My Story (Warning: Very Long)

Well, it's been two years and a half since I started experiencing this chain of conditions, and I figured it was time to start putting it into words.

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Context; I'm currently 23, I work a typing job, and I'm a full-time Econ student. I live at home with mother + sister, somewhat abusive father left when I was young. Grandparents live downstairs, very close-knit family.

Traits; Brainy, introverted, traditionally lonely and very eager to fit in, not very good with people, achiever in my studies, hypersensitive (emotionally), which means I don’t handle sudden stress well at all (total opposite from when I was a teen), thus, cannot keep things in very long. A bit of an obsessive, orderly streak. I am also a total clean freak.

Medical history; I have no history of any joint, muscular or neurological issue, and there is no such history in my family (apart from back pain). I have a history of significant anxiety issues; have been treated for a variety of obsessive behaviors related to anxiety, and anxiety related to the condition below. I have typed and gamed since I was 12 on a daily basis. I don’t drink nor smoke. I had bouts of short duration anxiety as a kid, when I would obsess over a thing, and it would go away soon after.

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Symptoms, in order of importance;
-Finger pain in ALL FINGERS of BOTH HANDS when typing or clicking. Pain varies, but symptoms stable since they began. Painkillers of little to no use. Pain starts as SOON as I put my finger on the mouse, or on the key, and stop when I stop. No progressively appearing pain here, it's sudden, it's mean, and it's predictable. Both hands started being painful SIMULTANEOUSLY, and I can remember the exact time when it started. The pain seems to be located on the underside of the fingers/hand. Seems to be made worse by warmth. Pain improves as a I type/write, but remains.

The huge oddity about this, is that I can game for many, many hours with minor pain, but as soon as I type or write, it’s back to the pain train. It’s the worst of my symptoms, as it’s stopped me from doing things I enjoy, this being writing, and to a much lesser extent. Ironically, school essays are now a literal rather than figurative pain in the rear.

-Jaw & ear pain . This one used to be absent, but it’s now one of the main symptoms. The pain comes and goes, usually very suddenly. I also developed bruxism – I grind my teeth, and use a mouth guard. It’s a major symptom right now, as I feel it very often. It actually disappeared while I was writing this.

-Health anxiety – Very severe, periodic health anxiety. This is the only symptom that has actually disabled me. When I first got it, I couldn’t do home work, work, or anything at all. This runs in the family. It’s thankfully periodic, so it comes and goes. I use CBT for this.

-Tinnitus, sound sensitivity. I get ear ringing, and my ears are very sensitive to sound. I got this checked a while back, and my audiologist told me that my hearing was normal, and that I did not display any sign of hyperacusis(sound sensitivity).

-Hand weakness. This one is peculiar as it happens independently of the pain. I notice it when I type, and sometimes when I've been holding a glass for too long. My hand/wrist feels weak, like it's about to drop. I had no such thing with my arms, and I exercise them frequently.

-Crawling arm & shoulder pain. If I ignore the finger pain, it sometimes spreads to my entire hand in the form of muscle ache, then my wrist, forearm, and in no time, to my shoulder. This process is very quick, and within moments, my entire arm will be cramped up. The funny thing is that it goes just as quickly, and within a short moment, it's back whence it came. I have not identified this with my left arm since I do not use it as much, but I suspect that it's the same story.
A note about this one; I can not keep the computer position I had when it all started, as it makes my arm extremely cramped and painful. Any other position seems to fix this.

-Carpal tunnel tingling. Occasionally, when I've held a glass for too long, or when I'm drunk (the two, coincidentally, go together), the entire thing will turn into full-blown, clear-as-day CTS thing. It tingles in my first three digits, is numb, and is relieved my shaking my hands of putting them under running water. It does not happen otherwise.

-Light symptoms; tight wrists, cracking wrists, fingertip tingling.
-Miscellaneous; short-sighted, asthma, allergies.

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What I do NOT have;
-Fatigue, swelling, major stiffness, fever, reduced mobility, reduced flexibility, tingling in the morning, waking up from pain. Things that actually lead to a diagnosis.
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The story;

-Before last semester of pre-university (1st year of college in US equivalent), walking home from school, then I get a loud ringing in my ear. Immediately, I worry it won’t die down, so I go home and check online for the symptoms. When I learn about tinnitus on YouTube through an instructional, cautionary video, I get a major, break-down-the-house panic attack. This is also when my major health anxiety starts. At this point, I cannot listen to music, as my hearing is very, very sensitive.

