Finally a bad test result!!

[TrixieStix]

Hi..it can cause a lot of muscle problems aswell..Aparentlly vit D is very important for the neuro muscoskeletical system..I see a reumatologist ,she didin t think i have fybromialgia ,because i don t have the specific pain areas, and i don t feel extra pain on pressure...also the pain is not severe..About the post exortional malaise..this is probably the only one thing that separate Cfs than other diseases,but is so vague,i don treally know what ''malaise '' mean..i do feel tired the next day after exortion..but is not this the same for everyone?? It's not a dramatic change in the way i feel..Does PEM means you are are bed ridden ,like with a nasty flu ?

Another important thing to make clear is that Post Exertional Malaise (PEM) is not only caused by physical exertion. It is caused by physical, cognitive and emotional exertion. This is why some severely ill ME/CFS patients cannot tolerate any light, sound, speaking, etc. For those things cause them to experience have PEM ("crash"). With ME/CFS not only does the lack of energy limit what you can do, but also PEM limits what you can do. For example even if I feel like I do have the energy to have dinner at the neighbors house I know I cannot because it will cause me to have PEM afterwards. In my case because of PEM I am not almost totally housebound, bed/recliner chair bound. I want to do things, see friends, cook meals, and so forth but I can't because it will make me much sicker afterwards.

An example of how emotional exertion triggered PEM in me is when some months ago my husband and I saw a deer fawn in our driveway with a horribly broken leg. I immediately got emotionally upset and began crying and 30 minutes later I "crashed" hard into PEM. The emotional exertion of the experience pushed me over my body's limit for exertion. Also while many people's PEM does not come on until a day or 2 later after the triggering exertion, for me PEM often comes on rather quickly sometimes and other times it take a few days for it to hit me.

For me Post Exertional Malaise is not subtle. Before i was diagnosed with ME/CFS I had actually been describing PEM almost to a T to the various doctors I saw, but none seemed to have any thing to say about it. When I discovered the term" Post Exertional Malaise" and saw it's definition it was a lightbulb moment and I instantly knew this is what I was experiencing. PEM for me is unlike anything I have ever experienced physically in my life. It is nothing like "fatigue". I've often described it as "feeling like I've been hit by a Mack truck". I actually came across another person who had posted the same description.

Here are a few other descriptions for PEM that other ME/CFS'ers have posted. I relate to their descriptions of it.

"What does your PEM feels like:
I get the feeling that trying to think is literally ripping my brain apart from the inside out. There's extreme discomfort up my spine from mid-back, and all around my head. Not exactly "painful" in the conventional sense, but agonizing in a whole new way. Processing somebody talking to me feels like every word is going to fry my brain. This kind of sensation tends to happen without the delayed reaction, though, so I'm not sure whether it qualifies as PEM. It's the consequence if I try to "push through" once things are already difficult. It is awful.

I also get a different type of PEM from physical activities or stress. Feels like a really supremely terrible cold, except without the congestion. The glands in my neck swell up like mad, and I feel super crappy/ill. Super low energy, even compared to normal. Super weak - walking up one stair becomes a challenge. Not capable of even attempting mental activities. Can't do much of anything at all beyond lying there waiting for it to go away."

here is another...

"What does your PEM feels like:
An increase in ME symptoms. For me that sore throats, glands, sore muscles and other flu type symptoms. My brain stops working and I am very physically weak."


Post-Exertional Malaise in Chronic Fatigue Syndrome
By Jennifer Spotila, J.D. for The CFIDS Association of America, 2010

http://solvecfs.org/wp-content/uploads/2013/10/pem-series.pdf

 

[notmyself]

Another important thing to make clear is that Post Exertional Malaise (PEM) is not only caused by physical exertion. It is caused by physical, cognitive and emotional exertion. This is why some severely ill ME/CFS patients cannot tolerate any light, sound, speaking, etc. For those things cause them to experience have PEM ("crash"). With ME/CFS not only does the lack of energy limit what you can do, but also PEM limits what you can do. For example even if I feel like I do have the energy to have dinner at the neighbors house I know I cannot because it will cause me to have PEM afterwards. In my case because of PEM I am not almost totally housebound, bed/recliner chair bound. I want to do things, see friends, cook meals, and so forth but I can't because it will make me much sicker afterwards.

An example of how emotional exertion triggered PEM in me is when some months ago my husband and I saw a deer fawn in our driveway with a horribly broken leg. I immediately got emotionally upset and began crying and 30 minutes later I "crashed" hard into PEM. The emotional exertion of the experience pushed me over my body's limit for exertion. Also while many people's PEM does not come on until a day or 2 later after the triggering exertion, for me PEM often comes on rather quickly sometimes and other times it take a few days for it to hit me.

