Disappointing Mayo Clinic Treatment

[Jigsaw]

I cannot begin to explain what absolute BS this theory is. It is pseudoscientific clap-trap. A new way of spinning the idea of your pain being generated by your mind - but with suitable neurobabble to make it sound less psychological! The evidence its based on is very scant too. Studies that show very, small, short-lived CNS mediated pain amplification effects following the experience of acute pain. Vague studies showing reduced or increased resting state activation or activation following pain stimulation in various brain areas that might have something to do with pain (but in reality, probably do many other things we don't yet understand). Nothing that has the power to explain chronic pain, especially not of a relapsing-remitting nature.

The rest of the theory is just the usual somatisation/ pain catastrophisation stuff rebranded in neural terms.

How is it that our experience of pain/malaise varies so substantially with activity, etc? If its truly central, and we have pain receptors/ pain processing regions constantly "switched on" or set to a low threshold, then the pain should be constant. Here is where the central sensitisation theorists just wave their hands and say "the brain is complicated". To me, all those various features point to a more peripheral culprit. One that varies in intensity over time, probably inflammatory in nature.

If there is such a thing as central sensitisation syndrome, you would probably need significant and very selective damage to the brain to get it. Or maybe really severe psychosis, enough to lead to major, enduring distortions in the way you process bodily sensations. Or perhaps amputation (but then it wouldn't feel anything like FM or CFS, it would be much more localised).

@Woolie

I couldn't agree more!

All this "it's *just* your brain misinterpreting pain signals" sounds to me like yet another way of blaming the patient (e.g. GET, CBT etc).

It's by far the easiest thing for doctors to do if they don't know what's going on or how to treat it successfully.

Every time I've heard this statement, and other equally condescending variations of it, I have had to restrain myself from slapping the smug face in front of me and saying, "Hey, don't worry! It doesn't really hurt - it's just your brain misinterpreting pain signals!"

How is it that our experience of pain/malaise varies so substantially with activity, etc? If its truly central, and we have pain receptors/ pain processing regions constantly "switched on" or set to a low threshold, then the pain should be constant. Here is where the central sensitisation theorists just wave their hands and say "the brain is complicated". To me, all those various features point to a more peripheral culprit. One that varies in intensity over time, probably inflammatory in nature.

(emphasis mine)
I've been convinced for probably c.20 years that not only my chronic pain is the result of systemic inflammation, but also my acute pain like migraine, sinusitis, impinged nerves, etc, which respond positively to the application of ice-packs (Theraflex are good).

This is supported systemically when I see my CRP and ESR lowering in correlation with increases in my steroid dose.

Yes, of course the brain is complicated, but I think you're right, if pain processing was constantly amplified, pain would be constant as well. I think I see some similarities between PTSD and ME/CFS/FMS, with the brain seemingly on red alert / in a state of hypervigilance the whole time, but the point about that is that it's the brain's way of trying to protect the body it lives in from further physical trauma.

I was told by a physio a few years back that when an area of ourselves suffers a physical trauma/injury that damages sensory/pain nerves, the brain assesses that the body wasn't given enough of a warning (via sensory nerves) to keep it away from the cause of that injury, and so it repopulates the area concerned with many more sensory nerves than it had there previously, in an effort to stop it from happening again.

More sensory/pain nerves = more sensory/pain receptors in the brain. So far from it being a case of our brains "misinterpreting pain signals," the physical reality, according to this theory, is that we have more pain sensors and receptors.

If that's true, then of course we're going to feel more pain than bodies with fewer pain sensors and recptors do.

Misinterpretation my arse. Our brains are interpreting things perfectly, as far as I can see. It's the "experts" brains that seem to be misinterpreting information!

 

[Woolie]

Every time I've heard this statement, and other equally condescending variations of it, I have had to restrain myself from slapping the smug face in front of me and saying, "Hey, don't worry! It doesn't really hurt - it's just your brain misinterpreting pain signals!"

!

 

[Kati]

I'm just getting to my wits end with frustration. My family went with me for the treatment and it's totally backfired because now they're trying to get me to do meditation and exercise as my main therapy....
they want me to go back for a three week therapy that focuses on exercise and cbt. I'm feeling pretty hopeless

OH no @Quemist that's evil what Mayo clinic did. They actually brainwashed your family. That is so horrible.
may I suggest you look for materials for them to read, like perhaps Solve Me/CFS research program, or like the ME International Consensus Criteria for instance? You need your loved ones on your side. MEditation, CBT and GEt won't cure anything, and I know you know!

 

[Quemist]

OH no @Quemist that's evil what Mayo clinic did. They actually brainwashed your family. That is so horrible.
may I suggest you look for materials for them to read, like perhaps Solve Me/CFS research program, or like the ME International Consensus Criteria for instance? You need your loved ones on your side. MEditation, CBT and GEt won't cure anything, and I know you know!

I am in the middle of treatment now at Mayo.
I actually am benefiting from it significantly.

I'm surprising myself with the physical activity I've been able to regain, I can walk now.

 

[mrquasar]

I am in the middle of treatment now at Mayo.
I actually am benefiting from it significantly.

I'm surprising myself with the physical activity I've been able to regain, I can walk now.

