Disappointing Mayo Clinic Treatment

[Kati]

Brain zaps--
It feels like someone is touching an electric fence to my head about every fifteen minutes

I have experienced those when tapering down on an anti-depressant, they are not pleasant.

I'm beginning to kinda lose hope in this. Part of me feels like they're trying to reinforce that it's psych. However PT has helped me walk in moderation but the worst symptoms are by far the cognitive effects, memory and inability to understand people when they speak. I have serious intolerance to sound and touch. I want to test for more infectious disease but I know that at some point they're going to shut me down

Clearly you are still sick and when you have such cognitive deficits, it is hard to do just about anything from listiening in class or being at work. PT helped you walk moderately, great. It doesn't mean you are cured. Be careful, and seek out a second opinion with a reputable ME expert.

 

[trishrhymes]

Am i understanding right that you are at the Mayo clinic now as an inpatient, and seeing other patients refused pain relief for period cramps, and being left on the floor and walked away from when they faint. That's appalling.

I confess if it were me I'd be tempted to walk out the door.

Do take care.

 

[Kati]

I watch them induce fainting in a person with POTS and LITERALLY STEP OVER THEM, move their feet out of the way, and close the door. I understand the conditioned responses and trying to tone those down but I just feel like it's overkill.

They seem to portray POTS patients as attention seeker. That is very worrisome.

 

[Quemist]

Am i understanding right that you are at the Mayo clinic now as an inpatient, and seeing other patients refused pain relief for period cramps, and being left on the floor and walked away from when they faint. That's appalling.

I confess if it were me I'd be tempted to walk out the door.

Do take care.

I do feel like walking out the door. I don't agree with the treatment but I'm having such bad problems with my family in this regard. I don't know what's going to happen.

 

[PennyIA]

@PennyIA. did you have the same sort of physical therapy that @Quemist describes?

And now they've get you walking, @Quemist, I guess they may want you to walk more - that's where you need to be careful and not overdo it and set off a relapse.

'brain zaps' ?

Yes, they were VERY dismissive of my request for the meclizine, my prescription treatment at that time for dizziness and no one ever discussed that I might have severe POTS at the time (which I think I did). And I kind of got in their faces about testing me for B6 toxicity (they are the ones that finally found it... but only after I had a very sound discussion point that they couldn't get around with their panel of 10 doctors.... once they found toxicity they didn't offer any recommendations for treating it... after all, I was there 'for false illness beliefs' ... so they weren't very happy when I forced them into testing me for something and then finding out I actually had something wrong with me).

I did feel like the GET helped for the short term. Because I was under-attempting exercise after my first major crash I didn't want to push myself too hard. So, walking for 1 minute on day 1, then 2 minutes on day 2, etc... it did feel good to get a little bit more and feel like I could accomplish more. But it wasn't sustainable.

Additionally, I had been taking some pretty heavy doses of pain medicine thinking it was the only thing that was helping me, in fact, it was doing very little for me other than increasing my fatigue... so stopping the narcotics did help.

The occupational therapy was nice, though I didn't learn much from it, I'd already done what I could to make everything I needed to do around home care/etc easier.

Deep breathing, meditating, and super simple yoga seemed harmless enough. Counseling talking yourself out of catastraphizing didn't cause harm, didn't help things either... seemed kind of like a waste of time.

It was the GET that caused the damage. I crashed really hard after the treatment. At the time, I was told this was part of the study. After I crashed I never got any additional follow up calls, so similar to PACE, I think they blame outside factors for crashes and are avoiding reporting the harm caused by the treatment. :-(

 

[Jigsaw]

Hoooooooly cow. Wow, I now feel a lot better knowing someone has actually done the PRC program. I can understand central sensitization, it makes perfect sense that there are more receptors building in response to my condition.
They took me off all of my medications. Clonazepam and Effexor. I'm having brain zaps and my comprehension is getting worse. I just feel like most people in the program are in the same boat as me in terms of treatment options but Im not even sure right now what to do.
My friend was having period cramps and they wouldn't even let her take ibuprofen for those. I watch them induce fainting in a person with POTS and LITERALLY STEP OVER THEM, move their feet out of the way, and close the door. I understand the conditioned responses and trying to tone those down but I just feel like it's overkill.

Holy c***!!!!
That's not medical care, that's medical I Couldn't Care LESS!

Whatever happened to "First Do No Harm"?

Is that on auto-delete in the presence of huge profit???

Medical ignorance is one thing. Barbarism is quite another.

How is what they're doing even legal? And surely you can't just stop drugs like Clonazepam or anti depressants without a tapering period.

I am staggered.