For me Post Exertional Malaise is not subtle. Before i was diagnosed with ME/CFS I had actually been describing PEM almost to a T to the various doctors I saw, but none seemed to have any thing to say about it. When I discovered the term" Post Exertional Malaise" and saw it's definition it was a lightbulb moment and I instantly knew this is what I was experiencing. PEM for me is unlike anything I have ever experienced physically in my life. It is nothing like "fatigue". I've often described it as "feeling like I've been hit by a Mack truck". I actually came across another person who had posted the same description.

Here are a few other descriptions for PEM that other ME/CFS'ers have posted. I relate to their descriptions of it.

"What does your PEM feels like:
I get the feeling that trying to think is literally ripping my brain apart from the inside out. There's extreme discomfort up my spine from mid-back, and all around my head. Not exactly "painful" in the conventional sense, but agonizing in a whole new way. Processing somebody talking to me feels like every word is going to fry my brain. This kind of sensation tends to happen without the delayed reaction, though, so I'm not sure whether it qualifies as PEM. It's the consequence if I try to "push through" once things are already difficult. It is awful.

I also get a different type of PEM from physical activities or stress. Feels like a really supremely terrible cold, except without the congestion. The glands in my neck swell up like mad, and I feel super crappy/ill. Super low energy, even compared to normal. Super weak - walking up one stair becomes a challenge. Not capable of even attempting mental activities. Can't do much of anything at all beyond lying there waiting for it to go away."

here is another...

"What does your PEM feels like:
An increase in ME symptoms. For me that sore throats, glands, sore muscles and other flu type symptoms. My brain stops working and I am very physically weak."


Post-Exertional Malaise in Chronic Fatigue Syndrome
By Jennifer Spotila, J.D. for The CFIDS Association of America, 2010

http://solvecfs.org/wp-content/uploads/2013/10/pem-series.pdf

Hi ,and thanks for asking..i never experienced so severe symtoms..I get very anxios and probabbly obssesed with having this disease i think almost all the time about symptoms...so last week i make a test..i go three days in a row in gym doing ..one hour of weights first day.1 hour running the second ,third day one hour weights again..i rest the fourth day and the next 3 days i repeat the cycle..so i trained 6 days from 7 ..trying to see if i get pem...it's been 4 days since i done this experiment..i do feel horrible..my legs hurt a lot ,but i run a 10 km in 53 min ,wich is a good time even for a healthy person ..Even after so much exortion ,i am not bedridden, if i force my self i probably can run a 10 k again today( but much more difficult)..I know my condition is much mild that most of the people here but i want to ask you,do you think you can push through Pem? Is it phisicly possible?..Because no matter how bad i feel is still can push trough it..wich makes me think i don t really have Pem..Maybe i have hypochondria..

 

[TrixieStix]

@notmyself Does this seem at all like what your experiencing in terms of the muscle pain and pattern of when it comes on? Is this level of exercise normal for you or is this something new for you? If the training/exercise is new to you what prompted you to start?

https://en.wikipedia.org/wiki/Delayed_onset_muscle_soreness (DOMS)

 

[notmyself]

@notmyself Does this seem at all like what your experiencing in terms of the muscle pain and pattern of when it comes on? Is this level of exercise normal for you or is this something new for you? If the training/exercise is new to you what prompted you to start?

https://en.wikipedia.org/wiki/Delayed_onset_muscle_soreness (DOMS)

In the legs is probably Doms..wich i am familiar with it..cause i used to train often in the past...but the general weakness is not typical to Doms..With fibromialgia aswell..i don t really fit the criteria..i do have muscle pain often..but they are mild..i never for exemple need to take a pain killer becaus eof the pain..is more like a weakness all the time everyday..strange is the fact is that when i go to gym i have a lot of power..i can lift more weight than all my friends.wich are all healthy..i am very confused..is like i fit into many diseases but in none for sure..i have some parts from cfs and Fibro but my tolerance to intense exercise makes me think is not really this..on the other part with psychiatric disorders,i don t feel depressed cause i see the beauty of life,but i cannot do the things i want becuase i feel limited by my body..Anxiety disorder can be the cause..but the only thing that cause me anxiety is the fear of having CFS..or some sort of incurable disease..even so i don't have the clasic anxiety symptoms like panic atacks ,palpitations,shortens of breath etc..so i founded hard to belive that anxiety is what makes me fell the way i do..I wish i know what going on to get the right treatment..doctors are not very helpfull..

 

[TrixieStix]

@notmyself What is your life like? Do you work, have an active social life, etc? Have you had a viral illness recently (past 6 months?)

 

[notmyself]

@notmyself What is your life like? Do you work, have an active social life, etc? Have you had a viral illness recently (past 6 months?)

