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 Anyone whose main symptom isn't pain?
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cgjohnson

USA
12 Posts

Posted - 07/28/2008 :  10:14:19  Show Profile  Reply with Quote
My story is (I think) a little different than most I've read on here. I didn't realize my post would grow to be this long (sorry!), but this is it:

My symptoms all began after a scuba dive in August of 2002. As I surfaced from the dive and took the regulator out of my mouth, I felt like I got hit by a ton of bricks. I was immediately dizzy (like being fairly drunk) and foggy-headed (also like being fairly drunk) and I had a weird pressure sensation like someone was pushing on the top of my head. Over the next few weeks the dizziness gradually lessened but the fogginess did not. The pressure turned into constant 24/7 headaches that no OTC pills could touch. My jaw muscles became chronically sore and I began having difficulty chewing and swallowing. For a week or so I had pain behind my eyes and they were red all the time. I was fatigued all the time and quickly became depressed as doctor after doctor was unable to help.

I have seen over 40 medical practitioners including ENTs (scuba trained), neurologists, Lyme and other infectious disease specialists, TMJ dentists and oral surgeons, phsyiatrists, orthopedists, chiropracters, massage therapists, physical therapists, cranial sacral therapists etc. I've taken a zillion pills, tried several restrictive diets, done special stretches / exercises etc. I've had several MRIs, CT scans, blood workups, a spinal tap, caloric tests etc. The only test that showed anything was the caloric (balance tests) that showed me I was a little dizzy/unsteady (duh, I knew that), but they said there was no treatment for that kind of dizziness.

The only successes I've had in 6 years of treatment are:
- A dental appliance (NTI) that got rid of my headaches and actually had me feel like I was getting better for a week (January 2003), then I slid back and I've been there ever since (though headaches stayed gone, thankfully).
- My second treatment (of four) with a technique called Neuro-Cranial Restructuring (NCR, it's a bit scary) gave me about 15 minutes the next morning where I felt 30% better (fogginess and emotions were better). It didn't last and the remaining treatments didn't provide any relief.
- Weekly special TMJ dental treatments by a guy in Chicago gave me a day where the lower half of my face wasn't sore for several hours (neat feeling, at first I thought it was numb but then I realized that it just didn't hurt anymore). Subsequent treatments were unable to recreate this.

My current symptoms (that have not really changed in about 5.5 years now) are foggy head / difficulty concentrating, chronically sore facial and upper back muscles, difficulty chewing, and depression. About 9 months ago I added RSI-type pain in my hands/forearms to this list after playing a handheld video game for a few hours. This has improved from when it started, but it still bothers me every day (though I'd gladly live with it if my head symptoms would go away).

So I don't really have a lot of pain. Just sitting here, I'd say my pain (facial) is 1-2 out of 10... I don't really notice it anymore and it doesn't bother me. But the foggy head and associated depression have ruined my life. <------- I realize a statement like that will make you all say "See it's TMS, it dominates your life" and I am steadily coming to that conclusion myself ever since learning about TMS from a neurologist I first saw a month ago. But it sure is an atypical case, right? Keep in mind that though I've seen TMJ docs, I'VE NEVER HAD PAIN IN MY TMJs, EVER. How can you have TMJ without the main symptom?

My long-time operating theory (that a few dentists have convinced me of) is that the sore facial muscles (they are "in spasm" according to the TMJ dentists) are irritating nerves that control balance (jaw muscles are close to the ear balance bones). This is why I feel a tad unsteady and foggy and that in turn makes me feel like crap and keeps me depressed. I feel like this theory can be consistent with TMS (blood is being restricted in my facial muscles that makes them go into spasm and irritate surrounding nerves). So I've stopped TMJ treatments and have been doing TMS ones for several weeks. I haven't noticed any real changes in my head yet, though my hands might be sligthly better (I'm not sure). I'm just looking to see if anyone else out there has had similar symptoms (that aren't mainly pain) and been helped with the TMS approach. It would be reassuring to read a success story from someone like me, but I seem to be a weird case so I'm not expecting much

tpunk

USA
22 Posts

Posted - 07/28/2008 :  11:00:12  Show Profile  Reply with Quote
My first symptoms (about two years ago) were also dizziness, feeling of being off balance-like I was on a rocking ship and I also would feel like I was getting an electric shock in the back of my neck. At times I felt like I had a bowling ball for a head as it was so heavy on my shoulders. These symptoms later evolved into pain in my neck and upper back. So you are not alone! I also made my way through all of the doctors and tests available with a lot of guesses as to my condition, but no true diagnosis. Since following Sarno and this forum I now know I have TMS and my symptoms were all from anxiety, repressed emotions, being a people pleaser and a "goodist." I am about a month into my recovery and I feel better than I have felt in over two years and I think you have come to the right place for guidance.

