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

[Judi]

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 your guess is what I would guess too or do we need to look at co infections when the immune system is askew?

 

[IrisRV]

EBV and HHV6 came back inactive.

According to whom? The vast majority of doctors use rules of thumb for healthy people when evaluating the results of these tests. You need someone who understands how to evaluate the results in the context of ME/CFS.

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.

That was exactly my experience until I get long-term antivirals from Dr Lerner. All that went away. I still get PEM, but I don't have that fluish feeling or the cycling, or the inexplicable relapses. My condition is much, much more stable.

I'm not saying AVs will work for everyone, just that they're something to consider with those kinds of symptoms.

 

[Denise Jasak]

Would you mind telling me which anti virals worked for you? I have been taking natural anti virals, no more flu symptoms, but still relapsing. Also, two internists read my results and said I have antibodies for EBV and HHV 6 past infection, but not an acute infection.

 

[IrisRV]

Would you mind telling me which anti virals worked for you? I have been taking natural anti virals, no more flu symptoms, but still relapsing. Also, two internists read my results and said I have antibodies for EBV and HHV 6 past infection, but not an acute infection.

The one that did the most for me was Valcyte long-term, as in years. I've also taken Valtrex, theoretically to keep HHV6 suppressed once it was knocked back and to keep EBV under control.

Sheesh, doctors! Of course you don't have an acute infection. You likely had the acute infections either in early childhood and almost certainly before you were 20yo. The question is whether you have a reactivation. I'll bet both internists were using the healthy person rule-of-thumb that says high IgG only means a past infection. Not strictly true. If you are healthy, no symptoms, no immune dysfunction, and had the initial infection in the last 10 years, then high titres probably aren't important. However, if you have symptoms, have immune dysfunction (many/most PWME do), and are decades past your original infections, then high titres could be significant. They don't look at the details, just the simplest explanation, whether it fits your situation or not.

Internists told me for years my high titres didn't mean anything... and I stayed sick. Dr Lerner (an ME/CFS specialist and infectious disease doc) said my high titres were significant and treated me with Valcyte. My condition improved dramatically. If I stay off AVs more than a couple of years, I get symptoms again and my titres start climbing. Those are pretty clear signs that my body is trying to fight these herpesviruses and not always succeeding.

You might also want to consider that CMV is another herpesvirus that is frequently reactivated in PWME. It might be worth having that tested as well.

If you might have herpesviral activations, it's worth getting evaluated by an ME/CFS specialist who is willing to use AVs when warranted. I'm not sure who they all are, but the docs at INIM, Stanford, and OMI use AVs. Dr Petersen also does, but it's nearly impossible to get to see him. There might be others.

 

[Denise Jasak]

Thanks for your post Iris..I said acute infection, but I actually meant "Activation" of a virus. I was on Valcyte years back, and I do believe it helped ..while I never had particularly good results using Valtrex, maybe a trial of an anti viral wouldn't hurt. I continue to have relapsing fatigue and can't seem to get to the bottom of it. Then again, maybe just the cycle I'm in, and have to wait it out. Specialists are hard to come by these days. They are far and few In between.

 

[SueS]

Gotta get me some of that Valcyte. That would involve a visit to the doctor though, and the thought traumatises.

I do wonder how effective neem tea is as an antiviral. When I was in my remitted stage where I delusionally thought I was recovered, I was working 20 hours a week (and dying the rest of the time). Every single day at work I'd drink a cup of neem tea. I know it's pretty powerful stuff, there's been lots of studies done on its effectiveness. I've started back on it again recently, a cup a day. Be so nice if it alone would remit my reinfections or whatever the hell is going on.

Re crashes and PEM, I've always called a relapse a crash. And what San Diego calls a crash feels to me like some combo of OI and hypoglycemia. They happen though when I've eaten recently and they feel slightly different to hypos. I've been having them a bit lately. I had one a few weekends ago while I was socialising at my parents' place with my mum, auntie and cousin. We were having a great time and I was enjoying being around a bunch of women (doesn't happen much) and was running happily on adrenaline. Then I felt it, the gradual slide-down in my chair, starting to feel anxious and then feeling panicky, going to the toilet and crying, and then finally NEEDING to go lie on the couch in the other room for 20 minutes. It was really embarrassing. It's kind of like wetting your pants, but different.

