I've been meaning to respond to this for a few days. I completely understand the frustration you are talking about. And you, of all people, who obviously has had drastic calamities over the last few years. You'd think a resp. doc could assess you very easily given the resp. problems you've faced, albiet (sp?) quietly and very bravely.

I've been lucky but it took awhile at the beginning of this to even figure out for myself what/where? hands, arms, shoulders, back?, sleeping oh yeah as good as ever and then realizing as good as ever was horrible. I was never in horrible pain when I was in a doctors office, so I never reported high pain values, actually it was seldom horrible, but no one could seem to understand or care that it was ALL the time, except my husband who of course knew every grimace or every position change meant discomfort. By the time I got to the good old doctor back home, bless you my friend, I was beginning to think I might really be "touched" since all my nursing friends were beginning to give me THAT look. One, just one medical professional, believing and understanding was all it took to restore my hope. From there on it got better, I no longer think about it that much. Oh, it's changed everything, from the way I drive, to the amount I drive, let alone ride, the way I sit, the amount I sit, the complete lack of fine motor skills, the dropping of things forty times an hour, but that's life, and so far, I feel like it's pretty livable.

I've thought of you often since back at obt when you had your very major surgery. Take care. phoebe

Hi guys,

Thought Id add this bit....Its not so much that the Dr's cant find out what's wrong with you, its the fact that most of them say "there's nothing wrong with you". That's the difference here. They dont admit that they cant find the problem, they mearly tell you that there isnt one....after all they couldnt be wrong could they so it must be all in our heads! AND THAT'S WHAT ANNOYS ME!

I think the mind is much more complicated than any of us can really grasp. I personally wouldn't rule out the option of pain being caused mostly or even solely by psychological problems. There is a good book called "The Mindbody Prescription" by Dr. John Sarno that I think anyone with TOS should read and consider for him/herself. It has helped my awareness of my self, my pain, and how my mental state -MAY- play a much larger part than I could ever have thought possible. I've been depressed for maybe 10-12 years, and TOS like symptoms seem to fluctuate heavily depending on my mood and/or outlook on life...

For example.... It's no coincidence that going into work caused my symptoms to flare up to an unbearable level. I hated the job. Before I even got in to work I'd already be in crippling pain. As soon as I'd leave work the pain diminished rapidly... So, it's possible MY pain may be a way for me to avoid having to face certain aspects of reality head-on.

The pain is very real. One's conviction as to the source of the pain really is anyones guess.

j- yes, but I guess the key there is that you have still identified that your mental state is a problem that must be figured out....even that is significantly better than people telling you you have no problem...!

I have been oh so fortunate to have understanding doctors all the way along- i don't say this to gloat- only to to pass on the idea that there are good ones out there. I consider myself to be truly blessed.

i do think it is important for each one of us to be able to think about for ourselves, so that we can explain in a rational way to our doctors, how pain affects various aspects of our lives. I think it is important to use words like "it isn't crippling at any one moment but it is present ALL the time" or, "It affects my mood so much that I am losing [friends, family etc] relationships" or any other number of ways that it can affect your life.

Once when I was frustrated with a doctors response to me about my ADD, I related the story word for word to a friend. She observed for me that I had expressed myself to the doctor in a very lighthearted way- and that I often did that, using humor and making fun of myself to lighten up a serious subject. She suggested to me that if I wanted the doc to take me seriously, i should express myself seriously. It was good advice, and I have used it to my advantage on several occasions since. I think it is along the same lines as telling people we are fine when we aren't [i also like the no better, no worse andswer to how are you today...!]

in any case, my arms are complaining...ice cream is calling so I am off...spent too much time reading online about the galaxy's performance last night and Beckham's additional injury...my poor galaxy are seemingly out of it for this season...kind of a bummer.

nighty-nite all...

