PEM vs Crashing in Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia

[San Diego]

The serotonin angle is interesting. If I’m not mistaken, many of us do not tolerate SSRI’s? They are one of the worst things I’ve ever taken.

If I overdo things a little, I crash ie sudden and dramatic loss of mental and physical energy. I crave sugar, need to lie down, go pale etc, though PEM (particularly pain and feeling ill) takes a little longer, sometimes not til the next day. Then it wanes/gets better over time (what's the difference?), usually with in a day or a few

Then there are relapses: much deeper crashes, worse PEM and takes months to years to get over.

Exactly, with an exception: My cravings are more high fat, high calorie items. When I was still out in the world and crashing, I’d find myself wolfing down 2 Big Macs like a hungry teenage boy. (I NEVER ate Big Macs; I was a juicer and ate whole foods). There is obviously something our bodies desperately need during these rapid onset crashes.

My rapid onset crashes are much faster than they were early in my illness. Now, I can become incapacitated within a couple of minutes whereas early on it took up to an hour or so. I can be talking to someone and literally head to bed in the middle of a sentence.

Thanks for adding the poll, @Cort.

 

[tatt]

I'd say I've only had one crash - when I literally couldn't go on and just went to bed for several days and spent most of the time sleeping. Took a long time to recover from that. It was caused by excess exercise and trying to keep exercising despite the warning symptoms. I've never let it get to that stage again but sometimes I have to sleep quite a while if I'm active and I will struggle to have enough energy to get upstairs to bed.

 

[Who Me?]

Thanks for adding the poll, @Cort

I thought I was insane when I saw the poll. I swore it was not there before. Although choice 3 should be split maybe. My crashes and PEM are totally different. And for me a relapse is not a crash. It's its own thing.

 

[Who Me?]

Reading @tatt I think many of us refer to what happens to us differently. My crashes only last a few hours or day. My PEM lasts more. Relapses months.

 

[tatt]

I've never experienced the sort of sudden collapse people are reporting, therefore I only ticked the pox for PEM. However I'd still describe that one severe experience as a crash because the effect was so severe.

 

[Croatoan]

The serotonin angle is interesting. If I’m not mistaken, many of us do not tolerate SSRI’s? They are one of the worst things I’ve ever taken.

Exactly, with an exception: My cravings are more high fat, high calorie items. When I was still out in the world and crashing, I’d find myself wolfing down 2 Big Macs like a hungry teenage boy. (I NEVER ate Big Macs; I was a juicer and ate whole foods). There is obviously something our bodies desperately need during these rapid onset crashes.

My rapid onset crashes are much faster than they were early in my illness. Now, I can become incapacitated within a couple of minutes whereas early on it took up to an hour or so. I can be talking to someone and literally head to bed in the middle of a sentence.

Thanks for adding the poll, @Cort.

Since SSRI's block uptake by blocking the serotonin transporter it will depend on if you have long are short forms of the transporter, plus a few other things.
http://psycheducation.org/depressio...re-involved-other-mental-health-problems-too/

SSRIs helped me a lot and would always stop my IBS-D. But I think that is only because of my slow Monoamine Oxidase genes (MAOA). The never fixed me totally, but they helped alot, especially with my anxiety.

It is interesting to not that high fat helped you. Omega 6 fatty acids have a damping effect on the serotonin receptors
http://www.ncbi.nlm.nih.gov/pubmed/16600514

Me? I need to eat a lot of omega 3's. I have low functioning serotonin receptors.

 

[SandraHeretic]

yes, your descriptions of both conditions and the situations when they arise sound just like me. The crash I have is not so violent but the same idea. I'm up and around doing stuff and then blam, like someone flipped a switch, my nervous system just wiggs out. All of sudden, it just runs out of spoons? Everything goes FUBAR--I get hot and then I get really cold, shaking limbs, muscle twitches, can't talk coherently, lights and sounds hurt, nausea (but rarely actual vomiting). I need to lie down in the dark and quiet (but not silent, I need something soothing in the background) with a heating pad. I don't know what the heating pad does--it's not like when I use it for muscle aches or spasm--but it seems to be the key to regaining control. If I push through too far, I get a full blown migraine (sometimes in the head, sometimes in the upper belly). If I stop right away, I can recover in a couple hours of what I call coma-dozing--not really sleeping, more like a doze where you're still aware of what's going on around you, but I'm barely able to respond to things, can't even keep my eyes open if I wanted to.

PEM is the aftermath that comes the next day or three after exertion, whether I've crashed or not. Crashing, of course, make the PEM worse and longer.

 

[IrisRV]

I've noticed that the "crashes" can also precede a cold or flu and follow within 15-20 minutes of vaccinations.

That's not uncommon in some subsets. One hypothesis is that the immune stimulation from the infection or the vaccination causes the PEM (or crash?)

Exposure to an infection -- I didn't even have to get symptoms, necessarily -- would PEM me every time. Killed virus vaccines weren't usually as bad though. Live virus vaccines -- that's another story entirely.

