Can it be that I have me/cfs

[Sushi]

....
Is it fair to say that , i went for run with dog around the block , was tired but not hit by a truck , I can rule out m.e ?

I don't think any of us could say anything that definitive--testing is necessary to even guess at what your diagnosis might be.

But most of us could say that we could not begin to run around a block--ever! In fact if we did anything aerobic for more than a minute or two, we would likely feel like we had been run over by a truck the next day. Personally, I can't run at all and there were times when I couldn't walk.

Best,
Sushi

P.S. (edit)

I really hope that I did not come off as someone that says , hey I'm tired I must have cfs

Don't worry, I didn't think that for a minute!

 

[Redgreen33]

It depends on the severity of ME. Patients who are almost recovered probably give us a good look at what mild ME is, though patients will not be initially diagnosed at that level of severity. I think mild ME does exist, but does not get diagnosed.

In mild ME exercise is indeed possible without severe PEM. In severe ME, there is no chance you could run. In mild ME, then you could handle some, but constantly increasing your exercise demands over time would probably see a substantive decline in functioning over time, until you no longer had mild ME but moderate or severe ME. It would be a relapse.

The point is, at the moment anyway though this could change in the near future, it requires a knowledgeable doctor to sort this out.

I see .... Very confusing because when i read the hummingbird site or whatever it is , it keeps saying that when you get m.e you know you have it , it's not something that gradually gets worse , it's a distinct onset , but now from what I read here that doesn't seem to be true .

And again as far a cognitive problems , I don't really have any problems with memory or anything , but I do notice my concentration has declined especially from watching tv.

 

[Izola]

Oh !? My goodness , sushi I sincerely apologize , I really hope that I did not come off as someone that says , hey I'm tired I must have cfs , my tiredness is very unusual for me and scared me , I'm really not at that stage at all , but I thought maybe I fell in a category that I had very mild m.e or something , but not to that extent.
But understand that the criteria described in ICc and ccc , you have to understand that a lot of people can feel as if they fall in that category , that's why it's better for me to hear it from people who actually suffer from this horrendous disease

Is it fair to say that , i went for run with dog around the block , was tired but not hit by a truck , I can rule out m.e ?

Two years into my M.E. I climbed a 9 mile peak in the Superstitions--with a planned 15 hour sleep after and a lot before. On the way down I slid a lot of the way. Couldn't walk for a while, either.

Neither my M.E. nor my P.E.M. was anything near what it is now. A trip up a stair case can now trigger it.

Check out the the Canadian Dr. Hyde on the web site at nightingale.com or org ( or close--there are other nightingales--it took me about 1 or 2 minutes to find him from what I just gave you.)

Also go to hbfd.org. You will find a lot about M.E. symptoms and tests. These 2 sites will give you an M,E. tutorial. I have no idea which province in Canada is where even though I used to vacation a few miles from the Canadian border and had many maps. Dr. Hyde is in Canada and he does very thorough diagnosis.

My major first symptoms? An encephalitis with all the horrors that entails and Depersonalisation -- a loss of "self" so deep and profound I didn't know where I ended and others began. And, having been ubber healthy before, I don't know what the symptoms of flu are verses a bad cold or the other strange but short illness we get. Good Luck. Iz

 

[Redgreen33]

I agree with everyone suggesting that you will need to see a knowledgeable doctor to rule out all other options.

One possibility is that you are permanently experiencing PEM which is why you don't see an uptick of symptoms after exercise. While you are figuring out what's going I think it would be beneficial to rest as much as possible and see if you feel any better. It took me a long time to learn that I was permanently over my limit.

Maybe , but then I guess I'd have a very mild form of m.e , compared to what people have told me , feel like getting hit by truck or having cognitive issues like sushi explained , I have not experienced anything like that .

 

[Redgreen33]

Two years into my M.E. I climbed a 9 mile peak in the Superstitions--with a planned 15 hour sleep after and a lot before. On the way down I slid a lot of the way. Couldn't walk for a while, either.

