A Physician's TMS story - RSI, Hyperacusis and much more.....

Beezy,
Thank you so much for writing your story down. You have been through so much. I'm so happy for you that you are turning the corner. It is vey empowering when you start to make progress and realize where the key to recovery lies.
Keep us all posted.
Alicia

 

Beezy I feel like we are brothers from another mother!!lol
Only I was 25 when I bothered to question the pain 'experts' and discovered Sarno, it truly is a life changing initial moment but that first epiphany can be replaced by fear when the pain doesn't go away instantly . I'm finding it really difficult to try and get family and friends to conceptualise what I am going through.
I know my main issue but feel powerless to overcome it, it truly is a battle for your life!

I like to think of this whole experience as the Pebble process. I am currently thrashing around the around getting chunks taken out but by the end I will be smooth and the bumps will be gone!

 

Thank you for this. I am not at the point of giving up yet, although sometimes I do get the wind taken out of my sails when my pain acts up.

I relate to what you are saying about going in to a surgeon and begging them to operate. That was my mentality the first time around. These authoritative doctors on the cutting edge of medical technology were going to run a few tests, find out my problem and fix it. So needless to say, that turned out to be a bitter disappointment. I realized I was all alone then and no one could fix me. It was just so crushing.

I actually just went into a doctor today. I haven't been to one in the better part of a year since it all failed so badly when I was first in pain and I've accepted the TMS explanation. I only went in today specifically to get bloodwork done to see if I have rheumatoid arthritis. That is one of those things TMS can't fix (as I've read Sarno himself say).

The doctor I went to see is someone I trust who I have been unable to see ever since my pain started because of insurance issues. I was excited to get the insurance issues resolved and go back to him and see what he had to say about all this. He took one look at my scans, poked at my body here and there and just flatly said "You don't have RA. Doing blood work will be a waste of time. What you need is better physical therapy. Go to my guy and he will sort you out. Your last PT was a hack and you just need someone better."

I have to admit I got excited and have made an appointment. I had given up on all physical cures and even now I'm not placing faith in PT curing me. But as my doctor told me, not all PT is the same. You need a real expert and not just some hack to get fixed up. We will see. It could fail again, but it's true my first attempt at PT was pretty half assed.

I still believe in TMS, but the truth is my body is not the same as it was two years ago. I have lost mobility and strength. I have desperately wanted to get stronger and more fit just in general, but my pain stops me from vigorous exercise. I could use the PT just as a way to get stronger under a medically supervised and encouraging environment. I will go to the PT but I will take it with a grain of salt. I will not think of it as a salvation, but just as another tool. And I will continue to try to push through psychological barriers in the meantime.

 

Thats great that it turned out not to be RA! Congrats on that!

Funny enough...the night I discovered that Google guy's story (the one that convinced me that I have TMS)....that night I had convinced myself that I have RA because: I felt like I had arthritis for one, and for two I read that RA attacks both sides of your body. If you have pain in your right foot, then your left foot will also have pain. I was convinced I had RA, and I got online and read horror story after horror story and convinced myself that I was going to be living a life of agony and hardcore medication. That same night my hands hurt more than ever before....the stress and worry was causing it, I would later find out. I would do a routine of cold then hot. I kept a huge bucket of water in the bathroom that I would fill with ice, and then fill the tub with hot water.....and would alternate dunking up to my elbows in each. I usually got short term relief from this. After reading about RA that night, even the hot and cold technique couldn't help. I was mortified.

And then I found Google guy's story.....and my journey of TMS began.


Take what I am about to say how you will....as obviously I am no expert in this TMS stuff....but I have dedicated almost all my free time over the past two and a half months or so reading about it, and thinking about it, and reading success stories. One of the main things you have to do is to:

STOP ALL ACTIVITIES RELATED TO TREATING YOUR BACK AS AN INJURED BACK WITH SOMETHING PHYSICALLY WRONG WITH IT. Those aren't my words, those are John Sarno's words. Im sure it's hard to believe a guy like me who is so new to this game.....but it is one of the main things that Sarno talks about. As long as you are treating your back as an injured thing, with a structural abnormality......you will not get better. Im sorry to put it like that, and I know you are hurting, but you have to give up all treatments that treat your back like there is something wrong with it.

I understand that you want to treat this PT as using them to just help you work out and get in shape, but they aren't going to treat it like that....they are going to treat you as an injured person with an injured back and they need to gently get you back into shape. Your brain will still be winning as long as you are staying in the realm of an injured person. And again, not to sound harsh, but as long as you are wanting to try stuff like this tells me that you haven't fully, 100%, beyond a shadow of a doubt, accepted TMS as what is going on with you. And you will not see any improvement until you forget all those forms of treatment, 100% fully ACCEPT that you have TMS, and read and read and read about TMS. Just read nonstop about it. Information is the key....it is the answer....it is the penicillin for your suffering.

