I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

[Murph]

Thanks for posting your experience in what I'm sure you know is not always the most ... welcoming ... environment for CBT/GET stories. Everyone is different and I'm very pleased you're feeling better!

I've also found that sometimes, while staying under my exertion threshold I can increase my fitness, and it makes a difference.

 

[Quemist]

Have these all improved now? which have you seen the most improvement in?
.

The tingling and numbness has improved but it does creep back occasionally. They had us do "distraction" techniques, which has helped. The brain fog is the most severe- memory is really failing and word-finding is terrible.

What have you been taught to do if you over do it and get PEM?

When we left, they had us make a "difficult day" plan. Very basic things (get out of bed, stretch, get dressed) and a sheet of things to keep in mind- don't take extra medication, call support systems, don't catastrophize, tell yourself it will pass. That actually helped me more than I thought. They did a LOT of scheduling so that we exercised moderation and did our best to not "push and crash"

And what did they teach about pain behaviours? and is PEM classed as a pain behaviour?

PEM is certainly NOT a pain behavior. It's what you do with the bad days that counts. Try do your best to sit but don't resort to just watching TV. Don't lay in bed all day. Talking about your symptoms is very taboo (actually, being on this message board is technically a pain behavor). Don't go back to the doctor if the symptoms are the same as other bad days. Don't drink too much coffee, don't rub areas that are in pain, do your best to not cry about it. Try not to grimace or hunch over, do your best to exercise good posture.

When you were not able to do the heart rate they suggested during aerobic were you encourage to try and reach the heart rate or to do what you felt was OK for you?.

Oh, I was definitely talked to about not getting my heart rate up. They watched me a lot more closely once they saw I was going for a walk and honestly reported low heart rates via fitbit.

What was the aerobic activty that you had to do and how often?

We did about 20 minutes of aerobic activity via walking or stationary bike. Absoutely no running. They encouraged us after leaving to do this three times a week but in the program we did it five times a week.

What have they recommend you to do to continue your recovery process scince ending the course?

They had us make a "two week plan" that emphasized moderation, moderate exercise and a VERY regimented sleep schedule. No more naps for me, out of bed at 8-9am every day, no matter what.

 

[Quemist]

Thanks for posting your experience in what I'm sure you know is not always the most ... welcoming ... environment for CBT/GET stories. Everyone is different and I'm very pleased you're feeling better!

I've also found that sometimes, while staying under my exertion threshold I can increase my fitness, and it makes a difference.

I know that CBT/GET isn't welcome-- because most approaches reported don't work. They didnt' tell me "think" my way out of it- they gave us some coping strategies. They also REALLY emphasized that we were never going to return to the person we were before we got sick-- but they staunchly said that with good mindset we can attempt to have a good prognosis towards having some semblance of life outside of of our illness. GET for us was extremely below most thresholds. I was seeing a physical therapist before the program that was really wearing me out. The therapy at Mayo was so far below that exertion limit to the point that it was very benign. I certainly am not recovered but I am better and I'm not constantly freaking out about how this ruined my life.

 

[Quemist]

What Was The goal?

The goal was for us to feel more comfortable in our bodies despite living with chronic illness. Most people in the therapy were super type-A (doctors, lawyers, judges, scientists, etc) and being sick has compeltely wrecked them. Their goal was to improve function, regardless of how we felt.

Sounds like you have light and noise sensitivities, how have these changed since the course?
Were they discussed?

I am still having some sensitivites, but they're getting better. I'm also trying to force myself to not feel so helpless when I have these sensitivites and push myself to slowly tolerate them, however painful.

 

[Molly98]

Were you in a lot of pain and discomfort sitting for that period and if so what were they teaching you should do about it? ignore it, use distraction? the problem is that such pain and discomfort is completely distracting and can become overwhelming and make it difficult to focus on anything else as I am sure you know, so how then are you supposed to work? for example, I am lying in bed speaking this into the computer, if I was to sit up it would not be long before the pain, diziness, light headedness and brain fog would make concentrating impossible. Thus if I was going to be able to do any work on a computer for example I would have a far better chance of doing it at home lying down.

