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Case Histories of ME/CFS: "The Prisoner"

  [ 46 votes ]   [ 9 Comments ]
By David S Bell, MD, FAAP • www.ProHealth.com • April 4, 2012


This is the case history of a man whose fear of relapse 4 years after sudden onset of ME/CFS nearly robbed him of recovery. It is excerpted from Dr. Bell’s free e-book Faces of CFS - Case Histories of Chronic Fatigue Syndrome, published in August, 2000 (© David S Bell, MD, 2000), and downloadable at www.DavidSBell.com. For more on the difficulty of defining recovery in ME/CFS, see the video of Dr. Bell’s recent 25-year follow-up on his patients.

_______________________

THE PRISONER

It is so ironic that while most doctors see CFS as hypochondriasis, I feel that hypochondriasis may be the result of the combination of CFS and the physician ignorance. Patients must sail these waters without guidance, forcing them to make it on their own.

Those of us in good health rarely appreciate our good fortune. We live our lives ravenously, devouring the minutes of the day with work, play, love - ever eager for the next course. We charge ahead, assuming life will go on as always.

In order to accomplish this, we allow ourselves to be oblivious to the suffering of others. We push their pain to the deep recesses of our subconscious, and remain blind to the fact that around the corner may lie an event that will change the foundation of our lives with similar finality.

Gary Burns was just like the rest of us. There was nothing malevolent about his view of life; he harbored no evil intentions. Yet, he was as unaware of the suffering of others as the rest of the world was about to be of his own suffering.

Like most patients, Gary’s ordeal began with a bout of what he assumed must be flu. He was 37, robust and active, a husband and a father.

This “flu” announced itself to Gary one day in October of 1986. The course of Gary’s illness, and the eventual dissolution of everything that he had once taken for granted, was typical for an adult who experiences what we doctors call “sudden onset” of chronic fatigue syndrome (ME/CFS).

Initially, he was offered a month’s sick leave by his company, a nearby factory. He tried to go back to work when his sick leave ended, but often he felt in a state of collapse by noon, and had to leave the jobsite.

He took an extended leave of absence, hoping for recovery. If he could just “catch up” on his sleep, he kept telling himself and others, all would be well. Gary had moments during the day when he found the strength to shower, wander through his house, and ponder the possibility of returning to his job. But, soon enough, “it” would return, and he would tumble onto the sofa and sleep the day away.

Gary still had no idea what “it” was, and his doctor hadn’t a clue, either. Gary had been ill for six months when his doctor announced that he had been unable to discover a medical explanation for Gary’s symptoms.

He advised Gary to “snap out of it,” to get more exercise, and to see a psychiatrist.

Like a lot of people, Gary trusted his doctor and believed what his doctor had told him. With some embarrassment, and worry over the expense, Gary arranged an appointment with a psychiatrist. After all, he was desperate, and willing to try anything. The psychiatrist probed for information about Gary’s life, and Gary answered the psychiatrist’s questions honestly.

• He said he was in the process of being fired, and that he was going broke.

• He confessed he had been unusually irritable, chastising his kids for creating noise and havoc in the house, and sulking whenever his wife tried to comfort him.

• In a revelation that was somewhat difficult for him, Gary admitted he was depressed.

The doctor prescribed an antidepressant, and invited Gary to continue therapy in order to resolve “emotional conflicts” - conflicts that the psychiatrist suggested were the cause of Gary’s disabling illness.

The following day, however, when Gary took the first pill, he rapidly deteriorated, feeling as if he had been hit full force by a freight train.

He slept for two days, and when he was finally able to stay awake, he felt hung over, as if he had drunk a case of liquor the night before. Perhaps not surprisingly, Gary decided to cancel his next appointment.

The psychiatrist’s secretary insisted the antidepressant could not possibly have caused Gary’s severe reaction. She also advised him he would be charged for the appointment, whether he showed up or not. “So much for psychiatry,” Gary thought, and never returned. By then, Gary felt as if he was riding a wild and powerful horse, but the reins had slipped from his hands.

Desperation was a daily staple, and as he lay in a helpless mound on his bed, or the sofa, he searched his mind frantically for solutions.

His mother, whom he had frequently accused of being a “health nut,” owned a health food store. Gary decided to sample the assorted vitamins and nostrums available in his mother’s shop. He began eating organic food and taking vitamins for the first time in his life, although he noticed no immediate improvement.