I had another one a few days ago where I just simply could not all of a sudden go down the four split-level stairs from the kitchen to the lounge room, and so I had to instead lie on the (cold tiled) floor for 15 minutes. Which was really quite irritating. I lay there and felt alone and anxious and wishing I was dead and all of those things that I'm trying to stop thinking when I feel like that. What does Buddhism say? Something about suffering twice - once when whatever it is happens, and then secondly by the story you're telling yourself?

These situations are so bizarre. My brain function is pretty good these days when I'm not fuzzy and tuned out. I go and lie on the couch after feeling I was going to die and then 20 minutes later I'm thinking and daydreaming about politics and philosophy and all of these super deep things. It's this weird twilight world where upright my IQ is -7 and lying down I'm feeling like suddenly the world opens up.

THIS ILLNESS IS JUST BLOODY WEIRD AND STUPID AND IT SMELLS LIKE POO.

 

[Remy]

They happen though when I've eaten recently and they feel slightly different to hypos.

Here I am, seeing mast cell activation disease in everyone again, but that sure as heck sounds like a textbook case!

Did you happen to see this thread on mast cell disease?

 

[SueS]

Oh, that's interesting you say that, @Remy because I was just looking at the whole mast cell activation thing recently and concluded that it didn't apply to me because I dont *seem* to have histamine-related issues. Thanks for the link, I'll check it out.

 

[SueS]

Remy, thanks so much for suggesting my issues might be mast cell related. Now that I've turned my attention to these symptoms, I realise that I itch a lot, I have 9ccasional rashes, that i often have swollen lips and tongue.

I would feel embarrassed saying this to non-CFS people. They would say how on earth could I not notice those sorts of symptoms before? I've done this countless times before. My CFS specialist Don Lewis pointed out long time ago that this odd propensity to find it difficult to recognise our own symptoms are autonomic nervous system dysfunction.

Which makes sense. It never stops feeling odd though.

So thanks for your comment. I may have gone on for more months not being able to see that this appears to be a big thing for me.

 

[J.A.]

I used to use the word crash for PEM episodes, but I now realize they two are not really the same.

Nowadays I don't use the word crash much because I don't have the sudden-onset collapses anymore. However, if I needed to make the distinction in the future, I'd call the sudden onset "I have to lie down right now" episode a crash. For me, PEM doesn't hit for 2-4 days and is much more complete exhaustion and flu-like.


For me, this appears to be the case. OI medications and minor OI management techniques have pretty much put an end to my crash-type episodes, so I'm assuming they're dysautonomia for the moment.

PEM has been more intractable, so I think of it more as an ME/CFS thing. Exquisitely careful pacing and infection avoidance has kept PEM episodes to a minimum, but we all know neither of those things can be perfectly achieved.

That said, if I had another months-long bedbound/couchbound PEM episode, saying "I have PEM" just doesn't get the debility across, so I'd probably say I've crashed. Just to be confusing, I guess.

Can I ask what OI meds you use & what OI techniques?

 

[ShyestofFlies]

I don't think I actually have PEM on an acute level, more that I have a constant layer of PEM at all times. It isn't always as severe as others, but just a general feeling of malaise/sick/gross/unwell. Being awake/breathing may be the trigger (joke)

Think of this as a pyramid/mountain diagram:
CRASHES
Layer of post exertional malaise/whatever you wanna call it
Layer of base ME/CFS illness
Base with other illnesses (autoimmune, etc)
Base wellness

It's worth noting I haven't had ME/CFS all that long, in comparison to many here and elsewhere.

In one group I was told the second year tends to be the worst for some reasons for a noticeable subset.

Well part of my second year of illness was needing part time care, so so-far that seems in line.