I am also in the process of reading "The Worry Cure" by Robert Leahy, which has been helpful to me.
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Dor

67 Posts

Posted - 07/28/2008 :  11:21:36  Show Profile  Reply with Quote
I can relate to you somewhat and hope that it will help a little to know that someone else is experiencing some of the same things. Mine began with a great deal of dental work, loss of all top and bottom molars, months of waiting to have the partials made, and then adjusting. So, in December I had a slight ear ache which progressed into ear ringing. ENT diagnosed it as TMJ although like you I had no pain in that area. He said that TMJ can cause dizziness, ear ringing, foggy feeling, ear aches, clogged ears, etc. So, I pretty much accepted that diagnosis, but then what to do about it???

Though my symptoms do not sound as bad as yours they have certainly been enough to affect my quality of life. I have been to a GP, my dentist (of course), the ENT (great, old fashioned, kind, wise, and very non-invasive), acupuncture, and finally massage. I refused all of the muscle relaxants, tried a holistic medicine, took decongestants, did the Netti Pot, on and on and nothing really helped.

So, I returned to Dr. Sarno and read again his works. I am also now reading Scott Brady's book "Pain Free For Life". I am also a huge fan of Dr. Claire Weeks and recommend her books highly. You might find it interesting to note that a symptom of anxiety can be that dizzy, spacey feeling you have. And, given all you have been through it would not be surprising to have anxiety over all of this.

While it may be true that I have TMJ as a result of all the dental work, and while it may be true that the ear ringing is a result of that TMJ, and that yes, sometimes I feel spacey or a bit off kilter, I had to find a way to make peace with it all and get on with my life. Am I cured by reading a few books - no. But, I what I am doing is relaxing with it all more, not worrying so much, letting the ringing come (don't like it though), letting out some bottled up emotions by talking things over with a most understanding and dear husband, and by telling myself that this is nothing. You are right, it is probably tight and spasming muscles that make everything worse. Interesting isn't it that when I am enjoying myself that I don't notice a great deal of it!!!!

No, you are not a weird case - just someone worried and confused and not feeling so good. I don't think TMS has to always be about pain and I do think that our emotions can cause so many of the symptoms -those flight or fight theories are very, very true.

I am not a success story yet, but have been with other bodily concerns in the past. This is just a new one. My husband says, and he is so right, there is always a medical component to what I am experiencing like the TMJ, but my worry and fear of it makes it all worse.

Let me add one more thing. Maybe others will disagree, but the thing I found so refreshing and wonderful about Dr. Sarno and Dr. Weeks is that they make it all so simple. We can run around first to medical doctors and then to therapists and then to self help and then to all kinds of different treatments, when actually what these two incredible doctors are saying is - slow down, let go, let it come, do life anyway, don't run from it in fear, and accept, accept, accept. Accept that your body is reacting in a perfectly normal way to emotions and anxiety. Doesn't that make you take a huge breath of relief!!! Wow, your body and mind aren't diseased, in fact, they are doing what they are supposed to be doing in times of stress. We just have to learn to respect that and not fear it. Not easy, but oh so doable! I don't think it requires a great deal of hard work, just a breath of understanding and acceptance even if it is only a tiny seed to start with.

Hang in there. You are well on your way to a good journey.

Dor

PS As I was writing all of this to you and thinking about my own self I started to feel a bit dizzy, nervous about it, and a little foggy!!! Now what does that tell you????
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Hillbilly

USA
384 Posts

Posted - 07/28/2008 :  11:23:53  Show Profile  Reply with Quote
Two words: anxiety disorder.

I hate quotations. Tell me what you know.

Ralph Waldo Emerson
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mizlorinj

USA
490 Posts

Posted - 07/28/2008 :  11:41:00  Show Profile  Reply with Quote
I had pain, but I also had a bizarre numbness. So numb I could pinch this certain area of skin, stab it with my fingernails, etc. and feel absolutely NOTHING.
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moose1

162 Posts

Posted - 07/28/2008 :  13:36:13  Show Profile  Reply with Quote
quote:
Originally posted by Hillbilly

Two words: anxiety disorder.

I hate quotations. Tell me what you know.

