If You Could Do it All Over Again What Would You Would Do Differently?

[Cort]

If you could do it all over again, what, in retrospect, are the things you would do differently regarding your ME/CFS and or FM?

For me:

• Pacing - I would pace a lot more...
• The Trip - I was headed to LA from Santa Cruz for a holiday family get together and I noted a bad smell in the car. I opened the hood and realized that exhaust was pouring into the engine. I kept on. I made it to LA feeling nauseous but otherwise OK - but a couple of weeks later I developed the MCS I've dealt with it for about 20 years now. Maybe it never happens if I turn back...
• The Nozzle - For some reason that I now cannot remember I needed to do something to the air conditioning in my van. I asked somebody who I thought knew - what would happen when I released the freon. He said nothing. Something did happen - I opened it up and it was like an explosion - sending all that junk right into my lungs.....My MCS - now already in full bore - got that much worse. (I was trying to save money - later I found it cost about $25 to do it right (lol)...I would have definitely taken the car to the shop.
• Treatments - I would take treatments a lot slower. Every time I increased my energy with treatments my system would basically collapse. I would be much slower with that now.
• Treatments - I wouldn't have abandoned supplements. Given the results I'm having from the KPAX supplement protocol I would have stuck with them longer

 

[Who Me?]

@Cort Please edit the title I read it a bunch of times and thought I was nuts.

I would have taken the disease a lot more seriously. After my doc fired me for non compliance (aka not buying expensive supplements from him) I really did nothing. I was functioning ok so it didn't matter.

And no internet back then so no way to know what was going on so you had to know someone who had a doc. And you had to have money. Or no money.

 

[justME]

get the bugs (probably first just Epstein Barr and that made me susceptible to a whole bunch more) out right away instead of waiting for 3 years when it was (almost) too late and trying time, energy and money (from my parents) consuming treatments that just worked around the problem or contributed to it

also, about the MCS, I would've not dragged my mattress around the premises, think that's when somehow my polyether allergy started

 

[Cort]

@Cort Please edit the title I read it a bunch of times and thought I was nuts.

I would have taken the disease a lot more seriously. After my doc fired me for non compliance (aka not buying expensive supplements from him) I really did nothing. I was functioning ok so it didn't matter.

And no internet back then so no way to know what was going on so you had to know someone who had a doc. And you had to have money. Or no money.

I removed the last part. I added the last part because I added links to it on Twitter and Facebook - but it didn't read well.

Alot of people back then sold their own supplements. I wonder if they still do?

 

[justME]

yeah this is way better, title-wise

 

[Who Me?]

Alot of people back then sold their own supplements. I wonder if they still do?

My NP does but you can get stuff so much cheaper on line I don't know why anyone would buy from a doc.

(thanks for the title edit)

 

[Zapped]

Rest, rest, and when I had rested I would have rested some more, while refusing to deal with all but
absolutely necessary stressors, mental and physical for at least 6 months - then look-see... .

At the same time I would have taken whatever anti-virals were available in that era since I suspected even then
that the onset (for me) was viral related (from Lake Tahoe - even though the progressive nature of my own malaise
may have been the result of some morphed mitochondrial dysfunction ...).

 

[lisapetrison]

I would have done a trial away from my house without any of my stuff, to see if I felt any different when away and to see if I felt worse when I returned.

I eventually did this and it made all the difference in the world. But it would have been a lot better if I'd done it early on, before I had been living sick in the house for more than a decade. Then maybe I never would have gotten so sick.

 

[Alice]

I would have taken this illness, (and pacing) MUCH more seriously, instead of trying to 'keep going', despite worsening symptoms. I'm paying for that four years later. It's heartbreaking

 

[Zapped]

I would have done a trial away from my house without any of my stuff, to see if I felt any different when away and to see if I felt worse when I returned.

Hmm. Could you expand on 'trial?' What is the implication, e.g. environmental toxins, caught up in 'rat race,'
from home, etc.?

 

[Cort]

I would have done a trial away from my house without any of my stuff, to see if I felt any different when away and to see if I felt worse when I returned.

I eventually did this and it made all the difference in the world. But it would have been a lot better if I'd done it early on, before I had been living sick in the house for more than a decade. Then maybe I never would have gotten so sick.