On his worst days, he wondered if he had a terminal illness, especially cancer, that his doctor had missed. He decided to read everything he could about cancer; if the doctors were incapable of discovering the cause of his symptoms, he would become a doctor himself.

In the course of his reading journey, Gary came upon an article that described CFS.

The stories of the patients in this article resonated with his own experience of the disease: sudden onset; a long, chronic course, exhaustion, headaches, pain; sensitivity to light, night sweats, the sensation - if not the reality - of high fever.

He was stunned when he read that patients with CFS are exquisitely sensitive to many drugs, including anti-depressants such as the one he had taken. He felt as if he was reading his own biography. In fact, he was so persuaded that the long-standing mystery of the last year was resolved, he felt incredulous that his doctor had missed the obvious signs, which now seemed so obvious.

There was just one small detail of the disease, as CFS was described in the article, that didn’t seem to fit: Gary had never really thought of himself as a Yuppie [with “Yuppie Flu”].

Certain of his diagnosis, nonetheless, Gary plunged headlong into health nut-ism, with his mother’s encouragement and guidance. He eliminated fat from his diet and took handfuls of vitamins. He waded through lengthy discussions of echinacea, germanium, and zinc. Still, he remained unable to work.

Even though previous attempts to exercise had ended in disaster, Gary next decided workouts might be the solution to his nightmare.

He committed himself to pushing past the sore throats and exacerbated fatigue that had followed on the heels of vigorous activity on other occasions. In fact, he gave it everything he had, beginning with a brisk, one-mile walk each day.

On day four, however, when he tried to jog, he felt so suddenly weak at a juncture in the road not far from his house, he wondered whether he would be able to make his way back on two feet. He was completely bedridden for the next two weeks.

Gary felt hopeless.

• He had been fired, and most of his friends had dropped him, seeming to have forgotten about everything they had once shared in common.

• The medical profession seemed utterly ignorant of his condition.br />

A day rarely passed when he failed to ponder suicide, but the notion of leaving such a traumatic legacy for his children always pulled him up short.

Now, he became exceedingly cautious with his body.

• He cloistered himself from the noise and activity of his family.

• He woke at nine, downed his vitamins, and showered, and then he rested.

• At noon, he ate a health nut lunch of fruits and grains, and then he rested.

• In the late afternoons, he attempted a few chores and stretched his muscles in the quiet of his living room. His children stayed with neighbors after school until his wife returned from work.

• Together, the family ate a nutritious dinner. Afterward, Gary rested.

• At ten, he went to bed, where he lay quietly until he fell asleep at midnight.

Two years of Gary’s life passed in this way.

Most of what was important to him before the onset of CFS had dissolved in those two years. His children became used to their new father, the one who could not play baseball or take them to the county fair. They began to forget their old father.

And then something wonderful happened: Gary started to get better.

The severity of his daily headache lessened, as did the crushing fatigue; he was able to be more active. Gary felt confident that his improvement was due to his adherence to his rigid schedule of the previous two years.

In the third year of his illness…
He told me he felt he was functioning at about 70% of his pre-CFS activity level.

Still, he planned his days with great care, taking a short walk just twice a week, playing catch with his children each day. He told me proudly that he could ride the lawn mower and cut the entire lawn without stopping to rest in the middle of the job.

It was apparent that he had finally accepted his new life; his despair was gone.

By the fourth year…
Gary complained only of persistent fatigue, muscle aching, and the fractured, disturbed sleep patterns that are common to virtually all CFS patients, and, in fact, are one of the most pervasive hallmarks of the disease.

Although Gary’s symptoms were less severe than they had been in the past however, he continued his rigid adherence to a reduced level of activity. He believed that his careful attention to what he ate and his meager exercise regime was responsible for his improvement; that he had finally regained control of his destiny.

I became worried - not about the illness, but about Gary’s nearly obsessive concern with over-exerting himself. He had become his own prisoner, caught up in self-imposed rules and regulations that severely limited his experience of the world. One day, I voiced my concerns. I told him that he was both his own jailer and inmate.

I told him he needed to take some risks. I suggested exercise.

His mouth nearly fell open, recalling his own disaster with exercise two years before. Most CFS patients have learned through bitter experience that efforts to surmount their disability and engage in the kind of exercise activities they routinely performed before they fell ill is unlikely to have a good result.

But the problem is not exercise, it is the assumption that exercise will by definition change the course of the illness.

• For patients with severe illness, exercise does not change the course and may lead to worsened symptoms.