-Two months after, my anxiety dies down as I learn to accept and ignore tinnitus. Things return to normal. Within a week of that, I start worrying that I have heart issues -- I feel a pinching on the left side of my chest. I go pass all the tests, EMG, etc. When I return to my doctor a month later, she tells me all is normal. My chest pinching stops as soon as I step out of the clinic and it hasn't reappeared since.

-Once that's gone, tinnitus worries return. I end up getting tired of it, and I go to an audiologist who proceeds, after tests, to tell me that not only do I have no hearing loss, but I also have no sensitivity to sound, and have had no abnormal reaction to very, very loud noises. When I step out of that clinic, my hearing sensitivity is gone, and I can listen to music again.

-Afterwards, I start getting hip pain on the outside of my hip at work (at the time working at a retail store). It moves to the inside of my hip when I read online that this is where serious hip pain is. I leave my job, and it goes back to normal.

-I start this typing job. Not even a week in, I notice one of my fingers on my left hand is a bit tense. I go online to look it up, see "Arthritis", and that very afternoon, both hands suddenly become like this, and typing becomes agony. Health anxiety starts again, this time in its worst phase. My entire summer becomes one long nightmare of wake up worrying, worry all day, then go to bed worrying.

-I can not pin this down on any specific physical issue -- Carpal tunnel doesn't cause joint pain, osteoarthritis is rarely polyarthritis, RA has morning stiffness + fatigue & swelling, and symptoms have been stable for years.

-The Now: Well, I am still at the same job, two years later. I write for an hour or two, my hands become a bit sore and painful, but at this point it’s become routine.

What I have done;
-Physical therapy
-Wore a splint for weeks, no result.
-Painkillers not very effective
-Alcohol neither for that matter. It actually accentuates symptoms.
-Stopped typing for an entire month. Even after a month, as soon as I put my finger on a key, it comes back within a few seconds.
-Visited three doctors, a physical therapist, a chiropractor. Verdict? "Is' wear'n'tear son. Here's some naprox- Oh you already have two bottles? Okay, well here's a splint- That too? Well, okay then, here's a fatherly tap on the shoulder."
-Waited a year to let symptoms evolve. Even that didn't work.

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What helps;
-Ceasing activity. As soon as I stop, most of my symptoms go, and I can start again soon after.
-Cold. If my hands hurt, I put them in cold water, and it's all good.
-Being distracted.
-TMS Wiki

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I have read Mindbody Disorder and Divided Mind, and though I feel like it temporarily helped my jaw, I haven’t found all that much in the way of symptom relief. The biggest help was TMS Wiki, and I credit it for the few phases where my pain seemed to get better. Nonetheless, when I joined, I had immense doubt about TMS and its community, and I sort of thought it was a scam.

Actually believing in the diagnosis was, and is definitely the toughest part – I’m someone who is naturally skeptic, and normally needs loads of confirmation. All of my major reliefs and symptom imperatives came because medical professional confirmed I did not have a particular issue.
I’ve however related immensely with members of the community. Forest in particular seems to have had a strikingly similar situation – in addition to being an Econ major J! My belief in the diagnosis is not 100% (about 90% as of now) complete, I believe I’ll need some more help on this one, but so far it’s been going well. When I get worried, or I get pain, I just log on to TMS Wiki, and realize there’s hope. I just can’t quite wrap my hands around something that will make me feel better physically just yet.

I’m in an awkward situation, however. I have no access to a Sarno-style doctor and regular psychotherapy is excessively expensive. Thus, I put this post as a sort of starting point. I hope that from then on, I can start improving, but as usual, I’m skeptical. A part of me is starting to consider that I might have to rely on ergonomics once I graduate in order to minimize pain. I’m hoping I can fix my TMS before then.

 

Thanks for sharing your story. The wiki community was really helpful to me too. I found that feeling isolated seemed to compound the feelings of shame and fear that are part of TMS. So it's nice to be able to talk to other people that are going through it.