Ralph Waldo Emerson



+1. Anxiety is my main symptom now, and I am in therapy for it. Part the deal is major brain fog and dizziness, and it sure does suck. My other TMS equivs in the past have been: chronic low back pain, arm/hand pain, gastro stuff, insomnia, etc. etc. I am working through some serious past and present pain as well as "who the hell am i" type stuff, and the anxiety doesn't like it at all. you might want to find a good therapist and give it a shot.

Best,
Moose
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cgjohnson

USA
12 Posts

Posted - 07/28/2008 :  14:52:33  Show Profile  Reply with Quote
Thanks for all the replies.

It is good to some others have had weird symptoms too. My foggy head is always there, unwavering, 24/7. Nothing makes it better, but a few things make it worse. One is chewing something a bit difficult like a steak. But it doesn't get worse right away, it usually takes 15-30 minutes after excessive chewing and then I just feel even foggier and more "out of it". Ibuprofen tends to help bring this back to my "normal" state. The other thing is holding odd neck positions for an extended time. Like having my head tilted down to chop a lot of vegetables or twisting my neck and holding it there to do a neck stretch. The effect is the same as excessive chewing and again it takes 15-30 minutes for it to hit me.

So I know I'm supposed to resume normal physical activity, but I don't see how that applies to my main symptom. For my mild RSI, I can start to type more and lift weights again. But for my fogginess and sore face, what can I do? I don't really restrict what I eat (never ate steak much anyway), though I might chew more carefully than the average person. But I don't think I really obsess about my chewing or fear it.

quote:
Originally posted by Hillbilly

Two words: anxiety disorder.



Mind saying more than two words ? Are you saying an anxiety disorder can cause all my symptoms? If so, Is following TMS treatments the best route for recovery or is there something else?

My local TMS-type doc (he doesn't specialize in it, but does treat it since he went through it himself) had me see a therapist (actually a social worker) in his practice. She's treated lots of TMS cases with him. We had at least 7 sessions before she unexpectedly left their practice, but I never felt like it was helping me. Actually I felt our first meeting was the most productive because she was asking very broad questions and seemed to have a lot of insight about things that were bothering me, TMS or otherwise. Once we focused on TMS for all the following sessions, they didn't seem as helpful.


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Hillbilly

USA
384 Posts

Posted - 07/28/2008 :  16:56:08  Show Profile  Reply with Quote
quote:
Are you saying an anxiety disorder can cause all my symptoms?


Yes, and countless more. All horrifying and all utterly harmless. I had those and pain in the neck and shoulders, lower back, left leg numbness, twitching all over, electric jolts, and an eight-week stretch during which I passed nothing solid, insomnia, panic attacks and well, you get the picture. Dizziness and that feeling like walking on a ship were the first to go and were by-products of muscle tension in the neck and shoulders (largely what causes arm and hand symptoms as well).

I don't believe Sarno is correct about this at all and have written extensively on the subject on this forum before. He claims anxiety fits under the TMS rubric, and I think it is the reverse. This really gets confusing if you read this board because people call all sorts of symptoms TMS. The type of therapy (also known as classical psychotherapy, insight therapy, Jungian or Freudian) he advocates is expensive, lengthy (in most cases at at least one year), and the track record for curing anxiety problems is poor.

I talk with people all the time who deal with this wobbly feeling, and it scares them and makes them feel unwell, but it always puzzles doctors. There is a neurologist who visits here sometimes who can attest to the number of people who see him worried to death that they have some neurological disease (ALS or MS chiefly) and yet have 5 out of 5 strength on the workup, which means their anxiety is getting the better of them.

So, having had your many tests and having had nothing show up, what do you do? You are certainly going to be encouraged to follow Sarno's advice here, so perhaps your next step is therapy with a Freudian-trained psychotherapist. If that doesn't resolve the symptoms in a few months, maybe check out a little tome by Claire Weekes called
Hope and Help for Your Nerves. It will explain everything to you in plain language. When FDR said the only thing we have to fear is fear itself, he probably didn't know he was speaking the one sentence that will cure anxiety.





I hate quotations. Tell me what you know.

Ralph Waldo Emerson
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cgjohnson

USA
12 Posts

Posted - 07/28/2008 :  21:22:13  Show Profile  Reply with Quote
Thanks, Hillbilly, I guess I didn't realize that anxiety could do all that. I've been focused on physical stuff (TMJ, lyme, etc) for 5.5 years, it's only in the past 1-2 months that I've been thinking psychological (TMS, anxiety, etc)... looks like I have a ton to learn. I'll definitely do some searching on the forum for your previous posts.
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Scottydog

United Kingdom
330 Posts

Posted - 07/29/2008 :  00:26:18  Show Profile  Reply with Quote

quote:
But for my fogginess and sore face, what can I do?