• But if CFS is getting better, exercise is great and may speed the recovery.

I suspected Gary was no longer in the severe illness category. In fact, I was uncertain whether his reduced activity level, which continued to hover around 70% of what was normal for him, was due to CFS, or due to physical de-conditioning as a result of his fear of exertion.

After all, he had been monitoring himself like an organism under a microscope for three years. Granted, he had learned the brutal limits of his disease through suffering, but it seemed to me that he was becoming almost hypochondriacal in his attention to his body.

It is so ironic that while most doctors see CFS as hypochondriasis, I feel that hypochondriasis may be the result of the combination of CFS and the physician ignorance. Patients must sail these waters without guidance, forcing them to make it on their own.

Of course, the only way to find out was to ask Gary to exercise, and he and I both knew the proposition was risky.

Which is better: to exist safely in a compulsively rigid way of life? Or try for a full-out, 100% return to normalcy - at the risk of initiating a relapse that might turn the clock back for Gary by months or even years?

Gary reminded me that it was his life I was risking by making such a request, not my own. Good point. I was asking him to throw away his fear of the pain and suffering of the past years, all the while courting its return. Did I have that right? I had come to know Gary well by then. My observations and intuition led me to believe that Gary was going to be one of the lucky ones; he was going to beat the illness.

All signs pointed to continued improvement.

• If my suspicions were in error, I thought, Gary would have a relapse, but he would likely recover from it within a month.

• And, more importantly, at least we would have our answer. He would still be a prisoner, but he would be prisoner of the disease, not his own fear.

After a great deal of discussion, Gary finally agreed to try.

We planned an exercise program that was extremely gentle.

• Most healthy people wouldn’t have considered it an exercise program at all.

• We planned stretching exercises, then slow walking, then brisk walking - depending upon the progress, if any.

When Gary joked that he was dedicating his body to science, his wife frowned. In the beginning, Gary experienced significant anxiety, and increased muscle aching, as well. But, over a period of weeks, the quality of his sleep began to improve, along with a decrease in the muscle pain.

In fact, at the end of two months, it was clear to Gary and to me that he was better.

And when his fear began to diminish, he became more willing to venture out into the world of the living. After three months, he had even more energy, and felt confident and enthusiastic about life to a degree he had not experienced for years.

This is not to say his fatigue evaporated. He was tired, sometimes very tired. But, as Gary pointed out, it was “good tiredness,” not a CFS tiredness.

In the complicated realm of CFS, where there remain so many unanswered questions, I am not sure what “recovery” actually means.

• I often wonder whether the illness vanishes completely, leaving the patient the same as before,

• Or if it simply recedes in the background, becoming mild enough that the patient learns to ignore its nagging distractions.

Both probably occur.

In a study Mary Robinson did of our patients, 20% remained disabled after 15 years. Of the remaining 80%, half persisted with symptoms although they were able to lead relatively normal lives.

Several years have passed for Gary and we continue to stay in touch. He has clearly entered that privileged circle of CFS patients who actually recover fully from the disease. I do not think that his continued recovery can be attributed to exercise, or even the vitamins, but who knows?

I do feel that if Gary had not tried the exercise, he would have stayed in his prison for the rest of his life. Gary recovered for reasons that are mysterious, but he needed to take a leap of faith in order to demonstrate the recovery to himself.

Gary doesn’t really think about these issues very much anymore. He is working again, and engaged once more in the lives of his spouse and children. Nevertheless, he has been changed profoundly by his experience. He left his prison of four years, but as a different man. He carries with him an appreciation of his incredible good luck. His suffering now is confined to feeling the suffering of others who are in pain.

When he watches the news on television, and there is a story about AIDS or multiple sclerosis or cancer or CFS, he does not rush to change the channel as he once might have done.

Instead, his eyes fill with tears.

- David S Bell, MD, Aug 15, 2000

____

Note: This information represents the experience and opinions of Dr. David Bell. It is generic and for general information purposes only. ME/CFS/FM is an extremely complex illness, and such general information may not be appropriate for an individual with this illness. Therefore, should you be interested in the ideas presented here, please discuss them with your personal physician.



Please Discuss This Article:   Post a Comment 

Has He Really Recovered?
Posted by: Mikie
Apr 4, 2012
Yes, some people do recover but this doc acts as though a little exercise cured him. The next time he gets hit with a virus or bacterial infection, he is likely to relapse once again. I'm glad this man has recovered but he can never consider himself cured. Many of us with CFIDS/ME have recovered--over and over again, getting worse with each relapse. This can happen over decades.

