In my five years on this website, one question has emerged well beyond all others as my most-hated one to see: "Is chronic fatigue syndrome all in my head?" It means someone is not only suffering from dozens of symptoms that have forced a massive change in their lives, but that the person is also battling self doubt, guilt and even shame - because they're sick. In talking to person after person who's asked it, I've discovered that it's usually because someone else (or several people) have posed that question to them.
In the face of decades of research, it's astounding that we still have to contend with this question. To see evidence that the answer is a resounding NO, read this: FAQ - Is Chronic Fatigue Syndrome All in My Head?
If someone asks you that question, tell them, "Absolutely not," show them that FAQ, and, above all, do not let their skepticism become your own. It's poison - shove it out of your mind. You know you're sick, you didn't want to live this way, you'd change it all if you could.
You've got enough to deal with. Keep your focus on taking care of yourself and trying to feel better.
Has someone in your life made you question whether your illness was all in your head? How did it make you feel? How did you get past the self-doubt? Leave your comments below!
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- When Someone You Love Has Chronic Fatigue Syndrome
- A Simple Explanation of Chronic Fatigue Syndome
- Chronic Fatigue Syndrome Fact Sheet
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Since, I look at CFS as an autoimmune/neuroimmune disease, when being questioned as to whether my illness is real, or a figment of my vivid imagination, I try to explain to people that I am not sick in the conventional way that people think of illness. That my body is actually over-performing which can make you feel just as bad as one that is under-performing. Is it an infection or a reaction? Is it is an infection that your body cant defeat and you become weak and frail, or is your body over-reacting to everything; sending out an immune response that is too strong causing inflammation, irritable bowel, pain, nausea and other flu-like symptoms? A strong immune response can make you feel just as bad as a weak immune response; they are totally opposite problems, but produce similar symptoms.
People who are experiencing an over-response of the immune system feel just as sick (eg autoimmune diseases, allergies/anaphylaxis), but dont look as sick because their problem is not caused by a suppressed, poor-functioning immune system (eg cancer, diabetes), but one that is performing too well. In an ironic kind of way, people with CFS are actually too healthy.
In one sense it is in the head,
Single-photon emission computerized tomography (SPECT) scans are the most reliable for CFS .
80% – 81% shows abnormal scans
SPECT abnormalities appeared to correlate with clinical status
Defects were located predominantly in the frontal and temporal lobes. Midcerebral uptake index was found to be significantly lower
Lower cortical/cerebellar rCBF ratios
In monozygotic twins (one with CFS, one without CFS), the same patterns were seen
80% had lower global cerebral blood flow
Diffuse regional cerebral blood flow
Abnormal cerebral perfusion patterns
Reduced absolute cortical blood flow in rather broad areas
Reduced cortical blood flow in the distribution of both right and left middle cerebral arteries
Blood flow in the left basal ganglia and thalamus was markedly higher
Serum TGF-beta and cerebral blood flow abnormalities accentuated after exercise
Additional studies
Sources:
http://www.ncbi.nlm.nih.gov/pubmed/8141020 (1994 *)
http://www.ncbi.nlm.nih.gov/pubmed/8141022 (1994 *)
http://www.ncbi.nlm.nih.gov/pubmed/1491843 (1992)
http://www.ncbi.nlm.nih.gov/pubmed/11376266 (2001)
http://www.ncbi.nlm.nih.gov/pubmed/21167506 (2011)
http://www.ncbi.nlm.nih.gov/pubmed/12554824 (2003)
http://www.ncbi.nlm.nih.gov/pubmed/10974961 (2000 *)
http://www.ncbi.nlm.nih.gov/pubmed/8542261 (1995)
http://www.ncbi.nlm.nih.gov/pubmed/16494597 (2006)
http://www.ncbi.nlm.nih.gov/pubmed/16494597 (2006)
http://www.ncbi.nlm.nih.gov/pubmed/10761837 (2000)
http://www.ncbi.nlm.nih.gov/pubmed/7496949 (1994)
http://www.ahmf.org/01access/01casse.html (2001)
http://www.cfs-news.org/aacfs-01.htm (2001)
From Chronic Fatigue Syndrome Remission: Facts Book 2012 (release in Fall 2012 on Amazon)
Hello; I have been Ill with CFIDS since 1993 when I was a world class chef and owner of 2 successful restaraunts. I had become so ill I was forced to sell both businesses at a loss a year or 2 later. At the time my father and Uncles were practicing Physicians who did not believe that a disease called CFS existed.