I quit my job in november last year. because i was unwell.i was working abroad and i come home..i did have some colds ( was happening to me a lot in uk , but not very severe,) in that perriod wich kinda intensify my fatigue..but truth be told i was tired before those colds aswell..Right now i don't work..my usual day is basicly doing nothing..going for a movie sometimes..or some drinks..but rarelly..and Read about diseases on internet..I'm living the life! )

 

[xrayspex]

• difficulty thinking clearly
• bone pain
• frequent bone fractures
• muscle weakness
• soft bones that may result in deformities
• unexplained fatigue.....this is just from one site...but everywhere i search..is fatigue and muscle problems..plus others..but this 2 are universal ,let's say like a hallmark in vit D deficiency!

notmyself, it will be interesting for you to treat the vitamin D deficiency and see how you feel, it does seem like vitamin D issues are common in auto-immune problems. I also have the PEM and if I do too much beyond my "energy envelope" (Leonard Jason out of Illinois has a lot of good research about importance of pacing ourselves and he also has CFS) I often get a delayed reaction, I may think its ok to do a fair amount for a couple days and then I will crash where I get increased bad pain, fluish feeling, more brain fog etc I have gotten pretty good at pacing to where I can prevent bad crashes as frequently but sometimes I misjudge and its like I was in denial again that I have CFS because I get sort of blindsided and confused about why it happened. Its odd, and that doesn't happen infrequently and I have had these issues for like 27 years...........

 

[notmyself]

notmyself, it will be interesting for you to treat the vitamin D deficiency and see how you feel, it does seem like vitamin D issues are common in auto-immune problems. I also have the PEM and if I do too much beyond my "energy envelope" (Leonard Jason out of Illinois has a lot of good research about importance of pacing ourselves and he also has CFS) I often get a delayed reaction, I may think its ok to do a fair amount for a couple days and then I will crash where I get increased bad pain, fluish feeling, more brain fog etc I have gotten pretty good at pacing to where I can prevent bad crashes as frequently but sometimes I misjudge and its like I was in denial again that I have CFS because I get sort of blindsided and confused about why it happened. Its odd, and that doesn't happen infrequently and I have had these issues for like 27 years...........

HI, can PEM be delayed more than 2-3 days?.

 

[xrayspex]

HI, can PEM be delayed more than 2-3 days?.

yes did you see the new research they posted on PEM by Dane Cook (I actually live in same city where they did research but chose not to participate in his studies, just because I don't like to induce a crash on purpose). http://forums.phoenixrising.me/inde...ces-of-post-exertion-malaise-in-me-cfs.49402/

You could be in early stages of CFS or an auto-immune issue like Sjogrens Syndrome that shares elements of CFS issues or overlaps with it sometimes. Some people imho get hit full force with an illness right away and others talk about it evolving over a longer period of time......for whatever reason it sounds like you burnt out a bit last year, maybe you could just take really good care of yourself for awhile and see what happens. Its smart you are researching and getting tests, maybe treat the D deficiency, exercise in moderation, do something to take care of yourself on other levels like mindfulness/social support so you aren't constantly thinking only about your problems and eat healthy diet right for you etc

 

[TrixieStix]

@notmyself I second xray's advice.

 

[notmyself]

I thank you all for answers,i know you are all well intented and i wish everyone on this site the best health!! i'm gonna leave this site cause i've seen so many stories here that scares me so much..It doesent help my recovery aswell seeing that almost everyone here say this is not curable and most are bedridden..maybe is the cold reality but i refuse to belive it..the human body have a incredible power of healing.i come from a family of people that don tknow what diseases are..no one in my family have a disease..so i definatelly have good genes..i'm gonna heal regardless of what my problems is...I hope the best for everyone.Good luck and stay strong!!

 

[Dainty]

About the post exortional malaise..this is probably the only one thing that separate Cfs than other diseases,but is so vague,i don treally know what ''malaise '' mean..i do feel tired the next day after exortion..but is not this the same for everyone?? It's not a dramatic change in the way i feel..Does PEM means you are are bed ridden ,like with a nasty flu ?

Hey @notmyself, so, it sounds like you haven't heard the low-down on CFS yet. There's actually a lot more besides PEM that distinguishes ME/CFS from other diseases, but if you've only ever read the CDC's definition of it then you wouldn't know. The weird thing is, there are several different definitions of CFS floating around. Some people in high places decided to tailor the definition towards the psychological, so some offiicial definitions easily include anyone who has depression.

There are two official definitions of ME/CFS that we patients tend to appreciate: The Canadian Consensus Criteria and the International Consensus Criteria. You'll find PEM and other abnormalities described in detail in both of those links. If your symptoms match either or both of those, then it is extremely likely ME/CFS is the culprit.