Does it give hope to the rest of us to know that one of us recovered? In some ways, yes; it is evidence that it can happen. On the other hand, did the guy really have CFIDS/ME? Too little is known to make any definite statements about this condition and recoveries. Will he relapse? Possibly. I hope he doesn't.

Many of us will never recover on our own with a little exercise. Many of us cannot even get out of bed on most days. This man's experience is not representative of the rest of us. Unfortunately.
Reply Reply

 
Where did you get that?
Posted by: peterwac
Apr 4, 2012
Mikie,

I can't see where you got the idea that Dr Bell was suggesting that exercise caused the improvement. The article says exactly the opposite. Explicitly.

Peter


 


five year cut-off
Posted by: scottyojai
Apr 4, 2012
Both my sisters recovered, but they recovered within five years of onset. I have not recovered, nor has my wife....we've had it for decades...as have most of the people in our support group. My wife and I have read other accounts of recovery within the five year barrier, exercise or not. It seems there really is something to this five year "get well or else" timeline.
Reply Reply

Early Thinking
Posted by: Stretched
Apr 4, 2012
These kind of articles implies there is hope for PWCs.  However, this line of thinking was prevalent
early on in the now 26- year outbreak of CFS when 'exercise' was panacea for all ills. This particulary well known and well intentioned doctor should emphasize that this parable is the exception and not the rule...
one can not exercise his/her way out of similar 'hidden illnesses', e.g. MS, Altzheimers, tmacular degeneration, et al.

More encouraging is to witness (again and again) the actual severity of symptoms that ring true but are constantly questioned, introspectively and by

In my case (a victim from the 1985 outbreak in Lake Tahoe ), exercise must be minimal or it will cause crashes - the more exercise the more severe the crashes and lengthier the 'recovery' (to nairly a previous tolerated baseline).  In fact, it was this health enthusiast's ongoing attempts at more vigorous exercise that put me on the sofa for two long years!

PWCs live a conundrum... . OTOH, one needs some exercise every day to keep the body and spirit from atrophying, even if it's just one minute.  Regarding doctors (as shamans),  buyer beware.
Reply Reply

Response to "The 5 Year Cut-Off"
Posted by: Ship76
Apr 4, 2012
Dr. Paul Cheney told me a few years ago that, in his experience, there is a certain legitimacy to "The 5 Year Cut-Off"-- i.e., patients getting better within 5 years or, after that, likely not at all (at least not on their own). He stated his belief that each patient, genetically speaking, was playing poker. If you got dealt a few bad cards (such as CFIDS/ME), your body then "shuffled" through the remaining cards in your own personal genetic "deck" looking to make the best hand possible to respond to the challenges of the illness. He stated that if a patient had the ability to make a good hand by shuffling though his or her genetic "cards," it would generally happen at or before the 5 year mark. After that, it was likely that one's body could not come up with a strong enough hand to beat the illness on his or her own (in effect, without some sort of medical intervention). I would love to ask him about this now, in the wake of XMRV and HGRV's in general, since retro-viruses incorporate themselves into the DNA of the human host. Perhaps those of us who were lucky enough to get better on our own were the ones not infected with an HGRV. After all, how could a person make a better hand for themselves if each card in the deck is infected??
Reply Reply

