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

[me/cfs 27931]

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."

Similar to my college experience. And all the specialists at Dartmouth looked me over, ran a bunch of tests, then threw up their hands and said they had no idea what was wrong with me.

CFS was never mentioned. I dropped out of school for a year, then return as a part time student at a less competitive school. I never understood why I couldn't manage a "normal" load of classes, and it was quite a blow to my self esteem.

I had quarters when things came easily and classes were a breeze followed by quarters where I could read a chapter 3 times and recall absolutely nothing. At the time, it made absolutely no sense.

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..

Yes x1000.

 

[JaimeS]

My response to this has turned into a blog post. I'll post it soon.

 

[me/cfs 27931]

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.

Then the patients can educate their doctors on what PEM is.

I say this only partly in jest. After diagnosis, I was constantly explaining to doctors what PEM is. Some accepted it and some just rolled their eyes. The eye rolling doctors have been replaced.

 

[Subtropical island]

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 trusted him as an adviser, not as a guru.


I really underestimated how much diet and gut health was affecting my overall well-being.

Yes
Yes
I think an elimination diet which doesn't forget to consider things like additives and preservatives is best (mine was a gut problem with sulphites and another preservative I've not pinned down yet, not dairy, not wheat etc). The trouble with a panel is that you may get false positives (which waste your energy avoiding) so, as you say, don't take it as gospel: test it yourself before you believe/know it applies to you. It's a clue, not a diagnosis. These changes need to be a net benefit to you, not another stress/effort/waste of energy.

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

...

If I could travel in time, I'd tell myself to get plenty of rest and stop trying to fiddle with my nervous system.
...

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.

Yes. Thank you.

PS please post a link to blog post? Or let us know?

 

[IreneF]

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.

That's interesting, because several other people found Holtorf to be a waste of time and money.

 

[lilpink]

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

I so could!

 

[TiredSam]

Don't just post here because you're bored.

Ouch! Tough advice, but it may just give me a few hours of my life back. I'll try it .

 

[ukxmrv]

Don't see a doctor (or any practitioner) unless they actually know about ME.

A random Neurologist, Nutritionist, Osteopath, Chinese medical expert, GP, Homeopath, Immunologist isn't likely to be of much use and can cause harm

 

[trishrhymes]

Hi everyone, Interesting thread, thank you.

A few random comments:

Don't just post here because you're bored.

Why not? Great for de-stressing, averting loneliness, passing the long day when there's no energy for anything else. Being part of something cheers me up. Yes, I'm one of the worst offenders!

You need to feel you are doing something about what's happening to you, or you will feel like a helpless victim

I agree in principle, in an ideal world, but for a lot of the time I find just living day to day as well as I can manage without dwelling on my situation works better. I don't feel a helpless victim, I have a realistic level of acceptance that my body needs to rest and pace very carefully most of the time.

Maybe that's a UK thing, as there are almost no doctors who can help us in any way. Telling me 'you need to ...' can slip perilously into 'you're not trying hard enough, you don't really want to get well' - victim blaming. I'm sure that's not what you meant to imply.

Maybe in your blog you might reconsider the wording: 'You need to...'

I would also tell new patients is all about PEM:

Yes, yes and thrice yes.

I wish I and my doctor had understood this right from the start. My current doctor still hasn't really grasped it, so I've given up. And there are no specialists anywhere within range who know anything about ME. The nearest clinic pushes some dreadful psychological nonsense.

 

[pamojja]

You need to feel you are doing something about what's happening to you, or you will feel like a helpless victim

I agree in principle, in an ideal world, but for a lot of the time I find just living day to day as well as I can manage without dwelling on my situation works better. I don't feel a helpless victim, I have a realistic level of acceptance that my body needs to rest and pace very carefully most of the time.

Seems no contradiction at first sight. You feel you are doing something about being best with it, and therefore don't feel victimized.

Maybe in your blog you might reconsider the wording: 'You need to...'

I actually love the term 'need', because so often we don't listen to our own needs anymore, but compromise on what's expected. 'You may feel the need..' doesn't seem to make that clearer, it seems.

 

[Wonko]

I would never have believed anyone who warned me, despite the fact that on the day I went to the doctors about my mystery virus I was weak enough, as someone in their early 20's with no other known health issues, for it to take me around 3 hours to walk the half mile to the surgery.

Within a few, very uncomfortable and unpleasant, weeks I was functional, not at my previous levels, but enough for my lifestyle at the time, I still wouldn't have believed anyone.

Roll on a lot of years to my period of being bed bound, I still wouldn't have believed anyone.

I may be a little slow, even without the cognitive impairment.

 

[TiredSam]

Why not? Great for de-stressing, averting loneliness, passing the long day when there's no energy for anything else. Being part of something cheers me up. Yes, I'm one of the worst offenders!

