• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

No rhyme or reason to crashes?

outdamnspot

Senior Member
Messages
924
Does anyone else get really confused about why they crash or feel better on a certain day? I'll give an example:

Two days ago, I ate something that seemed to effect me negatively at dinner; I was shaking, fatigued, restless. I went to bed feeling horrible, wondering how I would even sleep or make it through the next day. I only got about 5 hours sleep and woke up in the same state, overcome by dread; I felt weak and inflamed. I lay there, panicking for an hour, then forced myself up. I took my hydrocortisone dose and had a small coffee and was surprised that I felt completely fine ... great even! I went to the store and got groceries (which is not 'overdoing when I feel okay) and had a productive day (by my standards), which means being able to watch Youtube, chat online etc. I went to bed feeling naturally tired, which is usually a good sign, and made sure I avoided any problematic or inflammatory foods.

My sleep was fine and woke up feeling okay-ish. I took my HC dose and had a small coffee and crashed instantly and I can't even figure out why. Maybe I overdid it yesterday? It's so strange though, because if I get enough sleep and stick to the correct foods, I should be semi-functional. It makes no sense.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
For me, hydrocortisone is only one dimension and gets me so far.

For me to have a good day, I need to:
  • Take T3 and T4 when I wake and T3 4 hours later
  • Take NAD+
  • Take hydrocortisone 2 hours after waking and 4 hours later
  • Take glutathione and BCAAs
  • Avoid food and seasonal allergens. Take antihistamines, vitamin C and B5 if I have allergy symptoms.
  • Take POTS meds
 

outdamnspot

Senior Member
Messages
924
I have no money and can't get medical care anymore, so have to work with what I have unfortunately :(
 

MTpockets

Senior Member
Messages
202
Location
AZ, USA
My short experience with steroid based treatment is that it masks my warning signals. So I tend to feel fine and do more than I should because my signal to stop isn't going off. I have to do less than I feel like I can to avoid a crash. Does that make sense?
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Body can trigger cell danger response spontaneously.
Pdh pathway gets shut.....glycosis and aerobic respiration fails miserably.
I have noticed body reacts to food triggers much more.in morning and early day. Hence I dont eat now till about 3pm. Much more stability.
Less sleep works better mostly in my case too. I think immune system doesn't ramp up fully in lessened sleep state.

Similar to learner I focus on high doses of bcaa...glutathione and thiamine and carb avoidance.
 

outdamnspot

Senior Member
Messages
924
Potentially weird question but could excessive iron intake trigger a crash? I made the mistake of cooking directly on the pan last night and my food tasted metallic. I've read food made on an unseasoned pan has 10x the iron levels
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Doubt it. Trigger seems to be the morning stuff.
After a good sleep body immune system really high alert and fresh in morning. I just find it easier to go nil by mouth until it calms the f down in afternoon. Cos a crash can take days to get back to baseline.
Yea pred is a good cfs masker but rebounds from it can be harsher.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
@outdamnspot I have been thinking about this for years. Since you started this thread I have been trying to walk back though the last few months. I was really feeling better much of the time.

I thought there was a connection with the energy that it takes to be in social situations that are stressful, or unhappy. Then I found that really super joyful times can cause a crash too. I have been trying to stay very medium, and be aware if adrenaline kicks in. I usually crash after I have a state of adrenaline.

The food connection is huge for me, if I have sugar or carbs as in bread, or now it seems too many potatoes can cause a crash. The carbs that seem to be okay are green leafy vegetables.

Protein makes me feel better, eggs are a safe bet.

Learning a new task, especially of I try to go too fast and learn at my pre illness or remission pace is a surprising trigger for a crash.

My crashes come with intense physical pain, if I get too upset about the crash it really lasts longer. If I surrender to it, it seems quicker. I learned all this about myself by journaling everything, amount of sleep, meds and sups, every bite of food. Everything for 4 months now and I can see patterns a little. I do still get surprise crashes. :((

I don't sleep well at the beginning of a crash, but as I am coming out of it I sleep and sleep. Pacing is the only thing that really helps me, but it is so hard!

I have been cooking on cast iron all my life, and was always comfortable with that. My cast iron is all seasoned well. Seasoning a cast iron is really easy, it just takes a little time. You might want to wait for cool weather if the oven heats the house up. Here is a how to article with a video on how we do this in my part of the world.

Hope this helps you in some way.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I've had plenty of, if not crashes, at least 'feeling really lousy' periods that have been hard to figure out. Sometimes there's a simple explanation, usually solved when I check to see if I've forgotten to take my cumin or iodine. :redface: Another time, I mentioned it to a neighbour, and she said that most of the guests at the gathering I'd attended had come down with viral encephalitis, so that explained it. Other times, I never figure it out.

Sometimes I feel lousier than usual, and I don't know what caused it, but I do know what might treat it. I was feeling that way the last two days, and took some arginine and BCAAs yesterday, so I'll see how I feel later today.

Mysterious worsening of symptoms just seems to be part of ME.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Sometimes I can trace crashes to being overtired or doing something extra strenuous a day or so before. Sometimes 2-3 days before!
But not always. Sometimes they come on with no obvious cause.
Likewise my "mini remissions". Like today...I felt perfectly okay and more or less just like my normal self! Again, I have no idea why.
I can't trace any triggers to foods. But I think I have noticed a tiny pattern of feeling a little better when I eat more protein.

Sometimes I can get horrible sleep or very little sleep and feel okay the next day. Naturally tired but not unwell. And sometimes when I get wonderful sleep I can feel just awful the next day.
I can't understand what's going on, a lot of the time.
 

BeADocToGoTo1

Senior Member
Messages
536
Yes, I used to, for years. It was so frustrating, scary and depressing. Even from deep sleep I would sometimes wake up in utter panic, dread, trouble breathing, heart skipping. For many months the longest I could sleep was in about 30 minute blocks. In hindsight it was my body waking me up via an adrenaline dump due to hypoglycemia and nutrient deficiencies. And many are familiar with the effects of an adrenaline dump such as weakness, fatigue, shaking, etc.

The 'mini remissions' as Wolfclub called them were unpredictable and sometimes would last hours, sometimes days, sometimes weeks. There seemed to be no clear reason for it, and doctors had no idea.

But, I think some of you have read me mention this before (sorry for the repetition), but please have your nutrient levels tested and check for a potential root cause of pancreas damage such as exocrine pancreatic insufficiency (EPI) and pre- or full blown diabetes. Any deficiencies in amino acids, fatty acids, vitamins, minerals, trace elements, etc. will cause such a wide range of symptoms that are often hard to pinpoint.

I view it as a sputtering motor running on fumes that suddenly got a few drops of petrol and could function a bit, but then break down out again. Our metabolic pathways are similar in that if nutrients are missing or toxins are blocking the functioning it can get a temporary boost and then stop functioning properly again. Where our body uses those 'scarce' nutrients can vary over time, and thus different metabolic pathways can get hit at different times. Nutrient deficiencies can be caused by a variety of issues, but EPI is an under-reported one. Even after taking pancreatic enzymes, there were many additional steps I had to take because the body had become so deficient with so many metabolic paths and mitochondria struggling, and other downstream effects like SIBO, candida, acid reflux all of which exacerbating the nutrient deficiencies. Not to mention all the nutrients needed to heal organs, bones, muscles that had been hit over the years. Your body will beg, borrow and steal nutrients from elsewhere to keep the lights on for as long as it can.

Even with all the actions I took, it was not a quick fix and took discipline and patience.

Here is the other thread for more info:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

It is something to at least cross off the list as a potential root cause, and most of the actions I took are completely transferable to anyone trying to help their bodies.