Neither my M.E. nor my P.E.M. was anything near what it is now. A trip up a stair case can now trigger it.

Check out the the Canadian Dr. Hyde on the web site at nightingale.com or org ( or close--there are other nightingales--it took me about 1 or 2 minutes to find him from what I just gave you.)

Also go to hbfd.org. You will find a lot about M.E. symptoms and tests. These 2 sites will give you an M,E. tutorial. I have no idea which province in Canada is where even though I used to vacation a few miles from the Canadian border and had many maps. Dr. Hyde is in Canada and he does very thorough diagnosis.

My major first symptoms? An encephalitis with all the horrors that entails and Depersonalisation -- a loss of "self" so deep and profound I didn't know where I ended and others began. And, having been ubber healthy before, I don't know what the symptoms of flu are verses a bad cold or the other strange but short illness we get. Good Luck. Iz

Well you have now scared the life out of me

 

[Redgreen33]

I checked out dr Hyde , but according to him , or what's on his site , m.e had a sudden onset , patients are well one day and very I'll the next , is not my case whatsoever , I think I will be dismissed , was your dp from encephalitis?

 

[Izola]

Well you have now scared the life out of me

Don't be scared. You don't have a diagnosis You need a rule in/rule out. Don't climb mountains and enter running competitions. Pamper yourself, give your body and mind a lot of rest from whatever bug you have I have M.E. from the mid '80s before this thing was even renamed "cfs."

No information abounded for me until the turn of the 90's. Exercise and exertion is the worst things for you to do.
The lack of M.E. knowledge sentenced a whole generation of us to a brutal life. that need NOT be the case for you.

Rest, early on, and a diet full of nutrients and antioxidants are helpful. REST! No one here can say for sure what you have.

Everyone's first symptoms do differ somewhat. Sometimes, a lot. There are multiple scans that can be done as well as the "exercise" test" and other tests. A M.E, knowledgeable clinician needs to observe you and give you R/O tests.

See a Doctor who can diagnose or R/O M.E. If you have tons of money they are out there. If not, check out Dr. Hyde. He is one of our experts who diagnoses for a reasonable fee.

It can't be denied, from what you said, you feel awful enough to know that whatever is going on with you is different from any illness you have experienced before. I hope you do not have M.E.

M.E needs to be caught early for the best outcome. ( It can be diagnosed early.) I would assume early as well for other diseases or medical states. I wish you well and the best of outcomes. Iz

 

[Izola]

I got ok pretty quickly. I did 7 or 8 trials in a few months after that and only lost one. I was scouted for my writing skills but family matters had to take front seat.

A lot of things can make you feel depersonalized. Reaction to medication, fever. Uni admission exams or finals to name a few.

I suffered a head injury a few years ago. Now that caused problems. Not that my M.E. doesn't. Many of us are this ill because no one advised us to rest at the onset.

But you don't know what you have, Neither I, nor any of the people on line know what you have and what you don't.

Dr. Hyde, in Canada, is a really good diagnostician. The good part about him is that he knows all about ME and a lot of other illnesses. He has acknowledged that some of the precursor illnesses go unnoticed. He also checks for other illnesses and does referrals. Let the Doctor evaluate your issues. As soon as ME gets ruled out. the sooner you don't have to scan these forums.

Sorry I scared you. Those few days scared me, but I got me back. Good wishes and rest well.

 

[taniaaust1]

I feel as if I didn't have the fog I would be fine .

I think I can safely say with that comment you made that you would not get a ME/CFS diagnoses from a good specialist who knew what he was on about.

You are way underestimating how this illness is. You obviously arent well but even mild ME/CFS is worst then you appear to right now have.

You seem to be OCD too over what what is the difference between ME and CFS and your confusion over that when as it is most here are telling you they currently doubt you have ME/CFS.

As another said, we are so sick we often travel thousands of kms/miles to see a ME/CFS specialist and if you truely think you have this illness, that is what you need to do but do consider if you could be being obsessive about it currently before you have ruled out everything else which could be causing your symptoms.