All I ever heard was either it’s the stress or even worse it’s the medication being prescribed by , Dr. Phil Nelson who may have saved my life, . He was a colleague of Dr. Cheyney and Peterson. For the past 20 years my illness has progressed in a cicular fashion to the point of disability. which in turn has led to divorce, bankruptcy, and worse.
Having been forced to take pain Meds just to sleep and get around has made me in everyone’s eye a Drug Addict When I lost my home in Florida 10 years ago it was devestating.
I was living day to day on public assistance and struggling to survive when I had 3 Heart attacks in 3 days. The first 2 I knew what was happening, but I didn’t really care but third one I knew would be the last and I figured I better go to the Hospital. I was immediately tested and within 3 hours I was having quadruple bypass. when I woke up 3 days later I had no idea what happened. . This was 4 years ago and I was shocked that in the Hospital almost no progress has been made in the belief of the physicians as to the existance of CFS.
My description of my life today is one of existence. I just try to make it through the day with barely enough money to eat, but I do have a few friends who mean the world to me and I am greatful for them. Now I have 4 prcticing Drs. in my immediate family who think I’m lazy, over medicated loser which I hear numerous times on a daily basis. This makes it hard to practice what you are speaking of because the wrong message has been ingrained into my brain for so long. The truth is I am an Ill man who suffers from CFIDS and they can never take that away from me. Sincerely, Rick
Dear Rick, My heart goes out to you. I have FM and although I have been determined to work with it, I am in a horrible place. My mind has changed along with extreme exhaustion and constant pain. Today I found out I can not use FMLA at work for medical leave because I am 7 hours short of the required hours. I do not know what the future will bring. I may lose my job, my health insurance, my house.
I know you are not lazy. I am sorry to hear that your own family doesn’t see your suffering. Sometimes people say, “maybe it’s depression”. Well, no sh**t Sherlock. Depression does happen because living under the constant struggle of pain, exhaustion, no productive life, and financial ruin causes depression in most people. Duh!
I wish you the best.
Rick I’m sorry to hear about your family situation. I’ve been suffering from ME/CFS since the early 90′s as well and went through the same things with my family of health professionals. My mother the nurse went as far as using a psychiatrist friend of hers (who I never actually met, of course) to convince the rest of my family that I am just a psych case who should have been committed. I’ve had to cut off all contact.
I have since sent them the evidence that has been compiled by the scientific community that proves ME/CFS is real, it made absolutely no difference in how they treated me.
Fortunately I’ve met a wonderful man who is helping me recover. My heart goes out to you and I hope that you will see some better days in your future with improvements in care. Are you able to travel to Dr. Klimas’s clinic in Miami for any help?
This is for Rick – Good for you for just trying to hang in there! I am lucky my employer lets me work from home due to the ME/CFS, but my co-workers just kind of stare at me when I’m in the office like I’m the luckiest person in the world! They don’t know my life is only a endless merry-go-round between my desk, the couch, and the bed. No concerts, no movies, no nature walks, no shopping or eating out. I don’t go on about my symptoms, but I’m honest when they ask how I am, and if I say I’ve been feeling bad (my words for profoundly crappy) they ask “Have I been sick?” Yeah, I don’t even go there. Then I get all the low-down on how they’ve been sick with a headache, or the flu, or a cold. Then they bounce up and down and zoom out the door to start their fun-filled week-end. As hard as it is, you’re going to have to tune out your family’s disbelief. Keep visiting the web for support; we are with you! – CT
I can’t believe I am still having trouble explaining to a new friend why I cannot go out to lectures and films at night. She suggests I rest during the day….as if that would work.
Why are some people so arrogant to think they know more about how we should live than we do. Obviously we are doing the best we can. It has taken me years to find a routine I can live within. My mornings are active, my afternoons and evenings I rest, so that my mornings can be active.
I guess it’s just hard to prove to the most sympathetic that we are really ill with an invisible disease. Too bad it doesn’t change our skin to green. I’ve been ill so long and still cannot find the right words to say.
We do enough, whatever we are able to do. Just living is a great challenge. Then I lost my eldest son, I tell you, it never rains but it pours.
My girlfriend makes ignorant comments all the time. One day, I got so pissed off, I jacked her in the face and bruised her really bad. Her eye ended up swelling shut.
As painful as it was, I walked away from my siblings, my daughter and my grandchildren. My sister gave me 4 names instead of one…”my crazy sister Sarah” and made the comment that she just knew that she was going to get stuck with me. My daughter was just plain mean and the grandchildren were picking up on it and starting to be snotty to me too.
I’m now working on my thrid phase of life. I have a supportive husband which is more than a lot of people so I am very greatful. I do what I can and that just has to be good enough.
It is what it is and I do the best I can. Some days I get really depressed about it all knowing that since my hisband is a lot older than me, I will someday be alone.
I don’t bother telling manhy people what is wrong with me. I’m now on disability so I just say I’m retired. I don’t try to explain any of it. It isn’t worth the aggravation.
I live in England, and although I have been diagnosed with CFS (6 years ago) I am treated at the Department of Psychological Medicine. That’s because the medical profession have no other department that thye feel we ‘fit in’ to !! Unbelievable.
So there’s no wonder that when people ask where at the hospital I get treated and I tell them in the Psychological Medicine Dept, they think ‘oh well, it must be all in the mind then…’ Doesn’t help anyone to understand what I really go through, and that my symptoms are very real and not in my mind.
Now, I don’t tell people which department treats me, it’s too embarrassing. I just say, ‘I’m treated by a CFS Consultant at the local hospital’
My GP (family doctor) doesn’t deal with me for CFS – they referred me to the department of psychological medicine and have essentially washed their hands of me. Nice – not!
I’m sure I’m not alone in being so frustrated by this – all made worse because people often say to me that I look so well. (The worse I feel, the pinker my cheeks get, so people mistake that for a healthy glow…) Oh well, c’est la vie!
One comment I hear quite a bit that frustrates me no end:
People can recognise that I am very short on money and are often sympathetic about that. Then they will say, “Oh well, money isn’t that important, as long as you’ve got your health.” I want to scream at them! If I had my health I could go out and earn some money; it’s my bad health that keeps me poor.
Very strange and upsetting to me that some people find it easy to identify and sympathise with my poverty but cannot remember that I have been in poor health for years.
I was diagnosed with FM/CFS two days before my medical Ins. ran out. It took me over three years to find a diagnosis (and I worked in a doctors office at the time.) I finally ended up having to quit my job due to my health. My husband and I have moved to the mountains to be in a less stressed invironment. Although I no longer have to deal with the hussle & bussle, I can not find a doctor to treat my FM/CFS. We live in such a remote area and the nearest rheumatologist (meaning the only Dr I could find that would treat me), is almost 2 hours away. I can not make a ride like that even once in a while, let alone on a routine basis. Since I no longer have health ins. I can’t afford selfpay doctor visits. (My husband is on disability and doesn’t work either.) Therefore I ‘m not currently being treated for my FM/CFS or any of the many overlapping conditions that accompany. My husband is learning and willing to accept my limitations but I can tell he gets frustrated with me. I have three grown boys who have a much more difficult time understanding. I feel that is mainly because when I was in their lives routinely, before we moved, they saw me as “super Mom”. I’m not a complainer, usually, so I often get phrases from them like: “Just exercise more”…”Take a nap”…”Go to the doctor” ,etc.
I have several people telling me to apply for disability and I’m leaning towards that more each day. The hardest thing for me has been realizing I will never put those scrubs on again and work in a “Family Practice”. It sure does help hearing others express the same frustrations I go through on a daily basis. Although I haven’t had to sever ties with my family, I do find it hard to explain it to them and usually just keep it to myself. (Jesus hears about it all the time but I keep it from my family so I don’t have to hear their comments/ “suggestions”.) Bless you all and thanks for sharing.
One day in London I woke up tired. Very tired.Ten days later I was like brand new. It lasted only that day. Next day I was tired again and it was 1979. Its a torture to work. And I worked and work a lot. I can’t go out to any place, I can’t go to the mall, I can’t seat for a long time at any restaurant.And I don’t have ONE single day of my life that I can say I feel good. Beside CFS I also have anxiety disorder and together is awful. I am about to faint every 4 months or so. Nausea,weakness,irregular heartbeats, fast heart beats. Tell me! Summer is worst.And I get really pink and I feel horrible.Also HBP.
Is a torture to work. And I must work because I live alone and don’t have any other way. My daughters just think I am crazy.My husband passed away 5 years ago.And my brother die. So every day I ask my self how long I will be able to keep working and surviving? Sorry for all of you that have the same thing. Sorry Rick. Evie.
God bless you all for dealing with all you do! I have FMS & probably CFS but the constant denial keeps me from letting my dr add that dx to my chart! I am blessed to still be working since I carry the insurance and I am raising two children with my helpful & loving husband. I was officially diagnosed about 5 years ago but I am sure I have had this for decades. I am also convinced that most women in my family also have or had FMS to some degree.
I meet many people at my job with FMS and other life stealing disease and I can tell you that most of them feel the same way we do…alone, unsupported by family, friends and healthcare professionals. They are devistated by their sickness and almost always, financially ruined. I do have a dr that treats FMS but mostly with medication. I attempt to take care of myself. You all know what that means, not living the life we once had. I have found my silver lining. I can relate with my patients in a way I would not be able to do if I wasn’t sick. God has given me an opportunity to let other FMS sufferers know that they are not alone. This makes purpose to my sickness and peace to my heart. Although I still get depressed about what I can’t do, I know I can give something back. That is what living is all about, giving back. We still have value, it is just different know. No person or diagnosis can changed that! I guess my suggestion to anyone who is feeling alone with an illness is to meet others (online, in person, however you can) who are suffering. Listen, talk and let them know they are not alone. YOU are not alone and you are not crazy! God bless and prayers to you all!
It’s all so crazy that people that are ill have to convince people that they are sick, especially the health care profession. My Dr. is trying to get rid of me, so I have to look for a new Doctor. In the mean time my Mother is sick and we have to move her out of her house of 38 years.
My Dr. wants to send me to a pain clinic, which is fine, if they actually believe I’m in pain. Does anyone know of a good pain Dr. in Denver?
I’m also wondering if anyone has hear of COAT. It’s called Chronic Opioid Analgesic Therapy? I have been on opioids for a few years. I don’t get high, I just feel better. I have some energy and I can exercise…
But trying to get a doctor to understand this and not feel like a damn drug addict is driving me crazy.
Good luck all.
http://www.fibromyalgia-symptoms.org/fibromyalgia_opioid.html
to Cindy, please please please go to your pain clinic. You have nothing to lose and it doesnt mean you dont have your GP still. (that is what happens in Aus, I am assuming its the same there) It took me a couple of years to get to see a pain clinic, and for the first time it actually felt like someone (Dr) was really listening to me without any cynicism. I saw a physio, a shrink, occupational therapist and a Dr all in one morning. I am on new meds now that my doc couldnt give me and its great. I dont always want to be on lots of meds, but with being on the new one (gabapentan 1800mg daily) I have asked my Dr if I can wean off Cymbalta 60mg and replace it with 5htp. I can. I consider it all a work in progress, but having someone listen to you, try something.. and if it doesnt work try something else.. that is awesome. Instead of just having a Dr who doesn’t know what to do in the first place. Please consider it and check with your Dr that he still remains your GP. My pain clinic has given reccomendations to my Dr and referred me to physio with directions on what I need. I finally feel like someone takes me seriously. Best of luck xxx
Hello Adrianne…
When I read your article I felt so related. I’ve been ill since six months ago, feeling more than 50 symptoms and I’ve been in 18 doctors, of all specialities during this short time. 17 of them have told me that everything is on my head, that I’m just stressed or nervous. Sure, who wouldn’t be stressed or anxious if you have 50 symptoms and doctors don’t pay attention to you? Talking about a stressful situation!
Anyway, last week I went to doctor number 18, a neurologist, and he diagnosed me with fibromyalgia. I still have doubts of this diagnose since my main symptom is fatigue, not pain.
Truth is that I might be in a denial situation. I decided to believe to the doctors when they tell me that everything is on my head. I decided this because I’m so desperate to recover my normal life. I want to believe that when anxiety meds finally work I will be able to work, exercise, have fun with friends, like I used to just six months ago. After all, 17 doctors can’t be wrong, can they? Am I in denial?
I have been ill with CFS/ME for far more than two decades, and just a couple of days ago, I may have contracted an asbestos contamination.
Normally people contaminated with asbestos will get ill after 10 years, 15 years, or 30 years, without having had any symptoms at all for all those years. At least, that’s what you will read. Now I am wondering why I am feeling already symptoms only 48 hours (two days) later. Constantly coughing and eye irritation has never been on my list for CFS/ME, but now I suddenly have these symptoms. So my conclusion is that people with CFS/ME will feel the consequences of contact with asbestos almost immediately, wheras other people won’t feel it after years, and years and years. What CFS/ME and asbestos contamination have in common ? Other people may think it’s all in your head, they may think it’s all imagination, even those who should know better.
I’ve been chronically fatigued for 5 decades, no official diagnosis. I also have chronic pain, no official diagnosis there either. I’ve been to many doctors through the decades and all blood work is normal so therefore what else is there except for my imagination. I am on disability because I am a survivor of sexual abuse and deal with ptsd, and I also suffer from physical injuries sustained at my last job.
I don’t talk about my exhaustion, I don’t geat much understanding from family or friends..so I keep it to myself.
I went to a dr for 4 years with the same sympoms and another 3 years with another dr and finally paid private and was seen by an M.E specialist who diagnosed me with having M.E within 10 minutes and was angry that for 7 years I was clearly very I’ll but was fobbed off with its your age, it’s stress, it’s psychological. 5 years later on i went to the dr with new symptoms and tells he me it’s psychological (all in my head) I have a diagnosis for M.E (chronic fatigue) as well as raynauds disease, asthma, depression, irritable bowel and endometriosis. I was so upset I stopped all medications and told everyone I was well and didn’t have any illness at all and switched to alternative therapies with a higher success rate than western medicine. It was an improvement but was forced to see the same dr a month later when I was experiencing chest and shoulder pain, was out of breath, had a very rapid heartbeat and felt very Ill indeed and was told not to worry it was just the effects of the raymauds medication. A few days later my 12 year old son had to ring 999 and called an ambulance as i couldn’t breath and thought I was having a heart attack. Was rushed to hospital and kept in for 3 days as was diagnosed with pleurisy. I now refuse to visit the doctors as I feel I am not taken seriously and am fobbed off. They just take one look at you and they know without tests what’s wrong with you. I have now lost all faith in dr’s. Maybe if they or someone close had M.E they would truly understand how awful it truly is.