if I increased my activity levels. I was the only one who had access to that data, so I was imposing more limits on my activity than the doctors were.
So, for example, I had had knee pain in my right knee for several years and was restricting my activity level to allow that to heal. I had stopped walking to work, and I figured that no doctor would tell me that it was unsafe to walk to work, so I just started walking again.

Yes im very scared, but I feel like it’s the only option I have left is to stop this worry “habit” or what I call obsession. It’s a complete obsession and fear of the symptoms, what may happen with them, etc. My doctor said my eyes are fine and that he now believes my pain is caused by anxiety too, when before he said that he wanted to rule out all findings before committing to that statement. Even after hearing that, I felt better for a short period but then just started worrying all over again, one fear replacing another.

If I remember correctly, my pain levels in my knee increased, but not so much, and not for so long. Perhaps it was my new TMS awareness. Perhaps it was Kim's support. Perhaps I was just tired of having TMS.

Yes im extremely tired of having TMS, and im sick and tired of worrying. The only thing that keeps my in worry mode is fear, but again I ask myself what do I have to lose? The only thing I can put on the “lose” column is the possibility of getting worse, but theres no evidence of that and it’s the only thing I haven’t tried for long enough to see if it actually works.

Whatever it was, my knee didn't get worse, so I kept walking to work. I think that the next activity I decided to take back was typing. I was barely typing at all at that point, because whenever I did type, I had a hot and prickly pain that slowly built up in the top surface of my fingers and hand and then stuck with me for several hours afterward. Worse, after that, my fingers would remain sensitive for several days or even more, afterward. If I typed during this period, the symptoms would come on faster and would stay longer, as would the period of greater sensitivity. I thought that all of this sensitivity to typing was due to typing that I had done in the previous 2 decades, when I had felt symptoms and ignored them.

I’ve had these fears too that “maybe the vision therapy I did a couple years ago damaged my eyes or maybe I’m feeling the lingering effects of eyestrain from months or years ago.”

Now I know that this explanation was complete hogwash and that it was just simple TMS, which is just a part of life. It's perfectly harmless, and I can just ignore the pain. Various symptoms may pop up, but they are just the symptom imperative, and if I ignore them and follow the simple rules laid out by Dr. Sarno in Healing Back Pain, I'll be fine and have a much happier life.

Again, takes a lot of courage to do this. Im hoping to get support in this process of trying to not worry about my symptoms anymore. Might sound ridiculous but its one of the hardest things I’ve ever had to do.

Being a computer guy, I decided to get back to typing. I forget how much I did, but I probably followed the same rule as walking: I chose a level of typing that a doctor would probably be okay with (they might not say that they were okay with it, out of caution, but deep in their hearts they would know it was okay), but that would allow me to decisively reject the hypothesis that the damage was real. That is what I did and it worked. After a period of time, the symptoms stopped increasing so much and actually began to subside. (I forget how long it took, but it doesn't matter, because everyone is different and if you start comparing your own recovery to mine that is the TMS trying to undermine you. Doing that is the absolute worst thing you can do. Instead, you must teach yourself outcome independence.) Now, as you can tell, I type all I want.

Steve told me to do this as well, take baby steps and prove to yourself that by not worrying you’re not going to get worse. I need that confidence in my soul that Im not going to get worse by not fearing my symptoms anymore, because inside it truly feels like if I worry about the pain I can somehow stop it from getting worse. In your case it looks like you challenged your symptoms and like you said “called its bluff” and that’s what Im trying to do now.

The next target I think I worked on was handwriting. Whenever I wrote, even as little as a paragraph, I would get a writers cramp. The more I wrote, the more it hurt, and, worse, the more I wrote the more it hurt, so the more I had to limit my activities in order to get the flare-up of symptoms to subside. Now I write whenever I want.

A great achievement, did you do the same strategies here by slowly proving to yourself that writing wouldn’t make your hands get worse? Did you start writing just a tiny bit, and then a little more the next day, etc.?

Was I scared? Yes, absolutely. I think that for some people TMS healing will always be a little bit like the following movie scene.

Alan Gordon showed me this movie scene too when I talked to him, and its completely true. Have to take that leap of faith, as worriers and anxious people that’s one of the hardest things to do. When you don’t have that full confidence or you’re still scared that things could get worse, I become so reluctant to just say “Im not doing this anymore, Im just going to do the opposite of my instincts and not fear this and see what happens..

In particular, if you decide to do an experiment like I did, calling my symptoms' bluffs, choose the experiment carefully so that you will have no doubt afterward. You might have to live with the symptoms for quite a long time, like Steve did, while you ignore them. That's fine. Just focus on living your life and feed them with as little attention as possible. Realize that you could go on ignoring them forever if you had to, so that you don't need to fear them. Eventually you want to get to the point where you don't even care how long it takes. That may be very hard to do, but you have to get to the point where you are at peace about your symptoms. If you aren't a peace, then you are focusing on your body, and that is exactly what the TMS wants.

