Wrong diagnoses hurt. They lead doctors to prescribe treatments that don’t work and may even be harmful (exercise!) and they keep doctors from prescribing treatments that do work. They waste patients’ money and, given the fact that the earlier a person is diagnosed with ME/CFS the better chance they have of improving their health, they contribute to poor health.
The fact that only from 15-20% of people in the U.S. with Chronic Fatigue Syndrome have been diagnosed with it suggests wrong diagnoses run rampant in this disorder. Of all the wrong diagnoses, being diagnosed with depression is surely the most common.
Who has not been diagnosed with depression at some point? I was diagnosed with depression by my primary care provider only to have the psychologist I was sent to tell me, “I know what depression is and you’re not depressed.”
I was lucky. (Of course my primary provider still didn’t have a clue about ME/CFS, but at least he wasn’t prescribing me with antidepressants and exercise.)
Fortunately, Dr. Lenny Jason has come up with a way to convince your doctor that you’re not simply depressed. But first, a little history.
A Little History
The most commonly used definition for ME/CFS, the Fukuda definition, has contributed to the problem. A doctor looking at the symptomatic criteria for major depression and the Fukuda criteria could find them quite similar and be inclined to conclude that you’re just depressed. Or doctors could conclude that some people with depression actually have ME/CFS. (Avoiding that is one reason Lenny Jason, a psychologist, argues for using standardized psychiatric interviews.)
Symptom overlaps between the two diseases include fatigue, problems sleeping, feeling lethargic and difficulty thinking or concentrating. Symptoms more associated with depression include feelings of worthlessness/guilt, diminished interest or pleasure in everyday activities, recurring thoughts of death or suicide.
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The Jason Studies
Natelson’s 1995 study found that people with ME/CFS tended to have more physical and fatigue symptoms and fewer mood symptoms on the Beck Depression Inventory (BDI) than people with major depression.
Jason’s 2005 finding agreed with that conclusion. It found that including activity levels or other symptoms not found in the Fukuda criteria (muscle weakness, need to nap each day, frequently losing train of thought, difficulty finding the right word, confusion–disorientation, hot and cold spells, etc. ) allowed him to successfully differentiate between the two illnesses. Adding symptom severity (instead of simply symptom presence) to the Fukuda criteria also helped to differentiate the two illnesses.
Then in 2006 Jason more or less ended the discussion by combining the results of those two studies to come up with a set of symptoms that could definitively differentiate between ME/CFS and depression.
2006 Study Results
The difference between people with ME/CFS and people with depression ended up being quite simple. People with ME/CFS may have some similar symptoms to depressed people, but symptoms become severe in both disorders are much different.
People with ME/CFS have much more
- post-exertional malaise (PEM)
- unrefreshing sleep,
- are fatigued a much greater percentage of the time
- are more confused and disoriented
- have more severe shortness of breath
- indulge in much less self-reproach than people with depression.
Post-exertional malaise (PEM) – considered by many to be the core symptom of ME/CFS – leads the list. Post-exertional malaise refers to symptom flares that typically results when people with ME/CFS engage in too much physical and/or mental activity. (PEM is such a distinctive part of ME/CFS that the term PEM was coined to describe it.
Severe PEM is common in ME/CFS but not in depression. Jason’s analysis indicated that the PEM experienced in depression is more similar to that found in healthy people than that experienced by people with ME/CFS.
The four symptoms identified in Jason’s study – fatigue, post-exertional malaise, unrefreshing sleep, and cognitive problems – are considered to be the four hallmark symptoms of ME/CFS.
If your doctor thinks you’re simply depressed, you might want to point out that studies indicate people with depression don’t experience much post-exertional malaise or unrefreshing sleep or have the cognitive problems found in ME/CFS. They also don’t spend nearly as much time fatigued, and they typically have a lot more self-reproach.
So you’re fatigued much of the time, can’t exercise without symptoms, wake up feeling like a leaden lump no matter how much sleep you get, feel confused and disoriented a lot, and aren’t into beating yourself up a lot, you have chronic fatigue syndrome (ME/CFS) – not depression.
You may be depressed but if you are your diagnosis should include chronic fatigue syndrome (ME/CFS) as well.
A Psychologist (with ME/CFS) Differentiates Depression and Chronic Fatigue Syndrome (ME/CFS)
Dr. Kristina Downing-Orr, a clinical and research psychologist who developed chronic fatigue syndrome (ME/CFS) is well acquainted with both conditions. She reports that
- The exhaustion in ME/CFS is more constant, disabling and global than in depression and is exacerbated by exertion
- Apathy is common in depression but not in ME/CFS. Instead, the limitations imposed by ME/CFS leave most patients feeling frustrated, upset and impatient to get better.
- Depressed people don’t want to get out of bed. People with ME/CFS want to get out of bed but often can’t.
- When people with ME/CFS push themselves too much they feel worse and can experience a lengthy setback (PEM). When people with depression push themselves they usually feel better.
- Mental exertion can lead to a worsening of physical symptoms in ME/CFS but has no detrimental effects in depression
- Self esteem is not affected in ME/CFS but is in depression
- Suicidal thoughts, when present in depression tend to be pervasive. If suicidal thoughts occur in ME/CFS they tend to be temporary
ME/CFS is Not a Somatization Disorder
Somatization disorders occur when a person misidentifies psychiatric symptoms for physical ones. The high levels of mood disorders present in ME/CFS and it’s many symptoms have sparked efforts by psychiatrists to label the disease as a somatization disorder.