As for crashes, I notice they typically are unavoidable forced rests, not by choice. My body calls the shots and I either settle down (if I can move at all) or I will collapse. I've had partial paralysis during a crash before- if someone had been with me at the time I might be able to report speach problems, etc but I was alone.

It was terrifying at the time, but I find this part funny: I threw myself off the sofa with a roll so as not to pee on it. Once I was on the floor I waited a bit and was abel to move again. The whole ordeal I was in and out of consciousness but mostly out. It definately had a "crash-hangover" of sorts, but was thankful a very short crash, perhaps around 6 hours.

Crash symptoms for me typically include:
Accute muscle weakness, lack of fine motor control, no energy, dizzy, "don't get up!!!", horrible pain, extreme sensitivity to noise and light, palpitations, nausea, and severe debilitating exhaustion and definitive sleepiness, grogginess, cognitive issues.

The partial paralysis (which I am not 100% sure it was, or if I was so weak it just felt that way) hasn't occured again.

I try not to push through weakness episodes in muscle groups now.

 

[Farmgirl]

@San Diego, you are so brave and worse than me. Zofran is a good friend to me lately.. Farmgirl

 

[Kristine]

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?

Denise,
My EBV is also inactive. Back when I had it and the symptoms of dizziness, lightheadedness, feeling faint started and blood panels were taken, my doctor had me drinking Gatorade, apparently my electrolytes were super low. I haven't been able to stop taking it as the diagnosis of CFS, led me to feel dizzy upon getting out of bed in the morning. I will get precursors during the day to drink a Gaterade, as my legs will weaken or I will start to experience severe dizziness. I don't know if anyone else has to use this for Orthostatic Intolerance, but if I don't drink a couple a day, I'm on the floor. Maybe having potassium and other vitals( thyroid) checked will help. Found out why I was super exhausted more and more, Hashimotos. Just suggestion.
Kristine

 

[Kristine]

I don't think I actually have PEM on an acute level, more that I have a constant layer of PEM at all times. It isn't always as severe as others, but just a general feeling of malaise/sick/gross/unwell. Being awake/breathing may be the trigger (joke)

Think of this as a pyramid/mountain diagram:
CRASHES
Layer of post exertional malaise/whatever you wanna call it
Layer of base ME/CFS illness
Base with other illnesses (autoimmune, etc)
Base wellness

It's worth noting I haven't had ME/CFS all that long, in comparison to many here and elsewhere.

In one group I was told the second year tends to be the worst for some reasons for a noticeable subset.

Well part of my second year of illness was needing part time care, so so-far that seems in line.

As for crashes, I notice they typically are unavoidable forced rests, not by choice. My body calls the shots and I either settle down (if I can move at all) or I will collapse. I've had partial paralysis during a crash before- if someone had been with me at the time I might be able to report speach problems, etc but I was alone.

It was terrifying at the time, but I find this part funny: I threw myself off the sofa with a roll so as not to pee on it. Once I was on the floor I waited a bit and was abel to move again. The whole ordeal I was in and out of consciousness but mostly out. It definately had a "crash-hangover" of sorts, but was thankful a very short crash, perhaps around 6 hours.

Crash symptoms for me typically include:
Accute muscle weakness, lack of fine motor control, no energy, dizzy, "don't get up!!!", horrible pain, extreme sensitivity to noise and light, palpitations, nausea, and severe debilitating exhaustion and definitive sleepiness, grogginess, cognitive issues.

The partial paralysis (which I am not 100% sure it was, or if I was so weak

Shy,
So sorry to hear how your body experiences a crash to the point of paralysis.
I have only heard of flares and relapses. Flare -ups are pretty much going to happen if I want to go out i.e dinner or have to i.e. doctors appointment. Or as others said overdid it cleaning, cooking, which my husband has to 90% of.Flare up is a mini flu that lasts a couple of days. I will relapse for weeks if I really overdid it. That lasts for weeks and is what feels like the flu.There are times my body is like dead weight and I am experiencing a I guess a crash. Have to go to bed, am completely shot but after that am somewhat back to normal state, feeling exhausted.
Kristine

 

[Farmgirl]

I don't think I actually have PEM on an acute level, more that I have a constant layer of PEM at all times. It isn't always as severe as others, but just a general feeling of malaise/sick/gross/unwell. Being awake/breathing may be the trigger (joke)

Think of this as a pyramid/mountain diagram:
CRASHES
Layer of post exertional malaise/whatever you wanna call it
Layer of base ME/CFS illness
Base with other illnesses (autoimmune, etc)
Base wellness

It's worth noting I haven't had ME/CFS all that long, in comparison to many here and elsewhere.