If not, then while it's still possible you have some version of ME/CFS, it's more likely something else. Regardless, it's always good to test for and rule out other stuff as causing the symptoms, because you wouldn't want to miss something easily treatable!

 

[Dainty]

i'm gonna leave this site cause i've seen so many stories here that scares me so much..It doesent help my recovery aswell seeing that almost everyone here say this is not curable and most are bedridden..maybe is the cold reality but i refuse to belive it..the human body have a incredible power of healing.i come from a family of people that don tknow what diseases are..no one in my family have a disease..so i definatelly have good genes..i'm gonna heal regardless of what my problems is...I hope the best for everyone.Good luck and stay strong!!

Hey @notmyself,

Do whatever you feel you need to do to take care of yourself!

Many of us here, myself included, believe that the body absolutely has amazing capacity to heal itself. I am recovering, slowly, and I'm not the only one. But, it took more than just believing that to get on the road to recovery! That's a big reason why we talk to each other here, because it helps us figure out things to try to help our bodies heal.

Wishing you the best!

 

[notmyself]

Hey @notmyself,

Do whatever you feel you need to do to take care of yourself!

Many of us here, myself included, believe that the body absolutely has amazing capacity to heal itself. I am recovering, slowly, and I'm not the only one. But, it took more than just believing that to get on the road to recovery! That's a big reason why we talk to each other here, because it helps us figure out things to try to help our bodies heal.

Wishing you the best!

It seems i come back ))...Thanks ,the info was very usefull..and i check my symtoms according to ICC,wich didin t help much unfortunatelly..The Pene wich they say is compulsory ,i don t have it the way they describe...is much more mild ,it doesent change much my usual levels of fatigue regardless if i exort myself of not(the only thing is muscle pain. but that's normal with exercise)..and in all of the others categories i have like one or two symptoms instead of 3 like they required..so i don t know..

 

[Shoshana]

For me, the post exertion malaise is VERY extreme, would be impossible to miss it.

There are some times when it is delayed, but it always is a major setback,
and comes on from very small activities, even if I pace them and modify them.

It makes me unable to do anything, and often lasts for days.

Shoshana

 

[Shoshana]

@notmyself

I agree with above advice to do whatever helps you.

Especially do what can help you to maintain hope and positive thoughts.

They are good for any healing, and good for all life, any day possible.


There are lots of reasons why you might get well!
And we hope for you that you do!


Even though I , myself, eventually did get worse , and myself am very ill,

I did also have some times when I got better for a while,

and I , like many other people on this site,

DO maintain positive attitudes, even now,
and we bolster each other.


Maybe spend some time on the other community part of this forum, too,
where there are a lot of fun topics, for change of focuses whenever we need them!

Shoshana

 

[notmyself]

For me, the post exertion malaise is VERY extreme, would be impossible to miss it.

There are some times when it is delayed, but it always is a major setback,
and comes on from very small activities, even if I pace them and modify them.

It makes me unable to do anything, and often lasts for days.

Shoshana

Sorry to hear that ..If severe Pem will be mandatory for this illness i will knew for sure that i don't have it..i am amazed and i admire you people for your strenght to carry on..it's trully unbeliveable..

 

[Shoshana]

Thank you for that

@notmyself

I appreciate it.

And yes, maybe you will, in time, just get better,
or perhaps you may find out that you have something else which is more easily treatable.

 

[TigerLilea]

• unexplained fatigue.....this is just from one site...but everywhere i search..is fatigue and muscle problems..plus others..but this 2 are universal ,let's say like a hallmark in vit D deficiency!

I haven't seen unexplained fatigue listed on any of the reputable sites such as Mayo Clinic.

 

[TigerLilea]

Hi ,and thanks for asking..i never experienced so severe symtoms..I get very anxios and probabbly obssesed with having this disease i think almost all the time about symptoms...so last week i make a test..i go three days in a row in gym doing ..one hour of weights first day.1 hour running the second ,third day one hour weights again..i rest the fourth day and the next 3 days i repeat the cycle..so i trained 6 days from 7 ..trying to see if i get pem...it's been 4 days since i done this experiment..i do feel horrible..my legs hurt a lot ,but i run a 10 km in 53 min ,wich is a good time even for a healthy person ..Even after so much exortion ,i am not bedridden, if i force my self i probably can run a 10 k again today( but much more difficult)..I know my condition is much mild that most of the people here but i want to ask you,do you think you can push through Pem? Is it phisicly possible?..Because no matter how bad i feel is still can push trough it..wich makes me think i don t really have Pem..Maybe i have hypochondria..

This doesn't sound like CFS/ME at all. Of course you feel horrible after working out hard six out of seven days. Most people would, especially if they aren't used to it. That is NOT PEM. If we were to try working out that hard we would end up bedbound for days, if not weeks.