You could learn a foreign language - 'I'm no good at languages' do I hear you say??

Yes, it's tedious, sitting trying to memorise what seems the impossible, yes, it's boring going over and over the same words until they stick. You need to revise several times a week to make any progress. But it would make a difference - or it did with me.

You sound like a vicitm of an incurable problem in your post but give this a try. Joining a class or group would spur you on.

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Wavy Soul

USA
778 Posts

Posted - 07/29/2008 :  04:05:26  Show Profile  Reply with Quote
I had a level of TMJ after major dental surgery that gave me so much pain I wanted to die. I almost needed morphine. And it would refer all over my body.

Now, this was right after having 17 teeth worked on. Of course it was physical. I went to TMJ dentists and they said it was a physical thing. Gave me devices, etc.

I was already working on the Sarno stuff for all my other (mostly non-pain) symptoms and having some success (Hell, any success means that is the way to go, long-term, as the trend otherwise is to get worse, right?). But believing this was all TMS was difficult.

I decided to believe it was TMS. I taught a weeklong class in which I would suddenly go into spasms in front of the group. I told them, while it was happening, "This is not really physical, it's just a distraction from some stuff I'm feeling" (the seminar was about the mind-body connection. The students' jaws were dropping as they watched me having to gulp Vicodin.

After 7 days of this, I went home, exhausted and after one day the pain went away and never came back. I attribute my sudden, instant cure to my holding strongly and publicly to my decision that it was TMS for a week straight.

Hope this might be helpful.

Love is the answer, whatever the question
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Wavy Soul

USA
778 Posts

Posted - 07/29/2008 :  04:06:42  Show Profile  Reply with Quote
I had a level of TMJ after major dental surgery that gave me so much pain I wanted to die. I almost needed morphine. And it would refer all over my body.

Now, this was right after having 17 teeth worked on. Of course it was physical. I went to TMJ dentists and they said it was a physical thing. Gave me devices, etc.

I was already working on the Sarno stuff for all my other (mostly non-pain) symptoms and having some success (Hell, any success means that is the way to go, long-term, as the trend otherwise is to get worse, right?). But believing this was all TMS was difficult.

I decided to believe it was TMS. I taught a weeklong class in which I would suddenly go into spasms in front of the group. I told them, while it was happening, "This is not really physical, it's just a distraction from some stuff I'm feeling" (the seminar was about the mind-body connection. The students' jaws were dropping as they watched me having to gulp Vicodin.

After 7 days of this, I went home, exhausted and after one day the pain went away and never came back. I attribute my sudden, instant cure to my holding strongly and publicly to my decision that it was TMS for a week straight.

Hope this might be helpful.

Love is the answer, whatever the question
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HellNY

130 Posts

Posted - 07/29/2008 :  09:07:37  Show Profile  Reply with Quote


Did the original poster suffer from decompression or "the bends" from rising from underwater high pressure too quickly? Thats what it sort of sounds like.
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cgjohnson

USA
12 Posts

Posted - 07/29/2008 :  11:00:04  Show Profile  Reply with Quote
quote:
Originally posted by HellNY



Did the original poster suffer from decompression or "the bends" from rising from underwater high pressure too quickly? Thats what it sort of sounds like.


I've consulted with numerous scuba-knowledgeable docs and they all agree it is NOT a decompression issue. That was my first fear right after it happened. I was a new diver, but I knew what the symptoms of the bends are since I had just taken all the classes. The symptoms just didn't fit that (and my uber-experienced dive partner agreed) so we didn't go for a chamber ride. The dives were pretty conservative too (well within the tables).
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cgjohnson

USA
12 Posts

Posted - 11/18/2008 :  09:02:45  Show Profile  Reply with Quote
Ok, so it's been a few months and I have not made much progress and I'm looking for some feedback.

Hillbilly recommend Weekes' Hope and Help for Your Nerves and I have read/listened to most of it. The problem is that I do NOT see myself on every page. I've never had panic/anxiety attacks, never been agoraphobic etc. She always talks about these intense surging emotions... I've been a virtual emotion-zombie for the last 6 years of my illness, unable to feel any positive emotions but commonly feeling anger and bitterness, but not in an "adrenalin surging" way. I mostly stopped obsessively thinking about my symptoms years ago, though of course they still bother me everyday and I continue various treatments (TMS-only for the last few months).