 
Outdated Article with No Scientific Use
Posted by: MEpatient
Apr 4, 2012
I was very disappointed with this article. Particularly given the wide readership it is getting, it offers nothing of value for ME/CFIDS patients or research. This doctor cites no labs or data of any kind regarding the patient. From what is shown here he appears to take quite a liberty in terming this man his “patient,” as he appears not to have assigned any particular treatment to him at all. This account could just as well have been written by a neighbor or a co-worker, and could have taken place some 50 years ago, for its complete lack of science. It is no wonder this doctor states that there is no measurable definition of recovery, since in his world there is also no measure of illness used. I personally have very low Natural Killer cells, completely inverse cortisol levels, persistently low levels of vitamin D, potassium, magnesium, and sodium, Orthostatic Hypotension, sinus tachycardia, cognitive dysfunction, high titers of viruses such as Coxsackie B1-6 and HHV-6, and evidence of active Lyme and Parvo, a strong family history, and the list goes on. In addition to how I am feeling, there are many very clear ways to measure my medical progress. This is essentially an article about a man who felt bad, and then felt better. I was very excited to read it, but found that it has absolutely no value or relevance to the fight against any particular disease or organ dysfunction in the year 2012.
I too find it unlikely that the patient suddenly recovered toward the end of a full 3 years of vigilant nutrition, but no other explanation of interest is given in its place. As a patient, I find the arrogance of this doctor extremely offensive that he seems to take some level of credit for having encouraged the man to overcome his fear of relapse and thereby cured his poor standard of living. Truly the ignorance this doctor shows about the illness shows that he had no medical basis for his suggestion or knowledge of what it might have done to the patient internally, the entire article stems from pure conjecture on his part. It would have been more valuable to have heard the account from the patient himself. The assumption is that patients are too psychologically scarred (and dumb) to determine what they are capable of – likely as we all know from experience, the man would gradually have learned from his strength and stepped out, albeit much more slowly without prodding. But if anything we have certainly learned from this that a patient is the best expert on his body in a world full of unscientific guesses, and so perhaps his caution is safest.
If the man had actual M.E., he would have noticed the dramatic decrease in pain, dizziness, nausea, flu sensations, light sensitivity, sleep dysfunction, cognitive dysfunction, autonomic and cardiac dysfunction that are a constant when ill. This change would also be noted by those around him. He would gradually start to do more because all he ever wanted to do was be an active normal person in the first place, and the only thing that would be holding him back were the symptoms themselves – particularly in such a short bout with the disease as this when an active person does not have time to even become resigned to such a restrictive lifestyle (I have been ill for 3 years and I am still in the phase of overdoing and causing relapse, as are most patients I know who have been ill for even longer). Since this was not the case, I would guess that he did not have M.E. in the first place but perhaps a hormonal imbalance or organ dysfunction that somehow was resolved in that period of time. I would also guess that he had or developed Depression or another mental condition that was holding him back, since there is no physical reason given in this account for why he would not begin using his muscles again (although there is not a lot of detail here overall).
I do not relate to the idea that it is due to deconditioning. This is another guess, clearly from a person with no personal experience or great knowledge of the disease, because the feeling of pain or fatigue from building muscle is something that a normally active person would know and remember at only 4 years into the illness, and easily distinguish from the type of physical agony and bone-crushing depleted exhaustion associated with M.E., or its frequent counterparts. They do not feel anything like each other – which is how one knows one is sick in the first place and not just recovering from a workout or hectic lifestyle at the onset. There is a very obvious difference in the sensations in one’s body between dying, and living. M.E. feels like dying, because it is a breakdown in regular function of every system in the body. Building new muscle feels like living, and is hardly a reason for one not to get out of bed, to miss the growth of his family, and to miss an income and thereby access to steady healthcare. M.E. patients know that nothing short of total inability would keep one alive while forever missing out on one’s own life. This man likely had an unrelated ailment, or a residual mental condition afterwards to complicate this picture. Sadly, he had no adequate medical help to diagnose or resolve his condition, and this doctor in particular has no claim to his recovery. It concerns me that this doctor is advertising this story as a means to gain other M.E. patients, as he offers nothing here beyond the vague account of a bystander in the horrors of one man’s dis-ease. I am happy that the man recovered, but his illness and recovery sadly have taught us nothing.
Please do not forward this article to more M.E. patients, whose time is very limited and valuable. I personally do not have time for leisure reading, I am hard at work researching my own illness and cure to inform the medical community around me of this serious disease.

 


