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Disappointing Mayo Clinic Treatment

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
That is rough, @Quemist

Even though I understood your trying it, and I thought you might need to try it,
to know both, 100% for yourself , that it does or does not help YOU, individually.
And so your family can also see the results too, whatever they are....and them know you tried it....

It does sound like you will be forced into the difficult position,
of deciding at some point, for yourself,
how far to go with that program.
When you might need to say, that is all,
despite whether or not your family comprehends.

I am not a doctor, but I think a small bit of med is sometimes a big help.
And I agree with Kati, that there are physical processes involved.
 

keenly

Senior Member
Messages
814
Location
UK
While that quite true, but they are learning that Vitamin D is important. Beyond that they no nothing, and
Vit. D doesn't cure ME/CFS, although it might help you with seasonal depression and bone loss issues.

The Mayo Clinic is a huge waste or time and $$$ for anyone suffering from ME/CFS.

It doesn't surprise me that a doctor at Stanford is looking for a cure for his son. It's a whole nother story
when this Dx hits you at home with a loved one. "Just walk around for half and hour" doesn't cut it at all.

Yep!
I ask on here before asking my GP. He is clueless.
 

Woolie

Senior Member
Messages
3,263
I can understand central sensitization, it makes perfect sense that there are more receptors building in response to my condition.
I know I've already ranted on about this "theory", but can I just call bullshit now when I see it?

Or maybe I'll just roll with it? How are everyone's receptors today? I think mine are slightly reduced, because I did some resistance training. What about you guys? Those damned pesky receptors, I want them gone, I tell you! Gone!
 

Woolie

Senior Member
Messages
3,263
...Or maybe its my "conditioned responses" playing havoc again. If only I weren't so rewarded by my illness, then I might get better!

I SO wish I had the money to afford a little punishment therapy at Mayo, that would surely do the trick. They are such experts! But alas, I'm too poor!
 
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Woolie

Senior Member
Messages
3,263
I think that they're trying to have some explanation for why so many people have catastrophic responses to chronic symptoms.

OMG, the little snippets that you are sharing with us @Quemist are like something out of an Orwelian novel!

Their use of the term "catastrophic" is a reference to "pain catastrophisation" theory, which is the idea that people wind up with unexplained pain because they worry and fret about a tiny bit of (probably normal) discomfort and make a "catastrophe" out of it. This enhances the discomfort many times over. It is a deeply disrespectful way to conceptualise another person's pain. Its essentially saying - that pain's been created by your own crazy worry and fear.

The various gems you've described so far - receptors and sensitisation, "conditioned responses", "catastrophic responses" - together they paint a frightening picture of Mayo. And I'm worried that these people are getting into you head, you're starting to believe this stuff. Not surprising, you're there as a resident, so very vulnerable. And they do make it sound so scientific, don't they? So logical!

But please don't let them get into your head like this! All this is pseudoscience. Its no better than homeopathy - actually its worse, because you're learning to view your self as a deeply troubled individual, who needs fixing, and an unreliable witness to your own pain and suffering. That will be harmful in the future.

I recommend a course of coming here daily, sharing with us the latest "insight" you've been given about your condition, and allowing us to joyfully disabuse you of that notion.
 
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Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Quemist The Mayo dilemma that ME/CFS patients face can be very confusing for families because Mayo is known as a top-rated medical center--the ultimate place to go--people fly there from all over the world for treatment, but somehow they have totally but spectacularly missed the boat with ME/CFS.

It is hard for families to believe that such a prestigious center could screw up so badly. I knew an M.D. with ME/CFS who spent a week there and his comments were, "the shuttle drivers were friendly but 'hold the Mayo.'" (for those not in the US, that is a term used when ordering a sandwich and telling them not to put mayonnaise on it.)
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I'll be honest? Having been through the program myself? I still agree with everyone here. It sounded so reasonable and not at all condescending when I was in the program. But, in all reality. When the pain is at a level of 8 on a scale of 10? We're not having a catastrophic response to a minor pain.

