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Posted 4/19/2009 12:09 AM (GMT 0)
My neighbor brought me home a DVD from Mayo this past week.

I was so excited !

It was only 15 min and my husband sat down to watch it with me.

mad

I cannot believe that Mayo is stocking and passing around crap from 1997 which basically lets you know you can "wean" yourself off all those medications if you walk everyday and the ol' posture thing again - OH - and diet people - DIET -

"there are NO dietary restrictions"........just eat a healthy diet - get that milk in -

....and of course - we talk ourselves into being in pain and we can talk ourselves right out if it - the clinical psychologist who looked like a hired infomercial actor said we set ourselves up for the stress by dwelling on the pain.

*puts face in pillow and screams*

For someone seeing that with hope of helping their family understand things better - it put it all back in my lap that somehow, I have control of all of this thing.

Somehow, I'm still just a fat lazy beotch that needs to eat her carrots, get off that heating pad, throw away those pills and smile darn it.

OH - and here's the kicker - do NOT sleep or rest during the day - don't you DARE rest - silly girl, that's where all that fatigue is coming from.

Posted 4/19/2009 12:13 AM (GMT 0)
oh and just for the record - I didn't say "darn it"......rofl !!!!!!!!

:)
Posted 4/19/2009 1:24 AM (GMT 0)
There was a post over on the Lyme forum that kind of puts this stuff into perspective:

https://www.healingwell.com/community/default.aspx?f=30&m=1395417

From one of the posts:

"Mayo is a waste of $ and time. I've known of more people who went to Mayo with high hopes, only to be completely disappointed. Basically, their modus operendi is proving whether a patient's symptoms are psychological or not, and they tend to err on the side of psych vs. not psych. They do not believe anything except their own test results, and if what you have doesn't fit in a nice neat diagnostic box that they themselves have established, they automatically label you a psych case and send you home with antidepressants. I know far too many local doctors more than willing to give me antidepressants, so why spend all that $$ and time going to Mayo to get the same??? Just not worth it in my opinion..."

Kind of says it all yeah

lol .... there's a saying among Lymies that when you're finally sent to the psychiatrist, it's a pretty good indication you have Lyme  shocked

Posted 4/19/2009 1:27 AM (GMT 0)
This is irresponsible and indifferent on the Mayo Clinic's part. With this perspective people with fibromyalgia can be ignored.

Donnaeil
Posted 4/19/2009 3:02 AM (GMT 0)
I thought the same thing - irresponsible - this morning , the costa chondritis is so bad - and there is a huge lump on the back of my ribs - bundled up muscle and hurts like hello -

I asked my husband to rub it out - he was like - wow that's big - I can see it - I'm like - no you don't -

How can you see something and feel something that doesn't exist smilewinkgrin

And what a coincidence - I wake up like that , in intense pain - and it's raining - before I even looked out the window I knew it was fricken raining - the numbness in my lips and face told me so.

This discovery process is like moving thru the stages of grief - jumps around on you and it would be easy to get stuck in anger and resentment.

I'm trying to jump straight thru to acceptance and really don't have to convince anyone of anything. I know darn well how I feel and what's up with that. Gotta learn the shoulder shake off -

 

Posted 4/19/2009 4:48 AM (GMT 0)
 

   I feel like I have to take a stand & defend Mayo Clinic.

   In December of 2006, I was diagnosed with Fibro. That was after 4 doctors in our area couldn't figure it out & I had pretty much been home bound & in pain. Thank goodness a Rhumy (sorry for the spelling) listened to me & I had gone through 3 months of epiderals, finally to feel somewhat normal again.

   Excuse me for going around the bush to explain this. At the same time, my husband had undergone Crohns surgery, developed an infection & once again, our doctors couldn't figure out why he kept having so much pain. Here's where Mayo Clinic comes into the picture.

   His gastroinologist suggested we go to Mayo. We were at the end of our ropes & went to the one in Rochester, Minnesota. 15 minutes into the appointment, the doctor said..."I want to run a test to make sure, but I believe when they inserted a drainage tube, a nerve was severed, causing all this pain" Bingo! He was correct! He gave him a shot where the nerve is & took care of it. They did make it clear he would have to have shots now & then, but gave us names of pain management doctors they recommend in Indianapolis. (We live about 60 miles from Indy)

   Back to the Fibro. While in Minnesota, I picked up a folder & seen they had classes on managing Fibromyalgia. I was able to attend one of them & happened to be the only one signed up that afternoon so it was one on one with a registered nurse. She was very informative to me. She did not say anything about it being all in my head, explained it is important to get proper rest, nothing about a diet for it (common sence let's us all know what we should & shouldn't be eating.....(my ice cream with chocolate syrup is waiting for me after I finish this letter...lol)....that it is a condition that seldom completly goes away & tips on how to deal with it, also to be very carefull about promises you read about telling you how they can completly cure it. She gave me phamplets of information, like explaining it to your friends & family, & simple exercises & stretches that can be helpfull. I also have a cd she gave me & I'm going to look at it again & see if i get the same interpretation as was told here, honestly, I don't remember feeling like that.

   We met many people while there & heard many comments on how this was their last hope. They aren't miracle workers, but I can't say enough good about our experience there. ~Sande~

Posted 4/19/2009 12:01 PM (GMT 0)
I think the thing with Mayo is everyone expects them to be on top of the game - HIGH expectations - latest greatest info and treatments on everything !

The DVD from 1997 being on a shelf for one to just come by and pick up off the wall - really really surprised me. They need a new one .

Ironically enough - my neighbor goes to the Rochester Mayo -  her 24 yr old daughter was misdiagnosed from the age of 16 to 22 by our doc down here - the Doc who finally gave me a clear dx of fibro! - CeCe has rare tumors growing inside her spinal column wrapping around the nerve endings - and Mayo has given her GREAT treatment - ranted and raved about them -

I am happy for you and your hubby that you're better !

I also realize that the folks working the trenches with the patients have no responsibility for the educational material disbursed.

 

Posted 4/20/2009 4:51 AM (GMT 0)
I'd be very disappointed to be given a dvd from "1997"...It's important to remember that we need to be our own health advocate and get ourselves as educated as possible. I can't count on two hands how many stupid comments or remarks doctors have made to me in my life so far !
Posted 4/20/2009 5:04 AM (GMT 0)
Sure seems weird of Mayo to have something like this coming from a top notch clinic,
Makes ya think...I think I reserve my opinion on this till I've been to mayo to experience it...
Thanks for the info though.........
Posted 4/20/2009 5:18 PM (GMT 0)
I am new to the site but I had to add to this post - I was just diagnosed this past Friday with Fibromyalgia at the Mayo Clinic in Rochester.  I only live 40 miles away from there and yet it took my doctor in town over a year and half and finally just thinking I was crazy and getting tired of me to finally refer me to a rheumy at Mayo. I had the most thorough exam and testing done - and the doc took me very seriously. After the moron's here in town it was a huge relief. They just thought I was depressed and anxious - gee, I wonder why??  I will also be going to the fibro clinic to learn whatever they info have to offer me.  I'm sure I will be asking you guys a ton of questions also.  I will introduce myself on the site soon - at work now.  Thanks!

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