Did getting used to a stimulating environment make your senses more accustomed to this? did you feel your sensory symtoms improved or that you adjusted? Again from work perspective, if your sensory symptoms are a real problem that you are unable to concentrate, think straight or filter out back ground stimulation, surely you would be better to adjust your environment so that you can manage.

How many of your group had ME CFS? did they all improve, did anyone stop?

Thanks for your answers

 

[ukxmrv]

Given the range of different people in your group was there anyone that it didn't seem to work for?

 

[Quemist]

Seeing as how your career path sounds intellectual rigorous, were there any attempts at rehabilitating your cognitive deficits? Did you have any protracted cognitive exercises that might have provoked PEM? Do you know if historically "concentrating" for any length of time provoked PEM?

What about emotions?

I guess what I am getting at is each of us has PEM provoked to different degree by different physical processes. You are not a roofer or a construction worker. Were they attempting to treat that aspect(s) of you that may be most subject to PEM?

Finally, what was there advice about the potential prospect of hitting that cliff that worries us all - going to far once too often and plummeting and never recovering from that plunge? Did they suggest that was a myth?

That's a really good question. The cognitive deficits are BY FAR the worst impact to me. Doing too much mental work would make me brain-dead for about two days. The fact that I'm typing all of this right now is kind of unreal to me, actually.

They didnt' really give us any cognitive exercises, but that's a very good point. They understand that everyone has their own triggers and to properly moderate yourself.

That "cliff" has been a serious concern for me for a long time. Essentially, they want us to not focus on catastrophizing our issue with "what-ifs" and try to do our best to get better, whatever that may mean... they didn't say it was a myth, but they encouraged us to not think about it.

 

[Molly98]

The tingling and numbness has improved but it does creep back occasionally. They had us do "distraction" techniques, which has helped. The brain fog is the most severe- memory is really failing and word-finding is terrible.



When we left, they had us make a "difficult day" plan. Very basic things (get out of bed, stretch, get dressed) and a sheet of things to keep in mind- don't take extra medication, call support systems, don't catastrophize, tell yourself it will pass. That actually helped me more than I thought. They did a LOT of scheduling so that we exercised moderation and did our best to not "push and crash"


PEM is certainly NOT a pain behavior. It's what you do with the bad days that counts. Try do your best to sit but don't resort to just watching TV. Don't lay in bed all day. Talking about your symptoms is very taboo (actually, being on this message board is technically a pain behavor). Don't go back to the doctor if the symptoms are the same as other bad days. Don't drink too much coffee, don't rub areas that are in pain, do your best to not cry about it. Try not to grimace or hunch over, do your best to exercise good posture.


Oh, I was definitely talked to about not getting my heart rate up. They watched me a lot more closely once they saw I was going for a walk and honestly reported low heart rates via fitbit.


We did about 20 minutes of aerobic activity via walking or stationary bike. Absoutely no running. They encouraged us after leaving to do this three times a week but in the program we did it five times a week.


They had us make a "two week plan" that emphasized moderation, moderate exercise and a VERY regimented sleep schedule. No more naps for me, out of bed at 8-9am every day, no matter what.

Thank you @Quemist for all your answers, lots of food for thought. Well I have completely gone past my bed time as I got so interested, so I would definitely get a slap on the wrist for that one.
I am probably going to be thinking questions in my sleep tonight.
Thank you, goodnight all

 

[Quemist]

Were you in a lot of pain and discomfort sitting for that period and if so what were they teaching you should do about it? ignore it, use distraction? the problem is that such pain and discomfort is completely distracting and can become overwhelming and make it difficult to focus on anything else as I am sure you know, so how then are you supposed to work? for example, I am lying in bed speaking this into the computer, if I was to sit up it would not be long before the pain, diziness, light headedness and brain fog would make concentrating impossible. Thus if I was going to be able to do any work on a computer for example I would have a far better chance of doing it at home lying down.