In one group I was told the second year tends to be the worst for some reasons for a noticeable subset.

Well part of my second year of illness was needing part time care, so so-far that seems in line.

As for crashes, I notice they typically are unavoidable forced rests, not by choice. My body calls the shots and I either settle down (if I can move at all) or I will collapse. I've had partial paralysis during a crash before- if someone had been with me at the time I might be able to report speach problems, etc but I was alone.

It was terrifying at the time, but I find this part funny: I threw myself off the sofa with a roll so as not to pee on it. Once I was on the floor I waited a bit and was abel to move again. The whole ordeal I was in and out of consciousness but mostly out. It definately had a "crash-hangover" of sorts, but was thankful a very short crash, perhaps around 6 hours.

Crash symptoms for me typically include:
Accute muscle weakness, lack of fine motor control, no energy, dizzy, "don't get up!!!", horrible pain, extreme sensitivity to noise and light, palpitations, nausea, and severe debilitating exhaustion and definitive sleepiness, grogginess, cognitive issues.

The partial paralysis (which I am not 100% sure it was, or if I was so weak it just felt that way) hasn't occured again.

I try not to push through weakness episodes in muscle groups now.

@ShyestofFlies
Thanks for the description...me to a tee! I also feel paralyzed for a time everyday. Body calls the shots is SO true. FG

 

[Farmgirl]

So sorry to hear how your body experiences a crash to the point of paralysis.
I have only heard of flares and relapses. Flare -ups are pretty much going to happen if I want to go out i.e dinner or have to i.e. doctors appointment. Or as others said overdid it cleaning, cooking, which my husband has to 90% of.Flare up is a mini flu that lasts a couple of days. I will relapse for weeks if I really overdid it. That lasts for weeks and is what feels like the flu.There are times my body is like dead weight and I am experiencing a I guess a crash. Have to go to bed, am completely shot but after that am somewhat back to normal state, feeling exhausted.
Kristine

@Kristine @ShyestofFlies @Denise
Just wish I didn't have to deal with any of it...PEM, crashes, tanking to bedridden, etc....sometimes I get worn out in being worn out, y'know? People look at me and think I am normal, with all the expectations that go with that and that is hard on me, not being able to meet others, or do Holidays in a nice way...it is such a difficult disease for others to "get".

I am unable to work. Making dinner is way too much for me.

 

[Kristine]

Farmgirl,
You just don't know how much I relate to you speaking about not able to make dinner. My husband is my caretaker and does the grocery shopping, cleaning, cooking while working 55-60 hrs a week. I judge myself as lazy, why can't I get up and dust, it's not a hard chore and then I feel the back pain and am too exhausted to even try. I was successful in a career I loved, and was able to engage in socialization, exercising, driving shopping. Now I'm in a wheelchair if I'm going to have my husband drive me to a store.

I still have a few friends but because they don't "get it"., it's so hard to do anything cause I just want to stay home and be in bed cause my Fibromyalgia is out of control and I'm too tired. And yes my brain gets tired from the simplest tasks.I can easily flare because I read too much or completed the budget for the month. But knowing there are researchers still out there, still trying to come up with medication, therapies, a cure gives me hope.
Kristine

 

[Farmgirl]

Farmgirl,
You just don't know how much I relate to you speaking about not able to make dinner. My husband is my caretaker and does the grocery shopping, cleaning, cooking while working 55-60 hrs a week. I judge myself as lazy, why can't I get up and dust, it's not a hard chore and then I feel the back pain and am too exhausted to even try. I was successful in a career I loved, and was able to engage in socialization, exercising, driving shopping. Now I'm in a wheelchair if I'm going to have my husband drive me to a store.