But who am I to advise you? It's your life, and maybe this is just something you need to try out. So try it out.....but if it doesn't help, then you know what you need to do. Consider it as something you need to mark off your list as stuff you've tried out. You can only fully be ready to accept TMS when you are ready, and that may mean trying out all kinds of stuff until TMS is the only thing left.

I talked about the Egoscue physical therapy that I did. Well, after I discovered TMS and read about how you have to give up all treatments related to your back pain, I walked into my next appointment with my Egoscue therapist and told him that I was going to be stopping Egoscue....I was going to be stopping the exercises that I had been spending an hour on every single day....I was going to be stopping the treatment that I had shelled out $2500 for, and I still had 5 visits left on my package that might be going to waste. I stopped all that because Sarno emphasizes that over and over and over. I trust in this stuff....and I took a leap to do it right. So far it seems to be working. I just ran another mile today, and I still have very little pain. It just feels different....it feels like something is going on....and it's good.

Again, you can't take my words for it.....you can only come to this conclusion on your own. If anybody else could chip in Im sure they would say the same thing.

But try what you must and see how it goes. I hope it works for you, I hope it does what it was meant to do. But if it doesn't, I hope you can fully get into the TMS thing and see where that road takes you.

 

I am just not sure sometimes. I can't even start the PT for a couple weeks because this particular therapist happens to be going on vacation.

The thing is, over the past year and a half, my pain has gotten better. Then worse. Then better again. Then worse than before. Then completely gone! Then back again in a few weeks. It is exhausting. I feel like I tried the stopping all physical treatments thing before and I was still not able to get out of pain.

I have read healing back pain, the mindbody prescription, to be or not to be pain free (marc sopher) and am currently working on the great pain deception and the divided mind. I feel like I could write my own TMS book at this point. I see them go over the same points again and again. I have a really firm grasp of the concept. But it just doesn't take.

I just can't break the mental barrier. At times I have felt really convinced there is nothing wrong with me. It has felt like a white light moment. But it just doesn't last. One day I go to sit up out of bed and feel that old familiar throbbing around my illiac crest as weight is applied to it. And my heart just sinks.

Today I am in worse pain than I've been in a while. Probably because of the stress and worry, as well as the old idea that maybe it's physical creeping back in. Maybe I never even should have gone to the doctor.

Thank you for listening though. It means a lot.

 

@mirepoix , I feel that "mental barrier" that you describe from time to time, too. I have the knowledge and know what I need to do, but I can't make the leap to actually doing it. To me it is like being in a rut where spinning my wheels just makes it worse. Perhaps this is the feeling of being stuck in old neural pathways and not having the will or energy to forge a new one. What helps me at these times is to stop thinking about it---all of it--my pain, TMS, my life story, etc. and just live. It's counterintuitive, I know. We have a problem, so we try to think harder to solve it. But sometimes you just have to stop thinking, and let all the knowledge you have acquired seep into your unconscious. Take a break from it all. Try to find some joy in life. Be good to yourself and those around you. Just be.

 

OMG Alicia, I cannot believe your symptoms I've had more then half of them!

 

Breezy - thanks for this excellent post. You should copy this and create a separate thread so it gets the attention it deserves. I too suffered for many years and like you, felt giddy when I discovered Sarno because I instinctively knew I had stumbled on the answer to my pain. The excitement you felt dissolved the fear you had for many years, allowing healing to begin. For me I recall enormous relief that I could heal myself and get off the medical merry-go-round. My Dr Sarno discovery came at a time when I was ready to accept TMS, and I felt empowered; having previously resigned myself to just coping/living with my pain.

I'm delighted for you - thanks for sharing.

Alicia thanks for your wonderful contribution here. It will help countless sufferers.

Mirepoix, TMS healing takes time, but importantly don't calendar-watch because this adds to frustration. Embrace TMS healing 100% and do the mental work to settle your tired nervous system down. This is something you need to work at every day...affirmations, post-it notes, mirror work (yes, talk to yourself) - whatever you can connect with - embrace it now and don't beat yourself up - us TMSers are experts at that, but it's that trait that gets us in a TMS pickle and hampers healing. Have faith in TMS healing because it's the truth.

Irish - I notice on this and other posts that you long to have your family and friends acknowledge and understand what you've been going through. Accept that they possibly will never understand. It frustrates me that my Dad and some of my sisters suffer with TMS, yet they will never get it - despite me showing them my story on the wiki. Just accept their resistance or lack of understanding, and use that energy on you and healing.

 

Alicia, Thank you for your post. It really helped to hear your story. Without people sharing their symptoms, I would not be doing so much better. When I am fully recovered I will be sure to do the same.