Outdated Article with No Scientific Use
Posted by: MEpatient
Apr 4, 2012
I was very disappointed with this article. Particularly given the wide readership it is getting, it offers nothing of value for ME/CFIDS patients or research. This doctor cites no labs or data of any kind regarding the patient. From what is shown here he appears to take quite a liberty in terming this man his “patient,” as he appears not to have assigned any particular treatment to him at all. This account could just as well have been written by a neighbor or a co-worker, and could have taken place some 50 years ago, for its complete lack of science. It is no wonder this doctor states that there is no measurable definition of recovery, since in his world there is also no measure of illness used. I personally have very low Natural Killer cells, completely inverse cortisol levels, persistently low levels of vitamin D, potassium, magnesium, and sodium, Orthostatic Hypotension, sinus tachycardia, cognitive dysfunction, high titers of viruses such as Coxsackie B1-6 and HHV-6, and evidence of active Lyme and Parvo, a strong family history, and the list goes on. In addition to how I am feeling, there are many very clear ways to measure my medical progress. This is essentially an article about a man who felt bad, and then felt better. I was very excited to read it, but found that it has absolutely no value or relevance to the fight against any particular disease or organ dysfunction in the year 2012.
I too find it unlikely that the patient suddenly recovered toward the end of a full 3 years of vigilant nutrition, but no other explanation of interest is given in its place. As a patient, I find the arrogance of this doctor extremely offensive that he seems to take some level of credit for having encouraged the man to overcome his fear of relapse and thereby cured his poor standard of living. Truly the ignorance this doctor shows about the illness shows that he had no medical basis for his suggestion or knowledge of what it might have done to the patient internally, the entire article stems from pure conjecture on his part. It would have been more valuable to have heard the account from the patient himself. The assumption is that patients are too psychologically scarred (and dumb) to determine what they are capable of – likely as we all know from experience, the man would gradually have learned from his strength and stepped out, albeit much more slowly without prodding. But if anything we have certainly learned from this that a patient is the best expert on his body in a world full of unscientific guesses, and so perhaps his caution is safest.
If the man had actual M.E., he would have noticed the dramatic decrease in pain, dizziness, nausea, flu sensations, light sensitivity, sleep dysfunction, cognitive dysfunction, autonomic and cardiac dysfunction that are a constant when ill. This change would also be noted by those around him. He would gradually start to do more because all he ever wanted to do was be an active normal person in the first place, and the only thing that would be holding him back were the symptoms themselves – particularly in such a short bout with the disease as this when an active person does not have time to even become resigned to such a restrictive lifestyle (I have been ill for 3 years and I am still in the phase of overdoing and causing relapse, as are most patients I know who have been ill for even longer). Since this was not the case, I would guess that he did not have M.E. in the first place but perhaps a hormonal imbalance or organ dysfunction that somehow was resolved in that period of time. I would also guess that he had or developed Depression or another mental condition that was holding him back, since there is no physical reason given in this account for why he would not begin using his muscles again (although there is not a lot of detail here overall).
I do not relate to the idea that it is due to deconditioning. This is another guess, clearly from a person with no personal experience or great knowledge of the disease, because the feeling of pain or fatigue from building muscle is something that a normally active person would know and remember at only 4 years into the illness, and easily distinguish from the type of physical agony and bone-crushing depleted exhaustion associated with M.E., or its frequent counterparts. They do not feel anything like each other – which is how one knows one is sick in the first place and not just recovering from a workout or hectic lifestyle at the onset. There is a very obvious difference in the sensations in one’s body between dying, and living. M.E. feels like dying, because it is a breakdown in regular function of every system in the body. Building new muscle feels like living, and is hardly a reason for one not to get out of bed, to miss the growth of his family, and to miss an income and thereby access to steady healthcare. M.E. patients know that nothing short of total inability would keep one alive while forever missing out on one’s own life. This man likely had an unrelated ailment, or a residual mental condition afterwards to complicate this picture. Sadly, he had no adequate medical help to diagnose or resolve his condition, and this doctor in particular has no claim to his recovery. It concerns me that this doctor is advertising this story as a means to gain other M.E. patients, as he offers nothing here beyond the vague account of a bystander in the horrors of one man’s dis-ease. I am happy that the man recovered, but his illness and recovery sadly have taught us nothing.
Please do not forward this article to more M.E. patients, whose time is very limited and valuable. I personally do not have time for leisure reading, I am hard at work researching my own illness and cure to inform the medical community around me of this serious disease.
[I posted this incorrectly before - my apologies for the duplicate comment, but I have M.E.]
Reply Reply

My Recovery Was Like This Too
Posted by: ex-cfs
Apr 6, 2012
This is a very important story, and should not be dismissed as previous comments have done. It seems the least research and guidance in CFS/ME and fibromyalgia research has been on recovery -- how do people who have recovered differ, and what is their recovery like? How long does it last? How back to "normal" are they? Without this information, we who have mostly or fully recovered have to fear and wonder.

