My Rheumatologist Prescribed Aquatic GET...

[RyeRyeBread]

[Long Post, beware lol]
Just saw my first rheumatologist yesterday. Went pretty well, she seemed nice and there were minimal red flags.... Until she mentioned GET.

I told her my symptoms, and told her my hunch that I had brought to my last Dr. (that i think its ME) before he very quickly shipped me off to rheumatology. She chuckled, confirmed she knows what ME is, and then asked a few more questions before agreeing that it seems like "CFS". Then, continuing to use CFS instead of ME the rest of the appointment, she mentions deconditioning, and how GET is the recommended treatment for ME....
I immediately know that's BS, and want to say something, but I froze up verbally and ended up saying that yes, I'd be willing to try aquatic [graded] therapy
And while aquatic therapy itself would be great for my POTS... Obviously not great for the suspected ME.

(To clarify, all the language she used surrounding & seperate from the GET crap was great - she pointed out heavily the importance of being aware of what was too much for me, not pushing myself, advocating to the PT how much I can do, how much I can't, whats too much and when, etc. It was all great except that GET part Her mentioning deconditioning wasn't the best either, but tbh I was so nervously out of it that I don't know if she wanted to use PT to *avoid* deconditioning, or if she thinks thats the cause of ME smh)

So... Now I have 3 main issues:
1.) How the heck do I educate my rheumatologist on how harmful and NOT recommended GET is, avoid doing it, all while not getting labelled as "unwilling" or "refusing" treatment? (I think that's why I said sure instead of "nooo heckin way")
2.) Tips on explaining the differences/preferences of using the term ME vs ME/CFS or just CFS? Her using just CFS while I only used ME was frustrating to say the least.
3.) When/If i get a diagnosis of ME, I'd prefer it to be just that - ME, not CFS or ME/CFS (aka the ICC criteria). I plan on advocating against "CFS" being anywhere near my health record, due to it being harmful and misguiding. Any recommendations on how to go about translating that to this rheumatologist? or is there no hope here?

Any tips, stories, comments, and concerns are welcome

She also prescribed meds & supplements for my headaches, occasional insomnia, symptom stuff

Anyone every tried these?

And ordered bloodwork

bloodwork

 

[Alvin2]

How the heck do I educate my rheumatologist on how harmful and NOT recommended GET is,

You don't, the percent success rate of a doctor learning form a patient is in the single digits.

all while not getting labelled as "unwilling" or "refusing" treatment? (I think that's why I said sure instead of "nooo heckin way")

What are the risks to you if you are labelled as refusing treatment?
If you are going to lose disability benefits then you must avoid it, if its a notation in your medical records that no one will see then its not a big deal.
That said once you hit a wall like this the best plan is to cancel followup appointments and find a better doctor.

 

[RyeRyeBread]

What are the risks to you if you are labelled as refusing treatment?

My main concern is with it being in my notes/records, and if other doctors saw those and made false assumptions based on them.
Also I'd like to keep this doctor if possible, so long as they respond well to whenever I express my concerns and present them with research/explanations as to why this "therapy" is harmful etc.. I'd obviously like to avoid this doc thinking I'm just "scared" of the PT, or that I'm just unwilling to exercise, so I'm currently looking for ways to word my concerns (and documents to back them up) that may yield the best chance of positive results

That said once you hit a wall like this the best plan is to cancel followup appointments and find a better doctor.

I waited many months for this appointment, and I've switched a handful of docs already - so ideally I'd like to not have a bunch of doctor switches on my record moving forward, at least if i can help it. If i express my concerns to her and she buckles down on GET, she's out. It would just suck, a lot, so if there's even a tiny chance that she would come around and do more research, I think it's worth it to type some paragraphs up lol

At the very least, I'd like to get this bloodwork she ordered done before hunting down the next doc, if needed. So that way I'd atleast get that out of it smh

At this point it may be worth it to go into more debt seeing a specialist...

[apologies if a bit rambly, brain's a bit jumbled ]

 

[Alvin2]

My main concern is with it being in my notes/records, and if other doctors saw those and made false assumptions based on them.

Thats not really an issue, if another doc brings it up just calmly explain that this doc didn't understand your condition or that they prescribed treatments the NIH now cautions against using becasue it harms patients.