 

So glad to hear that you are doing better tammyg. This is what it is all about.
Alicia

 

Hi, I have recently started seeing a tms therapist for chronic neck pain and headaches. I have also developed tinnitis the past few months. I also believe that I now have symptoms of hyperacusis and you are the only person on the board that also listed this symptom. It is really scary and I would love to get more info on your symptoms of it and if it went away with your other tms symptoms. It is really starting to scare me.

 

Hi lasleysl, I am so sorry you are going through all of these symptoms. I just wanted to share with you that I have had many symptoms associated to tms including head pain, neck pain, muscle twitching and anxiety. I found a link to Dr. Joe Dispenzas meditation on the forum 3 weeks ago and his teachings have made a dramatic difference in my recovery. The meditation alone was not the most helpful at first, but once I watched and listened to many of his interviews and seminars on youtube it really started to help me. I attended his weekend workshop and I am now almost symptom free! I sincerely hope his work will help you too. I know how tortuous fear can be. You will find your way, keep searching and learning.

 

Hi lasleysl,
Yes, hyperacusis can be very difficult and life-altering. Mine went away completely with all of my other symptoms once I did the emotional work, learned to turn off my fear thoughts and self-destructive thoughts and ultimately calm down my autonomic nervous system. The TMS Recovery Program by Alan Gordon on this website was critical to my recovery. It gradually got better over some months and then was gone.

 

Hi Alicia Just come across your post as I am trying to do something as a practitioner for others what I never received myself. i.e. an understanding of TMS or MindBody syndrome as Howard Schubiner calls it (and his book 'Unlearn your pain' is a great self-help starter for people who can't yet afford or don't want to work with a practitioner. My story is similar although my physical symptoms were more like fibromyalgia/ chronic fatigue with all over joint pain, extreme fatigue, anxiety, insomnia, etc, etc.

I suffered for about 2 years before I got help - and then (we're talking around 2000) the only thing on offer was anti-depressants, painkillers and other drugs to suppress symptoms. My 'a-ha' moment was going for counselling and finding out I hadn't dealt with the loss of my father 15 years before. Coupled with the recent loss of my relationship and my A-type personality style, I was driving myself into the ground. Seems like quite a few of the correspondents on here are similar. My realisation was to work on admitting to myself I was lonely and I was in conflict with myself for not wanting to admit I was lonely (having always been the 'strong one' in my family.

I now offer TMS treatment to people in the UK and elsewhere (by Skype) via journaling, and a specialist trauma transformation programme using hypnotherapy/ EFT (Emotional Freedom Technique) and EMDR (Eye movement desensitisation) all of which help considerably. Although not medical, I was a biochemist and health researcher for many years and very steeped in the scientific model so this has been a really big leap for me. . I am just about to publish a book which details my story because I thought maybe it's more powerful when it's someone who has been sceptical and now sees the truth of this - I also include a lot of the science too so people can see why this happens. I've got a trauma and chronic pain survey on this site too for anyone who would like to take part in scientific research.

Anyone out there who is looking for help - don't think about it just do it. Get yourself skilled in the understanding that virtually all of the chronic syndromes we see are learned responses to trauma by the brain. We can unlearn them but we need to do the work. Well done Alicia for being honest and showing us that no matter what your background, experience or levels of expertise you can do something... Good work!

 

Thanks pworby for your post. It sounds like you have accomplished quite a lot and are helping many people. I tell patients that TMS is the best diagnosis to have because it is fully treatable. If you haven't already posted your story, it would be very helpful to do so. I find that those with fibromyalgia and chronic fatigue are some of the most resistant to the diagnosis and can have a harder time recovering. Your story would be inspiring I'm sure. Best to you !!

 

I've just uploaded my story (highly shortened version) Sorry I didn't sign off with my full name. I'm a newbie on the site! Patricia

 

Yes Fibro/ CFS have been described as the 'poster children' of TMS type syndromes. They get quite deeply rooted in the pain cycle and people get stuck there. it seems the medical profession aren't helping either as the prognoses for these modern diseases are so poor. People are basically told, it's for life get used to it. I try to get them out of that frame of mind but it's an uphill battle because not only modern medicine but also the online support groups support the idea its incurable. hence I can only help a small proportion of people who are willing to believe they can recover. It's so important to start with that belief.

 

Yes, I understand and agree.

 

This is the great tragedy of modern medicine and one many Doctors should be embarrassed about. it highlights the growing disconnect between Physician and Patient only aided by the internet and people trying to self diagnosis or find hope elsewhere.
My pain specialist(third one) told me its just a part of life for some people and didn't offer any indication there may be a psychosomatic element at all.
Incredibly discouraging and no wonder depression and suicide is a major risk factor for those with chronic pain.