This is one thing that few people have done - but I'll bet more people all the time are thinking about it.

 

[Carrie Conley]

• I would have went through doctors until someone could treat me and tell me what was wrong with me. Instead of just listening to my 1 or 2 doctors saying it was my weight, or growing pains or what ever else they were pushing it on to.
• I would have educated myself more years ago even if we didn't have internet.
• researched holistic ways etc instead of jumping in with narcotics etc.

 

[Tammy7]

I wouldn't have pushed myself to keep working while feeling like death warmed over....................Would have paced more..................would have asked others for help and divorced those who were not supportive.

 

[ceil rothbart]

Retrospectively I should have asked for help to research doctors or treatments.
I was diagnosed at Mayo Clinic but not treated. The amazing resources available today we're not available then. I did find several researchers but they had no referral. What was CFIDS had no referral. I was alone, too fatigued to do anything for myself. I needed a support system, I believe others did not help me because they did not know what to do either and no one understood the severity of my illness or believed it was an illness. Most of all I needed to ASK FOR HELP.

 

[justME]

some morphed mitochondrial dysfunction ...).

could you elaborate?

 

[Folk]

Well I've had pain for 8 years.
But the CFS or CFS lookalike symptoms just showed up now (5-6 months ago).

So I'm trying to do now about the CFS what I would do if I could/have to do it all over again for the FMS.

First is: Use medication. I didn't want to depend on meds so I've lived this eights years refusing to take almost anything to help my pain (I did some tryouts but as soon as any side effect showed up I would cut it right off).

Second is: Search for a doctor who can help me for real and not one who say it's in my head, neither one who says it's in my head using fancy words.

Now I've gone to more than 100 doctors here in Brazil, and it's pretty clearly no one can trully help me here (except to manage some symptoms, which is what I'm still seeing some of them for). So I just need to decide which doctor to go.
It's probably between Dr. Kaufman and Dr. De Meirleir but almost certainly Dr. Kaufman.

 

[CathK]

I would have stopped working a lot sooner, instead of pushing until I was nonfunctional.
I would have ditched my nonsupportive docs immediately, instead of believing they had my best interests at heart and if I just explained more they would get it. Problem is, I still believed that my docs *did* still have my best interests at heart: until I learned that no, they didn't, I didn't understand that I needed to move on. I'm fortunate that I have been able to find doctors that do care about treating me to the best of their ability - there are good docs out there.

I think there would be a career opening for CFS patient advocates. I would have paid a *lot* of money to have someone knowledgeable direct me to the good docs, and take care of the steps in that process that I was just too sick to do.

 

[Zapped]

could you elaborate?

The reason I referred to a viral condition morphing into Mitochondrial Dysfunction (MD) is because of the nature of MD's cellular biology. [For anyone reading not familiar with MD, it is one school of thought defining the etiology of ME/CFS at the cellular level. Here's a quick link for an intro: https://en.wikipedia.org/wiki/Mitochondrial_disease.]

In summary, in MD the energy portion of a cell is depleted and the cell loses its ability to function as intended; when this happens en masse it causes major symptoms in many long term illnesses (per ref in Wiki, et al).

I'm simply suggesting that this may or may not have been the case of my own experience; likely so, IMO, and I'm not selling. Such an opinion depends on one's interpretation of the research. If you go looking you will find very strong professional opinions (and research) on this subject - even an international organization!

Viral and/or MD caused CFS would not be mutually exclusive though the treatments are quite diifferent; and protocols for one would not necessarily be effective for the other. (A full fledged discussion of MD vs Viral etiology in a support forum may get too esoteric and bogged down by the scientific elite; but that's a moderator's call and I defer.)

I hope this byte of explanation is clear and related to your request. Cheers.

 

[Cort]

From Twitter:

Jane Skeates ‏@EJS1958 13h13 hours ago
@CortJohnson @TweetTipsforME If I knew then what I know now, rest more/sooner before permanent damage was done. Too late now!

 

[Cort]

From Twitter:

Chris Willis ‏@_chris_willis 15h15 hours ago
@CortJohnson @TweetTipsforME Find the best doctor first instead of last. He's a slippery sucker.