I'm sure in early stages you must of panicked trying to find out what was causing you to be active normal , to really tired for months?

Nope I didnt. I only paniced once I got to the point I was so severly sick I had no chance of passing my collage and couldnt do my exams due to my cognitive issues with this illness (I'd lost a whole years worth of study even thou I attended the lessons I couldnt absorb any of it). The only ones at this site we usually see panicing over it is those who are about to loose jobs or their husbands and stuff like that over it. Im always amazed at how people dont commonly panic when they are going throu hell with this.

From what Ive noticed is that people dont seem to panic over this illness but rather panic over the life affects its actually doing to them.

At the 2mth mark where you say you are at.. most people still believe they can find out what is wrong and recover... and besides you said your depersonalization started after stopping the drug which wasnt too long ago either. I do not think most would be panicing at this point (thou certainly not happy).

And cognitive issues I don't understand how bad they have to be to be considered ?

ME/CFS cognitive issues make life harder for those who have ME/CFS. They may be minor in some but still there eg forgetting peoples names, messing up words etc. In many of us they are quite severe eg not recognising family members, I need a support worker to help me organise before I go out the door to go shopping.

 

[taniaaust1]

, I understand the description of pem but don't understand it , I mean I am tired after doing things like going to grocery store , but I mean I've been tired for 2 months so hard to tell

Think of PEM as rather being a collection of symptoms which happen usually with a delayed reaction after stopping an activity eg PEM may hit from an activity 24 hrs later and PEM isnt just tiredness but other symptoms too. Think of it being a complex of symptoms.

From your comment Ive quoted, you seem to think that PEM is just about fatigue.. but its not (this is a myth which has been much put out there that his illness is mostly about fatigue).

 

[taniaaust1]

Is it fair to say that , i went for run with dog around the block , was tired but not hit by a truck , I can rule out m.e ?

If you did that and was only tired, I'd very much doubt ME (as I said those who get this get other symptoms too when they exert, not just being tired).

Ask yourself when you exert what symptoms do you get after which remain or come in later (and do not go as they should). A very mild ME case would have to do more then run around a block once but we all, mild case or not, get a group of symptoms which come in after we exert once we reach that point.

So what happens to you when you reach your exertion point whatever that is for you and go over it? (your reply could be a good indication on if you "could" have mild ME/CFS or not).

I myself arent going to recommend you to rest as if you start doing that and you dont have ME/CFS you could end up getting loosing whatever fitness you have now and exercise does help the health in many OTHER conditions including it can help anxiety issues etc.

 

[Izola]

Thank you, justy.

 

[alex3619]

The earlier definitions of ME required sudden or definite onset. That is because they were based on epidemics, in which some unknown pathogen or other trigger caused a large number in a local population to get sick. So there are some who require sudden onset.

Yet there are huge numbers of patients who do not have sudden onset who have identical symptoms in all other respects. So it is very unlikely that sudden onset is necessary, only that it is common and is a hallmark of an epidemic.

There is only one way to be sure that any group has a high likelihood of having exactly the same illness. Only those from a specific geographical area, during a limited time, in a cluster outbreak, can be confidently said to have the same thing. At this point we cannot be entirely sure that even patients from two different cluster outbreaks have the same thing.

This comes down to causes and triggers. If there are many triggers and one final causative pathway, then many different paths lead to the same disease. On the other hand ME might be two or more different diseases. I think its very likely its one disease, but since it involves a crash in energy production then any other body system that is weak, or potentially weak, for any reason, will be adversely affected. That will vary person by person, and at different times and stages in disease progression.

One thing that concerns me is that a lot of studies with fairly strict (but not Ramsay strict) disease definition show about a 70/30 split in findings or response.This looks like two disease groups. If all these findings were on the same patient group we would have a better idea, but we cannot really compare as these were on different patient cohorts.