Oh, ok, thanks for that. Back to business as usual .

And this does occupy my brain. Maybe @JaimeS's brain is bigger and needs more occupation. Or maybe I could be doing more with mine but quite like sitting around ranting instead.

 

[Kenshin]

The main advice I would have given myself at onset:

- Rest, don't push yourself (I did exactly the opposite and got worse)

- Realise you have a real and serious illness (because it is not validated as such by medical proffessionals, a newly ill person may be more likely to believe they are simply fatigued for some reason.)

- Stop trying to fight through symptoms, you cannot make them better through any amount of mental willpower or physical force, your resistance is not only futile, it is making it worse.

- Accept that you are not going to achieve much, find something sedentary to quell your boredom.
Give yourself a break because you are ill.

- Treat yourself - because this illness will drain most of the fun from life.

- Eat little and often.

- And this:

Don't see a doctor (or any practitioner) unless they actually know about ME.

A random Neurologist, Nutritionist, Osteopath, Chinese medical expert, GP, Homeopath, Immunologist isn't likely to be of much use and can cause harm

The hard truth in my exp...This disease has taught me that:

- Most people don't have a clue what's going on, health proffesionals included.

- Homeopathy, crystals and meditation are weak sauce!

- Some herbs can be effective, but usually the benefits only last a couple of weeks.

 

[arewenearlythereyet]

I would add that always push your GP to do all the blood tests to eliminate other diseases.

Challenge your results and make sure you critically assess the actual result for what it actually means.

Get an official diagnosis ..it will help you in so many ways to have this help you argue your case with employers And benefits people etc

EDIT: should also add...don't forget you may have more than one thing going on at the same time POTS, pernicious anaemia, hypothyroid etc

 

[Invisible Woman]

As @JaimeS said earlier be empirical. Keep an open mind, but make up your own mind about things (if that makes sense?).

I one person tells you Treatment X was great, try to find someone else who doesn't think so. For any treatment conventional or otherwise. Get multiple opposing opinions if you can, because that will give you a much better picture of how likely you are to be helped, or harmed.

 

[JaimeS]

Ouch! Tough advice, but it may just give me a few hours of my life back. I'll try it .

Ha! I mean, post when you're bored too! But not JUST 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.

As in, it's important to be with other patients for reasons besides boredom!

 

[blueberry]

I wish I had known in advance that I was going to be offered a lot of unsolicited (albeit well-meaning) advice from strangers on a regular basis. And that would drive me mad. I'm much more prepared for it second time around!

 

[JaimeS]

Why not? Great for de-stressing, averting loneliness, passing the long day when there's no energy for anything else. Being part of something cheers me up. Yes, I'm one of the worst offenders!

See my comment to @TiredSam

Or maybe I could be doing more with mine but quite like sitting around ranting instead.

....seems we allll do.

But in all seriousness, a place to rant without judgement is worth a lot. And sometimes, those ranty threads turn hysterically funny, which I think we all need.

Stop trying to fight through symptoms, you cannot make them better through any amount of mental willpower or physical force, your resistance is not only futile, it is making it worse.

A million times yes! I was raised with that Protestant work ethic: just work harder. It took longer than it ought to've to convince my mind and body that I couldn't work my way out of this through sheer determination and force of will. Finally giving myself permission to rest was one of the best decisions I could've ever made for my well-being.

- Homeopathy, crystals and meditation are weak sauce!

- Some herbs can be effective, but usually the benefits only last a couple of weeks.

Some of the issues here on PR recently have been from people denouncing one treatment or defending another. My own, personal opinion is also that homeopathy, crystals and meditation are 'weak sauce' lol, but if someone said meditation had really helped them, I'd have no objection to that in principle.

The only thing I would object to would be if someone implied meditation had cured their ME and everyone should jump on board or else they really don't care about themselves, or some such blah-de-blah. I think people are worried about others spending money they should be using for more effective things in the case of homeopathy or multiple OTC treatments. Also: emotionally, it may sound like the person who is touting a treatment is saying that if others were only trying harder, they'd feel better, when in reality we are all trying as hard as we possibly can.

So I guess my final piece of advice is to research everything that people are saying here on PR and in other patient-spaces -- and the recommendations from your doctor, which may include graded exercise and other discredited treatments -- and take all you read with a grain of salt. In the end it is your decision what to take and try and what to refuse, within your financial and logistical means.

 

[JaimeS]

PS please post a link to blog post? Or let us know?

Promise!

 

[alex3619]

I may be a little slow, even without the cognitive impairment.

Slow, or determined?

It took me a long time to realize I cannot control or beat this by myself. I was determined to keep trying, until I had that realization.