I was very sick with diagnosed CFS (multiple times by many experts (MDs and alternative providers, under any definition, and many lab tests, over and over through a 2 year period, so I think this diagnosis is beyond question) and probably also had fibromyalgia (was better before heard of it, and later MD expert on fibro told me I probably had it). At its worst, I felt closer to death than life. I could barely stand only 5 minutes a day, every other day, to take a shower. I moved from my bed to a chair and back each day. I could only watch daytime TV and barely comprehend that -- and me with an Ivy League education. I played with my young children in a reclining chair, which seriously limits the options! I once had to wait 45 minutes in my doctor's parking lot to park because I could not walk farther to the door, let alone wait in all the lines to get a handicapped parking permit! So, I know the awful symptoms of CFS. I also thought I might be dying of cancer or AIDS and doctors were just missing something. So, I resonate with the fears of "The Prisoner".

I recovered through using the best of both worlds, all that traditional MDs could offer, including some innovative treatments, and MUCH that alternative medicine and lab tests could also offer. Yes, that also included a 4 drawer cabinet of supplements, and later when I was feeling much better, exercise. My chiropractor told me that swimming (my exercise of choice and I think a good one for CFS and fibro) might just chase the last counts of the 4 serious infectious illnesses I still had simultaneously, away for good. And darned if it didn't. Of course, I started at levels I formerly would have considered insultingly basic and easy. And I rested afterwards. I recovered.

But after "recovery", I was left with many questions and worries. So, like "the prisoner", I probably took it too easy just in case. Then, I also learned at other times, I had to take it easier. So, some guidance on how to manage recovery would be really helpful.

I do know that part of recovery, after overcoming any acute problems, is rebuilding reserves of many things in the body -- sleep, nutrients, hormones, neurotransmitters, etc. The body needs to be rebalanced, including the immune system and hormone systems, as well as nutritionally. To do this, the body needs the right ingredients -- hence the supplements, and/or medications. Stress reduction and less stimulation also is key to recovery. This rebalancing and rebuilding takes a while, but then one can feel better and better. Once I knew what to do, I felt better rebuilding and rebalancing in about 6 months. But that was after the infections were essentially gone.

The first problem was that I did not know what returning to "normal" meant. For over 20 years before I became ill, I was superwoman, as many who fall ill with CFS were pre-illness. I was sick for just over two years. What would be normal and not superwoman levels of feeling good at my new age? I was getting older in my early 40s. For about 4-5 years after recovery, I very slowly felt a little better all along. I mostly could do normal things, but could not push myself without ramifications. I was also afraid to push myself because one thing I would not risk was falling back into CFS again. But I still had nagging omnipresent symptoms, mostly dragging fatigue and brain fog that made it hard to really do anything hard mentally or physically. It was hard to focus on any kind of intense performance, and unfortunately that is what my former career choice required. As my kids grew, they also wanted more intensity in their lives and I could not always perticipate. I also got sick a lot, getting everything that went around, over and over again. Flu season was 2-3 times as bad for me as for others. For whatever reason (pushing too hard, sick) every now and then, I would have crashes where I would have to rest and regroup, making sure I was doing the things that allowed me to recover the last time, without fail. These crashes would last usually a few days to 3 weeks, but then I was fine again. My body slowly strengthened over time and symptoms became fewer, less severe, and less frequent over the years.

Then, suddenly, for no apparent reason, I woke up one day feeling really good and strong and have been fully functional ever since. Yes, if I overdo or get sick, I have downtimes to rest, more than the normal person. But overall, I do what I want. I am careful not to overdo. This has limited my career and life choices and ultimately led me to divorce to get out of a relationship that had seriously depleted me in every way for far too long. I think when I was sick I did not have the energy to free myself from this, but once recovered, I could see the disparate effects of illness and emotional trauma.

Personally, I think the recovery after 2-3 years may have to do with overcoming low-level chronic infection(s). But I have noticed a 10 year recovery period among many with CFS I have heard about. Others comment here about a 5 year recovery period. The body is constantly replacing cells and rebuilding the body, body part by body part at different rates. And our threshold to notice illness (I am told) is something like 80% ill before we notice, so if a body part rebuilt to push us back over the threshold in a healthy direction so we don't notice, the symptoms associated with that body part/organ/system might seem to suddenly disappear. This is consistent with how my recovery felt.

I do not think that those who remain ill have bad genes. One reason is how long it takes to manifest, and another is that there are many other possible explanations which are not permanent. Though there is research regarding epigenetics, junk genes, jumping genes, and "master switches" that I think has potential to explain the sudden onset of a multi-system illness like CFS, and also to explain recovery. This does lead to the hope that genes are not destiny and so maybe genetic influences could be influenced back with the right interventions.