Also--- Ive spent years battling family and friends. Ive been told its all in my head, too. I remember telling a bandmate like 3 years ago that I was in too much pain and couldn't practice anymore. He just looked at me and called me a hypochondriac, which, I guess is like, people just don't understand. I've told my sister that things are really bad. I've told my parents. I've asked family for financial help so I can see a doctor or a PT or whatever, anyone to make me get better, and, I've many times been accused of trying to manipulate them so I don't have to work [over this TOS nonsense]... I'm kind of at my wits end with it. I had to quit my job two weeks ago because the pain was too great. I didnt even bother trying to explain it to the management.

I'm sort of at ends with the world because it seems like everything is setup completely counter intuitive to living in a society full of people in optimal health. I mean, America is just a wretched place. We have great doctors and technology, yet people are barely able to utilize them and, for the most part, go through life completely oblivious to health issuse with food and ergonomics, etc. Not that I don't feel liberated in having learned a deal about these things on my own... it just seems like everythings backwards and, as a SPECIES, we still are only 150 years from slavery and burning witches at the stake and all that... so, as far as we've evolved.... medicine, health, the mind and body... we're still at the surface or understanding. The way we store information these days will change things much faster.

I wonder how many thousands of years people having been suffering from TOS and other RSI like problems...

About 9mo ago, my PM referred me to a thoracic surgeon in town (who didn't want to operate, b/c he didn't think it would help long-term). When we were discussing me, what increased pain, etc etc, he said that it was sad how little we STILL know about neurological disorders in general. In specific, we talked about TOS and RSD; dr's first wrote in detail about it around the civil war when they realized that they could amputate a leg, and the soldier would still complain about his foot burning. We thought it was that we've sent a freakin rocket to mars, but we can't figure THIS out.
arrrrrrrrrgh

well.... i hope everyone has a safe happy long weekend!

Three cheers for that little diversion! The thing about only being 150 years from America's own version of the "dark ages" (and less than 50 if we consider civil rights, less than 100 for women's rights, etc) is so true. I know that while things might look a lot different on the surface these days, there's a whole lot of cruddy stuff stewing around underneath. You're also right on about the ways that we store and transfer information being probably just as critical to the evolutionary process in medicine, technology, etc., as the breakthroughs themselves.

I've been told "they can't find anything wrong with you" by the one psychiatrist I thought I would see due to the depression I've had during all of this. What shocked me about her statement (which she felt the need to repeat a number of times, just to get her point across) is that there are tests that show something IS wrong with me, mri's, Doppler ultrasounds, x-rays, but sadly enough, the vast majority of doctors that see a red flag on a film of a 30 year-old woman that is having symptoms RELATING to that red flag will go back to their own little prejudices and ignorant frames of references, thinking that there cannot possibly be something actually wrong with the woman. I have been lucky enough to have found one excellent doctor in Duluth that pinpointed thoracic outlet syndrome, though the majority of the doctors think the probability rate of my actually having TOS is too low for it to be the actual diagnosis. Gee, and even after I went to a cardiovascular thoracic outlet specialist at the University of Minnesota that concurred with the TOS diagnosis. Nice, huh?

I recently finished reading "How Doctors Think" by Jerome Groopman and recommend that all of us in the trenches w/ the docs read it. There is a lot of social psychology terminology involved (for those of us that took it in college), plus it felt like I already know most of what he was saying, but that's “hindsight bias,” another term from social psych!

As far as psychosomatic symptoms go, yes there is a link between stress levels and chronic pain, however before someone gets labeled with a serious diagnosis out of the DSM IV or whatever they're using these days, I think every possible cause for the symptoms should be evaluated for an extended period of time by a number of various doctors at different facilities. Being labeled with a somatization disorder when it really is TOS is just plain negligence.

