Recovered, partly recovered. or wishful thinking

[free at last]

Saw a thread here today about those who think they have recovered or partly recovered. But through testing, showed marked impairment compared to controls. indeed even though i often feel im better, even during those times, i dont really acknowledge the muscle symptoms, headachs, dizzyness, weakness, that is just there always now. One forgets that before i didnt have those things as persistent as i did after the illness started. And i just dont acknowledge this unless i really think about it. Maybe one just gets too used to it.

Of interest to me, the studys of those who stated they had recovered or partly recovered, but through careful testing this appears to be defianatly only a partial recovery.

As after 15 years i alternate in thinking ive recovered, to only partly recovered, depending on the periods of good health. Which occassionaly can be for long periods of time LEADING TO CONFUSION ? . leading to a feeling of recovery, only to suddenly feel quite poisened again for 24 to 48 hours, sometimes after excercise and sometimes for no apparent reason.

I recently as of the last year, had long periods of good health lasting many weeks. Then as has been the pattern for so long, 4 steps foward, then one back again. I recently had a mild temperature of 99 F With ME symptoms, and just had two crashes in the last two weeks without temperature. I have no idea why im getting more symptoms of late but its very worrying and confusing.

Ive noticed ( wonder if others have noticed this pattern too) that the more severe a relapse, the longer i seem to get between the next relapse. As after the tempetaure crash, i was fine for quite a few weeks, then had two more weaker crashes there after, just this last couple of weeks. the last one lasting 48 hours

Another thing ive noticed over the years ( again wondering if others have this too ) is often i will sleep and always wake feeling very rotton, ( that poisened feeling ) it takes me a while to shake this feeling. each and every waking time. But as the morning progresses i do indeed feel less poisened.
I know one feels groggy when they wake up, but this is different, much more poisened and sluggish than just sleep still in my system.

The mind games this illness plays are very cruel. I do belive mild crashes i have learned to ignore. or forget in a way like they never happened.

So when the longer periods of good health arrive i mistakenly think im cured. ( maybe the mind does this like denial or something ? ) Only to learn once again i am not cured at all. Im just doing much better.

I hate this illness and all its mind games. No wonder we are disbelived. It even tricks me. just when i realize no your still in the grip of this stupid illness, ill have another lengthy time where i feel ok again.

As i said NO WONDER OTHERS THINK WE ARE CRAZY
i question my sanity also. Relaspse remission relaspse remission ahhhhhhhhhh what gives with this messed up mind wreck, damm stupid illness. I hate it. and it leaves me hateing myself, and doubting my sanity, even though i know im not crazy. and would defend myself to a disbeliving doctor, Pointing out my medical history of constant high temperature flu like attacks 102 F that lead to 15 years of this mind wrecking game called ME

Do others feel the same here, suppose i just want reaasurance im not losing it. even though i know i am not ???????????????????????

Please tell me this mind game is what you get too

 

[Marco]

I can identify completely.

We DO forget what its like to feel absolutely and 100% well and become acclimatised to the constant feeling of illness which describes everyday life outside of relapses.

As an example I had to put together a report on my current state of health and used the Canadian Consensus Document symptoms list as a template. I intially had marked recurrent sore throats and swollen lymph glands as absent and joint and muscle pain as mild. As I remembered it I had the first two symptoms at the onset of illness but not for many years and pain was also much less than at the start.

I was up against a deadline and probably pushed too hard, ending up with symptoms flaring - including sore throat, sore and swollen glands and widespread muscle and joint pains. I also remembered that I have almost constant headaches that I'd missed as part of the CCD description of pain.

So. I think its easy to become so accustomed to the feeling of illness (and poisoned is the perfect description) that we consider ourselves recovered even at a level that would have 'normal' people in bed with a hot water bottle and a few paracetamol. So much for illness ideation and catastrophising.

IF, I was ever to be cured I'm not even sure how long it would take for me to fully believe it?

 

[xchocoholic]

Hi Free,

I'm one of those who feels that they have partially recovered from some of my "SYMPTOMS" of CFS/ME/FM or as it was known in 1990 - CFIDS. I've been house bound and/or couch bound since 1990 so it helps to keep that in mind. I realize that I'm still disabled but so many of my symptoms are gone now that I'm cautiously optomistic about overcoming my CFS.

I was forced to use a motorized cart for 16 and 1/2 years due to ataxia and muscle weakness. And now I've been walking normally for almost 4 years. It would be impossible for anyone not to be excited about this. This symptom just went away one day one year after going on the elimination diet.

Catseye is another one here who is recovering. We're friends and I've seen her progress first hand. She's been a real inspiration for me.

When I was diagnosed, my "symptoms" were all grouped together and it was determined that I had CFS/ME/FM. Which is exactly how CFS is diagnosed currently. In my case, no known reasons for these symptoms were ever looked for. :Retro mad: Sure, the Mayo Clinic checked me for everything under the sun, but they don't look for root causes.

