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After Christmas crash

soxfan

Senior Member
Messages
995
Location
North Carolina
I honestly have never experienced anything like this before in my 13 years of illness. The day after Christmas I crashed hard. I was unable to do anything except lay in bed. I had no energy...felt as though my body was a shell totally drained.

I was completely physically dead inside but very untired...what I mean is I was not sleepy...I didn’t sleep at all during the four day crash during the day.. The other thing is my eyes felt like they were on fire. They burned all four days even using eye drops.

By day five I was able to get up and even go out for a couple hours. The burning eye pain was gone but I was still extremely drained. Sunday I had PEM from the prior days two hour outing.

I will have to admit it was embarrassing because my mother in law was here and my son from Boston and I was unable to do anything with them. This was not my usual PEM...it felt so different.

Any ideas...adrenal crash/burnout? I have an appointment with my endocrinologist next week but I know it’s slim she will believe in adrenal crash/fatigue.
 

andyguitar

Moderator
Messages
6,581
Location
South east England
Sounds like a severe crash but maybe just a much worse version of the sort of thing you have had before, rather than anything "new". Not sleeping for 4 days will obviously make getting back to 'normal much harder.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@andyguitar ...I slept at night...just not during the day. I was completely untired if that makes sense. Plus the burning eye pain...weird. It did not feel like my normal PEM or crashes...very different. I suppose I will never know for sure .
 

andyguitar

Moderator
Messages
6,581
Location
South east England
Ah I see you ment that you could sleep at night. This will sound a bit odd but rather than being fatigued it sounds more like a case of over stimulation. Did you take anything (drug, supplement) you dont usually take?
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Ah I see you ment that you could sleep at night. This will sound a bit odd but rather than being fatigued it sounds more like a case of over stimulation. Did you take anything (drug, supplement) you dont usually take?

I didn’t take anything I don’t normally take....
 
Messages
9
Hi
I managed to get through Boxing Day as well as Christmas Day at a push but knew that I would pay for it. But how do you pace on two of the most intense days of the year. Spent most of the next 4 days resting on my bed and still not back to my ME normal. I think you will recover with rest but was possibly a bad PEM scenari. Take care.
 

Pen2

Support, Good Medicine.
Messages
391
Location
Maryland, US
Hey @soxfan , same for me but I kept on pushing, house work...dadada. I also have the burning eyes. I just blame it on the freezing weather and the heat running all the time.
Drops don't help me either.

For me, I ate Christmas dinner. Things I'm not supposed to eat. I thought that might have made me worse too. Hope you're feeling better.

I'm originally from Massachusetts too! Go PATS!

Thought I would add that in. :lol:

Pen2
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Pen2 ...I have had a couple okay days. Not like the crash but still very tired all day. I really didn’t do much different but it was a busy time. I made sure to still rest in the afternoons but it didn’t stop the crash.

The burning eyes went away as soon as I was able to be up and mobile again. So I only had them the four days.

How do you all keep a positive attitude while having these debilitating symptoms? I find myself more and more becoming depressed because I feel as though I am getting PEM much more easily than in the past.

If I didn't have my husband here I probably would not have eaten for those days as I was unable to do anything. It’s scary to think if I was alone ...the older I get the more I worry...

I love the Pats ! Not sure what will happen in the playoffs but they always give us great games!
 

cmt12

Senior Member
Messages
166
@Pen2
How do you all keep a positive attitude while having these debilitating symptoms? I find myself more and more becoming depressed because I feel as though I am getting PEM much more easily than in the past.
We can have a positive attitude even when experiencing depression (although it’s difficult admittedly), so based on the context I am interpreting your question as “how can we feel reassured or secure while having these symptoms”. Fair?

What I did at the stage you’re at is I noticed that prioritizing feeling reassured and secure was only helpful in the short term, and the reassurance was diminishing over time. I wanted something more long term and sustainable, so I realized that I needed to change my mindset and prioritize what was true over what was immediately reassuring, since the truth pays off in the long term in my experience. However, this idea, the value of truth, has to be realized and chosen by each of us individually.

Prioritizing truth for me meant admitting to myself that things are not okay rather than reassuring myself, and it meant vowing to myself that, from this point forward, I will no longer allow myself to be deceived into thinking that things are okay (for a short term benefit) when deep down part of me knows they really are not.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
For me, burning eye pain was a specific symptom of acidosis. I had it for a long time before trying bicarb to decrease the acidosis. Not sure if it would help you, but its easy to try. I think even my tears became acidic and it caused widespread pain.

Anyway I hope you feel better, holiday crashes are so difficult. There is just so much pressure at that time of year. I look forward to getting it over with, honestly and take it one day at a time.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
It may be a crash within a crash (etc). I've only gotten these a few times... but they are generally horrific. One time, I ended up in the ER. Another... time... it lasted about a month. I tend to get strange symptoms as well... sometimes really bad vomitting, or pains. But it could be a combination of things as well.

Just as a side-note... the day after Christmas is the most common time to get these. Its a combination of the stress leading up to it... and the social/mental exertion on the day of. Even though you may feel ok... even pretty good right before... it can hit you really hard.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I gather from all the responses that no one thinks this could be adrenal related. I had saliva tests in the past...recent one being 2012...all low throughout the day...normal at the 4pm and 10pm readings.
I have also been on Cortef in the past during Lyme treatments.

