Why do we hear and see news information and talk shows about EVERY ailment in this world except TOS? I wonder why no one knows of this? I feel like we are the leppers of the world. Is it because no one knows what to do for us that they don't want to speak about it? Very frustrated.

Linda

I think this is the case because the symptoms can mimic so many other things; there isn't a true consensus (that I know of) about which tests are 100% definitive for it ( i'm sure this will stir some "stuff" up); the sx vary from person to person. That, and doc's for the most part aren't taught about it, and what they hear from their colleagues isn't true. oh, and for the most part we "look" healthy. I had a "friend" in school for PT who had a teacher say that RSD and TOS weren't really illnesses, that it was all in your head.
arggggghhhhhhhhhhhhhh......

good thread Lin!!

I've been questioned about pain meds because I look "healthy". I try not to outwardly show my pain because it does not go away. It is not like a broken bone, or after surgery. IT does not go away. I did have 6 amazing years pain free. But while I had it before and while I have it now, it is here.

My husband and I were discussing pain meds. He had surgery. He is healing. I am not. I am told not to exercise. NO PT. Just rest my trap muscle. How am I going to get better! I go for my appointments and am told come back next month. My hubby can wean off meds because he is healing. What do I do.

nobody wanted to talk to me about tos, mostly the orthopedic doc that diagnosed it. My pcp at the time, I felt, was perceiving me as a histrionic hypochondriac.

ALL I wanted was one person to listen to me, and perhaps that one person taking a chance with maybe some amytryptillin (sp?). I decided to travel 100 miles thru a big city to my husband's hometown to see the family doc we grew up with, and finally, finally, someone sat down and listened. I had shaded in the places on my neck, shoulders, traps. arms and scapular area.
He looked at that, listened to me (took maybe 20 min.) and then ordered an mri which only showed c-spine stuff, but enough for him and me to feel comfortable trying the elavil (amitryptillin). That night and every night since then I've slept better than I EVER had to that point. I didn't realize I wasn't sleeping well, I NEVER HAD. Possibly some of my relief was just the placebo effect of having someone not absolutely blow me off. He listened, he ordered and I'll bypass the big city anytime for the good old country doc who, despite what they think in the big city, knows his stuff better than any of them. My best to you. phoebe

I do think that no one wants to deal with us because they cant fix us.. The reason i think docs have such a problem with us and beleiving us is because its not something you can see in a MRI... and there is no one diagnostic test that says for sure HEY THIS PERSON HAS TOS....

To me if i a doctor cant see it an xray, MRI and so on they dont beleive it is there and therefore they dont want to try and help you because they know they most likely they cant fix it!

Sorry for rambling but just my opinion... .

Pain free hugs

I think those are both good points Linda and Wberry..... People look at you funny when you say I can't do X because I hurt. Then they see or hear that you take X pain med, and think you're just looking for a fix (*cough* ER trip *cough*). I too try not to show the pain, but I'm starting to let the people around me know when I am hurting, so that HOPEFULLY they'll understand - a little.

Wberry- you're right- most docs would to the emg, mri, xray, blah blah blah, not see anything too abnormal and then just dismiss you as a headcase. Where are you located? Keep trying to find those that won't do that. Look at our sticky with Dr's names at the top of the forum. I happened to luck out and get referred to a PM (trained as a neurologist, so double whammy of good luck ) who DIDN'T look at me that way, who actually seems to care and listen and wants to help me get better. That, and he is a no-BS kind of guy...good in my book.

Well Lin Look at it this way, you will not be placed upon the Hollywood Walk of Shame next to Paula Abul... Yes she required her theraputic meds, but the white powder surely was not "pancake" foundation!!! Than again it may have been the concrete they were planning on using for her star, requirements were each star was to bring their own STRAW ! OOOpps somebody said Coke not Pepsi I feel bad for her just like anybody else here with TOS or RSD though when you take it upon yourself to self medicate is another issue... not saying that took place either is left best to the new term for the super market tabloids now made fancy ..."paparazzi" enough is enough, may her pain be gone not just physically, but the med jokes... trust me at least you have have some assets, we have no money and little to look forward to, though we realize we have each other, the love of God and the hope of a cure most of all we have a sense of humor and take as wel as give !!!

Thanks for everyones input. I agree if they don't see it, can't fix it, kind of brush you off. I have been lucky to find good doctors. Have Dr. Togut who did a wonderful job on my surgery which I screwed up. My local neurologist is who sent me to him through Dr. Schwartzman. My local doc is great and understanding of pain but I want more. Sorry if I'm asking too much. I know we all want more. I don't want to go to the pharmacy and get looked at like "Your'e here again!" It makes you feel worse than you already do. I've had a pharmacist call doctors because they didn't think anything was wrong with me and didn't want to fill my script. Called another pharmacy and told them not to fill them. How humiliating!

MarkA sense of humor is VERY important in all of this. It's one of the only ways you can get by, besides this site.

Thanks everybody, Linda

Hi guys.....

my 2 cents!

We have a syndrome which as already discussed is not visible on the scans or the tests and we are all suffering SUBJECTIVELY and this to me is our issue.
How can somebody else tell me how much pain I have or should have from a misunderstood and misdiagnosed syndrome.

After all a syndrome is just a collection of symptoms with no real things to see on tests or on us!!! Aside from our posture, our body asymmetry or our faces scrunched up in pain or our house that unless we are fortunate enough to have help to clean up is a bloody mess!!!! I want to hire someone to help but unfortunately I feel that my massages are more important for my sanity than a clean house ...cat hair/???? we have a cat???? lol !!!

So Why......do I put my make-up on before I go out, take a shower (only takes me about 40 min. (plus it feels so good and hot!!) ) do my hair and go out looking good, feeling like poop but I put my mask on so I don't get ostracized by the masses and pointed out as a freak who looks like hell....but then they might get the amount of pain I am in.....however I inherited a problem with having to look good no matter what!!

We are misunderstood and misdiagnosed and missed by our loved ones (as we do lose ourselves in our pain and hell....) we miss ourselves, we miss our jobs and on and on and on....

lots of love,
Victoria

Well, I sent 3 email "get well" messages to Texas Rangers baseball player that had the TOS surgery {Hank Blalock??} - but I suppose those didn't even get to him actually. I never got any reply.
Wasn't really expecting one though.
It would have been interesting to hear how how was doing post op.


My chiro is not well known or a big name but he knows his business.
The advanced PT guy that was a teacher to PT students he just had his own PT clinic.
I went to both of them independently on my own - I found the PT guy via his nice website that had TOS info on it. {that site is down now for some reason }
And the chiro - I totally stumbled upon his booth at the local county fair in 04 when i was in a major spasms flare He was so concerned and helpful right then - I felt I could trust him to help me and he did.

Neither one of them has a big name or mega bucks place- but I think that is an advantage- they aren't confined by the traditional Ins/Hospital constraints.

Well I guess I babbled on and got kind of off the topic-

But it got me thinking that these 2 guys DID listen to me and not blow me off. They actually did a lot more of the physical testing than any of the Drs ever did, and much more in-depth testing than what was done by the "traditional" PT/evaluations rx'd by the Drs.
But maybe most of all they really seemed to care about helping me to get better.
Not just -make an appt, see the dr for a few minutes and say a few words and poof see ya in a month. I hated that! most of that run around was for the w/c baloney..

hmmm I guess I still can get wound up about that

best of luck to all of you going thru that system