Some of my symptoms simply went away after a few days on the elimination diet and others took awhile. The addition of certain supplements is helping me now too. You can look at my story to get the details ...

This grouping of "symptoms" in order to come up with a diagnosis confused me at first. Then after some reading I saw that many of my symptoms were actually symptoms of other problems. Figuring out that I had chronic hypoglycemia was a real eye opener. This accounted for some of my visual problems, brain fog, anxiety, etc ... I know because if I keep this under control, I'm fine ...

My guess is that most of us are confused by the diagnosis of CFS or any illness where symptoms are merely grouped together regardless of what may be causing those symptoms in that person. Just from what I've seen on the web in the last 5 years, IBS is a common symptom in many chronic illnesses but traditional medicine isn't interested in looking for the cause of IBS. IMHO, IBS always points to gut dybiosis, food intolerances, parasites, etc. All treatable causes ...

An integrative or holistic practicioner can help with this. They look for the root causes of illnesses ...

HTH ... X

 

[dean]

Living with my facts....

My experience is similar. on and off again without any pattern for over 20 years. however there were years at a time when I would be feeling really good. The initial episode began one day in the late 80's. The usual acute onset of what I thought was a real bad flu, (I can pinpoint it almost to the minute) that lasted for years. I was worked up by numerous physicians who found nothing with the exception of some non specific killer cell defects.... Then slowly, over a period of a couple of years dissapeared. It would come and go for weeks, then days. The intervals of good days would increase. The contrast between good day and bad were so great that it felt like an on off switch. At some stages it would switch on during the day just for a few hours......

Like most people I am sure kept a daily diary. I led what must have been the most examined life trying to pinpoint what would control the switch. Over all this time I have not found anything. (a bad nights sleep can almost mimic the symptoms). In addition I have tried many treatments over the years. Depending on what part of the cycle I was in either none of them worked or all of them worked. I am now also very skeptical of any claim to actual treatment validity. However, that is just me, and it makes me more able to accept what I have.....

I went for years without any attack, or perhaps only a couple of times per year. Then last year I had an attack that lasted about 2 to three weeks. This was after years of being relatively symptom free....Then a about six week ago another attack that lasted until a few days ago.

When I am symptom free I feel better then fine, probably because of the contrast. I feel so good that in the past, there were many times that I thought I was over the whole thing. Perhaps that is what you are talking about. When it comes back, after a long absence, I felt even worse (if thats possible) because of being so disappointed.

After so many disapointments at the unpredictability of this thing I am learning to go with the flow. When it switches on I try to relax. I think about how wonderful my life has been and how lucky I am to do the things that I have done, and realize, that the attack will pass like all the others have....(I really am not that strong all the time, there are the times when I am so far down, like at the bottom of a deep well, that I forget that there is a sky up above).

 

[free at last]

Thank you for your kind responses, It helps to see that im not alone with this, not unique in a unusual way. That others do indeed have the same things happen, and can understand the mental confusion and uncertainty it brings over years of this up and down game. I thought a lot about sugar levels too, as the response to exercise has happened a lot to me, But the times i was checked in the past for sugar levels, must have been normal as the doctors just would say they cant find a reason for these attacks. I dont even know what ive been tested for, or what i have not ? just was told on a few occassions sorry we cant find a cause, you seem to have ME / CFS I also belive many medical problems that produce similar symptoms are all being lumped together in the waste basket called CFS, just because they can not find the reason, XMRV is not ME or CFS its xmrv,

EBV is not ME, its EBV and so on,

ive often thought ME doesnt exist, just the collection of symptoms that are similar, that brings us all together, that they often cannot find a cause for produces the diagnosis ME / CFS this strikes me as rather stupid, we cant find whats made you ill, but its similar to the guy over there who we say has CFS, So you have CFS/ Only later we may find its XMRV or EBV or whatever. I know this after years of trying to understand, its got to do with a virus, the immune system and or bacterial infections, this is not ME, there is no ME virus, Its a collection of illnesses or viruses that produce similar symtoms is what it is, Just because they cant find it, does not make it not so. The germans couldnt find XMRV in blood. then suddenly they can find it in saliva ? theres our proof right there that not finding a virus, doesnt mean there isnt one. I dont want to have ME or CFS i want to know the true virus, or viruses, that either continue to make me ill after the sudden flu like viral attacks, i suffered with onset or the damage to immune system that sustains this illness. I dont have ME or CFS i have a virus or immune dysfuntion brought on by a uknown virus. But that virus has a name And its not called ME or CFS the collection of symptoms it causes they can call CFS if they like. Me i want to know the virus, and stare it in the face. to know my tormenter to reveal its hidden nature. Again not sure if you all feel like this too. By giving us a unprovable illness name. they are bellitling our intelligence. throwing us away on the heap of uncertain diagnosis. because its conveniant for them to so. because there science is not good enough. I know in the end its a virus that did this to me ME CFS is just a useless label because they couldnt find the cause. and so its the same for you all. Lynn Gilderdale had a vaccine that caused her ME, I did not. a different cause for onset, possibly even a different virus. and yet we have the same label. this just has to be wrong. the medical community has messed up big time on this one. Apologies for my spelling everyone, it seems to be getting harder for me to remember words lately. Please keep your life storys coming on this post if you identify with anything im saying. Thank you again for posting your responses everyone. Very very much appreciated. I feel less alone and crazy already

 

[Esther12]

Some of the 'wishful thinking' of those who have recovered makes me think that there is a psychological component, or trade-off for CFS.