That's fantastic to hear! However, GET has caused great harm to other ME/CFS patients. Without a reliable diagnostic test for ME/CFS, it may even be possible that you don't have it, or that you suffer from a separate sub-type from others which responds to GET in a positive way.

I still don't think it can be recommended as a reliable treatment for all ME/CFS patients because of the risk of great harm. But if it's benefiting you, you should continue it.

Just my 2 cents.

 

[MeSci]

I am in the middle of treatment now at Mayo.
I actually am benefiting from it significantly.

I'm surprising myself with the physical activity I've been able to regain, I can walk now.

Be VERY careful. People can fool themselves into thinking - and the belief can be overpowering as the desire is so strong - that they are benefiting from a bogus treatment, especially if (as so often) follow-up is for such a short time (CHECK) that they get false 'recovery' signs, only to collapse seriously months later. Sometimes the collapse is permanent or at least very long term.

 

[Quemist]

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

 

[trishrhymes]

Hi @Quemist, would you mind telling us what the physical therapy involves?

It will be good to hear more progress reports on how you get on if you feel like telling us more.

I wonder, from your last comment, whether doing more physically is making your cognitive symptoms worse.

Maybe you will need to go somewhere else to get the infectious disease testing you want, if this clinic refuses to do it.

I really wish you well - it's such a difficult illness to live with - and having to negotiate your way around testing and treatment is a nightmare. Good luck.

 

[Quemist]

It's very easy physical therapy. No lifting more than five pounds at most, gradual stretching bands in low repetitions, calisthenics like leg raises and hip raises. Very low key, no hardcore cardio. @trishrhymes
I do think it's low enough to not over exert people but it is some low energy work.

 

[trishrhymes]

Thanks, @Quemist, that's really interesting - so it's gentle stretching and strengthening exercises, presumably mostly done lying down or sitting - not the dreaded GET as in the PACE trial which was much more based around increasing aerobic activity such as walking, and pushing through even if you felt worse.

I hope it continues to help, but do listen to your body and rest if you relapse.

 

[PennyIA]

I'm just getting to my wits end with frustration. My family went with me for the treatment and it's totally backfired because now they're trying to get me to do meditation and exercise as my main therapy....
they want me to go back for a three week therapy that focuses on exercise and cbt. I'm feeling pretty hopeless

Please, please try to resist the 3 week treatment. I went through that in 2015. I got worse. AND it cost me close to $25K after insurance payments which they demanded immediately within a month of treatment. When I got told it would be covered by insurance, I certainly didn't expect to be an additional $25k in debt... it very nearly bankrupted me which isn't fun when you're already ill.

 

[Quemist]

Please, please try to resist the 3 week treatment. I went through that in 2015. I got worse. AND it cost me close to $25K after insurance payments which they demanded immediately within a month of treatment. When I got told it would be covered by insurance, I certainly didn't expect to be an additional $25k in debt... it very nearly bankrupted me which isn't fun when you're already ill.

Tell me more!! Which campus?

 

[Shoshana]

HI @Quemist
I hope you will continue to improve, for some reason unknown to most of us,

However, if this program does end up with you worse, at some point,
at least it might help with your family understanding your condition better.
And helping you to find a different type of help.

They will know you did try this, and if it fails and they see that,
then hopefully they will give you more appropriate, adequate family type support, as well.

If you had not done this, they would think you could have gotten all better from it.

So, again, I do hope you get better, and that you do NOT suffer a worsening of cognitive symptoms,
or a relapse of worse physical difficulties,
but if you do not get better, from this enormous effort of yours,
then I hope your family will give more understanding. That would at least help you in some ways.

 

[PennyIA]

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

I will say that it felt like it got slightly better for the first few weeks. Then I crashed and crashed badly.

 

[PennyIA]

Tell me more!! Which campus?

Rochester

 

[Quemist]

HI @Quemist
I hope you will continue to improve, for some reason unknown to most of us,

However, if this program does end up with you worse, at some point,
at least it might help with your family understanding your condition better.
And helping you to find a different type of help.

They will know you did try this, and if it fails and they see that,
then hopefully they will give you more appropriate, adequate family type support, as well.

If you had not done this, they would think you could have gotten all better from it.

So, again, I do hope you get better, and that you do NOT suffer a worsening of cognitive symptoms,
or a relapse of worse physical difficulties,
but if you do not get better, from this enormous effort of yours,
then I hope your family will give more understanding. That would at least help you in some ways.

Yes, that's kind of what I'm thinking. If I had refused the treatment then not getting better would be on me. I'm trying to follow it but it's very disheartening.

 

[Quemist]

Rochester

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.

 

[trishrhymes]

@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' ?

 

[Quemist]

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

 

[Kati]

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.

Sorry. @Quemist, that's ridiculous and they are doing harm. The Central Sensitization theory is a theory, they are simply saying that all of the unexplained symptoms/syndrome/disorders mainly women, can be nicely package into " it's your brain freaking out". i don't buy that. POTS and dysautonomia is believed to be auto-immune with adrenergic receptors antibodies involved. Period cramps- geez. interstitial cystitis, all in your head? i don't think so,