I’m rapidly deteriorating— can relapsing-remiting ME turn progressive?

[serafim]

I had a series of stressful events in my life that caused me to crash in early july. ever since then, every time i got PEM, i haven’t recovered from it. My baseline was so unstable it was really hard to gauge what was going to give me PEM. I went from moderate to severe to very severe in 3 months. Something similar happened to Whitney Dafoe. I’m very scared. The worse thing is that i don’t understand what’s happening. I haven’t changed my medication. Has anyone here experienced something similar?

I haven’t developed any new symptoms. Which is good i guess but also concerning because it makes me think this isn’t a crash anymore, just my new baseline. I’m down to 40 minutes pf screen time per day. Can’t even listen to audiobooks anymore. I’ve done 1 week of no stimulation rest with the exception of these 40 minutes and i don’t know how much longer i can take this. I’m not improving.

For the most part my illness has been relapsing remitting. I’m sure i have CFS since 2022, but it could be i had it for much longer and was slowly deteriorating until i realized i had it and started pacing.

What do you think? Am I still in a crash or do i have progressive CFS now? Please be honest.

 

[hapl808]

What do you think? Am I still in a crash or do i have progressive CFS now? Please be honest.

Probably a bit of both. I have found my general trend for 25 years has been downward, but I've pulled out of some crashes to some degree even when I thought I wouldn't. I've had crashes that lasted for months, particularly when injured, exposed to allergies for long periods, or some stressful periods. Often I found that really severe crashes could last months, but eventually I would recover 'somewhat' back to my baseline, but not all the way.

Of course, I can't really say as we're all different. I'm 'lucky' that I can do hours of screen time per day, as long as I don't try to do anything creative or challenging. Then it drops down to 20-30 minutes. I find rewatching Youtube videos is good. Audiobooks are actually a bit tough for me, and music is totally out.

Like MS, I think relapse remitting can turn into progressive, which then can actually turn back into relapse remitting, which of course means we truly have no idea and cannot predict much at all.

No new exposures, right? Different food, allergens, environment, phone use, people around, etc?

 

[Long Haul Mono]

I’m down to 40 minutes pf screen time per day. Can’t even listen to audiobooks anymore. I’ve done 1 week of no stimulation rest with the exception of these 40 minutes and i don’t know how much longer i can take this. I’m not improving.

Sounds a little familiar to what I had a while ago. Thankfully I found a GP that diagnosed me with something like Aspergillosis.

I'm not concluding that you have similar, however when it went from bad to worse I found I couldn't do anything for longer than an hour before I had to rest. It may be worth investigating just to rule it out.

I'm not sure how I got infected. This type of mold is found in composting bins or rotting leaves/vegetables. Typically, a functional immune system can quickly dismiss this before it would "make itself at home".

I still have fatigue issues, namely (currently) nocturia, which is a work in progress to try to figure out, but this infection is a nasty piece of work. I believe mine was due to my body always feeling cold. Mold loves cold, so I hear.

 

[serafim]

No new exposures, right? Different food, allergens, environment, phone use, people around, etc?

i had to move back with my family. different city, hence the crash. so new everything. but i dont have anywhere else to go. i keep deteriorating despite very strict pacing. to my knowledge there’s no environmental toxins here.

 

[serafim]

Sounds a little familiar to what I had a while ago. Thankfully I found a GP that diagnosed me with something like Aspergillosis.

what are the symptoms of that? i only have a sore throat that’s worse than usual but no pther symptoms are out of the ordinary except for the fatigue which is getting really bad. like i’m afraid i’m gonna die bad

 

[Long Haul Mono]

what are the symptoms of that?

The primary symptom was the progression of overwhelming fatigue, ie above and beyond the typical for ME.
Over time I deteriorated down to being capable of only 1hr of very light activity before needing to rest. There was no pushing past this need to rest. I can't recall (or rather I don't know) how many days/months/years this infection took to finally (almost) make me bed bound.

I was above-dose with Modafinil (eg 300-400mg) with caffeinated drinks, and I felt nothing. Most people would be almost leaping out of their skin on that kind of intake.