Also I'd like to keep this doctor if possible, so long as they respond well to whenever I express my concerns and present them with research/explanations as to why this "therapy" is harmful etc..

Most docs don't like patients educating them. In fact they seem to be taught that wisdom only goes one way which is from them to you.
There are of course exceptions, i have met a few who admitted they knew nothing about ME and were open to receiving literature about it from me. But they knew nothing so i was not correcting their mistaken assumptions, i just helping them learn something from scratch.

I'd obviously like to avoid this doc thinking I'm just "scared" of the PT, or that I'm just unwilling to exercise, so I'm currently looking for ways to word my concerns (and documents to back them up) that may yield the best chance of positive results

Don't let this bother you, i have docs who think i'm nuts and wrong when i have explained that their diagnoses or treatments made no sense whatsoever (beyond ME).
In the end you have to live with the side effects of any treatment so if a doc wants to harm (even if they mean well but are just misinformed) you should drop them like a hot potato.

I waited many months for this appointment, and I've switched a handful of docs already - so ideally I'd like to not have a bunch of doctor switches on my record moving forward, at least if i can help it.

This is not an issue, for rare conditions going from doctor to doctor won't surprise future doctors.
To be honest what matters more is how you treat any future docs, as long as you don't push their buttons they won't hold this against you.

If i express my concerns to her and she buckles down on GET, she's out. It would just suck, a lot, so if there's even a tiny chance that she would come around and do more research, I think it's worth it to type some paragraphs up lol

There is a tiny chance. There is also a tiny chance i will win big at the casino.

At this point it may be worth it to go into more debt seeing a specialist...

Debt is bad
This should be avoided.

[apologies if a bit rambly, brain's a bit jumbled ]

No worries.

 

[RyeRyeBread]

@Alvin2 Thank you, this information helps I am a little less stressed about this now lol

Debt is bad
This should be avoided.

True, but I imagine a specialist would be able to diagnose me easier and more willingly than the docs I've seen thus far

if this rheumatologist flunks, I might try this other doc recommended to me by a mutual friend who has Lyme... doesn't take insurance though, but they're definitely cheaper than ME specialists

I wish I could send out an email to all the doctors out there, just to ask "hey, which one of you is willing to work with ME?" so I can weed them out without wasting the months it takes to get into their offices smh

 

[Alvin2]

True, but I imagine a specialist would be able to diagnose me easier and more willingly than the docs I've seen thus far

Why do you need a diagnosis right now?

if this rheumatologist flunks, I might try this other doc recommended to me by a mutual friend who has Lyme... doesn't take insurance though, but they're definitely cheaper than ME specialists

Right now you might want to hold your cash close to the vest.

I wish I could send out an email to all the doctors out there, just to ask "hey, which one of you is willing to work with ME?" so I can weed them out without wasting the months it takes to get into their offices smh

I'm in Canada and only know of a few places in the US (Dr Klimas, OMI for example) but i bet other forum members will be able to give advice on ME specialists in your area.

 

[RyeRyeBread]

Why do you need a diagnosis right now?

Mainly personal reasons, I'm not currently applying for disability or anything like that. I'd like to know "for sure" what I have, I hate not knowing/not having a diagnosed reason to give to people to explain whats wrong with me. Once I'm able to start working again, having a diagnosis would help with any accommodations i might need as well.
Again, mostly just the personal satisfaction of having answers.

I'm in Canada and only know of a few places in the US (Dr Klimas, OMI for example) but i bet other forum members will be able to give advice on ME specialists in your area.

Hopefully. I'm in NJ USA, I know there are some in NYC - wish there were some closer

 

[Insomniac]

This question of how to educate a rheumatologist is bothering me now too.

I have just been through 3 rhumatologists. Every single one believes in exercise and does not know what PEM is.
I live in Israel where all rheumatologists believe that.

The theory of "you can't educate them - get another doctor" is a great theory for a person in the USA or anywhere where there are tons of doctors to chose from. ,

For where I live, and in areas with less doctors, it gets to the stage where you run out of doctors to try. So you have to try and attempt explanation when you see someone who looks like a nice person.