Absolutely right, really taking this to heart. On anxietycentre they call this “fighting with anxiety disorder or trying to solve your condition” and that is worry in disguise. Like Claire weekes says you have to be accepting in order to get over this, the more you resist it the more stressed you become and the more you worry about why you’re not getting better. So when I wake up in the morning with eye tension, and my first instinct says “why do I have tension in my eyes in the morning? I haven’t even done anything with them?” im trying a different approach now. Instead of trying to analyze that, I just say its because of my stress and anxiety (TMS) and try to ignore it the best I can. I do my recovery strategies and try to contain my fear as much as possible.

And fix the anxiety first, because no one can heal when part of their brain is panicking. Anxiety originates in primitive parts of the brain (the limbic system - most notably the amygdala) and it shuts down more advanced parts of the brain (most notably the prefrontal cortex (PFC)) that you need in order to guide you through TMS healing. I have a good friend, JanATheCPA, who found Claire Weekes' book, Hope and Help For Your Nervesto be very helpful, but professional help could work as well, perhaps from a professional health psychologist. If medication comes up, consider the following passage from Dr. Sarno's most recent book, The Divided Mind, about the roles of various practitioners in his treatment program:

Really interesting that you bring this up because I am seeing a psychologist right now, shes actually really good and understands this stuff, and at first I didn’t want to go back on SSRI medication because for one my worry habit makes me worry about the medication itself, even though its there to help me. But in the end my head is not in the right place right now. Thank you for posting this quote from Sarno. I never knew he said it was ok to use medication to help get your mindset right so you can successfully do the recovery work. The state I’m in right now is really hindering me because Im always worrying and its hard to contain myself from doing so.

The Divided Mind
I have said elsewhere that it is essential for patient acceptance that a psychosomatic diagnosis be made by a physician. It is equally important that the physician and psychotherapist remain in communication throughout the course of treatment. The responsibilities are clearly delineated: the physician’s role is to educate patients on the nature of the psychosomatic process, essential for successful treatment whether or not psychotherapy is prescribed, and precedes the referral. The physician manages physical problems and answers questions that may arise during the course of psychotherapy. The psychologist, of course, has the major responsibility of diagnosing and treating the psychodynamics responsible for symptoms. The psychologist also determines whether psychoactive medication is necessary as an adjunct to therapy and refers the patient to a psychopharmacologist should that be the case. [bold added]


MatthewNJ, a friend of mine and a Sarno patient himself was prescribed painkillers by Dr. Sarno periodically, not because they fixed the underlying problem, but so that he could get his head in the right place and do the TMS work that would fix the underlying problem. If psychoactive medications are good enough for Dr. Sarno, then they are good enough for me. The first step is always to get your head in the right place. I think it's no surprise that a number of antidepressants have been shown to be useful for various chronic pain conditions that are actually TMS. Only understanding the real cause will lead to a long term cure, but sometimes you just need to cool things down for a little while so that you can get your bearings and break the cycle of fear, unconscious rage, and pain.
Again you’re absolutely right, I’ve been resistant of taking a medication to help contain my fears but now Im ready to do that again. Its very difficult to do the work for TMS to get better if you’re constantly going backwards due to uncontained worry and this is where these medications help. You’re the 4-5th person that’s said I should possibly get on an antidepressant to help calm things down so Im not freaking out every day about my eyestrain. And again, that’s not the cure to this problem but it sure as hell can help you get on the right path so you’re not going backwards every day and you start moving forwards with progress instead.
Thanks Forest for posting this, I really wanted to respond to every note you had in here because it was really great info and Im going to print this off as well. Really trying to take this to heart and Im going to be doing my best to stop myself from worrying when the fear of pain comes up and “what if” enters my mind.

 

Thanks so much Forest - like you say, it's such a great comfort to hear other people's stories. you've given me hope. Thank you

 

The key is to get going, leave your troubles behind and get physical!!!

 

hey forest, sorry my response to your post above was so long just wanted to respond to each of your points because i think they are all really important. i know you're busy did you by chance see it? also the other question i want to ask is im calling symptoms bluff right now by stopping my worry about them. when i do this the symptom increases, and this is where in the past i would go back to worrying and thinking there must be another physical cause because why would my eye tension increase by stopping the worry? you said that the pain got worse for you when you stopped giving in to the worry and resumed physical activity, so should i be at all hesitant about moving forward even though my symptoms increase?

i think alan gordon calls this the extinction burst, but how long does it last? it really tries to pull you back into the fear/pain/fear cycle when you stop feeding your worry and anxiety and the pain rises. it makes you think you're doing something wrong and that you need to start looking elsewhere to see what is really wrong with you.. even though there isn't anything else i can do at this point.

 

hey forest just wondering if you had a chance to read the above post, i know you have a ton that you read all the time so just curious