I wish someone had warned me when I first got ME... therapies and treatments

[Mrs Sowester]

I hope this thread may be some help in two ways:

First to those newly diagnosed so that they can avoid wasting time, money and energy on therapies and treatments that we have found ineffective or harmful.

And secondly as a way of gaging strength of community feeling about available treatments and therapies.

I'm not making a distinction between alternative and mainstream treatments and therapies, all welcome

 

[Mrs Sowester]

GET I believed the hype and tried to walk briskly every day. I went from being able to walk miles across the moors at illness onset to not being able to walk 50 paces without breathlessness and neuro symptoms within 18months.

 

[Cheshire]

GET I believed the hype and tried to walk briskly every day. I went from being able to walk miles across the moors at illness onset to not being able to walk 50 paces without breathlessness and neuro symptoms within 18months.

Did they really say you should walk briskly?
For me it's the best recipe for getting PEM.

What did they tell you when you started getting worse?

 

[Invisible Woman]

I found advice on pacing (as in managing you energy levels NOT as in the PACE trial) useful.

However the idea that once you find yourself in a stable position trying to move forward, as in GAT (graded activity management), scuppered the new found balance.

I don't know if it's universally true but, for me, repeated cycles of improving a bit & then pushing a bit too hard & triggering a relapse has led to a steady overall deterioration.

If I knew then what I know now I would have done things differently.

 

[Mrs Sowester]

Did they really said you should walk briskly?
For me it's the best recipe for getting PEM.

What did they tell you when you started getting worse?

I read up on it and then tried myself (idiot that I am!) because there was no available ME service in my area at the time. I just pushed on through till I was hallucinating, quite literally.

 

[arewenearlythereyet]

I did GET willingly after attending a CFS clinic. I was encouraged to start slow 2 min gentle walk. I did slowly find my ceiling (20 min gentle walking). I did this using a heart rate monitor at my suggestion. When I got to 20 min walking , I was advised to jog for 1 minute and then increase this until I reached 30 min of jogging. This is when I crashed. I went back and complained that this was not sustainable. I get extreme joint pain in knees and hips when I deteriorate, which affects my ability to walk. I was advised to get new trainers but keep jogging while in pain ...I did this for a week ...It was impossible to get past 2 minutes jogging ...I gave up after that.

I did learn about heart rate zones and proper pacing, and also early on that small amounts of cardio disrupt pacing.

I wouldn't be without my heart rate monitor now.

 

[Mrs Sowester]

I also regret spending money on the Perrin Technique with the caveat that I did like the lymphatic drainage aspect of it.
It was a 100mile round trip, cost £30 for about 20 minutes, the neck rotation made my coathanger pain so bad I couldn't sleep and I reacted to the massage oils. I wasn't comfortable with the chap massaging my breasts either to be honest. I'd find my neck pain easing off just in time for the next session, I started dreading it.
Also we had to have 8 of those vegepa tablets daily or 'you don't want to get better' was quoted as something Perrin had said.
After about 10ish sessions I stopped with the Perrin guy and found a local female osteopath who did lymphatic drainage massage and cranial osteopathy, but didn't rotate my poor neck. She charged less for three times the time and I liked talking to her. I carried on seeing her till I went into a remission. I've no idea if the osteopathy contributed to the remission, but I did enjoy it and pleasantly felt light headed after the cranial osteopathy.

 

[Invisible Woman]

I also regret spending money on the Perrin Technique

Now, that was way too much for me. My body couldn't handle it at all & my osteopath could see it wasn't right for me.

She did the cranial osteopathy, which I quite enjoyed but it didn't actually help. Or, at least the benefit was less than the issues caused by having to get there.

 

[Mrs Sowester]

My body couldn't handle it at all & my osteopath could see it wasn't right for me

I wish the Perrin guy was that aware with me, he was surprised when I said I'd not be coming anymore. I actually felt guilty for disappointing him!

 

[Chrisb]

I have always worked on the principle that the therapist's need for the patient is probably greater than the patient's need for the particular therapist.

 

[Learner1]

I wish someone had warned me that mainstream doctors would be so utterly useless - I've been yelled at, dismissed, and has my time and energy wasted, and been fired.

I wish someone would have told me that this is such s complex, multi organ system disease, that for many have immune system dysfunction, including weird autoimmunity and hard to identify infectious triggers.

I wish someone would have shown me the attached model of treating ME/CFS. I don't know this doctor or what he actually does or how good he is, but my 2 doctors have found I have abnormalities in every single box in the model and over 18 months of working it has improved my functioning dramatically. I'm not cured yet, but I feel confident I will get there by continuing this process.

I wish someone had told me to go see one of the top specialists right off the bat. It would have saved me months and thousands of $$.

I wish someone had told me that the top specialist wouldn't solve all if my problems, but that a functional medicine or naturopathic doctor could help me with my hormones, nutrient deficiencies, repairing cell membranes, working on my microbiome, and keeping my overall body in the best shape possible.

I wish someone had told me that the microbiome us such a key piece of getting well and that rotating foods, probiotics, and probiotics would be needed, in a constant effort over time.