Yet I do think I am a somewhat more-nervous-than-average person, even before this started. I was nervous talking to girls, but I still had a few girlfriends. I was nervous speaking publicly, but I still did plays and other acting performances. I was somewhat shy/insecure, but I still had friends and went parties and bars and had some fun. I traveled solo through Europe and had a pretty good time. But looking back at my pre-illness days, I do think I had some constant low-grade anxiety (and low self-esteem). I don't recall emotional surges from back then, but it's been a long time so maybe I just don't remember.

So my real questions: Is that enough for my curent symptoms to really be anxiety? If so, I'm having a hard time with what the treatment would be. Weekes has people prone to panic attacks to go do those things anyway and float through it. But I don't really avoid anything out of fear. I don't fear driving, flying, working etc. I do tend to avoid social stuff now but only because it's not "fun" for me anymore since I feel like crap all the time (like going to a party when you have the cold, just not worth it). I still do go out sometimes anyway and I would NOT say that I have any "panic" symptoms while doing that.

The more I read these forums, the more it seems anxiety is more likely than TMS (because I don't have pain and my symptoms don't come-and-go). The fact that I've had limited progress on the TMS treatment plan so far is giving me doubts. I'm just not sure if or how I should change my approach and would love some feedback from those who've been there.
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painintheneck

USA
124 Posts

Posted - 11/18/2008 :  11:45:52  Show Profile  Reply with Quote
I have been diagnosed with panic and anxiety disorders. I was a strong willed, hard working, driven, perfectionist in some ways in the regard that if I did something I expected it to be right and would not accept less from myself. All this time I thought I was being strong and dealing with life great and pushing along I think I missed something vital. My life has been painful and difficult but I've kept going as long as I could.

I was working one day, I had gone in early to cover half of an additional shift. The day was going as usual. Anyway there was an "accident" at work and I felt a give in my upper back. I thought i was fine though. After that I had sat down and was relaxing to have lunch and a panic attack hit. Since then I had upper back and shoulder pain, neck pain, dizziness, foggy head, and developed an anxiety disorder due to what I now know was fear of another panic attack and fear of my symptoms. Anyway I have these symptoms off and on same as you do. I normally get neck tension when the dizziness and fogginess is around.

Was this your first dive or was this dive in any way "different" form any you had done before that might have given your body a "trigger" to find it a great time to pop some symptoms??

Oh and just for fun here is a list of some of the symptoms the anxiety has given me. Headaches, gastrointestinal issues, dizziness, foggy head, panic attacks, nervousness, muscle spasm ans tightness, heart palpitations, warm flushes followed often by chills, nausea, blurry vision, heavy feeling in head and legs most often, shakiness, and I'm sure the list goes on because it has been rough at times. I don't get them all at the same time though, it gets mixed up enough to give me time to have the fear if I am ok until I realize what's going on.

There is hope though I was almost 100% better. It was when I had a few symptoms and again feared it was something physical and did go to chiropractic treatment that I was hurt by the DR. badly and the anxiety came back. I'm working on getting back to better again now that the worst of the pain is gone.



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cgjohnson

USA
12 Posts

Posted - 11/18/2008 :  13:19:34  Show Profile  Reply with Quote
quote:
Originally posted by painintheneck

Since then I had upper back and shoulder pain, neck pain, dizziness, foggy head, and developed an anxiety disorder due to what I now know was fear of another panic attack and fear of my symptoms. Anyway I have these symptoms off and on same as you do. I normally get neck tension when the dizziness and fogginess is around.

Was this your first dive or was this dive in any way "different" form any you had done before that might have given your body a "trigger" to find it a great time to pop some symptoms??



Thanks for sharing, it sounds like we are somewhat similar. To be clear, though, my symptoms are never "off and on". They are always there, 24/7/365. That's why I have a hard time with the TMS or anxiety treatments... nothing "sets off" the symptoms if they're always there, so how do I properly approach this?

These were my first real dives outside of training. So they were longer (40-50 minutes) and I did two that morning. The incident happened after the second dive. I really think I did have a physical injury... the length of the dive plus the current made me have to clench really hard on the regulator. It was only when I relieved that clench to take the regulator out that everything hit me (jaw/TMJ strain is not uncommon in divers, but usually just gives them a headache for a day or so). But of course that injury/strain must have healed by now, so the perpetual soreness/fogginess has to be due to TMS/anxiety or similar.


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