What has to be kept in mind is that the science of ME is not very advanced compared to even MS or lupus. We need a lot more research. We need research that allows for issues around definitions and patient cohorts. Sadly we are not there yet, and current efforts by the CDC are not entirely encouraging.

 

[Izola]

Alex:

That is a good theory may explain the lack of sudden onset in otherwise classic M.E. cases. Let's hope that the evolution is not so fast as it might appear were we all to have the same disease here.

The CDC changed the name Myalgic Encephalomyelitis to "chronic fatigue syndrome" and strung a mishmash of symptoms with their privately stated hope and understanding that a lot of other illnesses including depression, would end up in the bag diluting the symptoms of M.E. in research samples and in doctor's minds thus never getting research, respect nor treatment traction.

Using the word "fatigue" was their big joke. Who would respect a disease with "fatigue" in its name? And Syndrome? They knew as we all found out that it was a bunch of random symptoms strung together, not a delineated disease. They also knew that the whole combination of the name and the dilution would tag us as mental and lazy. Imagine those of us who had to apply for disability based on "fatigue and sore throat." Sheet.

Their "How to hide an epidemic in plain sight" worked for almost 3 decades. Hey, it's still working. Now things are so complex with all of us smudged together under one name it will take another Einstein to untangle the web, or the mess. And another millenium for people to believe we are really ill.

Their sick joke is a major major part of the IOM/HHS debacle along with the money grubbing greed. Lay people, with the big nudge from greedy shrinks think we are nuts. And probably so will the majority of the IOM panel. Won't it be dandy when all many can get are anti-depressives and exercise? The insurance companies are already stoking their gold smelting furnaces.

Hopefully things have progressed far enough, thanks to our experts, and all the brilliant biochemists and microbiologists patients who roam around the forums that it won't be that bad.

The CDC guys had years of chuckling about the wool they pulled over the world's eyes. Our experts stuck with us, knowing what had been done and narrowed the research cohorts in much of their research as best as they could. That's probably most of the 70/30 split phenomenom. The rest, well that's biology. Virus, bacteria and such evolve quicker than we do so a lot of different strains may emerge.

But for our experts, genius patients and the few blinded kind physicians who help us, we could be at the turn of last century, not this one.

We are not all of one disease, I think. We need sorting for everyone's benefit. Imagine all of us who may have one simple little thing to fix but it was overlooked because of all the misguidance given out by the CDC. And out of desperation and necessity because of the CDC's actions and inactions, people are playing chemistry set with their bodies which adds to the complexity, consternation and mis- or no diagnosis of diseases or reparable conditions. And bless you patients who have discovered and shared methods to ease the pain and disease.

Just think of the potential lost opportunities for a cure, or a partial cure or at least a reprieve because of the CDC's and HHS's games and the FDA's failure to fund. 20%of nothing is still nothing. Let us hope that we get something. Sometime.

For those of you who know not of what I speak, read "Osler's Web." You won't be able to put it down until you drop it. It makes other authors look like pikers. [Except for Edward Hume. Don't ask.]

This disease may be evolving in more ways than we know if we all have the "same" disease. Let's hope to hell we don't.

If you notice the absense of a certain consonent, don't worry. My lapto doesn't "P" well. Iz

 

[jann1033]

I had a friend that wondered"if she had what I have" because she was tired after ger daily activity. I'll tell you what i told her. Its not being "tired", its total exhaustion. It's having to set chairs up down the hall to the bathroom because you can't walk the entire 15 ft with out collapsing in to them on the way. Its laying in bed and having to spend 20 minutes to move your outstreched arm to your side because you don't have the energy to move it more than an inch it two at a time. Its not having enough energy to talk or chew or hold a cup or even a spoon. If you had it you'd know it, its unmistakable.

 

[amaru7]

I checked out dr Hyde , but according to him , or what's on his site , m.e had a sudden onset , patients are well one day and very I'll the next , is not my case whatsoever , I think I will be dismissed , was your dp from encephalitis?

Dr Hyde is one of the few doctors who say that cfs and ME is not the same. In his view the first is gradual onset and the second acute onset. Fact is there exists both.