I still have a few friends but because they don't "get it"., it's so hard to do anything cause I just want to stay home and be in bed cause my Fibromyalgia is out of control and I'm too tired. And yes my brain gets tired from the simplest tasks.I can easily flare because I read too much or completed the budget for the month. But knowing there are researchers still out there, still trying to come up with medication, therapies, a cure gives me hope.
Kristine

Yes! You got it exactly! I am so glad to hear that you have a helper in your life. I worry about those that do not and feel for them.
I am not in a wheelchair, but I cannot walk far. I use the disability carts at the store, but shopping is really bad for me. Do you have ME, too? The daily pain in unbelievable for me right now. I DO feel guilty, too, if that is what you were saying. I used to be an RN and had a great career and we have 5 kids (yes, I felt better during pregnancy and tried to convince myself for years that it was nothing).
Now, same for me, just love my bed and my heating blanket. I have circulation issues in my hands and feet.

My feeling like I am "lazy" has caused many a day of really bad PEM. I still try to pretend I am normal and it always gets me into trouble, cuz I am NOT!

I can totally related to brain tasks exhausting you....I get that really bad. I am realizing part of it is when I am upright for "too long" which is about 2 hours, my heart rate increases and my brain fog increases....I think because we do not pump blood to the brain well when we are upright. Do you find that as well?

What career did you have, if you don't mind sharing, or PM if you would rather talk privately.
I am sorry that you feel bad, but if you are like me, you don't like others to feel sorry for you. I just need to feel human.

I saw a video on Youtube the other day and it was good. It was by Toby Morrison, a man with ME who does videos and he did one on the family and friends and it was very helpful.
Best to you and nice to "meet" you this way. :-D Hugs, FG

 

[Kristine]

Yes! You got it exactly! I am so glad to hear that you have a helper in your life. I worry about those that do not and feel for them.
I am not in a wheelchair, but I cannot walk far. I use the disability carts at the store, but shopping is really bad for me. Do you have ME, too? The daily pain in unbelievable for me right now. I DO feel guilty, too, if that is what you were saying. I used to be an RN and had a great career and we have 5 kids (yes, I felt better during pregnancy and tried to convince myself for years that it was nothing).
Now, same for me, just love my bed and my heating blanket. I have circulation issues in my hands and feet.

My feeling like I am "lazy" has caused many a day of really bad PEM. I still try to pretend I am normal and it always gets me into trouble, cuz I am NOT!

I can totally related to brain tasks exhausting you....I get that really bad. I am realizing part of it is when I am upright for "too long" which is about 2 hours, my heart rate increases and my brain fog increases....I think because we do not pump blood to the brain well when we are upright. Do you find that as well?

What career did you have, if you don't mind sharing, or PM if you would rather talk privately.
I am sorry that you feel bad, but if you are like me, you don't like others to feel sorry for you. I just need to feel human.

I saw a video on Youtube the other day and it was good. It was by Toby Morrison, a man with ME who does videos and he did one on the family and friends and it was very helpful.
Best to you and nice to "meet" you this way. :-D Hugs, FG

The 2 hour thing in a chair is freaking me out, as I have to lay down after that time frame as well and it can't be the couch, it must be the bed. There has been x lot of stress lately and I am hoping that I am just in a flare up and not getting much worse. I just want the progression to stop. I can do some walking, but not standing as my back with fibromyalgia points in lower back plus osteoarthritis causes throbbing pain if I try and stand. Like an elephant is on it. I was a Clinical Director of a Women with children Residential Addiction Program. Most of them also had trauma and or other mental health issues that we treated. I loved my work. Had just moved into actually making good money when doc took me out of work. Went back to being a clinician once again as the fibromyalgia and CFS got worse. Went to part time and when I couldn't even focus as much during sessions and couldn't put the energy in my groups, even part time, I had to stop working. That was depressing. Doing things you love and having to stop them. So many things too. PM me whenever you need to talk, if you can't in forum.
Kristine