Helen... this truly sucks I do beleive maybe it is the doctors justification for not being able to dx your problem that he is taking he easy way out! Though I had one dooctor who said I did not have TOS altough that was my former employers IME who spent 5 min with me... hang in there we are with you

Jaldridge6I have to say, I have been extremely lucky with supportive family. My oldest sister was diagnosed with MS 15 years ago so we are all aware of pain through nerve damage. It is very different from a broken bone. We know it does not always go away. I am lucky that it is almost too much support. I don't know how to explain it but it became where my mom and mother-in-law were in my house every day doing the laundry and taking care of everything. Sounds great, but you start to feel like a 4 year old. It has gotten where, when I ask, they come which is more wonderful than I can say. I just began to feel like I had no control. Everyone has believed me and believed in me. My dad has been with me for surgeries when my husband couldn't. I could not have gotten by without them. The first night I had "symptoms". Was after a traumatic surgery. Mentally I was unwell and I couldn't move. I was home with hubby and 3 young kids. My sister slept over and she and my husband took shifts for 2 days until they would admit me into the hospital (nice, can't move or stop crying and they won't admit you). Each made sure I had meds every 2 hours and had liquids. My mother and law came to live with us for awhile. Don't know what I would have done without them. So, I'm sorry that others aren't blessed like I have been.

I agree that this country is backward in our medical department. People without insurance, some not being covered, or, like me paying through my nose and many other orafices!

I am also extremely fortunate that through a few bad doctors I found two of three of the best. Dr. Togut, Dr. Schwartzmann and my neurologist, Dr. Pertchik. All have believed me and helped all along. Had a few rotten eggs, besides saying it was in my head to get on with my life. One said I had Lyme disease! I did have unnecessary disc replacement but, that was before TOS diagnosis and I was desperate. Even the surgeon was not sure but deferred to some other doctors and went ahead. He was not surprised when it didn't work.

My husband asks me alot if I'm crying and what is wrong. I don't even realize it but due to pain, I shed tears without knowing it.

Sorry to go off on the depressing! I'm happy I can write here and I know at least you all understand. Thanks, Linda

Hi all
Well I am stuck for words.....what horrible experiences people have had.

For me this has only been implied by a physician who could not see beyond his own self importance. He did not ask me aabout my pain, he came to sort out my breathing. He asked that all my pain meds be stopped and I be put on one med. My pain doc went mad...as if we had not tried that one already!! Arrogance I think is his name!!

Anyway having read your thoughtsI think that I do have to change my approach when I see new Doc. I have tried to be light hearted as I do not want to be accused then of being depressed. Kind of stuck between a rock and a hard place. Laugh and do not think serious, change tack and then they say your are depressed. So many docs cannot think beyond the diagnostic boxes. I will wear no make up, well actually only a dust of mineral powder to stop me lokking deathly white is all I manage, and I will be serious to the point. I will challenge assertively any suggestions that in head, when looks at some results that are inconclusive and ask how he would feel sat in my seat. Like that man said if a fisherman comes back with an empty trawler, it does not mean there are no fish in the sea!!

I try to be light hearted because I have to live life the best I can for my son and family. My hubbie would collapse in a heap if I just started crying all the time and boy I could cry alot. He knows that and knows that I laugh to get thru the day. Docs see you for what 45mins. I think that it is far easier for them to pass you off to psych that deal with you as too complicated and means have to spend time. Thankfully not all docs are like this, my surgeon and pain doc and GP are fab..I just hope this new specialist will be as good and not dismissive.

The med insurance situation is horrendous and I agree that medicine is tied up in so much bureaucracy that it is backward. I cannot understand med insurance..you have it to help when you are ill, only to find that they wont cover this or that or yes you can then they stop. THe whole point of paying insurance is that you can rely on it. People in insurance business are just continually finding ways not to pay up....it is so extremely unfair, the profit they must be making must be well...and of course the premiums go up if you use it. The docs must be in a mess when trying to treat patients when having to fight with insurance. And each insurer I suppose is different and each state is different?
I am just lost for words and feel for you all when you have this to fight as well as being in pain and needing treatment.


Hx