Most people don't have access to a TMS doctor. It sounds like you have seen a number of other doctors who would have identified if something more serious were going on. I do have a TMS doctor, and it was helpful for me to get an official diagnosis from him, but most of what he recommended--reading the Sarno books, exercising again, coming to the wiki--are things you know about and are doing.

Therapy with a TMS therapist has helped me a lot but again, a lot of people don't do therapy at all and they recover.

And I think it's OK to be skeptical--keep reading up on TMS to get more information and "proof."

I'm glad to see you back here

 

Thank you for the answer Veronica! It's very comforting to have a helpful community. Other than TMS Wiki and the occasional TMS video, it's total isolation. I wish there was a way to communicate more actively with other members of the community, exchange some ideas, etc. Like a peer support group.

 

Fthghn!
Hi, Thanks for sharing. I just want to encourage you it took me months to get all this TMS knowledge down deep. I did
not go to a TMS doctor but went to a chiropractor one time. My gut feeling when I saw him was that there was structurally
wrong with me, especially after he said I don't know how you can jump out of your chair that fast and bend like you do
if you had serious back problems.

I think sometimes the frustration of just wanting to get on with one's life without all these symptoms sometimes adds more
tension.

I do think being a student sometimes add more stress than students realize, especially thinking about graduating and
what they are doing with their future. It is a definite transition and sometimes difficult.

I have found wonderful people and wonderful information on this TMS wiki that has really helped me.
Hope you find the same. You going to do great. Keep going!!!!
G.R.

 

Hi again, Ftaghn!

I scanned your history and your list of symptoms, and all I can do is nod my head and go - yep, yep yep: multiple symptoms, moving symptoms, relief as soon as a doc says there's nothing wrong, anxiety and panic attacks, and distractive behaviors... I can relate to this experience. The only difference is that my symptoms weren't very overt or extreme until I hit age 60.

It's normal to have doubts about something as hard to put your hands around as TMS theory. Perhaps it will help to remember this adage, given to us by the persona of Sherlock Holmes - "Eliminate all other factors, and the one which remains must be the truth"

You didn't say whether you've done the work recommended by the Structured Educational Program on the wiki. The readings and the journaling exercises are like a form of self-therapy, which can be helpful for those who either can't afford or don't have access to a suitable therapist.

I'm also thinking that you would benefit from practicing positive visualizations and self-talk. For example, the assumption that you're going to have to rely on ergonomic supports is a very self-defeating attitude to have! TMS therapists and coaches tell us that negative assumptions like this are what keep us from recovery. If you will start paying attention to your negative inner dialogue, you can stop it by trading negative assumptions with positive ones.

Now, this is not going to be easy for someone who who self-describes as a skeptic. I myself did not initially believe in positive affirmations and self-talk, but I have come to recognize how powerful they are - I've learned that I can stop a panic attack simply by saying, out loud if I'm alone, something positive that cuts off the fear-talk. I use it with my symptoms as well, with varying success.

Part of what you have to do is retrain your brain to not expect pain. Check out this Ted Talk by V.S. Ramachandran, mainly the segment about phantom limb pain (although the whole talk is fascinating). There was a study done using mirror box therapy, with very encouraging results, published in the New England JoM. I hope you will find this information intellectually encouraging.

A lot of people find Monte Hueftle's coaching technique to be very helpful. We have a series of his blogs from 2009 on the wiki. He has a program which some people think is expensive, while others say it's way less than an hour of psychotherapy, LOL! But the blogs are free, and will introduce you to the topic of how to change your thoughts in order to change your health.

I'm glad you keep coming back, because if this is what works, even a little bit, then there is hope!

Jan

 

There's also the weekly chat: http://www.tmswiki.org/chat/

I have met a lot of supportive people here; even though most of them don't live nearby we are going through the same thing and it helps to know we're not alone!

 

...and feel free to message me if you want to talk more. I don't post on here as much as I used to but I check my messages all the time.

 

Hi there-
It's intriguing to me that you said here above, "I could not wrap my hands around this..." I think the usual phrase people use is that they cannot wrap their arms around this, or they cannot wrap their minds around this...but you said the hands. Given that you have issues with your painful hands it was something that I thought might be of note here for your consideration. It's like your mind is saying with subtlety that it is TMS. I am not a psychologist nor physician so it's just a theory from another TMSer.