It's dangerous, it's cruel, and it's generating these people a whopping income.

Just my opinion, of course.

 

[Jigsaw]

Am i understanding right that you are at the Mayo clinic now as an inpatient, and seeing other patients refused pain relief for period cramps, and being left on the floor and walked away from when they faint. That's appalling.

I confess if it were me I'd be tempted to walk out the door.

Do take care.

-Worse, they moved the fainted person's feet out of the way so they could leave the room.

Walk out the door? - I think I'd be puting together a class action for cruel and unusual behaviour plus medical negligence.

I'm absolutely shocked that they are treating people like this. Shocked. Disgusted that these medics are exploiting illness for financial gain, and inflicting an enormous amount of quite uneccessary distress and pain in the process.

Seriously, how is this legal? It sounds like an extreme drug addict's rehab programme, but set in a Victorian asylum.

Please, please look after yourself. This can't be doing you any good at all. You know we don't cope with physical, mental, or emotional stress. From what you've said, they're deliberately piling on all three.

What's their treatment for cardiomyopathy- a quick 25k marathon before lunch?

 

[halcyon]

calisthenics like leg raises and hip raises

Yeah I'd be really careful with stuff like that. There is a recent controlled trial that showed that neuromuscular strain can exacerbate symptoms of ME.

 

[Jigsaw]

Yeah I'd be really careful with stuff like that. There is a recent controlled trial that showed that neuromuscular strain can exacerbate symptoms of ME.

Like we need a trial result to know that already. - Good spot, though, @halcyon

Jeez, this stuff, together with the BDS/ BDD classification nonsense, just makes my blood boil.

I've never had any contact with @Quemist before, but man, hearing what the Mayo are doing makes me want to come and rescue you! And everyone else.

Even my GP agrees that all this blaming the patient is disgusting. She said last week that just because we don't have the technology or tests yet to be able to identify exactly what's causing ME/CFS etc, it certainly doesn't mean we're making it up.

I was further encouraged to hear her say that one day, when we do have the right tests, the medical profession will look back at this time of "Blame The Patient If You Don't Know What's Wrong With Them, Because If You Don't Know, Obviously It's Psychosomatic" and they will be ashamed.

 

[mrquasar]

If you're in any way uncomfortable with the treatment you're receiving, you have the right to say no. I realize your family is likely pressuring you into this, but at the end of the day, it's your body, and NOBODY has the right to force you into any kind of treatment without your consent. As far as getting your family on your side, show them this Op-Ed by Julie Rehmehyer https://www.nytimes.com/2017/03/18/...t-wrong-on-chronic-fatigue-syndrome.html?_r=0. Or the TED talk by Jennifer Brea.

I know you might not want to hear this, but you and only you are responsible for your treatment choices. It can be easy to forget this if family is getting involved in your treatment, but you can't afford to forget it. You have to be assertive and say no if and when you no longer feel comfortable with the treatment you're receiving. No one else can do that for you, and no one else can tell you if and when that decision is appropriate.

Best of luck with your treatment,
Tom

 

[Snow Leopard]

Sorry. @Quemist, that's ridiculous and they are doing harm. The Central Sensitization theory is a theory,

It's not a "theory". A theory requires evidence. It's just a hypothesis that has not been demonstrated experimentally (biologically).

 

[Kati]

It's not a "theory". A theory requires evidence. It's just a hypothesis that has not been demonstrated experimentally (biologically).

Thank you.

In other words, it is an explanation given to patients which serves to fill the big gaps in the science in explaining ME/cfs, IBS, fibro, interstitial cystitis, POTS, chronic pain, PMS, painful periods, MCS ETC without having to research these conditions. Treatments for these is supposedly all the same, CBT and GET. In the UK and most of Europe, they call it MUS (medically unexplained symptoms). It all seems to make sense by the story they tell the patients (your brain is freaking out, but your episodes of pain, fainting, eleveated heartrate, hypersensitivity, fatigue) but it's not dangerous, and they tell the family members not to cater to their needs. That is going to unravel pretty quickly with the science that's been published lately and the science that will be published.

Here are a few papers published lately which shows it's not all in our heads.

 

[Jigsaw]

Blaming the patient via MUS, BDD, Central Sensitisation, etc, seems to me no different to an abusive partner blaming their wife/ husband/girlfriend/ boyfriend for the physical, mental, and emotional abuse they inflict on them.

- It's about power and control through manipulation.

- It's a catch-22 for anyone who seeks help because they want to be well.

- It's a get-out clause for ignorant medical practitioners.



And it IS abuse.



The only difference I can see is that it's probably easier to extricate yourself from an abusive domestic relationship than an abusive medical relationship.