Lately I went back on Modafinil/Armodafinil but found the old dose is now way too much. Even 100mg causes a crash, wasting the entire day.

 

[serafim]

The primary symptom was the progression of overwhelming fatigue, ie above and beyond the typical for ME.
Over time I deteriorated down to being capable of only 1hr of very light activity before needing to rest. There was no pushing past this need to rest. I can't recall (or rather I don't know) how many days/months/years this infection took to finally (almost) make me bed bound.

that sounds a lot like me. so you took antifungals and that went away?

 

[Long Haul Mono]

that sounds a lot like me. so you took antifungals and that went away?

It's possibly something of an irony that I'm discussing this fungus problem while sucking on an anti-fungal lozenge.

My old foe has returned. At the moment I have a slight improvement in the fatigue and was lucky to have one more script repeat of Fungilin, which is one treatment for this issue.

Prior to this I used Fluconozole, which helped but has a nasty side effect refered to as 'die off', or the fungal waste as it's being killed off makes you feel like hell. Nistatin is another, but it's hit and miss, ie some have success with Fluconozole; others with Nistatin, but it seems to clear things up.

Why does it keep returning? My body just doesn't seem to be able to stay warm enough to become uninhabitable to fungal infection.

This relates to the ominous warning my GP gave me, either I stay here in this cold climate and continue to take drugs to control this repeated infection, or move to a warmer climate.

I'm currently arranging a short stay interstate to test the latter. I have to drive there as I have a few things I need to take with me that I couldn't on a plane. Not sure how I'll do this. It's a 10hr+ drive... alone.

 

[serafim]

how were you diagnosed with this? is there a blood test? is it like a systemic infection or a gut dysbiosis thing?

I'm currently arranging a short stay interstate to test the latter. I have to drive there as I have a few things I need to take with me that I couldn't on a plane. Not sure how I'll do this. It's a 10hr+ drive... alone.

that’s a tough situation. hope the trip goes well!

 

[Tammy]

What do you think? Am I still in a crash or do i have progressive CFS now? Please be honest.

To be honest, there isn't a fast and hard answer to that question due to how unpredictable CFS is. There were times I was at the lowest of lows feeling like there was no hope only to turn a corner for the better. Just no way to try and figure things out sometimes. CFS is way too complicated for the most part.

 

[serafim]

To be honest, there isn't a fast and hard answer to that question due to how unpredictable CFS is. There were times I've been at the lowest of lows feeling like there was no hope only to turn a corner for the better. Just no way to try and figure things out sometimes. CFS is way too complicated for the most part.

Does my experience seem unusual to you? i’m just trying to understand what’s going on and whether it’s worth looking into comorbidities again. I could go to a hospital but only if it’s worth it, i’m so severe right now that it will definitely cause PEM

 

[Tammy]

Does my experience seem unusual to you? i’m just trying to understand what’s going on and whether it’s worth looking into comorbidities again. I could go to a hospital but only if it’s worth it, i’m so severe right now that it will definitely cause PEM

As I mentioned before, there just isn't an accurate straight forward answer. I do know there have been others that have been in your situation. I'm sorry you are going through a scary period right now. I remember those scary periods very well. Sending hugs.

 

[Emmarose47]

Hi
I am moderate severe.
I moved in Jan this yr but I just had my normal crash (which surprised me) and after 6 wks returned to my normal baseline..
I was convinced I was getting some recovery as I'd been able to socialise with new people here and even went to a garden small gathering for a short time..
Then I bought a mobility scooter and went out a little way along the road. That coupled. With socialising and having a work man over and I crashed (this was begin of June. I haven't returned to my previous more stable baseline and its now over 4 mths. I can do less than before in terms of walk and socialise. I'm OK if I don't do either of those things except walk around my apartment. But when I go outside for air even though many people know of my condition I open conversation due to solitude otherwise. Also my home helps come and I chat.
What I need to do is not chat and keep conversation to a v minimum but I don't feel willing to do that or should I say when I speak. With them I am feeling OK to Do so until consequences happen..
Groan it's a hard condition to. Manage there is no doubt about that.
There is always hope for us..

