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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Did the program have an objective way of showing patients' progress.
I'm glad @Quemist you are doing well now, please don't push yourself too hard, getting to way you are now is a huge improvement. My question would be, if you progressed Well from not standing to quite long aerobic exercise yourself in 2 months do you think you would have continued to improve if you hadn't gone into a clinic and do you feel they got you to a higher level than you'd get yourself in a few weeks?
Thanks for discussing this in a balanced way @Quemist
This seems bizarre as a combination. How could a treatment programme be appropriate for all these patients?
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Thanks for discussing this in a balanced way @Quemist
Obviously we can't go to the doctor every day we feel ill, but it feels like dangerous advice not to go back about recurring symptoms. Sometimes you have to mention a symptom several times before it gets taken seriously and doctors do forget details. For example I had symptoms that my doctor said if consistent he'd be thinking cancer. In my case it wasn't consistent but imagine if I'd not gone back precisely because it was consistent!
The advice to ignore symptoms goes against what I learnt in Social Cognition lectures. Being told *not* to dwell on something makes you dwell on it much more. Making patients feel they shouldn't cry/feel down about being ill is especially worrying given the suicide incidence in ME. It seems healthier to foster an environment where you accept living with chronic illness is damn hard and it is ok to face this and talk about difficult feelings.
I used to be able to block out symptoms. I don't think this was a good plan though. Also it isn't necessarily a choice. I'm too ill now for this to be an option. In between I had a bedbound relapse. I think over doing it was involved, but so was a virus, so hard to pinpoint.
This is still true.I don't know if it changed since 2006, but at that time they did only subjective measurements.
I actually was admitted for presumed MS/POTS. Tingling/numbness is one of my biggest symptoms.I have one other question I had forgotten earlier and a comment.
With ME many people have the experience of classic ME symptoms and also sadly have symptoms of other AI or other illnesses eg celiac, IBD, Sjogren's, Mast Cell Activation, Rheumatoid arthritis, MS, Psoriasis,
did you experience any of these concominent to your ME?
I was trying my best to be a good patient. I was with my family and every time I asked doctors a question about treatment or tried to suggest something, it started a fight about how I'm too pushy or agressive. So, I started to try to not research my symptoms too much after that.As a scientist I'm surprised that you responded that you didn't think the criteria mattered for diagnosis.
For ME patients it's pretty much the International consensus criteria or the Canadian consensus criteria that accurately portray ME. The Holmes and Fukuda definitions (of 1990's US) capture less classical ME and more fatigue of unknown origin.
They pushed central sensitization as a main theory really, really hard. They said that most diseases will inherently cause some kind of abnormal response in the brain and therefore lead to more symptoms.@Quemist Am on my phone and it's not letting me quote but many pages back you stated that the treatment plan was the same regardless if the patient was in the program for a limb amputation or for POTS.
This is very illogical to me at best and very dangerous/harmful at worst. Can you explain Mayo's philosophy on why different diagnoses would not have individualized treatment plans?
I can help with answering some of the premise ... since I'm betting at this point @Quemist might fell a bit attacked by now. Let's face it, many of us have agreed to therapies we haven't necessarily understood nor wanted simply to try it. I don't know about you, but there are lots and lots and lots of things I've tried just because if it could help even slightly, I would take any improvement I can find.
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Benzos are now just equally as bad in their eyes.They also had an arm towards reducing pain management medications for chronic pain. (from the study showing it isn't as effective). When I went, they only asked people to stop taking pain killers. (it sounds like they might be expanding it).
CBT was tied a bit towards you know we've done everything medically possible, now you just need to get on with living life and having something to look forward to, because now you are as healthy as you will ever get.
GET was tied towards increasing your activity levels and while it was all within the vicinity of don't over do things, take things slower than you think you can... it then also says... do more the next day. (smirk)
ALL THAT SAID? I would NEVER, EVER, EVER recommend someone go to Mayo for ME/CFS.
NOT EVER.
I think the general consensus in this group is founded in reality. I think the treatment at Mayo is all about just 'putting' everyone they can't 'fix' into a box and handing them tools so they don't keep pestering us is at play.
When I went, it was part of a study and I was told I would be contacted six times for follow up to see how well I keep improving. I crashed before the first follow up and told them so. I haven't been contacted since.
I'm pretty sure that (like PACE trial seemed to handle some of the patients) that the result is that I will just be considered as someone who 'didn't complete' INSTEAD of showing up as an Adverse Event... because of course, they still believe a little bit of moderate activity cannot do any harm - so the fact that I'm not in the study is unrelated to the fact that the continued attempt to keep increasing my activity level led to a crash.
SO, yes, everything everyone is pointing out as a flaw to their service? Yep, Yep.
Oh, I was late every single day. Some days rolled in around 9am. Surprisingly, they didnt' ask me to leave.This is gonna sound silly, but how were you able to get somewhere at 8 am? For 3 weeks? Is this possible with me? I consider my self moderate nowadays. I could not be on the spot at 8am. even when I was mild.
There was a questionnaire that they had me take. I came in in a good mood and low pain. When they had met take it three weeks later, my mood and symptoms were wrecked. I also didn't do any better on my physical fitness tests. Occupational therapy was not improved whatsoever.can you explain more about the "metrix" showing the therapy wasn't working for you, yet is seems like it did work for you. I am very glad you are feeling better
With the support of staff and peers in the program, participants regain strength and stamina, and shift toward a focus on what they can do to regain control over their life again.