I have tried searching online simple explanations of say 4-5 sentences for doctors with references that a doctor can read in the short appointment.

I just need refutation of GET and bloody exercise and an explanation of why CFS is NOT the same as fibromyalgia due to PEM and exercise intolerance.

The last private rheumatologist I went to only had 45 minutes for me. Even with 1 hour , once they have read my 40 pages of tests and talked to me they don't have the time or patience to listen to the lengthy OMF and "Action for ME" essays.

I have a distant acquantance who managed to get treatment that I couldn't access because she had the verbal ability to explain CFS to a doctor and bring them the research to back up.

I am really lousy at that.

If anyone here can find a online simple explanations of 4-5 sentences for doctors with references that a doctor can read in the short appointment.
that says CFS is not fibromyalgia and why, with references,

Plus a refutation of GET and bloody exercise that doesn't take up a whole page....then please let us know.

 

[lenora]

Personally, I would try the aquatic therapy. It's far more gentle and may help build up some stamina.

I'm older (by a lot, probably) and recently had 5 pelvic fractures and a fractured vertebra. No broken hip, thankfully. The Dr. (and my Drs.) wanted me to have home PT. I was a bit hesitant, but knew that mos. in bed without doing anything couldn't possibly be done. So here's what I did:

The therapist(s) came and I told them about my ME/FM and that I would only do things that didn't seem to aggravate the condition. That's exactly what happened. I wasn't pushed or bullied and they did listen to me. I would say "NO" and stick to it.....but also told them when I felt better. I was up and walking again and would go through it again. MY doctors were all pleased, and so was I.

Fast forward a few months as healing has continued. I probably should have continued with the PT (this would have been the 3rd of five wks. of treatment). My hip is bothering me, I have no stamina and while I can do the exercises it was good to feel that I was being watched and yes, even graded. However, we do have to set our limits.....and a good therapist will listen. All in all, I would do it again....and I wish this hip would stop hurting. One of those forever pains, I believe.

So there is exercise and then there is exercise. In certain respects we're the masters of our destinies. If you feel that something is too hard, please don't be afraid to not do it. I understand that aquatic therapy is good.
Most doctors do recommend walking at the least....on days when you can. It starts off by going two houses down, turning around and going home....then working up to three when you're ready, and on and on from there. My knees prevent me from doing many forms of exercise, but when I was younger I took it upon myself to move and it was the right thing. Not lifting weights....just being kind to your body.

Even doing housework can be a form of exercise....it's doing something extra that matters. Grocery shopping is another and yes, these things can tire us....but we soon learn what is right for us. I'm looking forward to cooler weather b/c I can't walk in our summer heat. A pity. Yours, Lenora

 

[RyeRyeBread]

Personally, I would try the aquatic therapy

Initially, I considered it. But ultimately I'm not willing to do any form of GET. Aquatic therapy, without the goal of "increasing activity" and instead just light movement to help bloodflow and avoid muscle issues, I'm open to. Just not with the goal of grading it.

I'm hoping that after I communicate my concerns with my rheumatologist, if she comes around, she'll be open to exploring non-GET PT goals

 

[hapl808]

Mainly personal reasons, I'm not currently applying for disability or anything like that. I'd like to know "for sure" what I have, I hate not knowing/not having a diagnosed reason to give to people to explain whats wrong with me. Once I'm able to start working again, having a diagnosis would help with any accommodations i might need as well.
Again, mostly just the personal satisfaction of having answers.

I understand this desire, I would just recommend some caution. Personally I don't feel this way, mainly because I don't know what 'for sure' means for a disorder that is just a symptom cluster. There are things we seem to be able to definitively diagnose - an HIV infection, a compound fracture, etc. It is clear on imaging or in a lab, and we know what's involved.

No matter how confident a diagnosis of ME/CFS, it's just guesswork. That is the absolute truth. No one knows what's happening, so it's just a symptom cluster that a group of people invented to make it differentially distinct from some other poorly understood illnesses.

Now that doesn't mean you can't get a physician to write the appropriate ICD code on your chart and be confident about it. But tomorrow or next year they could discover that ME/CFS is the same as long covid and 20 other illnesses, or they could discover that ME/CFS is a bucket of 50 totally distinct disorders with different etiologies and treatments.