 

[Krisserlis]

Darn.... I don't know....I guess Cheney is not seeing patients anymore?

One thing you might try is stopping whatever supplements you are taking. That may sound weird but those symptoms you describe - feeling fluey, feverish, weak etc. - is what I experience when I take things that help me for very long. It seems that when I reach a plateau of health my health starts to fall apart. I believe my immune system is being pushing in the wrong direction. It's like my energy is improving and it's lifting all boats but my immune system is askew and the increased energy is knocking it further askew...That's a guess, course.

I would just go off your supplements/medications you can go off of - and see what happens.

Cort, I find your comments very interesting. I've had ME for over 20 years. I was really ill in teh first few years then eventually stabilised a bit and was able to work part-time while resting all weekend. Then I retired and was pretty good for a year . I Decided to undertake some uni studies and by the end of first semester of my second year I had a total collapse - bedridden again for 3 months, now housebound. Terrible fatigue. I then tried MitoQ and have just finished 90 days on it. After a few weeks I began to feel significant increased energy but after another few weeks I began to get an upsurge of immune symptoms (feeling fluey, feverish, weak etc) that became almost constant. I was also having acupuncture treatment at the time for IBS, so I'm not sure which is knocking my immune system. I think I'll try a week without MitoQ.

 

[IrisRV]

My rapid onset crashes are much faster than they were early in my illness. Now, I can become incapacitated within a couple of minutes whereas early on it took up to an hour or so. I can be talking to someone and literally head to bed in the middle of a sentence.

I had this kind of thing for years before I was diagnosed. It started out with mild reactions once in a while. It eventually got to the point where there was no point in leaving the house because I'd react so often and so rapidly I couldn't go anywhere without having to lie down in the middle of the store, sidewalk, parking lot, or whatever and eventually call someone to take me home. Scary and embarrassing.

My brilliant GP at the time told me it was probably a 'mechanical' (as opposed to true allergic) reaction -- likely rapid vasodilation in response to some compounds -- natural and/or synthetic. The more times it happened, the more sensitized I became and the faster and more severe the reaction.

She had me check my BP during a rxn (when I could). Sure enough, my BP was plummetting -- unmeasureable. She said a temporary patch was to carry Sudafed with me everywhere and take a double dose as soon as I had the least hint of a reaction. That was often enough to give me time to get to somewhere more safe to lie down. The reactions were also less severe with the Sudafed. She gave me an EpiPen to use if it got so bad that even lying down didn't help. I never had to use it, thank goodness, but every semester every class had to be taught how to use the Epi if I passed out.

Then she had me work on paying very close attention so I could recognize the first hint of a rxn and take note of all potentially volatile things around me -- scents of all kinds, other people's cough drops and gum, cleaning products, plants -- anything I might be breathing in.

Sure enough, we identified some of the triggers. I never expected that because I thought the episodes were random. For me, most of the things were known vasodilators -- camphor, eucalyptus, tea tree oil, some cleaners. After that, she tasked me with "running like hell" the moment I noticed them around me. I have dropped everything and run in the middle of a store checkout when someone walked up behind me with a Hall's cough drop or Vick's VapoRub (those were the worst for me).

It was annoying at times, but better than passing out or vomiting in the middle of the store/theatre/classroom. Avoidance really helped me be more functional. It was far from perfect because I never knew when I'd encounter these common items, but I could often get away quickly enough and take the Sudafed fast enough that the episode would be manageable, although often not convenient.

It was a difficult period. I'm glad I'm not dealing with it anymore.

Very long story short , I understand you situation could be completely different from mine, but it might be worth checking your BP during the episodes if you haven't already. Plummeting BP could cause many of your severe symptoms. Also, according to my GP, the increasing speed and severity of the rxn suggests a sensitization situation.

 

[tuylekv]

For what it's worth, my crashes usually come on more slowly and almost always are preceded by major stress or some sort of illness, usually a cold or asthma. They take weeks or sometimes months to recover from, and I spend most of my time in bed resting and sleeping an extraordinary amount.

 

[Katie]

Well I've crashed since Christmas. Back in the wheelchair. I experience crashes often just after Christmas, humm or after a holiday. My crashes can last for months then slowly I crawl out of it but never get back to pre-ME health.
PEM happens often enough often after a visit with grandkids or walking (with my walker) too far etc. It will take 2-3 days before the symptoms really kick in and takes a minimum of a week to settle. Even stretching can trigger an episode of increased pain (allodynia and hyperalgesia)
I try to pace, but I do get so darn bored that at times it's difficult not to do something-anything! I tend to have periods where I'm not doing too badly, still have pain and exhaustion but can get out once or twice a week.

 

[Katie]

The serotonin angle is interesting. If I’m not mistaken, many of us do not tolerate SSRI’s? They are one of the worst things I’ve ever taken.