People come to Mayo Clinic's Pain Rehabilitation Center with many different types of chronic pain and conditions. Examples include:
- Chronic back pain
- Fibromyalgia
- Nonepileptic spells
- Chronic fatigue
- Headaches, including migraines
- Generalized pain or pain in multiple areas
- Abdominal pain
- Postural orthostatic tachycardia syndrome (POTS)
- Upper or lower body pain, such as pain in the chest wall, jaw, face, pelvis or joints
- Pain after removal of breast tissue from a breast (mastectomy)
- Nerve (neuropathic) pain
- Complex regional pain syndrome
The rehabilitation program is focused on functional restoration. A cognitivebehavioral
model serves as the basis for treatment and incorporates physical
reconditioning, biofeedback and relaxation training, stress management,
chemical health education, activity moderation, and cognitive restructuring to
decrease pain catastrophizing and pain anxiety. Throughout the three-week
program, various types of treatment and therapies are presented to help each
patient achieve individualized goals in returning to an active and fulfilling life.
Pain catastrophizing is the tendency to describe a pain experience in more exaggerated terms than the average person, to ruminate on it more (e.g., "I kept thinking 'this is terrible'"), and/or to feel more helpless about the experience ("I thought it was never going to get better").
Goals
The primary goal of the Pain Rehabilitation Center is to restore functioning and improve
quality of life for persons suffering with chronic pain. The program emphasizes the
discontinuation of opioids for the treatment of chronic benign pain and the return to a
fulfilling lifestyle.
Other important goals include:
• Return to regular daily activities
• Increase physical strength, stamina and flexibility
• Reduce/eliminate use of pain medications
• Minimize pain behaviors
• Learn stress management techniques
• Return to gainful employment (if applicable)
• Resume leisure and recreational activities
• Improve interpersonal relationships
• Reduce reliance on health-care professionals, with improved ability to
self-manage chronic pain
'Rehabilitation' = the action of restoring someone to health or normal life through training and therapy after imprisonment, addiction, or illness.
This was a pain rehabilitation program.
I think that deconditioning was PART of it. I am in NO way in recovery, just able to cope a bit better.
I also think that pacing was their number one sell. I think that trying some pacing was very good for my recovery and thinking of things as steps instead of all-or-nothing.
CBT was very helpful. I'm having a lot of grief about losing my career as a scientist and what I might have done to cause this. I feel a lot more solid. They also did a good job of talking about "pain behaviors" and making sure that we are trying to refocus our attention to other things and distract ourselves. I also am having a lot of issues with family support and school/work. This helped with my perception of these three things significantly.
Oh, we were most definitely told to push through our symptoms.
Absolutely no lying down allowed. People who came in with heating pads were "tapered" off of them, everyone was expected to sit. One person hated sitting and had to stand for periods of time and they put them on a "taper" so that they gradually got used to sitting more and more, despite pain or discomfort.
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.
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.
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
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.
This really bothered me, too. I thought it was strange that we were all lumped together... making me think it was more brainwashing.
I don't know if it changed since 2006, but at that time they did only subjective measurements.
They pushed central sensitization as a main theory really, really hard. They said that most diseases will inherently cause some kind of abnormal response in the brain and therefore lead to more symptoms.
Not feeling attacked Just exhausted! I knew this was going to be a controversial thread. Just wanted to at least share my story and provide some answers for anyone who might be referred to the PRC clinic.
That's what bothered me the MOST. Every day I looked around and thought "seriously, this is where they put people that they're tired of dealing with." It was summer camp for borderline hypochondriacs.
I also would not recommend Mayo for CFS/ME. My family is like "oh, well if Mayo can't figure out what's wrong with you...." and kind of leaves it at that. The program did basically give me permission to exclude them from my life. So now I get to say "well, Mayo said it was unhealthy for me to have a relationship with people who are dubious of my symtoms and diagnoses"
I'm looking into Vanderbilt next.
Oh, I was late every single day. Some days rolled in around 9am. Surprisingly, they didnt' ask me to leave.
That was another thing that bothered me- some people that they decided weren't going to finish well were asked to leave. I thought that was one way of cherry picking their data.
There was a questionnaire that they had me take. I came in in a good mood and low pain. When they had met take it three weeks later, my mood and symptoms were wrecked. I also didn't do any better on my physical fitness tests. Occupational therapy was not improved whatsoever.
Again, I cant help but think that theyre somehow cherry picking their data. I wouldn't be surprised if they find some way to exclude my data from the study.
I agree, it took many years before i got the ME/CFS diagnosis, and my only goal was to function, and i had no idea that pushing myself was bad. I have permanently made myself worse, and its not because of self defeating beliefs or any of that nonsense or deconditioning, i had no idea what ME/CFS was and was not in such a mindset yet i harmed myself greatly by doing what this is suggesting.@Quemist I am delighted for you that you consider this PACE-like therapy to have been a success. Nevertheless, the thread leaves me feeling quite unsettled over the prospect that severe patients, especially those who "check" virtually every symptom on the lists in the most-stringent criteria (CCC and ICC), may be forced into what sounds to me like torture. I'm left wondering how many have been harmed.
i've noticed this too, sometimes i am so far gone i can function. But i pay for it with a vengeance later.I've noticed something like this too.
Many people on PR (including myself) have mentioned that in that short window after we've exerted ourselves too much but before PEM sets in, we can feel hyper and energised. Perhaps by exercising and then pushing through the PEM and exercising again, they can delay the PEM by getting into this hyper state again and again?
When I was undertaking graded exercise, I also found that the exercise itself temporarily improved fatigue and pain. At the time, I put this down to endorphins released by the exercise. This stopped working after a few years.
I've also found that an episode of intense stress can temporarily pull me out of PEM because the adrenalin (or cortisol?) masks the PEM symptoms. This phenomenon is effective enough that I can attend a social function when I've been in a severe crash a few minutes before. Of course, I end up paying for it even more once the adrenalin wears off.