I wish someone would have told me that "alternative" treatments like customized nutrient/mitochondrial support IVs, oral nutrient and botanic supplements, oxygen therapies like HBOT, UVBI, ozone, and 10 Pass would be invaluable yo my progress.

I wish my immune system dysfunction had been found sooner, with both underactive and overactive components and that IVIG and Rituximab might be the keys to wellness.

I wish I'd known about my hidden, chronic infections, which have damaged my body in so many ways, and that had o known how serious they were, I would have started antivirals and IV antibiotics sooner, rather than spending so long on non-drug solutions, which helped, but were not enough given how sick I was.

I wish I'd known sooner that I had ME/CFS. I just thought I had cancer related fatigue after I beat my cancer. If I'd known, I'd have attacked the problem differently and saved time and money.

I wish I'd known the bureaucratic battle I was up against with my long term disability insurance, health insurance, and employer. I would have applied for SSDI, which I still haven't done, as its a 2 year wait...

I'm glad I didn't know how much money this would cost, but I am glad I've spent over $100,000 out of pocket, beyond what my healthcare would cover to get the treatments I have, or I know if be in far worse shape than I am, with less hope of recovery.

I'm glad I've read voraciously, found the science behind any alternative treatment I've tried, and been able to have educated, peer to peer discussions with my doctors, who respect my input, as we work as a team to fix me.

I'm glad to have the PR community to learn from and bounce ideas off of.

I wish I'd known some people who are also trying to get well would criticize valid treatments and brilliant practitioners I've dealt with as quackery, even though I've experienced undeniable benefits - I'm glad I wasn't dissuaded in investigating these newfangled ideas for myself to find the truth in them. Had I turned my back on this supposed quackery, I wouldn't have made the progress I have...

Thank you for starting this thread.

 

[JaimeS]

I wish someone had warned me that mainstream doctors would be so utterly useless

Yes, number 1. We've got this cultural inculcation that some wise, older man in glasses and a white lab coat is going to help us sort our problems. I wish I could set fire to this idea in the minds of all patients. It's the source of a lot of our frustration, heartbreak, and false hopes. The worst is when I see it here as an expectation: "when will those people get to work and solve this for us?" Oh, sweet summer child...

I wish someone had told me to go see one of the top specialists right off the bat. It would have saved me months and thousands of $$.

Oh, man, YES. I went to KDM and made a good leap forward. People may think this is paradoxical in light of my previous comment, but by the time I went to see him I was far warier of physicians' advice. Some of his suggestions I took, others I took but amended based on my experience, and others I ignored totally. I trusted him as an adviser, not as a guru.

I wish someone had told me that the microbiome us such a key piece of getting well and that rotating foods, probiotics, and probiotics would be needed, in a constant effort over time.

I really underestimated how much diet and gut health was affecting my overall well-being. I thought something as simple as a food I'd eaten forever couldn't possibly be making me feel this bad. My advice definitely includes getting a food sensitivity panel done, and asking other patients what food sensitivity panel worked for them -- there are some junk ones out there.

I'm glad I've read voraciously, found the science behind any alternative treatment I've tried, and been able to have educated, peer to peer discussions with my doctors, who respect my input, as we work as a team to fix me.

YAS. Read, read, read, even if it's a paragraph a day. Don't trust anyone else to do the knowing for you.

@Learner1 you've said most of what I would have! However, a few additions:

At least in my own case, I had to learn to avoid things that mess with neurotransmitters and (some) hormones. Taking things that messed with my brain chemistry, even a little, triggered huge health losses for me from which it took months to recover, and caused some of the most frightening medical experiences of my life. If I could travel in time, I'd tell myself to get plenty of rest and stop trying to fiddle with my nervous system. But here are a few things in general I'd say to new patients.

Be empirical:

• Try things, remembering to start low and go slow; and recognize that this disease shifts. What may be good for you this month may be detrimental next month.
• Don't believe dogma, and that includes the stories you tell yourself.
• Go off and on things, just to make sure it's still helping, and/or to make sure it's really and truly responsible for the shift you've noticed.
• Give fat-soluble stuff and things that shift hormones longer before giving up: give it a full-faith try if you notice nothing at first. On the other hand, if you feel sicker right after the dose, drop the med immediately.
• Never start two meds or even lifestyle changes at once: do them one at a time. Otherwise you will never figure out which was responsible for your improvement or decline.
• Recognize that sometimes you're just worse: don't fall for magical thinking or Post hoc thinking (that is, just because two things happen in association with each other doesn't mean the first caused the second to occur). Refer to the third bullet, here.
• Keep a symptom diary for the first few months; thereafter only enter info when you're trying something new or you note a new symptom.

Be relentless:

Because the world deserves you: your talents, your voice, your empathy for those who are struggling just as you are. You deserve to be healthier: no input of time or energy into your own well-being is wasted.

Be kind (to yourself):

Your body isn't lying to you. You are sick. You are sick, even if your doctor or your family or your friends roll their eyes. You need to take care of yourself.