I'm sorry that you've been through so much pain and the efforts that go with attempting to find its cause. Maybe the skepticism is what is holding you back - the legalist description on the TMSwiki profile. You need much proof.

I think that perhaps the 10% doubt, though little in percentage, is doubt nonetheless. Any doubt gives TMS an escape hatch and the symptoms will roam to other body locales potentially.

Dissolve the doubt. Use affirmations. Forgive yourself. Love yourself.

 

I too am very skeptical by nature. I am Physician and have never had any training in mind-body medicine. The concept that the body can cause physical symptoms is in contradiction to all my years of training. I knew that my symptoms could be explained by any one disc in my back because my pain moved around my back. I think excepting a new idea which is so radically different than you are accustomed to it is difficult and is often a process which takes time. Be patient and keep working.

 

Thank you so much for the answers. Since I posted this, I have had ups and downs, it seems like the pain is very low currently, even my jaw pain faded for now. I don't expect it to last, but it's been going well!

@Jan - I did take a look at some of his videos. He seems great. My next purchase is Dr. Schubiner's Unlearn Your Pain though, I've been hearing great stuff about it.

@Veronica - Thank you, that means a lot. I might just give it a try when my hands are on a good day!

@Forest - I'll keep that in mind. All other pains seem to jump around, but my hand pain less so. It's odd to say, but it's been one of the most permanent symptoms. Jaw pain goes almost immediately, but hand pain is sort of always there. Unless I'm playing video games, that is. lol.

@Lianne - I just checked up on that legalist thing. It unfortunately sounds a lot like me. I had briefly heard of them, but I didn't know many other TMS personality types past the perfectionist and goodist. And yeah, it is odd I mentioned it like that.

@Eric - It's encouraging to see other skeptics. Every time I had a major pain disappear, it was because a professional had told me there was nothing wrong with me. Seeing doctors here as patients, professionals putting their names behind TMS, and solid research grants given to researchers like Dr. Schubiner, is extremely helpful to me. Were it not for the many efforts put behind all of this over the last decades, I'd say I'd be majorly screwed.

 

UPDATE: Things have actually been improving since I typed this -- I've been reading Dr. Schubiner's book, working, and going to school. But it's only the case for my hands.

Ever since then, I think that while researching symptoms, I stumbled on something about chronic fatigue. Well, ever since then, I've been having daily, soul-crushing tiredness. Two hours after waking up, bam. Tired. Like clockwork. Well, soon after, I start worrying excessively about it, and go into another rollercoaster of month-long anxiety concerning my fatigue, that only seems to improve when it's time to go to sleep. It's actually worsened recently, with frequent, intense headaches that rarely seem to relent. The anxiety got so bad that at one point I even started having suicidal intrusive thoughts ("If I have to be this tired for the rest of my life...").

Thus, while my hands feel better, my TMJ hasn't shown up for a long while, and my hearing sensitivity is nearly gone, I've been living a total nightmare. I got an appointment with a local psychodynamic psychologist, and I'll see if that helps.

 

Hi Again Ftaghn,

I can see in your last post that you are very much reaching out for help. I am a handwriting analyst and although you typed this message, there is a method I use to see what was the central thought in your mind when you wrote this most recent post. The central thought was your starting to have suicidal thoughts. I am not a physician, nor am I a clinical counselor. Call a psychiatrist or a suicide hotline.

Forest and others: Is there a professional psychiatrist on this tms wiki for Our friend who is in pain to talk to?

 

Thank you for your answer Lianne. Yes, I'd say that was a very central and worrisome feeling during the last few months. I wasn't worried of doing something stupid -- I'm more worried of things worsening any further. I thought for a moment I might be starting a sort of depression, what with the fatigue, frequent sadness, headaches, and overarching feeling of despair, but I am still having good moments now and then.

 

Hey, just thought I'd post something to let you know you are not alone. Others have overcome and so can you. Take one day at a time. Don't ever give up. Don't stop trying. When I hit my lowest point I found out about TMS. In retrospect, it turned my life around completely!

 

Hi Ftaghn!
I think seeing a therapist sounds like a good idea. As Lianne mentioned if you need to talk to someone before that, you could call a suicide hotline. And you can always come here for peer support--we have all been through this or are going through it now.

I hope you feel better soon.
(((hugs)))