Admittedly, most of my chronic pain isn't an 8 on a scale of 10; but that's what they had me believing when I was there... that I needed to distract myself.

To be honest? though... distracting yourself when you are at a 3 of 10 or 5 of 10 is actually quite helpful. I know I still need to have a little chat with my husband. He sees me multi-tasking... either knitting or online while I'm talking with him while he's getting ready for work. And he feels like I'm not paying enough attention to him. The issue, is that while I'm in pain... while he's getting ready... I'm using the knitting and online stuff to help distract me from the pain so I can pay attention to him better.

If I hadn't come to my senses after my flair up post-treatment... I would have never sought help when my gall bladder started to cause my liver to fail. Because, lo and behold, the extreme pain WAS something that needed to be looked at. Sadly, because of my history (the trip to mayo and lack of diagnosis)... it took 11 trips to the ER over a period of a year before the first doctor even looked past the medical records to run an ultrasound of my gall bladder.

Mayo is simply regurgitating the bad recommendations from the PACE trial for anyone that doesn't fit a profile of a clear medically understood condition... and even though I'm not in the UK? I still feel like my increased impairment caused by the protocols I was taught at Mayo caused my worse condition and that's PACE's fault...
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
It is VERY disconcerting to learn how far off, Mayo is with this illness.
That is terrible.
And makes it even harder for us to get the acceptance and support and understanding,
of family members. Awful.
I am sorry you are in this position, @Quemist

I hope it will work out ok for you.

It does remind me of years ago, when I was devastated with the effects of this crushing illness,
and the "Professionals" were all talking about what "secondary rewards" I was getting,!

from not being able to do both the work and studies and life activities, that I valued so much.?!
And the things I just needed to do, the basics.

NO< there were not secondary rewards, "inspiring" me to be sick.
Amazing they cant see the grief we go through, at losing so much of our hopes and goals.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
Sarcasm...

Yes, I truly love the odors coming off my body because in order to continue to work as much as I can because I would never be covered for assistance... I have had to give up daily bathing ... what a great reward /sarcasm.... grrrr

And attention seeking... that was another thing... we're just lonely so we need more attention, and doctor's offices are the best place for it... that one drives me up the wall. As if!!! I would never want attention from the bozo's who are telling me it's all in my head.

My new husband is struggling because every time I have a symptom flare up he gets nervous and wants me to go to a doctor for it. And I'll do just about everything in my power to avoid it. The last time I caved, it was over a headache that lasted for two weeks. Doctor told me to come back if it didn't go away after three weeks (waste of time and money)... thankfully it *did* end at the three week mark...

He just hasn't seen the mistreatment we tend to get from them. And doesn't yet understand that when I explain my symptoms how the doctor's eyes glaze over.

I'm pretty independent and normally wouldn't ask him to go with me. But, I'll be honest, he went with me to my last dentist appointment and it was almost like there was a switch flipped. My questions and concerns were addressed clearly and quickly and without a big disagreement about the treatment options. I went in wanting full dentures; and having had wanted full dentures for about 10 years now and getting told no, and not now... and maybe when you are older, etc, etc... and this time - a new Dentist (after several tries at other new dentists)... I went in asking for options and discussion as to whether or not full dentures would be an option. They came in after looking at my Xrays and said - "You are right, you need full dentures. Let's get you scheduled." I'm seriously tempted to bring him to all my doctor appointments after that little mini-miracle.
 

trishrhymes

Senior Member
Messages
2,158
Thinking of you @Quemist and sending hugs.

We have been piling in with lots of advice and information. I imagine you may need to set some of this aside to digest later.

I hope you can focus on getting through each day and listening to your body and being kind to yourself - don't let those Mayo people force you to do anything that doesn't feel right.

:hug::hug::hug:
 

Jigsaw

Senior Member
Messages
420
Location
UK
Another thought is to see women doctors. My PCP, cardiologist, dentist--all women.
@Sushi

Hi Sushi, :)

I'd agree with you re: only seeing female doctors to avoid these attitude issues if it wasn't for the fact that 3 of my very worst medical experiences - actually, make that 4 - have been at the hands of women docs.