Finally, learn to let go of some things and try not to feel guilt over that. You are doing the best you can, and your fight isn't easy.

 

[JaimeS]

Okay, but there's more:

Don't just read research because it's important. Don't just post here because you're bored.

• You need to occupy your brain to the capacity that it can be occupied with your current levels of brainfog / exhaustion.
• You need to remember there are others out here like you. You're not going through this alone.
• You need to feel you are doing something about what's happening to you, or you will feel like a helpless victim. For me, it is hard to imagine a worse way to feel than helpless, my own body no longer under my control, my health or disability at the whim of some institutional Other.

Working for #MEAction and then for Open Medicine Foundation are two of the best things that ever happened to me with this disease, because I can begin to make a difference. I know others cope differently, but in my case I felt so much better once I was doing something about my disease and working towards change.

Some of us are too disabled to do any more that that 'read one paragraph at a time' and some are too sick for that, so be aware I'm not recommending you push yourself into oblivion. But learning what you can learn, and helping the way you can help is cleansing and awesome.

 

[Mrs Sowester]

I love your 'be empirical' advice in particular @JaimeS

 

[dadouv47]

Very good advises @JaimeS

Finding the best diet is probably one of the most difficult thing to do (but it's so important). We read all sort of ''best diet for CFS''; ''best diet for leaky gut'' while we are so different and some strict diet are way too difficult for some of us. I'm still figuring out what's the best diet for me after years of trials.

Exercise is also something very tricky. While we know how bad it can be for us, doing some small exercise can be very good (both physically than mentally). it also requires a lot of experience to understand your body, and to adjust over time according to your shape at one point (when you are feeling better or when you can't do anything because you are in a very bad shape)

 

[me/cfs 27931]

I wish I had been diagnosed earlier.

But how could I possibly know being told to gradually increase my exercise (GET) would harm me long term when I didn't know I had ME/CFS? When doctors told me the path to wellness was more exercise and finding the right antidepressant or stimulant?

How can the ~90% of undiagnosed ME/CFS patients protect themselves against exercise therapy if they don't know what is actually wrong with them?

There are a million undiagnosed ME/CFS sufferers in the US! This must change. Many, like me, have been told to exercise their way to health.

Exercise making people sick? That's crazy talk. Everyone knows exercise is good for you.

 

[JaimeS]

Exercise is also something very tricky. While we know how bad it can be for us, doing some small exercise can be very good (both physically than mentally).

This is not meant to be a biased statement but something quite literally about the differences between our bodies: I have only ever heard men with ME/CFS discuss doing this successfully. I did make an attempt to do low-intensity, short-term exercise (like 10 sit-ups or 15 min of gentle yoga), but I always felt worse afterwards. I think that all you can say is that you should up your activity when you feel able -- but never as a way of becoming more able. It just doesn't work.

I walk more steps now than I did before, but there was a time when I could barely clamber around my own house, and was totally unable to exercise.

It's only now when I'm 'very, very minor' that I get any hint of benefit to exercise (increased feeling of well-being, that strange, clean feeling like you've moved lymph or eliminated toxins? hard to explain, but everyone has experienced when well), and even then I'll also crash later on.

 

[lilpink]

I also regret spending money on the Perrin Technique

Ditto. I have no inclination to believe this can possibly work for anyone *properly* diagnosed with authentic ME. Wasted 18 months and lots of dosh ... I'd have got more of a buzz from buying a new handbag!

 

[Mrs Sowester]

Ditto. I have no inclination to believe this can possibly work for anyone *properly* diagnosed with authentic ME. Wasted 18 months and lots of dosh ... I'd have got more of a buzz from buying a new handbag!

And you could have bought an amazing handbag for 18months of Perrin Technique!

 

[JaimeS]

There are a million undiagnosed ME/CFS sufferers in the US! This must change. Many, like me, have been told to exercise their way to health.

On learning I worked in ME/CFS, someone told me a story about their niece, who'd just been diagnosed a year or so ago.

"But don't you think it's related to stress?" they said. "She just collapsed the moment she got to college."

I mentioned pathogens, and before I could continue, she filled in: "Oh, I see -- a new room, and they don't maintain them -- it could be filled with mold, or maybe she caught something from another student..."

I said I wasn't sure, but added that our conversation shows how easy it was to tell whichever story we prefer.

"But it was just so strange, so intense. She moved all of her things into her dorm on her own just fine. But when she woke up the next day, she couldn't move."

Me: "She... moved all her things in on her own. That night?"

Her: "Yes!"

Me: "and the next day... she couldn't move."

Her: "yes, that's why they thought it was stress...."

Me:

The upshot: a doctor diagnosed her as having CFS but had no idea why she should have had this reaction, and also concluded she had 'anxiety' about being at college.



So I guess what I would also tell new patients is all about PEM: what it is, what it feels like, how to pace / avoid this happening. It is very challenging to recover from PEM. Meanwhile you're miserable, it's harder to take care of yourself, and it's very easy to have a secondary crash. And it does seem to be (very, very rarely) permanent.