From very severe to moderate in two months

[bensmith]

...this is truly amazing, wow.

 

[leokitten]

I can work for 8 hrs + without crashing

And you are able to do this pretty much every day or at least on a part-time consistent basis without any delayed payback or PEM? As if you were before you got ill?

This is the crux of the issue for many, that even in milder ME you could push yourself for a few days at full work but the PEM and symptoms build and get worse and you eventually crash or need to stop for much longer than the few days you could push yourself to work like “normal”.

For many of the years I’ve had ME when I was milder I could certainly work 8 hrs a day for a few days without immediately crashing, but the deficit and payback would build and build, symptoms would become unmanageable, and I would have to stop to rest or too late crash for many days. I couldn’t consistently maintain the exertion needed to work full-time. Then as I deteriorated I couldn’t consistently maintain the exertion needed to work part-time, now I don’t even have the energy to shower or self-care and am in bed most of each day.

 

[bensmith]

Cfs is truly a bizarre disease that these meds could change so mucj. Like you said @leokitten the fact paused can do these things safely now is a miracle.

 

[leokitten]

Also @Martin aka paused||M.E. how has your sleep changed or improved with this treatment? Was insomnia or other sleep issues really bad for you before?

Sleep is also one of my worst issues, this symptom alone is enough to derail any kind of consistent ability to work. When I mentally or physical exert then in the evening hot flashes, super wired and exhausted, really uncomfortable feeling like overstimulated and can’t be touched, and I will not be able to sleep for days without major polypharmacy to knock me out. Sleep meds eventually stop working and then sleep gets inverted and only sleep a few hours in middle of the day every few days and super exhausted.

 

[bensmith]

Sorry @leokitten that sounds terrible. I have heard that ldn hurts sleep.

Ive taken abilify in the past and found it a hard ride myself. Couldnt handle it, might try it again though.

 

[leokitten]

Sorry @leokitten that sounds terrible. I have heard that ldn hurts sleep.

I’m not taking LDN but have asked my ME doctor to order it at the highest dosage 4.5mg. I took it for a while many years ago at the lower end of the dosage range and didn’t notice anything.

I’ve recently received both Abilify and Arcoxia (etoricoxib) and am waiting for the LDN as I’m going to do the same protocol as Martin and others have done.

 

[bensmith]

Great hope it works, i will likely attempt the protocal as well, but a good chance i wont be able to continue with hppd(trip disorder). Very risky play for me, but martins story is incredible. I hope it works and let us know how it goes.

@leokitten

 

[leokitten]

Great hope it works, i will likely attempt the protocal as well, but a good chance i wont be able to continue with hppd(trip disorder

Antipsychotics and other drugs can really help with HPPD, what is your psych doing to help you with this? You can PM me probably better to not take thread off track.

 

[bensmith]

Nothing atm, and yess i know. For some reason they didnt help me mucbni just got lucky and it went inactive. Still springs forward with essentially any drug that effects the mind, i think abilify too but its been years.

im still trying to find a doctor atm too.

where in maryland do you live? @leokitten im sure you get tired of this but i lvoe the wire.

 

[Martin aka paused||M.E.]

Hello everyone,

since I would like to contribute to a comprehensive picture of Abilify, I would like to inform you that since Friday I either a) have had a very strong crash or b) Abilify suddenly seems to work much worse.

The latter would surprise me, since it was uphill all week (I was suddenly able to climb stairs again) and then suddenly got worse on Friday evening. So chances are I just overdo it very hard ... I'll keep you posted.

Apart from the known sleep disorders, I still don't have any side effects.

Stay brave
Martin

 

[leokitten]

Hello everyone,

since I would like to contribute to a comprehensive picture of Abilify, I would like to inform you that since Friday I either a) have had a very strong crash or b) Abilify suddenly seems to work much worse.

The latter would surprise me, since it was uphill all week (I was suddenly able to climb stairs again) and then suddenly got worse on Friday evening. So chances are I just overdo it very hard ... I'll keep you posted.