The people I've met who have claimed to have 'recovered' had not done so, but had adopted strange beliefs about how their illness was a blessing, as it allowed them to be more aware of their limitations and not push themselves too much in the way a lot of others do. ("So you do less and feel more tired than most people? What a blessing.") The strangeness of this perspective does not take away from the fact that these people have also made real improvements in their activity levels. Maybe an embrace of madness would help us be more physically healthy?

That's probably even more of a mind game though. CFS does raise some problems, and it's difficult that we're so cut off from many of the supports other ill people would use to help them.

 

[dean]

"but had adopted strange beliefs about how their illness was a blessing, as it allowed them to be more aware of their limitations and not push themselves too much in the way a lot of others do. "

First of all I want to stipulate clearly....if I had a choise I would choose not to have this problem...however...., I used to be on a very fast track and thought I would be there forever. When this fast track path was blocked by our thing, I found many avenues to explore that I would not have previously.....eg painting, hanging with family, reading etc etc.... some of these have been a blessing....

 

[awol]

I often feel substantially recovered these days, but then I realize that I am not actually doing anything. As soon as I try to do stuff or eat normally....

 

[serenity]

i am glad this has been brought up, i often hear that a friend of a friend "recovered" from whatever we have & of course then i hear there is no cure for our illness - so how do these folks claim to have recovered?
of course i'd go nuts chasing each one of the millions of whacky treatments i hear cured someone that knows someone i know - but how am i to explain to people that i don't believe there is a cure when they assure me their friends such & such was cured by so & so?
& boy they sure do not look for root causes do they? i am baffled by this, i have a doc i like but he has given up it seems. he just refuses to look for what is actually wrong with me.

 

[free at last]

Hi Serenity and Awol ( great screen name that )

Yep i think the strong message here is long periods of good health doesnt appear to prove recovery does it, and from my own experiances i would say that does indeed seem to be the case, But i can not for one minuete blame someone for thinking they are better, as ive done this myself. I think Dr Peterson made the statement that after years of illness the body can stop reacting to the virus ( or viruses ) producing less symptoms.

But without dealing with the underlying cause, Is only a partial solution, And we have no idea yet what long term effects this will have, I think he was refering to xmrv on this one.

Im surprised i dont read more of the mental impacts this illness can have. I read in a book about ME when i was at the chronic temperature stage. That a paitient would hold hes breath when someone sneezed or coughed in front of him, say on public transport. This im sure put the idea in my head. Then when catching Chicken pox and later another bad experiance i had with a week long influenza ( it was flu as my partner caught it, and was on the news as a outbreak ) i since over the years refused to go to public events or even the supermarket for fear of catching a virus, during winter time.

The swine flu scare last summer meant i spent around a year doing this Mostly locking myself away. More than that, even family members would be a a danger to me. This reaction or phobia is deeply rooted in the ME /CFS illness and the bad experiances ive had with it.

Its caused me the most trouble, And one im still struggling with now.I dont think i will ever beat this fear now. the phobia is too strong a part of my protective shell now.

WIth the summer months now in the uk and very low swine flu levels, i have been out and done normal things. on the train to ashford for the WPI XMRV blood draw was very stressful, i spent the next week fearing illness, as the transport was full of people coughing.

I always seem to be just feet away from someone with a tissue and a cough. spending the next week worrying will i be back fighting for my life again. The cost of this illness can never be measured, both on the body and the mind
Wonder if others have had this bad phobia reaction ? if not how do you beat this fear. To me its like terror and i really mean TERROR. Causing anxiety stress worry, and even on occassion panic. I was so free when i was young

 

[Mithriel]

Myalgic encephalomyelitis was a specific disease which happened in epidemics and sporadically. It was different from other diseases in its cardinal symptom which was an abnormal response to exercise. The causal virus was not identified as virology was very basic in those days. Viruses were grown on fertilised chicken eggs where you carefully removed a piece of shell and infected the embryo. There was a strong suspicion it was Coxsacke B, because the epidemics were often along side polio epidemics and science was backing this up before all research to be squashed

The confusion that exists arose when the CDC invented CFS which didn't even describe the patients who were part of the epidemic they were meant to be studying.

ME was life long unless it resolved in the first year or so but it often presented as flare ups with relatively good health inbetween. Flare ups were often associated with exceeding activity limits or getting another infection.

Mithriel