Did getting used to a stimulating environment make your senses more accustomed to this? did you feel your sensory symtoms improved or that you adjusted? Again from work perspective, if your sensory symptoms are a real problem that you are unable to concentrate, think straight or filter out back ground stimulation, surely you would be better to adjust your environment so that you can manage.

How many of your group had ME CFS? did they all improve, did anyone stop?

Thanks for your answers

I was in a lot of discomfort. They told us to do our best to exercise proper posture and distract yourself if you have pain. I honestly have no idea how I'm going to go back to work right now. 40 hours a week seems like an impossible task, especially when I need to be mentally prepared for anything and work around it. They encouraged us to find jobs that were able to be done in the realm of our disabilities. For instance, I used to be a server at a restaurant. There's NO way in hell I can do that. I need to sit for long periods of time.

I think the stimulus did help me. It was painful as hell on a lot of days but again, I did surprise myself with my ability to push through.

One other woman did have CFS. She actually was much better at exercising than I was. She had done all the tests at Johns Hopkins, spinal taps and lumbar punctures pointed all of her doctors to ME/CFS. Again, back to the "did I really have cfs/me"-- she was pretty definitely diagnosed by a team of very expensive doctors and was up to the highest weights we had in the gym on day three or so. She seemed to be improving with her mood significantly.

 

[Molly98]

Oh, I was definitely talked to about not getting my heart rate up. They watched me a lot more closely once they saw I was going for a walk and honestly reported low heart rates via fitbit.

this did make me chuckle though

 

[Quemist]

did anyone stop?

Thanks for your answers

Several people did quit, some were asked to leave because they were very negative about the treatment for most of the time.

 

[Quemist]

Thank you @Quemist for all your answers, lots of food for thought. Well I have completely gone past my bed time as I got so interested, so I would definitely get a slap on the wrist for that one.
I am probably going to be thinking questions in my sleep tonight.
Thank you, goodnight all

Happy to answer more when you're back on!

 

[Quemist]

Given the range of different people in your group was there anyone that it didn't seem to work for?

Oof. That's a really good question. I felt like compared to most people in the group, my metrics were showing that the therapy *wasn't* working for me. My physical fitness didn't change, my mood actually worsened (I went off my antidepressants there, too). I saw a number of people, myself included, that were unhappy with their work-up and didn't accept the diagnosis. I saw several people detox off of opiate medication and after the program they just hated everyone, hahaha.

 

[Strawberry]

Hi @Quemist Very interesting thread! I have one question, and one comment. For now...

Comment, I definitely agree with you about ditching the sunglasses. I used to always wear my sunglasses outside, but was able to wean myself off them and now only wear them if I am outside for extended periods. I never thought I could reduce my light sensitivity! But I did. Glad you did too.

Question: My biggest complaint right now is standing. If I stand for more than 2 minutes I start getting weak, 3 or 4 minutes and I am shaking and feeling oxygen deprived. What do you think their advice would be for me?

I've been meaning to lay down more often to try to improve (it worked once before), but haven't been able to mentally tell myself to lay down. I feel less lazy sitting with my legs on the couch. Now I am wondering if this is a good thing that I have been sitting only. I definitely can't afford to get any worse! (I still work full time at an easy desk job, but I am unable to do any cooking or chores without PEM)

Glad to hear you are feeling a little better, and very interesting perspective of the program.

 

[Quemist]

Hi @Quemist Very interesting thread! I have one question, and one comment. For now...

Comment, I definitely agree with you about ditching the sunglasses. I used to always wear my sunglasses outside, but was able to wean myself off them and now only wear them if I am outside for extended periods. I never thought I could reduce my light sensitivity! But I did. Glad you did too.