Apart from the known sleep disorders, I still don't have any side effects.

Stay brave
Martin

Hi @Martin aka paused||M.E. please be careful and try very hard not to overdo it. I know it’s can be very difficult, when a treatment works your brain is suddenly awake and alive instead of the constant ME zombie and painful mush feeling, so you just naturally want to exert and live life. But getting PEM or crashing enough times will make you worse and likely cause the treatment to eventually not work anymore even if you take a break from it and start it again. Don’t know why but that seems to be the case based on PR testimonials across a wide range of treatments.

I’ve done so many treatments and none really worked. What I’ve really messed up was treatments won’t work if you are overexerting and crashing. With this illness it seems like to permanently improve it has to be baby steps and very, very slowly building up our capacity over a couple years or so with a treatment that’s working. I know it’s probably really frustrating.

 

[bensmith]

Very sorry martin get well soon.

Im not as smart as yall but maybe its tolerance?

 

[roller]

is this quite a common thing, "here"?
...that there is a massive improvement in mobility (+ others) and then its fragile like a feather...
weird, isnt it...

all the best for your recovery, martin!

 

[YippeeKi YOW !!]

since I would like to contribute to a comprehensive picture of Abilify, I would like to inform you that since Friday I either a) have had a very strong crash or b) Abilify suddenly seems to work much worse.

Oh, @Martin aka paused||M.E. , I'm so sorry, I know how debilitating, physically and emotionally, those crashes from better than usual heights (and hopes) can be.

And I know how very easy it is to over-do it when you suddenly feel so much better, so close to normal, whatever that is anymore, and somehow dont notice those little warning signals that you used to be attuned to, or maybe didnt even get in the new improved state you were enjoying ....

Dont despair !!!! I know that you know there could be any number of explanations for this setback, including your brain needing a little more catch-up time. Abilify is a powerful anti-psychotic, and even in small doses can so some impressive rewiring of your brain and it's uncountably numerous and diverse functions.

It was extremely thoughty and good of you to post this additional input to the ever-growing Abilify files. First hand experience is invaluable !!!!!

As always, sending the strongest supportive and positive vibes I can currently muster, for whatever that's worth, and several 's and 's ....

 

[YippeeKi YOW !!]

Im not as smart as yall but maybe its tolerance?

You totally are !!! You just havent been around the dismal ME block as many times as some of the rest of us here ....

i lvoe the wire.

Right there with you !!! Without a doubt, one of the 4 or 5 most absolutely brilliant things ever done anywhere, especially on TV .... can't say enough about it !!!!

 

[leokitten]

Hi @Martin aka paused||M.E. if I may ask, when you were mild or moderate severity level could doing enough mental exertion (e.g. doing work related to job or other) cause you PEM and crashes?

 

[Martin aka paused||M.E.]

Hi @Martin aka paused||M.E. if I may ask, when you were mild or moderate severity level could doing enough mental exertion (e.g. doing work related to job or other) cause you PEM and crashes?

Back in the days when I was mild I did not crash heavily... when I was moderate I couldn’t work... until last week with Abilify I was able to work as long as I wanted ... now I crash from reading for an hour

 

[Martin aka paused||M.E.]

How do you think about stopping Abilify and restarting it after a few weeks?

 

[leokitten]

How do you think about stopping Abilify and restarting it after a few weeks?

Martin I know you might not want to hear it, but based on the info from your Instagram feed you’ve been overexerting and crashing multiple (many?) times during your Abilify trial. It’s probably likely that this played a role in the treatment eventually not working as well.

 

[Martin aka paused||M.E.]

Martin I know you might not want to hear it, but based on the info from your Instagram feed you’ve been overexerting and crashing multiple (many?) times during your Abilify trial. It’s probably likely that this played a role in the treatment eventually not working as well.

I crashed last week, I know that... so hopefully it will get better with resting