 

[Kailyn]

Hi everyone. I know I am coming in late here, but I wanted to say that this thread is really helpful for me as a caregiver, I wish my husband could read it. We would really like to know more about the transition back from very severe to severe- I know its not something that can be counted on, but we just want to know if it happens at all.

 

[Long Haul Mono]

Hi everyone. I know I am coming in late here, but I wanted to say that this thread is really helpful for me as a caregiver, I wish my husband could read it. We would really like to know more about the transition back from very severe to severe- I know its not something that can be counted on, but we just want to know if it happens at all.

The closest I've ever come to having my mild ME brought under control (manageable) was with the help of an integrative medical practitioner, or more-specifically a diagnostic GP.

The bulk of GPs are 'assembly line doctors', ie you get 15 mins to try to cram a lifetime's worth of information about an incredibly complex and seemingly incurable disease into half that time and hope the GP can find you a solution with the minutes/seconds left of the appointment. This simply does not work for a complex disease such as ME.

If you find your GP is just running the same blood tests and sending you to specialists without any overall diagnostic plan, they're wasting your time and money, as well as contributing to a soul-destroying downward spiral of hopelessness.

Can you get back from very severe? I think it's possible. My current GP brought me back from the brink but I haven't really made strides toward regaining any real quality of life.

I mentioned this in another post... my current GP discovered an internal fungus infection called Aspergillus, which I heard you can contract from compost bins and garden soil products, to name a few. This almost made me bed-bound. As a suggestion I would discuss this with your GP to rule out if your husband has some sort of fungus/mould infection. At the same time check your home for signs of mould/mildew/rising damp. Some people are very sensitive to this and prone to repeated infection.

 

[serafim]

hey @Kailyn, i’m the OP and i’m doing much better atm. i can’t freely use my phone or cook and regularly shower like i used to, but i can go to the bathroom whenever i want, listen to audiobooks pretty much all i want (not music though) watch short videos and read a limited amount of time. what’s helped me the most is LDA and i suppose time. And, idk if it helped me improve but sedatives helped to stabilize my condition when i was very severe. I took Mirtazapine at night (sometimes Pregabalin, Quetiapine or Zopiclone instead) and it was enough to stabilize me during the day. It slightly dampened the sensory sensitivity and the hightened anxiety i experience during bad crashes sometimes. Best wishes to your husband🧡

 

[Kailyn]

hey @Kailyn, i’m the OP and i’m doing much better atm. i can’t freely use my phone or cook and regularly shower like i used to, but i can go to the bathroom whenever i want, listen to audiobooks pretty much all i want (not music though) watch short videos and read a limited amount of time. what’s helped me the most is LDA and i suppose time. And, idk if it helped me improve but sedatives helped to stabilize my condition when i was very severe. I took Mirtazapine at night (sometimes Pregabalin, Quetiapine or Zopiclone instead) and it was enough to stabilize me during the day. It slightly dampened the sensory sensitivity and the hightened anxiety i experience during bad crashes sometimes. Best wishes to your husband🧡

Hi serafim!
Thank you so much for your response! I'm so happy and relieved to hear that. Ahhh yes! I'm hoping for your continued recovery!

I'll definitely take a note that LDA helped you. We actually have it, but my husband hasn't wanted to try it, based on how sensitive he feels to LDN. (I'm slowly reading through one of the PR forums about it, to better understand others' experiences.)

This is also really helpful information, in terms of sedatives. We're realizing not all are created equal, and the Xanax that his former PCP gave him (chalking this up to anxiety) might hurt more than help, even when he's experiencing panic.

 

[serafim]

I'll definitely take a note that LDA helped you. We actually have it, but my husband hasn't wanted to try it, based on how sensitive he feels to LDN.

i also recommend joining the Abilify for MECFS facebook group. It’s known that many of us are extremely sensitive to medication. I’m also one of those people. I recommend to start as low as you possibly can, like 0.05-0.1 mg. I had to take breaks of several days inbetween doses to tolerate it (it’s very long acting, so that’s ok). Otherwise it was too stimulating and disturbed sleep.