Question: My biggest complaint right now is standing. If I stand for more than 2 minutes I start getting weak, 3 or 4 minutes and I am shaking and feeling oxygen deprived. What do you think their advice would be for me?

I've been meaning to lay down more often to try to improve (it worked once before), but haven't been able to mentally tell myself to lay down. I feel less lazy sitting with my legs on the couch. Now I am wondering if this is a good thing that I have been sitting only. I definitely can't afford to get any worse! (I still work full time at an easy desk job, but I am unable to do any cooking or chores without PEM)

Glad to hear you are feeling a little better, and very interesting perspective of the program.

Yeah, the light sensitivity has been difficult. Certainly something that was hard to work towards.

Standing-- I TOTALLY understand what you mean. I wasn't able to stand for more than two minutes and certainly not able to walk. My family signed me up for physical therapy against my will a couple of months ago. It was hard as hell. I did not want to do it at all and really resented them for doing it with all of the research that is out there. I made it clear as heck to my PT that I was really afraid of getting worse. I worked with him for two days a week and gradually began to feel better. I recommend just trying to increase your standing by twenty seconds or more each day and see where that takes you. I had to carry a stool with me wherever I went because I was so afraid of standing. I can't say this is going to work for everyone- being bedridden is hard and I'm hella afraid of that happening to me again. For now, I just have to be kind to my body, plan rest breaks, and try to work on my abdominal muscles and standing became so much easier.

 

[Keela Too]

Several people did quit, some were asked to leave because they were very negative about the treatment for most of the time.

Maybe they are the folk whose bodies didn't respond well to the treatment? Hard to comply cheerfully if the treatments are making you increasingly ill.

So here's the rub: Are those who grumble that "it won't work for me" actually the ones who were genuinely in tune with what their body could cope with?

Or are they (as some therapists might suggest) with a wrong mindset that prevents the therapies from working...

I would suggest the former as a likely scenario.

 

[Snowdrop]

Hi @Quemist

Kind of you to be willing to answer so many Questions.
I have a few.

And sorry if you discussed this elsewhere.
In assessing your treatment at Mayo I'd like to know how long you were ill prior to starting the program? (I realise that this has nothing to do with level of disability)

And did you have difficulty sleeping as one of your symptoms prior to and as secondary answer during your treatment?

 

[Quemist]

Maybe they are the folk whose bodies didn't respond well to the treatment? Hard to comply cheerfully if the treatments are making you increasingly ill.

So here's the rub: Are those who grumble that "it won't work for me" actually the ones who were genuinely in tune with what their body could cope with?

Or are they (as some therapists might suggest) with a wrong mindset that prevents the therapies from working...

I would suggest the former as a likely scenario.

I completely agree with you. One person who was asked to leave was forced to go to the program on account of a worker's compensation settlement and insurance made them attend the program. She thought the program was a waste of their time. Most people there genuinely wanted to be there. For many, this was a last resort and they would have done anything at that point to feel better. In my experience, the people who didnt' stay are the ones that really were uncomfortable with the opioid detox and refused to continue with the treatment.

 

[Quemist]

Hi @Quemist

Kind of you to be willing to answer so many Questions.
I have a few.

And sorry if you discussed this elsewhere.
In assessing your treatment at Mayo I'd like to know how long you were ill prior to starting the program? (I realise that this has nothing to do with level of disability)

And did you have difficulty sleeping as one of your symptoms prior to and as secondary answer during your treatment?

I got a very bad food poisioning in 2015 that I think precipitated everything. I also did get parasites while living in costa rica and my first experience with debilitating fatigue was in Europe in 2011. Being bedridden started for me about a year ago.
Difficulty sleeping was a huge part. I found that regulating my sleep schedule helped significantly but I still do have issues.

 

[Snowdrop]

Thanks.
Was the regulating of sleep suggested by Mayo?
If so what was the recommendation?