Exactly, with an exception: My cravings are more high fat, high calorie items. When I was still out in the world and crashing, I’d find myself wolfing down 2 Big Macs like a hungry teenage boy. (I NEVER ate Big Macs; I was a juicer and ate whole foods). There is obviously something our bodies desperately need during these rapid onset crashes.

My rapid onset crashes are much faster than they were early in my illness. Now, I can become incapacitated within a couple of minutes whereas early on it took up to an hour or so. I can be talking to someone and literally head to bed in the middle of a sentence.

Thanks for adding the poll, @Cort.

Thanks for mentioning the sugar cravings. I've been craving sugary stuff for the past month and couldn't figure out why. One reason is Christmas where I did eat some sweets and now I've crashed and the cravings are ridiculous. The only way I get over it is to increase my B complex, protein and not eat anything with sugar for 3 days then I'm ok, but oh those 3 days suck!

 

[San Diego]

Very long story short , I understand you situation could be completely different from mine, but it might be worth checking your BP during the episodes if you haven't already. Plummeting BP could cause many of your severe symptoms. Also, according to my GP, the increasing speed and severity of the rxn suggests a sensitization situation.

So much good info in your post. I’ll read more when I crawl out of this hole from my recent big crash. Again.

 

[IrisRV]

Surprisingly, after not crashing in several years, I crashed this morning and spent the day in bed. This is way different from a PEM episode for me. This feels like a low BP episode -- sudden dizziness, severe headache, nausea, the need to lie down right now. PEM feels more like a really bad flu -- unmanageable muscle aches, sore throat, extreme exhaustion, weakness, dizziness, that sort of thing.

I don't know why this crash happened. It was first thing in the morning within 10 minutes after I got out of bed, so I wasn't exposed to anything I'm not exposed to all the time. My guess is that I let myself get dehydrated over the past couple of days, and hours of no fluids while I was asleep just put me over the edge into too low blood volume. Just a guess though.

 

[Croatoan]

Surprisingly, after not crashing in several years, I crashed this morning and spent the day in bed. This is way different from a PEM episode for me. This feels like a low BP episode -- sudden dizziness, severe headache, nausea, the need to lie down right now. PEM feels more like a really bad flu -- unmanageable muscle aches, sore throat, extreme exhaustion, weakness, dizziness, that sort of thing.

I don't know why this crash happened. It was first thing in the morning within 10 minutes after I got out of bed, so I wasn't exposed to anything I'm not exposed to all the time. My guess is that I let myself get dehydrated over the past couple of days, and hours of no fluids while I was asleep just put me over the edge into too low blood volume. Just a guess though.

What did you eat yesterday, specifically, last night?

 

[Allyann]

Your experience reminds me of Dan Moricoli's experience. He could feel it coming on and he would have to head to the bedroom fast. I don't know if he would experience vomiting but it as if something overcame his nervous system.

I get both crashes and PEM. When I crash, it is like I get the shakes on the inside, my vision blurs, get very sensitive to light and noise, dizzy and if I keep going I faint or vomit or both. Then I get PEM.

If I over do it PEM sneaks up on me. I will feel on top of the world because I have managed to pull off attending an event, or do some housework, then wake up the next day unable to move.

 

[Cort]

I get both crashes and PEM. When I crash, it is like I get the shakes on the inside, my vision blurs, get very sensitive to light and noise, dizzy and if I keep going I faint or vomit or both. Then I get PEM.

If I over do it PEM sneaks up on me. I will feel on top of the world because I have managed to pull off attending an event, or do some housework, then wake up the next day unable to move.

Very clear distinction....

 

[Cort]

Well I've crashed since Christmas. Back in the wheelchair. I experience crashes often just after Christmas, humm or after a holiday. My crashes can last for months then slowly I crawl out of it but never get back to pre-ME health.
PEM happens often enough often after a visit with grandkids or walking (with my walker) too far etc. It will take 2-3 days before the symptoms really kick in and takes a minimum of a week to settle. Even stretching can trigger an episode of increased pain (allodynia and hyperalgesia)
I try to pace, but I do get so darn bored that at times it's difficult not to do something-anything! I tend to have periods where I'm not doing too badly, still have pain and exhaustion but can get out once or twice a week.

Sometimes you just gotta go - symptoms be damned!

 

[Judi]

Can someone perhaps advise? I pushed for many years feeling extremely ill,finally retired at 54. Retirement helped, but I continued to be completely up and down with CFS symptoms,often disabled, sometimes functional. Several years ago, I decided to see Dr. Cheney. After seeing him my health improved and quality of life improved. I Still relapsed, but it became a more infrequentevent..... Recently, doing nothing different, I started to go downhill...and can not get backonmyfeet.. I am in a constant cycle of feeling OK for a few days, maybe a week, being a little active, and then relapsing. This cycle is persistent for now 6months. I often feel like I have the flu; Feverish, uncomfortable in my own skin,weepy,just want to cry. EBV and HHV6 came back inactive. Anybody experience this pattern of the illness?

Same here.