To get an answer you may do mitochondrial testing. This is in my view the number one test for cfs, also according to Dr myhill, check her website to learn more about it

 

[Redgreen33]

If you did that and was only tired, I'd very much doubt ME (as I said those who get this get other symptoms too when they exert, not just being tired).

Ask yourself when you exert what symptoms do you get after which remain or come in later (and do not go as they should). A very mild ME case would have to do more then run around a block once but we all, mild case or not, get a group of symptoms which come in after we exert once we reach that point.

So what happens to you when you reach your exertion point whatever that is for you and go over it? (your reply could be a good indication on if you "could" have mild ME/CFS or not).

I myself arent going to recommend you to rest as if you start doing that and you dont have ME/CFS you could end up getting loosing whatever fitness you have now and exercise does help the health in many OTHER conditions including it can help anxiety issues etc.

That's where I'm confused , yesterday I walked a long time did a bit of chin ups , pushups , did a bit of errand but mostly say around all day , my work is pretty much on computer nowadays

Anyways this morning i had trouble waking up , still tired after pretty good nights sleep actually didn't wake up for once I'm a bit sore , which I seem to be every morning now , still have fog and dp but not worse than yesterday , it's just a steady state of tiredness

 

[Sushi]

That's where I'm confused , yesterday I walked a long time did a bit of chin ups , pushups , did a bit of errand but mostly say around all day , my work is pretty much on computer nowadays

Anyways this morning i had trouble waking up , still tired after pretty good nights sleep actually didn't wake up for once I'm a bit sore , which I seem to be every morning now , still have fog and dp but not worse than yesterday , it's just a steady state of tiredness

That really doesn't sound like PEM. Since things like chin-ups and push-ups are very aerobic (and use of the arms in particular in this way is likely to set off PEM), if it were PEM you would likely have the "hit by a truck" experience the day after.

Sushi

 

[jann1033]

That's where I'm confused , yesterday I walked a long time did a bit of chin ups , pushups , did a bit of errand but mostly say around all day , my work is pretty much on computer nowadays

Anyways this morning i had trouble waking up , still tired after pretty good nights sleep actually didn't wake up for once I'm a bit sore , which I seem to be every morning now , still have fog and dp but not worse than yesterday , it's just a steady state of tiredness

I assume your mental health professional had you get a check up for physical illnesses? Did you mention your tiredness to him/her? Sorry forgot if you are on meds but some of them make you tired, spaced out. Could be you just need them adjusted. I'm not an expert of course but I just can't imagine being able to do what you do. I'd be shocked if you have ME or CFS. With me pem always starts with my hands (back of palms)hurting(weird but that has always been my first symptom if over doing it, used to be when I got to the point of overdoing, now its the day after). Then aching, extreme fatigue , usually flu-ish then whatever decides to rear its head(). My sleep itself or lack of it more accurately is fairly constant and is not related to pem, only changes during an actual flare or relapse.

 

[Redgreen33]

I assume your mental health professional had you get a check up for physical illnesses? Did you mention your tiredness to him/her? Sorry forgot if you are on meds but some of them make you tired, spaced out. Could be you just need them adjusted. I'm not an expert of course but I just can't imagine being able to do what you do. I'd be shocked if you have ME or CFS. With me pem always starts with my hands (back of palms)hurting(weird but that has always been my first symptom if over doing it, used to be when I got to the point of overdoing, now its the day after). Then aching, extreme fatigue , usually flu-ish then whatever decides to rear its head(). My sleep itself or lack of it more accurately is fairly constant and is not related to pem, only changes during an actual flare or relapse.

Well I stopped the meds over a week ago made me crazy, don't want them anymore .
I did tell her but as most tell u it's psychosomatic .
I just don't know about pem because I haven't felt normal in 3 weeks , constantly tired but can still do things if I had to , if a fire broke out I could carry my dog down flights of stairs and run , but I do not have the mental and physical energy I had a month ago