I have many adrenal burnout symptoms but they of course could also be CFS related I suppose.

Yes very stressful time of year...I was really tired Christmas Day and it went downhill from there.

I always do well on vacations...my symptoms are much less and I can do almost anything...no stress I guess...
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
I had similar results for a saliva test. I read somewhere that over half of PWME have lower cortisol in the am and that adrenal issues are a very common symptom of ME. (ME just screws with pretty much everything).

That being said... a lot of the stuff online about adrenal burnout just isnt relevant for PWME. We didn't develop adrenal issues because of stress... we developed it because we have ME, which screws up everything... and all the symptoms are magnified when we experience PEM. And stress & social exertion are two big PEM triggers... which is why so many of us have 'holiday PEM'

However... that doesnt mean I think that using cortisol replacement is a bad idea. I actually think its a good idea, and I typically take very low doses in the AM, and it has helped me manage some of the symptoms.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@hamsterman
I actually think my adrenal issues stem from Lyme. I went undiagnosed for two years (I was told it was depression). I finally was diagnosed positive Lyme and Bartonella. I underwent treatment off and on for 6 years.

I was on Cortef for 4 years and it took a year to taper off. I have had major major stress the past 3 years...I could list it all....

Anyway I am seeing the endocrinologist and don’t want to sound ignorant when I bring the subject of it possibly being an adrenal crash. I know Cortef is not a long term solution but if I could get a little help in the morning...

I didn’t want to believe it was a horrible PEM crash...because it’s the worse I ever had and scares me that there could be more. I seem to be having lots of next day PEM more than usual.

I fully believe I am getting worse or going through a really bad time.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
@hamsterman
I actually think my adrenal issues stem from Lyme. I went undiagnosed for two years (I was told it was depression). I finally was diagnosed positive Lyme and Bartonella. I underwent treatment off and on for 6 years.

I was on Cortef for 4 years and it took a year to taper off. I have had major major stress the past 3 years...I could list it all....

Anyway I am seeing the endocrinologist and don’t want to sound ignorant when I bring the subject of it possibly being an adrenal crash. I know Cortef is not a long term solution but if I could get a little help in the morning...

I didn’t want to believe it was a horrible PEM crash...because it’s the worse I ever had and scares me that there could be more. I seem to be having lots of next day PEM more than usual.

I fully believe I am getting worse or going through a really bad time.

Sorry to hear that.

I hope its not holiday PEM... but if it is... at least there are strategies to minimize it in the future. For me, this has been the first holiday in at least 5 years where I didn't have PEM. It took a lot of planning, pacing, etc... but its a huge improvement over my last year... which was an absolute nightmare. I felt like I was experiencing PEM the entire year of 2016.

I know exactly what you are talking about with the endo. The first time I saw mine... I mentioned 'adrenal burnout' or maybe it was 'adrenal fatigue' and he basically just rolled his eyes.... I think he gets that question a lot, because of the internet. But last time we spoke... he was talking about the HPA axis problems caused by ME, post-infection issues... and auto-immune problems... and I felt like we were on the same page for once.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I don’t really have any doctor here that understands CFS so I am basically alone in this. I moved from NH and had my Lyme doctor up there who would help me in any way possible. Here in NC I have yet to find a doctor who cares...knows...or who will step up and help me.

I have been to an Intergrative doctor who knew nothing....an a Acupuncturist who put me into crashes...a PCP who is too busy to care...and my endocrinologist who I know won’t be of any help.

I really thought I was going slow and not overdoing it but apparently it was still too much. Last Christmas I was okay...just minor PEM which lasted a day.

I can’t believe there isn’t a doctor a Duke who doesn’t have any knowledge of CFS...it’s very frustrating and I feel like there is no hope.
 
Messages
39
Location
Finland
This was my first holiday season after I was diagnosed and I crashed so hard after Christmas that I'm still recovering from it. It's almost like it sent my baseline level of fatigue lower than it was before and I'm worried it will stay like that.

You aren't alone in your suffering, I'm sorry it's been so hard to find care. I'm worried about what to do too since there's only one specialist in the country and I can't afford to see them.

Have you tried seeing an infectious disease specialist? I'm waiting to hear back from one after my labs showed I have EBV, maybe they can help in some way.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
This was my first holiday season after I was diagnosed and I crashed so hard after Christmas that I'm still recovering from it. It's almost like it sent my baseline level of fatigue lower than it was before and I'm worried it will stay like that.

You aren't alone in your suffering, I'm sorry it's been so hard to find care. I'm worried about what to do too since there's only one specialist in the country and I can't afford to see them.

Have you tried seeing an infectious disease specialist? I'm waiting to hear back from one after my labs showed I have EBV, maybe they can help in some way.

I still remember my first post-holidays crash. It was horrible... and there was a time where I thought I was permanently in PEM... I think it stretched to February. You will recover though... but next year, try to stay away from social situations... try to minimize one-on-one conversations, and never cause a crash while your in a crash. Those are the ones that last forever.

I think its a good idea to get checked for diseases... but chances are... since Soxfan had lyme disease.... that was probably the trigger. I've heard that nearly half of the people who are post-treatment for lyme disease develop CFS/ME... or something that behaves almost exactly like CFS
http://simmaronresearch.com/2016/08...nic-fatigue-syndrome-mecfs-are-they-the-same/