Society is against domestic abuse. Why isn't it against medical abuse?

 

[Thinktank]

They took me off all of my medications. Clonazepam and Effexor. I'm having brain zaps and my comprehension is getting worse.

What the .... They took you off clonazepam and effoxor without a slow taper?
That's absolutely criminal, no wonder you're having brainzaps, you're enduring benzodiazepine withdrawal syndrome.
I'd go back on the clonazepam if i were you.

 

[Rvanson]

Most doctors know nothing about nutrition.

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.

 

[Quemist]

What the .... They took you off clonazepam and effoxor without a slow taper?
That's absolutely criminal, no wonder you're having brainzaps, you're enduring benzodiazepine withdrawal syndrome.
I'd go back on the clonazepam if i were you.

I did a slow taper for a couple months independently. I had to drop out of my doctoral program and I figured this might be the best time to try it out. Im not feeling well at all- but I do want to give a trial of no medication and see how I respond. So far, not good- but it's looking like major panic attacks and bad depressive symptoms.

 

[Quemist]

I do think the occupational therapy is helping and they give us a lot of coping techniques, which are beneficial.

I think that they're trying to have some explanation for why so many people have catastrophic responses to chronic symptoms. I can understand trying to desensitize someone to their symptoms and not focusing on the fatigue is helping- but my life outside of the program isn't looking so wel (if you can't tell from the family problems).

I was formerly seeking my doctorate in chemistry and for about three years the fatigue was so bad I had to leave. In the process, I've had so many terrible neurological symtoms and memory issues that going back to work seems pretty hopeless. I'm trying, as we all are- but it isn't comfortable to say the least :/

 

[MeSci]

I was formerly seeking my doctorate in chemistry and for about three years the fatigue was so bad I had to leave. In the process, I've had so many terrible neurological symtoms and memory issues that going back to work seems pretty hopeless. I'm trying, as we all are- but it isn't comfortable to say the least :/

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.

 

[lcnewross]

I brought these posts to David Tuller and Julie Rehmeyer's attention. I think an exposé is in order. This is maddening. And why the heck do people still think Interstitial Cystitis is a psychosomatic disorder?! They can distend your bladder under anesthesia and see actual damage to the bladder lining.

@Quemist I am sorry you are having difficulty with your family. I hope with time your family realizes how sick you are. It is an issue I have had with my parents, although not to this extent. Up until recently, my parents were convinced it was my thyroid because I have the antibodies for Hashimoto's, even though my thyroid levels were normal. I saw my mom's endocrinologist, who put me on an antithyroid medication (TSH .61 at time). I told my parents I took this medication only for a few days and they were livid. They were absolutely convinced this medication was going to reverse my condition. They based this on two things: (1) my mom's ongoing thyroid issues and (2) this belief that the world has solved all the medical mysteries because it is 2017. Only until recently have my parents started to realize just how sick I am. I showed them Jen Brea's TED talk and links from Open Medicine Foundation. My dad seems to acknowledge this more. My mom still gets frustrated with me because she thinks my moments of despair are signs of me giving up. She thinks I am one appointment away from the answer!

There needs to a paradigm shift within the medical field. This notion that psychological treatment is the answer to diseases we know very little about is absurd. This is the history of epilepsy and MS. Now both are recognized as very debilitating, life changing illnesses.

 

[trishrhymes]

@Quemist, coping with ME/CFS, and depression and panic attacks is a more than full time job. You are doing the best you can in very difficult circumstances, making best use of the occupational therapy and getting through each day as best you can.

Your posts on here are rational and coherent and show that you are mature and self aware. You are intelligently trying to understand the approach at Mayo, while keeping an open mind and questioning. I think you are remarkably brave and sane and will gradually find the best way forward for yourself despite being faced with huge challenges.

If I were to give any advice to you, it would be to be kind to yourself. Listen to your body and do what you feel is best for you. You may have a few years ahead of you needing to rest a lot, and perhaps go back on some of your medication - that is not failure, it's recognising your needs.

As to your future, there is so much good research going on into ME/CFS at present, and there may well be effective treatments around the corner. Don't give up hope. There is no reason to assume that you will never get back to your academic career, or find an alternative career that is just as satisfying.

Your family have, as I understand it, been 'brainwashed' into the Mayo approach. One of the hardest things a lot of us find is educating our family and friends, and forgiving them for getting it wrong. In your own time, I hope you will find a way to enlighten them - there are lots of good resources.

Be kind to yourself.

And please forgive the ramblings of an old lady and ignore anything I've said that doesn't feel right.

Hugs.