I do think that CFS is both the result of and causes cumulative damage to multiple body systems and organs. It may be that in some cases the damage is too bad to reverse, and this accounts for the 20% who seem never to recover. Although, we are learning that the body rebuilds more than we knew, and stem cell therapies offer more hope for better rebuilding in the future, so I would never say never.

Anyway, today (10 years after recovery began, and at 51), I feel mostly normal. I still try not to overdo, and I'd dearly like to know if this caution is warranted, or if I would do better to, say, work out more. I do walk a lot, have an active normal schedule but without regular formal exercise. Still I have hiked, played tennis, and swum laps all without incident. I do feel like I could push more and gain more energy and strength in my body. Deconditioning and muscle atrophy over the last 12 years of illness and recovery, and due to they busyness of catching up for lost time, is an issue. I will be soon trying more regular exercise, and we'll see how that goes.

Another thing nobody talks about is how hard it is to catch up on things missed that you were unable to do when ill with CFS. If you miss two years time, that does not mean you can catch up in 2 years. You would have to do more than normal to catch up and if you are worried about overdoing, that is not practical. I am still catching up on some needed tasks and things that should have been done long ago, and it is 10 years since recovery. But I'm almost there.
Reply Reply

 
Study Recovery For Clues to Treatment
Posted by: ex-cfs
Apr 11, 2012
I wanted to make clearer what I meant when I said that more research needs to be done on those who have recovered from CFS. In order to see most clearly what CFS does, you need to look at the most sick to see what is wrong with them at the time. Those who are sick only a while and not as badly off may also be different than those who are sickest, so they need to be included in a different sick group. But in a perfect world, you would look at someone when they were healthy, then compare how they are when they were sick, and then see what they are like after they recover -- see the full evolution of the illness. In that way, you would see what changed to lead to CFS and what changed to lead to recovery. The contrasts are the most revealing, and so you need the most states related to CFS to see these changes.

But we do not really know what our state was before falling ill with CFS. We probably know the normal things doctors test for in yearly physicals and maybe a few other things if we have had other health problems before CFS. But as we know, most of these typical tests doctors use tell us nothing about CFS. They usually come up normal before and during CFS. So, we don't know what things someone ill with CFS had all along, that CFS may or may not have changed.

If we also look at people who recovered, we can see a "without" state in people who did have CFS. So, if there is a set of susceptibilities, these will in effect be controlled for by using a large number of ill and recovered people, and looking at the differences between them. In other words, these people were all vulnerable at some point, but some have recovered.

What differences? All the things that have been done in researching CFS that have been useful differentiators. I would look especially at:

o Genetics
o Epigenetics (including upregulation and downregulation of genes)
o Hormone status (especially cortisol, HPA axis sensitivity, morning cortisol levels, epinephrine response, testosterone, estrogen, progesterone, melatonin, and thyroid hormones)
o NO (nitric oxide production/status/dynamics)
o Neurotransmitter status and if possible receptor status and sensitivity (especially dopamine -- all forms, serotonin, and excitatory and relaxing neurotransmitters)
o Brain scans (PET, SPECT, MRI, and/or functional MRI)
o Key nutritional status (especially Ca vs Mg status, Zn, Al, Mg, heavy metals, B12, D, K, B5, SAMe, antioxidant levels, glutathione, and many other nutrients high or low in people with CFS)
o Systemic candida (by PCR)
o Immune balance and response/activity between Th1 and Th2 types of response
o Other things found to be significantly and constistently different, with a possible causal explanation, in those with active CFS

We've looked at healthy controls, people with CFS, and people with related and possibly overlapping illnesses. But we have not looked much or at all in those who have recovered from CFS for clues as to what might have changed to allow them to recover, or what dynamics might have changed during recovery. So, we may be overlooking some of the best clues.

I urge any bodies that fund CFS research to start a database of those who have mostly or fully recovered and to include this group in studies as well. It may be harder to find us as we tend to move on with our lives, and may not look as much at the CFS group websites. By talking about my experiences with CFS, I have met many, so by reaching out to those who have recovered, they can let others know too. Doctors and other health practioners who often treat CFS would also be good sources to find those who have recovered.

So, our voices are not heard as much as the voices of those still ill, and often most ill. My heart goes agonizingly out to those still living in the seemingly bottomless pit of CFS. It is for this group, and all with CFS, that I urge looking more at recovery. CFS does not have to be hopeless. Most who learn what to do to find solutions beyond the normal MD suggestions do recover (something like 70% to 80% in the best programs). We need to figure out how to help the rest!

 



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