So before going into debt, figure out what you're going to do with the information.

 

[hapl808]

Also, many of us have gotten many tests to rule out other disorders that are treatable. That, in my opinion, is more important than getting an ME/CFS diagnosis. There is no FDA treatment for ME/CFS, so it can just mean that they'll stop looking for other causes. Just things to consider.

 

[RyeRyeBread]

No one knows what's happening, so it's just a symptom cluster that a group of people invented to make it differentially distinct from some other poorly understood illnesses.

I mean, yes, understandable concerns [with it changing years from now, proving to be something else entirely, etc.]..but every illness ever started out this way. I rather be diagnosed with the correct cluster, sitting in the dark with no definitive answers (like I am now, minus diagnosis) - than diagnosed wrongfully with something else that doesn't convey my symptoms, or not diagnosed at all. Doctors and others, in general, take your concerns more seriously when you have a diagnosis attached to them which is BS but,

Also, many of us have gotten many tests to rule out other disorders that are treatable. That, in my opinion, is more important than getting an ME/CFS diagnosis. There is no FDA treatment for ME/CFS, so it can just mean that they'll stop looking for other causes. Just things to consider.

Yeah, I'm in the process of doing that part right now. I wouldn't want to be diagnosed with anything, ME included, until we've ruled out other possible illnesses

 

[wabi-sabi]

I would focus on #1 and let #2-3 go.

I haven't tried this, so not sure it would work... but if you can bring the rheum info from the Workwell foundation on ventilatory aerobic threshold and heartrate pacing or Dr. Systrom's work, that would give her some concrete data points to get a grip on rather than you just trying to explain the sick crash feeling. If the aquatic people can help you move safely it might help your POTS if you can do something that doesn't trigger the PEM part.

 

[CSMLSM]

DO NOT! let anyone make you do GET of any kind if you truely believe you have ME/CFS.

You need to let them know there cavalier approach to your serious condition is unacceptable full stop and that you want a treatment with real prospects of improvements not increased disability!

In the UK we finally have NICE about 1 year ago recommend avoiding this treatment after many have been injured by it and parents of young ones prosecuted for refusing to allow their children to endure it.

Avoid this doctor is my feeling!

 

[GreenEdge]

I believe the problem with GET is not the exercise itself but how it is prescribed.

This video explains the problem better than I could:
Why Graded Exercise Therapy Doesn't Work - M.E/CFS Recovery

 

[lenora]

Thanks @GreenEdge....I have followed many of the stories from the UK concerning GET. I personally don't feel under the same amount of pressure here and wouldn't want to. If I can't do something, I can do it and if my body is harmed, then that would make aggravate me no end and I would (nicely) talk it over with both my therapist and doctors.

The stories I've read have not been fair to the patients involved, especially those who are horribly ill. I don't feel that I have to fight a system (thankfully), but appreciate being listened to and having the doctors know that I do exercise when I can. I have to or my body deteriorates rather fast. Walking invigorates me (when cool), seeing other people, pets and the flowers and trees I pass.

I've certainly had periods where exercise is rather impossible (having one now), but I do hope to return to gentle walking in the fall. I don't take chances, fall easily and so I walk in safe places only (no sidewalk cracks). My husband walks for exercise, but he'll accompany me to help stop me from falling (two different types of epilepsy...and yes, I have fractured a few things). I won't push myself beyond my capabilities, but will be sensible and do the best I can. My doctors are happy with that and I've sent a few therapists on their way with their bands and other accessories.

I've also spent time on mental wards....but not b/c of refusing exercise. For me, it was a good experience once I adjusted. The patients weren't heavily medicated at all. Yours, Lenora

 

[CSMLSM]

Walking invigorates me (when cool), seeing other people, pets and the flowers and trees I pass.

I've certainly had periods where exercise is rather impossible (having one now), but I do hope to return to gentle walking in the fall. I don't take chances, fall easily and so I walk in safe places only (no sidewalk cracks). My husband walks for exercise, but he'll accompany me to help stop me from falling (two different types of epilepsy...and yes, I have fractured a few things).

Hi again lenora, I also hope you return to the walks soon. I am sure your husband enjoys taking them with you