Being female myself, and having experienced the patronising attitude that so many male medics have towards us poor, hysterical creatures (and yes, there have been a whole lot more male medics on my journey than female), I, too, thought that female medics were the way to go.

Actually, I'm now remembering at least 5 rotten, miserable experiences with women medics, 2 of which actively endangered me.



One was an endo who insisted to me and my GP that I had to reduce my thyroid meds. Doing so precipitated my oestrogen breast cancer within 4 weeks.


One was a GP who told me to go and "buy a pretty scarf to cheer [my]self up with" and stop wasting her time when she had "genuinely sick people" to see when I was forced to see her as Duty Doctor when I felt suicidal. Refused to refer me for counselling.


Another was a nurse who refused me pain relief when she was about to remove the last and the deepest of 3 chest drain tubes after my mastectomy and recon, on the grounds that it didn't hurt that much. She, too, had "really sick patients to deal with" without wasting time "pandering" to me (although how having a cancer-riddled boob chopped off discounts you from being "really sick" is beyond me). I stood my ground and got the Enternox I needed.
She did later apologise, but only after she'd found it so hard to remove that she'd had to do everything but put her foot on me to get enough leverage to yank the damn thing out, and had literally broken sweat with the sheer effort. She said that she had three teenage sons at home and was used to them making a fuss about nothing, so assumed the same of her patients.


Another was my chemotherapy Sister, who was just a total bitch. She told me that my sudden weight gain was nothing to do with having been put on 100mg of steroids, and that it must be because I was lazy and gluttonous (I went from 9st / 126 pounds to 12st/ 168 pounds in about a month and threw up every single day, so even I had been "gluttonous", it all would have ended up in my sick-bowl anyway). I used to get given copies of my weekly chemo blood test results by the chemo nurses, and she publicly accused me of wasting her nurses' time, bawling me out in front of all the other oncology patients in the chemo room.


Another was a very obese GP who, because I weighed several stone less than she did, refused to take my hypothyroid condition seriously when I told her that one of my signs was that I'd gone from 9st to 11st despite having no appetite and eating very little. She scornfully said that 11st wasn't a weight problem, and declared that I must have body dysmorphia if I thought so - my complaint was that I had suddenly gained 2st on top of my normal weight, and I wanted my thyroid tested. I wasn't on steroids or anything else then. She refused simply because she was considerably heavier (and shorter, and rounder!) than me. She looked a bit like a Weeble (for those not in the UK, or in the UK but not old enough to remember, Weebles were toys that looked a bit like a fat skittle with a smiley face, and were fattest in the middle. They were weighted so that you couldn't push them over without them bouncing straight back up again. The slogan was "Weebles wobble but they don't fall down".) It took me another 5 years to get my thyroid even tested because of what she put on my notes about my "issue" with my weight.


Two of my very best, kindest, most compassionate, interested and all-round loveliest docs have been male. One of them rang me at home, out of hours, when he heard from his secretary that I was upset/suicidal. He was SO kind. He spent over an hour of his own time listening to me howling down the phone.



I think really good docs are as rare as rocking-horse poo, and it's not gender-specific. It seems to me that it's heart and brain specific. - The heart for them to be kind and non-judgemental, and the brain so they can help you work out what's gone wrong with your system :)

J x
 
Messages
87
Location
Savannah, GA
I think that you need to focus on your illness and not the previous plans. You may get well enough to do it, but you may have to accept that it is no longer possible.

I managed to get an MSc in my 50s, having become ill in my 40s, but no way could I do it now.

It's worse when you're dependent on family - all I can do is to advise you to do what you think is right based on what you read here, rather than on what they say. Sadly, because of the appalling way people with M.E. have been and still are treated, people without the illness really don't understand it at all, with a few exceptions.
Thank you for the words of encouragement. I have been having a lot of success with refocusing my efforts on other plans. I love science, i do hope i can return!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK