There are many diseases that are classified as autoimmune diseases. Many of these diseases share symptoms. Gretchen over at autoimmunemom.com sent us this infographic that displays what she calls 12 “super symptoms.”
There are many diseases that are classified as autoimmune diseases. Many of these diseases share symptoms. Gretchen over at autoimmunemom.com sent us this infographic that displays what she calls 12 “super symptoms.”
The following is information and news published by Kim McCleary, the President of the CFIDS Association of America on the International Consensus Criteria Published for Myalgic Encephalomyelitis. Excerpts and the link you will find below:
On July 20, 2011, the Journal of Internal Medicine e-published ahead of print “Myalgic Encephalomyelitis: International Consensus Criteria.” The panel of authors, led by coeditors Bruce M. Carruthers, MD, CM, FRCP(C) and Marjorie I. van de Sande, BEd, GradDip Ed, includes 26 authors from Australia (3 authors), Belgium (1), Canada (4), Chile (1), Ireland (1), Italy (1), Japan (1), Korea (1), Latvia (1), New Zealand (1), Norway (1), the United Kingdom (2) and the United States (8). The paper specifically cites 123 publications to support its recommendations.
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.
New Criteria Overview
ME is described as “an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.”
Of particular note is that other definitions have established a minimum duration of illness (either four or six months). The new ME definition removes this requirement: “…diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.” One of the questions arising from the new definition is whether individuals with a more transient illness will be considered to have ME.
Diagnosis begins with assessment of post-exertional neuroimmune exhaustion (PENE), rather than fatigue. “Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”
In addition to the required feature of PENE, the individual must have seven other symptoms: three that demonstrate neurological impairment; three that demonstrate immune impairment; and one that demonstrates energy production/transport impairment. These are described more fully below. The term “atypical ME” is used when an individual “meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.”
The paper provides severity subgroups: “Symptom severity impact must result in a 50 percent or greater reduction of a patient’s premorbid activity level for a diagnosis of ME. Mild: approximately 50 percent reduction in activity; Moderate: mostly housebound; severe: mostly bedbound; and Very Severe: bedbound and dependent on help for physical functions.”
Special considerations are noted for making the diagnosis in the pediatric setting, including guidelines about distinguishing ME from school phobia.
The following co-occurring conditions are identified: “Fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, prolapsed mitral valve, migraines, allergies, multiple chemical sensitivities, Hashimoto’s thyroiditis, Sicca syndrome, reactive depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.” From reading the text, it does not appear that this list is intended to represent the only comorbid conditions that should be considered. For instance, specific forms of orthostatic intolerance (postural orthostatic tachycardia syndrome and neurally mediated hypotension) are referenced in the description of energy production and transport impairments.
As stated earlier, the central feature of ME under this definition is post-exertional neuroimmune exhaustion (PENE). To meet the criteria, an individual must have PENE, described in the following manner: “This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.”
The individual must demonstrate neurological impairment by meeting a total of at least three symptoms from three of these four categories:
1. Neurocognitive impairment
a. Difficulty processing information: slowed thought, impaired concentration
b. Short-term memory loss
b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates.
3. Sleep disturbance
4. Neurosensory, perceptual and motor disurbances
a. Neurosensory and perceptual
The individual must demonstrate immunological impairment by meeting a total of at least three symptoms from three of these five categories:
1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastointestinal tract
5. Sensitivities to food, medications, odours or chemicals
The individual must have one of the following symptoms that demonstrate energy production/transport impairment:
3. Loss of thermostatic stability
4. Intolerance of extremes of temperature
Further descriptions of each of these symptom clusters are provided in Table 1 that accompanies the text. (Table 1 has been reproduced by the CFIDS Association of America under limited license from John Wiley & Sons, Inc., publisher of the Journal of Internal Medicine. Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.)
The authors also provide additional directives for applying these symptom lists in clinical settings vs. research settings. The panel is at work on Physicians Guidelines and an International Consensus Symptom Scale. They specifically state that only subjects who fully meet ME criteria should be included in epidemiological research.
To read the rest of the information, click the link below.
I know that my posts have been getting fewer and farther between on this website and I think part of that is due to the fact that I am getting to the point where I am finding some healing, some closure, some help through all of the pain, depression and worthlessness I have felt surrounding my health and my life.
We all have baggage and crap from our lives that we carry into our adulthood and that we can blame on for why we are the way we are, but sometimes traumatic things happen that we try to deny and push back and pretend that they don’t matter when in reality, all of those years we are pretending they don’t matter they are just eating and festering away at our insides.
For years I denied to myself, and even to therapists, that I had never had any type of sexual abuse as a child when in actuality, I did when I was 10 years old by a family member. I never told anyone until about a year ago and in someways I feel that coming out with the truth has helped me personally to heal, but in other ways it has been worse for my family as a whole. But I know that I didn’t do anything wrong and regardless of how long ago it was, I don’t have to pretend anymore, I don’t have to act like I can be around this person without having panic attacks and having to take extra medication. I just got tired of pretending like everything was okay when it wasn’t and I couldn’t put others in jeopardy either.
Now before anyone has a coronary or takes what I’m about to say out of context, I DO FULLY BELIEVE THAT CFS & FIBROMYALGIA ARE PHYSICAL AND REAL DISEASES. But I feel that in my situation that the trauma from the abuse, the denial of the abuse for 30 years, and everything I did to try and not deal with the feelings of having to deal with the abuse (becoming a workaholic and all of the other coping mechanisms I used) have further deteriorated my health. I also feel that my emotional problems, the Major Depressive Disorder, I was recently diagnosed with was the culmination of everything coming crashing down and all of the emotions and everything I denied for so many years hitting me like a ton of bricks all at once.
Trying to deny all of those feelings and to push them aside for 30 years could not have been good for me physically and we all know it’s not good mentally either. It’s like a dam that finally bursts; the light that finally comes on.
The old saying that “everything happens for a reason” really seems to ring true for me. When my health totally deteriorated back in 2003 and I had to go on disability and quit working at that time for a long time, I thought my life was over. But now I am seeing that maybe that is what I needed because once I stopped pushing myself beyond exhaustion, once my body completely gave out and wouldn’t allow me to do anything, I couldn’t run away from my feelings anymore. I had to start dealing with things that I hadn’t dealt with in years. I had to start dealing with feelings, emotions, abuse and the results of all of those things because I could no longer escape in work. My body was too sick to work and I couldn’t run away from them anymore. My escape mechanism was gone.
So the healing began – slowly but surely – and it has been a long, slow process but I am getting there and I feel that my health has slowly but surely been improving. I have hiccups along the way, setbacks with my health and flares, but they seem to be coming further apart, I am looking and feeling better all of the time, and I think with the proper counseling now with revealing the truth, I can become whole.
CFS & Fibromyalgia will always be a part of my life – I have accepted that and I will continue to strive for balance and harmony so I don’t flare as often. But I think that by dealing with all of the emotional garbage from my life – finally dealing with the abuse and past – I can at least heal mentally and physically it will be beneficial.
The death of Caylee Anthony in 2008 has tugged on the heartstrings of many Americans. Now that her mother, Casey Anthony, is on trial for the muder, we find ourselves unable to pull ourselves away from the case. I’ve been watching the trial when time permits & I’ve spent much of it in disbelief as to how a mother could behave in such a manner. As a mother myself, I keep wondering how could she go 31 days (or go even ONE day) without reporting her daughter missing? How could she live it up during that time knowing her daughter was gone? Worse yet – how could she behave like that and be her own daughter’s alleged murder?
The problem with this whole trial is that all of the evidence is circumstantial. There is nothing that definitively links Casey Anthony as the murderer. There’s a lot of evidence that sure points in that direction & common sense tells us that she is guilty. But I would not want to be on that jury. Their job is to decide whether she is guilty beyond a reasonable doubt; and without actual, hard core, written-in-stone evidence that she committed the crime, will they have to acquit her of the charges?
When I’m watching the trial, I can’t help but think about what if ME/CFS & Fibromyalgia were on trial. Would they get their fair day in court? If a jury had to decide whether CFS & Fibromyalgia were legitimate illnesses or not, I think there would be reasonable doubt in the minds of the jurors. I know those illnesses exist; as fellow sufferers you know they exist as well. But you can’t see either illness under a microscope. There isn’t a blood test yet to say that X = CFS or Fibromyalgia. I think a jury would need that proof in order to say yes – they are real. Or could it go the other way? If enough of us patients testified to the same symptoms, problems, coping skills, loss of life, etc., would that be enough? In the Casey Anthony trial I keep hearing testimony after testimony that the smell in the trunk was human decompisition. If enough people give the same testimony, that becomes extremely powerful in the minds of the jury I would think.
Thank God this is just a scenario I’m running through my mind while watching the real trial but I do feel like I am on trial a lot of days. I’ve felt many times like I have to answer, explain & respond to assanine questions regarding my health. There are those who try to be judge and jury when they know nothing about what I deal with everyday.
I’ve talked about this subject before but it is something that comes up so often in conversations, I think it’s worth writing about again. One of the big phenomenons surrounding ME/CFS & Fibromyalgia is the fact that we can look so healthy – so normal – but yet be so disabled and feel so crappy. Our looks don’t fit with how we truly feel. I think too if you have an upbeat personality, as I tend to have most of the time, it makes it even harder for people to realize and comprehend the severity of how sick I truly am.
I went in today around 3 p.m. to pick up a prescription and I told the pharmacist where I work that it’s a hot day outside but I was in bed all day so I didn’t realize how warm it truly was outside. I wasn’t complaining or anything – I was just stating a fact. I was up most of the night due to the sleeping problems I have from ME/CFS so it was after 5 a.m. and I finally gave in and took sleeping meds so I could get some sleep. The pharmacist told me that if it wasn’t for the fact that he was my pharmacist and saw my medications, and knew the things about my health that I have shared, he would never guess to look at me that I am as sick as I am. He told me today that I look so healthy and so happy.
It does feel good to hear that because I don’t want to walk around looking sick because when I do look sick, it draws attention to me that I really don’t like. Over the past year I’ve lost weight, I am now tan, and that makes me look even healthier so I look like the perfect picture of a healthy person. But I’m not. My body’s not no matter how hard I try.
When I am having the really bad days, people can tell I am sick – especially those who know me – and my eyes will give it away. My eyes tend to get very small and squinty and puffy and my voice will change. My husband just told me today that when I am having a bad spell for a while he will call my cell phone answering machine just to listen to my voice because he misses the perkiness in it when I’m sick. Isn’t that sad? It’s like a slow death for family. My son will also notice immediately when I’m not well just by my voice.
People often think that we are complaining when we say others say we look good when we are feeling bad. We’re not complaining – we just know that people have a hard time believing that in our illnesses anyway, then when you take the looks into consideration, it’s like a double whammy against us.
What is the one thing we hear as soon as someone finds out we are sick with ME/CFS and/or Fibromyalgia? “You don’t look sick”. When someone says that it is as if they are totally disregarding and disbelieving the fact that you are truly ill. Everything in life is not in black and white and these illnesses are definitely not easy to define.
After the pharmacist told me how healthy I looked, he said that my positive attitude probably helps me some and that I am to keep smiling! It did feel nice to get the compliment. What woman doesn’t want to be told she looks good?
Now that we have been having a heat wave here over the past few days, I have started getting in the mood for the summer. I always look forward to the spring and early summer season because I tend to feel better during this time. I have less pain and I don’t feel as fatigued as I do during the fall and winter months. I do, however, tend to notice that when the summer temperatures reach their all-time highs and the humidity starts to rise my symptoms will flare and I will feel miserable and want to only be in where there is central air.
Allergies tend to also be a problem this time of year for many CFS & Fibromyalgia patients but for some reason, this year I am not having any allergy problems. I’m rather surprised because in our area, most people who have allergies, my son included, are having an even harder time than other years and I’m not having any trouble at all. Go figure. My body is always the odd ball!
When the humidity rises, swelling is a common problem among CFS & Fibro patients and this causes our pain to increase. My feet and legs will swell up like crazy when it is really humid and my feet and legs look like they did when I was 9-months pregnant. I keep myself hydrated and keep my feet elevated during these times to help rid my body of the excess fluids.
Vacations are always a big part of the summer for a lot of families but those of us suffering with chronic illness realize how taxing a vacation can be on our bodies. Most people would think that a vacation would be relaxing and fun, which they are fun, but because we are having fun, we will tend to forget that we are sick and if we are able, we tend to overdo it and will find ourselves in a flare by the time we return or during our vacation. I think proper planning and making sure you are well organized and don’t wait until the last minute to do everything you need to do to prepare for your vacation before you leave is super important in keeping your flare to a minimum.
If you have young children like I do and find that the summer months are hard to get through because your kids want you to be busy all of the time and you physically can’t, sit them down for a little chat. I have to have a little “reminder” talk with my son every summer and the past couple of years I have started talking to him about his expectations at the beginning of summer vacation. I explain to him that while I will do my best to make sure he has a fun, active and enjoyable summer, there is only so much physically that I can do and I cannot be constantly entertaining him; we can’t be running around all of the time; and that he will have to be patient on my bad days and that plans can change at the last minute.
If you are having severe pain flare-ups, go get in a pool and cool off and walk around. The water feels great and it will help with the pain. I do this all of the time in the summer. Also, when it’s hot, I don’t seem to mind the heat when I’m in the water and I can get some exercise outside while moving around the pool. It is great for the legs and keeps the circulation going, especially when it is humid.
Just remember that the summer months are a time that many of us do see an improvement in our symptoms so it is easy to overdo it and to cause setbacks. Try to pace yourself (and I’m talking to myself here, too!) and enjoy your summer, family and life!
ME/CFS & Fibromyalgia are so unpredictable – just when I think I have a healthy balance figured out for my life – WHAM! – I’m hit with yet another flare and find that nope – I was wrong – I guess I can’t do that. I get to where I start to feel comfortable, start to slightly feel like a routine is somewhere in sight and CFS & Fibromyalgia will remind me once more that they are the bosses in my life and that they rule.
I have always said the only thing predictable about ME/CFS & Fibromyalgia is the fact that they are so unpredictable. It has been such a long, hard struggle trying to find a balance in life that I can cope with and that my family can cope with. I think some of the struggle to find a healthy balance comes with the fact that my work schedule is never the same and that it changes from week to week. My husband and son are also not huge fans of my work schedule much of the time and sometimes the hours I work will cause some extra stress for me because they don’t like the hours I’m scheduled. As we all know, stress of any kind, even a tiny bit of extra stress, is really harmful for ME/CFS & Fibro patients. It makes our bodies go on overdrive and can send us into flares like crazy.
I have worked really hard and have strived really hard over the past 20-plus years to try and get to where I can find a healthy balance with living with these illnesses but I always feel like I’m failing and like I’m fighting a losing battle. I know that there has to be a way to do it, there are people out there who are doing it, but I just can’t seem to get it down. I’m trying to work, take care of my family, take care of my own health, take care of my home and it all gets overwhelming for me and I end up not being able to accomplish much at all. My husband says I do a lot considering how sick I am but to me, I feel like I don’t get anything done. When things start piling up that need done, I really feel how off-balanced life is because of being sick so much of the time.
Life is short, I realize this, and I need to enjoy what I can do when I am able to do it -and I do. I guess the Type A in me will always just want to do more!
When I read Arnie’s story that you can read in full at the link I’ve provided below on ProHealth.com, I was astonished once again at how the medical community has turned its back on CFS patients and this story is particularly sad. ME/CFS takes so much from people’s lives and in Arnie’s case it not only took his health but it also took away the safe refuge of his home life…and all because his doctor didn’t believe ME/CFS was real. Here are some excerpts from the story…
Every year, parents in this country and abroad face court hearings before judges and juries in which they are subsequently found guilty or innocent of intentionally harming their child due to Munchausen’s syndrome by proxy.
Depending on the circumstances, the prosecutor, representing the state, may add fraud to the charges. Usually, the mother’s psychological competence becomes an issue of enormous significance in such a trial. If a child has been judged to have Munchausen’s syndrome by proxy by a psychiatrist serving as the state’s expert witness, the mother may face the removal of her child from her household, usually into foster care, as well as criminal charges.
The notion of a mother deliberately hurting her child is difficult for most of us to comprehend. Nevertheless, for some years now, Munchausen’s syndrome by proxy has been accepted by the medical profession as bona fide, if somewhat baffling. And there is no question that it occurs. Hidden videotapes in hospital rooms show parents either injuring their children, or doing things that make it appear that a child is ill. What a world….
But, because this does occur, physicians have grown suspicious, particularly when confused by symptoms in the patient they treat.
With this in mind, imagine what might happen when a mother whose child suffers from an extremely complex, misunderstood – even overlooked – chronic disease, becomes an outspoken advocate for that child, struggling to explain her son’s illness to unsympathetic doctors and suspicious school officials.
Imagine the situation from the perspective of the sick child, who can barely articulate to his friends, much less to an attorney or a psychiatrist, what ails him. Imagine how, over time, these quiet struggles can escalate, thrusting mother and child into a firestorm of accusations by authorities of all stripes, as they attempt to salvage their dignity and even their right to remain a family.
A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie.
Arnie was 10 years old when he first experienced the onset of ME/CFS but he had been sick most of his life with endless sore throats, headaches, allergies, stomach problems and colds. But, like with most of us with CFS, the doctors weren’t able to connect the dots with all of these symptoms over the years and his symptoms continued to escalate. Instead of being taken seriously, his symptoms were attributed to an “over-anxious” parent who was worried about trivial illness.
Arnie’s symptoms continued to escalate to where his exhaustion left him unable to attend school and he was confined to bed. His mother continued to press on to try to find an answer for her son’s illness but the doctor was unable to explain Arnie’s incapacitating fatigue.
Months passed, a period during which Arnie failed to receive either a diagnosis, or an education. By law, school systems are required to provide home tutoring to students who are too sick to come to school, but school systems also require that the child carry a diagnosis before they hire a private tutor using state dollars. Arnie had no diagnosis.
The school year ended, and another began.
Arnie was still house-bound because of the exhaustion. In every respect, he was absolutely typical of a child with CFS.
• He suffered from sore throats, headaches, sensitivity to light and blurred vision, pain in his muscles, joints, and lymph nodes.
• His ability to learn was diminished because of difficulties with memory and attention.
• He could not remember what he had read.
• His attempts to exert himself physically uniformly resulted in relapse, or worsening of his fatigue.
Eventually, doctors ruled out thyroid disease, lupus, multiple sclerosis, rheumatoid arthritis, HIV disease and hepatitis.
Some of these doctors did find immune abnormalities that suggested that Arnie was suffering from an on-going viral infection.
But the doctors believed that the abnormalities failed to fit a pattern associated with any particular disease � at least, any disease with which they happened to be familiar.
• Neurological tests revealed that Arnie suffered from vertigo and lacked the kind of fine motor control in his hands that might be expected of a boy his age.
• Other tests of intellectual capability demonstrated that Arnie’s short term memory and concentration skills were impaired.
All in all, everything about Arnie – his long history of illness, his physical exam, his laboratory tests – were typical of CFS, a disease his doctor did not believe existed.
Then Arnie’s father started believing that his son was not ill as well and was tired of paying for all of the medical exams and tests that came up with no answers. His wife, however, continued to seek out treatments and help wherever she could find it: naturopaths, ecologists, acupuncturists, etc. Each of these types of specialists believed there was something wrong with Arnie but they all had different theories as to what the diagnosis may be.
Now Arnie found himself in the middle of a battle between his parents. Arnie felt guilty for the problems between his parents and he would try hard to feel better in order to keep peace between his parents but we all know how CFS wins – it’s a disease we can’t fight. Arnie’s parents split up and he blamed himself for it.
When his illness continued, in spite of his best efforts, he became withdrawn. And when Arnie’s father moved out of the house, Arnie assumed he had caused the break up.
A child sees the world from a simplistic, egocentric point of view. By the age of ten, children are better able to assess the relationship between cause and effect than they were at five, but the tendency to believe in a magical connection between one’s own actions and unrelated events has yet to vanish entirely at Arnie’s age.
Arnie’s parents made a mistake, too. They were unable to separate their private conflicts from their son’s illness, leaving him caught in the crossfire. What followed was probably inevitable: a kind of chain reaction in which a sick child became a battleground, fought over not only by his parents, but by the local school system, and, eventually, the state of New York.
As far as Arnie’s pediatrician and his teachers were concerned, the issues were clear.
Arnie seemed to be incapacitated with a slew of mysterious symptoms, just as his parents were in the process of divorce. These authorities believed Arnie was suffering a kind of psychiatric meltdown because of his parents’ acrimony.
According to the law of the land, if parents are causing a child’s illness – whether psychiatric or medical – then the parents are guilty of child abuse. In such cases, the law decrees that the appropriate social institutions intervene on behalf of the child, even removing the child from the destructive environment if necessary. In Arnie’s case, the vultures were beginning to swarm.
The principal of his school made several visits to the boy’s house during the first year he was absent, acutely aware that neither his parents nor his doctors had been able to offer the school a diagnosis. Each time she visited, Arnie was in the living room, seated, and watching television. He did not look sick to her.
The principal assigned a truant officer to the case.
The officer saw Arnie in his back yard one spring day, resting in a lawn chair, sipping lemonade. Finally, the school filed a truancy petition with the local court in order to force Arnie to return to classes. In addition, the local social services department launched an investigation of Arnie’s parents to determine if they were guilty of child abuse.
At the court hearing on the matter of truancy, the judge listened to the attorney representing the school argue that Arnie had been absent without good cause.
Arnie’s mother, representing herself, told the judge about her son’s medical condition. She called it chronic fatigue syndrome. She also described the holistic-style therapy of vitamins and herbs and acupuncture she had embarked upon to cure her son.
In turn, the impassive judge inquired about the impending divorce, as well as the custody hearing. Arnie’s parents had begun arguing about which one of them would raise their son after the divorce.
Not surprisingly, the judge, who knew of CFS only as the rather flaky sounding “yuppie flu,” concluded the hearing by ordering a psychiatric evaluation of Arnie. He also ordered Arnie to return to school.
The next day, two things happened, both of which ended in disaster: Arnie went to school, and his mother hired an expensive attorney.
Arnie’s physical illness had now become, in the eyes of the law, a psychiatric problem because of the pending divorce. School was a nightmare: the kids believed he was “faking it” and his gym teacher forced him to exercise, as she thought it would do him good. On the third day, he was too weak to get out of bed.
In the meantime, the lawyer hired by his mother had obtained Arnie’s medical records and had read them closely, paying special attention to the variety of opinions from specialists suggesting Arnie’s problem was psychosomatic.
The attorney made a unilateral decision: Assuming the doctors were correct that family turmoil had caused Arnie’s psychiatric problem, she decided to put her energy into helping Arnie’s parents obtain their divorce.
At the court-ordered psychiatric evaluation, the doctor began by interviewing Arnie and his mother together. Arnie was dizzy, exhausted, and found it difficult to concentrate on the psychiatrist’s questions. His mother recognized her son’s distress, and consequently did most of the talking in order to help conserve his limited energy. Afterward, the psychiatrist asked to talk to Arnie without his mother present.
The exhausted child was slumped in his chair. It was flagrantly apparent to Arnie that the psychiatrist had believed very little his mother said, and, after her departure from the room, he became even more withdrawn, even hostile. He responded to the doctor’s queries in monosyllables. Finally, the psychiatrist talked to Arnie’s mother privately.
The woman tried to “explain” chronic fatigue syndrome to the psychiatrist, who eyed her warily.
Struggling to suppress her own feelings of despair, she spoke as enthusiastically as possible about the alternative medical treatments she was continuing to explore. She wanted the doctor to know just how hard she was trying to help her son get well. The psychiatrist concluded the interview eventually, leaving Arnie’s mother feeling uneasy.
Afterward, the doctor called her husband, who took the opportunity to tell the psychiatrist that his boy was fine. His wife was the sick one, he added.
A week later, the psychiatrist submitted his report to the court. At the end of a lengthy discussion, he unveiled his diagnosis: Munchausen’s syndrome by proxy.
Arnie ‘looked well’, the doctor had argued in his report.
Arnie was removed from his mother’s care and was placed in a foster home because the psychiatrist said that Arnie’s problems were due to depression and the divorce and that his mother seemed enthusiastic and cheerful when speaking about his illness. The psychiatrist said teh mother had “created an environment of oppressive neediness that had driven Arnie to feign illness, and her subsequent over-involvement with her child’s illness stemmed from this deviant desire to be needed.”
Arnie was again told to return to school and his final custody determination would be made at the custody hearing. Arnie was also ordered to receive psychiatric counseling twice a week. The judge did allow Arnie to be excused from gym class. A week later, Arnie swallowed a handful of aspirin and sleeping pills and he was admitted to a psychiatric hospital immediately afterward. This naturally fed right into the court’s belief that Arnie had a psychiatric illness and not a physical illness.
Arnie’s incarceration and resulting isolation would have been considerably less had he robbed the corner grocery store.
• The psychiatric hospital administrators forbade his mother to visit him; after all, she had fostered the imaginary illness in her son, then encouraged his belief in it.
• Hospital doctors ordered him to submit to counseling sessions, sessions during which he found it hard to avoid confessing his depression. Such confessions only served to strengthen the prevailing view that his bizarre “illness” was psychiatric in origin.
• Arnie was given large daily doses of tricyclic antidepressant medications, a class of drugs that often increase fatigue in CFS sufferers. When Arnie complained that the drugs made him feel worse, staff at the hospital simply ignored the complaints.
• They further demanded that he participate in all the ward activities. Arnie followed the path of least resistance, dragging himself from project to project without comment, but he felt as if he was dying a slow death.
In short, Arnie was snared in a trap worthy of Franz Kafka’s imagination.
He would remain incarcerated and drugged until he was successfully rehabilitated, which chiefly meant renouncing his absurd belief that he was sick.
Where is Arnie today? Arnie is now 19 years old and he remains disabled by ME/CFS. His incarceration in the psychiatric institution lasted six months, after which he lived in foster care for another several years. He has reunited with his mother, and is at last receiving basic symptomatic care for his illness.
As Dr. Bell notes his article, Arnie’s story is unfortunately not uncommon. He says that more and more children with ME/CFS are being diagnosed with Munchausen’s syndrome by proxy because of the increase in cases of ME/CFS in children. The courts are remanding these children to foster homes and it the children are being doubly punished for being sick.
Arnie’s attempted suicide attempt, under such conditions, is hardly uncommon, either. Too often, children with CFS who have been taken from their homes, told they are imagining their illness, and sent to live in strange homes with adults who refuse to acknowledge their symptoms and disability, find death to be a better option.
Like Arnie, these sick children frequently end up in psychiatric institutions, deprived of the comfort of the parent, or parents, who may be the only people who understand they are ill.
Failure to diagnose an illness is, in some circumstances, malpractice. Failure to properly diagnose Arnie resulted in a forced separation from his mother – his only advocate – and his subsequent suicide attempt and incarceration. For Arnie, failure to diagnose had serious consequences.
The existence of CFS has been confirmed by the National Institutes of Health and the Centers for Disease Control. There continues to be legitimate debate as to what causes the illness, but to deny its existence because of a collective failure to understand its cause is inexcusable.
The American Academy of Pediatrics has stated that at least one part of its mission is to act as advocates for children. On the contentious matter of CFS, which afflicts thousands of children and adolescents, however, the Academy has remained silent. I believe the Academy’s silence is equivalent to child abuse. Our court systems have an obligation to protect the young and the helpless. Our courts, however, take their advice from the medical profession.
There are many forms of child abuse: neglect, physical abuse, sexual abuse… I would like to suggest that the term “medical abuse” be used when children are directly hurt by apathy or ignorance of health care providers.
When we get sick with CFS & Fibromyalgia, we don’t realize at first how every area of our lives will be affected, including our relationships with others. No one offers us a “how-to” course or “survivor’s guide” tips on dealing with such traumatic changes. We’re just thrown into a situation, completely foreign territory, and learning to navigate through trial and error. Along the way we lose relationships of all kinds: spouses, family and friends, who can’t handle the illnesses.
Those who vowed to stand by us through sickness and in health didn’t believe we were sick. Our own flesh and blood has told us we’re lazy, not trying hard enough and need to get a life. Then the friends you thought would stand by you after you weren’t able to go out and party anymore quit on us.
Change is hard for people to accept and illnesses as complex as CFS & Fibromyalgia are just too overwhelming for people to deal with. But we still have to deal with them and we don’t deserve to lose our health plus many of our relationships to boot.
I think my most traumatic relationship loss after I became sick was the one with my ex-husband. Now I see it as a blessing but at the time I was terribly hurt. I was very sick, scared, and needed my husband and he didn’t believe me. He would repeatedly accuse me of “faking” the CFS & my back problems and had no sympathy or empathy at all. It destroyed our relationship. How can you say you love someone and not have an ounce of empathy during the hard times? That is not love. It’s the same with friendship. Your true friends are the ones who are willing to stand by you even when the party has ended and times get tough. But a lot of people don’t want to be bothered. We’re sick so we’re pre-judged as “drags”, “lazy” and “no fun”. We’re not worth the effort in the eyes of many people out there and it’s sad the world is like that. It’s even sadder yet when it’s the ones closest to us who feel that way.
So how do we survive all of these losses? First, we have to get through the loss of our health, then we have to deal with losing many of the relationships around us. At first, we are hurt, angry and scared of being alone. Many of us were used to full, active lives before becoming ill and weren’t used to spending too much time alone. All of a sudden, we have no one surrounding us. Then I went through a period where I was angry and just didn’t trust anyone at all. Next, I went through a phase where I tried really hard to make friends but was finding that no matter how much people “liked” me, I never fit in. I still never fit in because my life is not anything close to normal and apparently it’s pretty obvious and I always feel like an outsider.
Now I feel like I’ve built up a wall and while I still want to make friends, I am very guarded and I don’t let myself get too close to anyone. This has become my survival mode I guess to protect myself from getting hurt anymore.
In order for relationships to survive CFS & Fibromyalgia, communication is so crucial but it is one of the most difficult things to do. How do you explain illnesses that can’t really be explained? When we do try and communicate, people will take our reasons for why we are physically unable to do things as excuses and that we don’t want to try.
My husband and I have a great relationship most of the time and even our relationship is tested, especially the last several months, because of CFS & Fibromyalgia. Years and years of sickness is hard to accept and when there is no cure, fear makes our spouses react in ways they normally wouldn’t. But we keep talking through it and we work through it and he knows that I’m really sick. The fact that he believes me after what I went through before with my ex-husband means a lot.
Individual therapy, couple counseling and family counseling are also helpful in dealing with feelings and emotions when your illnesses get overwhelming. What I liked about therapy when I went was being able to talk to someone who is objective and isn’t emotionally involved with me or my family. I have felt at therapy it is a lot easier to be completely honest and to get out my true feelings because I’m not worrying about if what I’m saying is going to upset the other person, as I would be if I were venting to a friend or family member.
Please comment and let me know how your relationships have been affected by CFS & Fibromyalgia.
This post is continued from the other day, so if you missed Part 1, make sure you read the beginning of the story to catch up!
Up until the birth of my son, my CFS had not affected my weight and I had not noticed any problems during those years with my weight due to the CFS. After the birth of my son, and after my six-week check up, I was hoping to get my figure back and to lose all of the extra pounds I had gained but this is when the CFS decided to take over every aspect of my body and hormones.
After I had my son, I was working full-time and also working extremely hard building a direct sales business and I was burning the candle at both ends. I had really pushed things too far – I was a new mom, I was working full-time, and I was trying to build another career so that I could quit my full-time job – all at the same time. Everything from that time period in my life when I look back now is nothing but a big blur, as I don’t remember much of it because I was just going full speed ahead, ignoring all of the signals my body was giving me.
I had been trying to lose the excess baby weight and I was dieting but I was noticing that my clothes kept getting tighter and tighter – my face kept looking fuller and fuller. I was sweating profusely and was having other hormonal issues and knew I needed to see the doctor. When I went into see my doctor for an appointment, I had gained back most of the weight I had lost after I had my son – and I was dieting. I told the doctor I knew that something was wrong besides the CFS – please run some blood tests. Blood tests were run and I was scheduled for a follow-up appointment the following two weeks. When I went back for my follow-up appointment two weeks later, I HAD GAINED 10 POUNDS! I WAS DEVESTATED! Something was really wrong – I was watching everything I was eating and there is no reason why I should be gaining weight like this. I found out then that I had hypothyroidism, which is common in CFS patients. Once I got my thyroid under control, I started losing some weight – a little of it – slowly. At least I quit gaining and I was grateful for that.
My next diet plan I tried to lose this excess weight was LA Weight Loss. I won’t even tell you how much money I spent on that whole mess but it was VERY expensive – the program, the bars, etc. When I started LA Weight Loss, I weighed in at 230 pounds – now my highest weight ever in my life. I started losing weight on their program but after a short while, my body got used to the diet and I quit losing weight. I have found that with CFS, our bodies are very stubborn and because our hormone levels are always all over the place, the dieting process is brutal for us. I would follow the program religiously, journal my food, do everything just so – but the weight stopped coming off. I tried talking to the manager at the center and she would tell me that I was doing something wrong. I couldn’t get her to understand that with the medical issues I have, my body had just quit responding. I was soon to find out that this was going to be a continued problem with every other program I tried.
I completely lost faith in the program and company when the manager told me that my illness was basically in my head and that once I lost the weight I wouldn’t be sick anymore. I told her I became sick with CFS when I was thin so I didn’t see how becoming thin again would change things. I quit the program when my weight was still 217 lbs.
After this, I started going to the Fibromyalgia and Fatigue Centers in Philadelphia, PA and they were working hard to get my thyroid, cortisol levels and other hormones even further under control. Through the blood testing they did, they discovered that I had a lot of severe hormone deficiency probems from the CFS and the doctor said all of this was definitely responsible for my body becoming resistant to weight loss. Throughout the next couple of years I struggled on my own continuously trying to lose weight but did not have any success. I would try to watch what I ate, watch my portion sizes, make better food choices, but I could not lose any weight. I was slowly starting to gain weight again.
Then I would have spells where I would barely eat at all because of how sick I had become from the CFS, Fibromyalgia and IC Disease. By this point, I had been disabled and unemployed for quite a while and I was also depressed because I missed life. I missed working, I missed being out and around people. I next decided to try another diet program and this one was NutriSystem. I only lost about 15 pounds on NutriSystem and then my body refused to budge anymore. After about 8 months on this program, I couldn’t see spending the money anymore and I quit that one also. I was starting to think I was not meant to get this weight off. I was really discouraged. It’s one thing to be on a diet and to cheat all of the time and to not lose weight. But when you are religiously following a program, and still not seeing results, it is even more discouraging.
The next diet was Alli and that was another crash and burn. Again – I lost about 15 pounds and that was it. My body stopped responding and I quit losing weight. Now – I was losing the same 15 pounds over and over again because with each diet, I had gained the weight back so I was yo-yoing back and forth but could never get past losing that 215 pound mark – it’s humiliating to always be on a diet.
Then last June, I started using Medifast through the TSFL company via my niece who is a health coach for them. I was skeptical, of course, as I had not had any success over the past few years with any of the other programs I had tried. I wouldn’t let myself get too excited at first because I thought maybe I would lose 10 – 15 pounds and then that would be it. But this time things were different. Right around the same time I started Medifast, I went to see a new doctor for my hypothyroidism and he put me on a new medication. I started feeling so much better and the weight was coming off. From June through November, I lost 42 pounds. Finally! I was getting somewhere! Then the plateau hit – and I quit losing weight altogether and didn’t lose anything from December through April. I actually started to gain a few pounds back – my body had went into starvation mode because the diet is very restrictive in calories and I discovered that for short-term it’s great, but for long-term, not so great.
I decided to give up the Medifast diet and I went back to Weight Watchers and I am now only 15 pounds from my goal weight. I want this battle with weight to end but I am someone who is going to have to follow a program in order to eat right because I’m not able to do it on my own. I have a problem when it comes to food – I’m addicted to it but yet I’m afraid of it at the same time. My whole life has been focused on every bite that has been put in my mouth or every bite that hasn’t been put in my mouth. I just want to get through the day and not think about food all of the time. I want to get to that place where I can sit down to a meal and not look at food as the enemy. I need it, but I hate it, but I love it too. It’s like a bad relationship with the guy you can’t seem to get out of your life.
The constant battle with my weight has to have an effect on my CFS and CFS has an effect on my weight because of all of the hormone deficiencies, times with lack of exercise, and other problems it causes.
When people read this, I hope they don’t just see a “serial dieter”. I hope they see someone who has been willing to do whatever is necessary to try and lose the weight and who has refused to give up. I am a fighter and just have to find what works for me. I hope I have finally made it.