A 2019 study which assessed the effects of having a comorbid disorder such as fibromyalgia (FM) or a mood disorder on the symptoms associated with ME/CFS attempted to clear up that issue. Since mood disorders have a “multiplier” effect on somatization disorders (they make them worse) the researchers determined if the presence of mood disorders (or comorbid disorders such as exacerbated the symptoms associated with ME/CFS.
Because mood disorders did not exacerbate the symptoms associated with ME/CFS but have a comorbid disease did, the researchers determined that ME/CFS is not somatization disorder and is not closely allied with mood disorder but that it is closely allied with diseases like FM and irritable bowel syndrome (IBS). The increased rate of mood disorders in ME/CFS is most likely simply the result of having a difficult, chronic illness.
- Check out Jason’s 2006 study: Hawk. Jason. Differential Diagnosis of Chronic Fatigue Syndrome and Major Depressive Disorder
- Check out Dr. Kristina Downing-Orr’s book
- Use the DePaul Symptom Inventory to chart your symptoms
- Report From San Fran V: Defining Moments – Dr. Leonard Jason on the House of Cards in Chronic Fatigue Syndrome
OMG! this is MY story! Over 5 years of this and it destroyed my mitochondria in the process. My neurologist was nicknamed Arrogant because he refused to even entertain the thought of CFS/CFID. My regular doctor was clueless, he specializes in cardio (now he realizes that they may be connected with my help and his own researching) and after becoming anxious to the point I had to seek a psychiatrist who diagnosed me with CFS. I went to an internist who specialized in testing blood and symptoms of CFID and validated my thoughts and the fact that misdiagnoses has contributed to long term factors now.
Still have enoromous pains in legs and lower back and gained weight because I can’t really move much with the pain and fatigue. It’s truly a catch 22
Hi. I was on my last limb. Fatigue muscle pain. Could only work a day or two a week with a couple days between. Usual run around from dr. Called me crazy. Took me off my adhd meds and a new dr put me on a non stimulant and told me my other symptoms were pretty much in my head. I got put on strattera. Within 48 hours I was a new person. No more stomach pain no muscle fatigue no brain fog. My god a miracle. The drug affects how the body uses norepinephrine. A critical chemical in the body. Eve thing from metabolism to energy to digestive fuction. I couldn’t stop gaining weight. I lost 8 pounds in ten days with no dietary changes. It’s non stimulant ,It not controlled, not addictive and can be stopped with no side affects. Aside from maybe symptoms coming back. It may me just relieving the symptoms of an underlying endocrine issue but in the mean while I feel 20 years younger. I was on the verge of losing everything after 7 months of moron arrogant drs.
Hi how long have you been on this drug now? Do you still feel the same way? Thnks
I have fibromyalgia plus chronic fatigue and atm can’t walk without been exhausted I’m going crazy I’m on cocktail meds tramodol , lyrics , Panama but low dozes but I normally walk but I can’t walk and now depressed coz weight gain I’ve been seeing same specialist for 20 yrs and now he says “oh your getting old “ HELP !! I’ve tried prelexia and Jon is both didn’t work
So whT about the me/cfs ?
Is it still working ?
That’s awesome! I hope you’re continuing to feel well.
I was told by an nutrition-oriented doctor that arginine helps the mitochondria. It certainly made me feel better mentally – as did the rest of his treatment which was tailored to rebalance my personal biochemistry. There are blood tests to find what you need, because we’re all different. It’s serious provable medicine, not a quack theory. I’ve been mainly CFS and fibromyalgia free for over a decade – as long as I keep taking the relevant supplements.
What other supplements do you take? I can’t afford a holistic Dr and feel my life slipping away and have a grandbaby coming
How many of us have said “I’m not depressed! Just exhausted”. It breaks my heart that this is the rule with our illness and not the exception. When did Drs stop listening to their patients and start chalking everything under the sun up to being psychosomatic?
You know I think it was a long time ago. I think there’s a default in medicine where if you can’t explain it the first thing you chalk it up to is depression or something psychological. If the medical profession could believe, really believe that multiple sclerosis – which kills people – was psychological – they can believe anything.
I was told that I needed a psychiatrist by a resident of a major hospital in San Antonio. I told her that I have been to three. But I would be happy to see another if needed . Been treated HORRIBLY by “respected ” dr.s. Been sic for more than 26 years. Still can’t find a Dr. That knows anything about M.E./CFS in San Antonio Texas!!
Have you found a doctor in San Antonio yet? My doctor is open to helping me, but he doesn’t know anything about it.
I am so thankful for a pychiatrist in Australia who told me I was not depressed (‘You do have all the symptoms of chronic depression – but you’re NOT depressed.’) She was convinced the problem was physical and encouraged me to seek other help. The doctor she sent me to thought I was depressed and said she had to treat what she saw, no matter what the psychiatrist said. I refused. Later we discovered I had a UTI and responded well initially to antibiotics, but then went downhill. Months later I found a doctor who diagnosed the ME.
Here in the UK I had to see a psychiatrist in order to start on CBT (had to go through that process but I got ill-health retirement out of it). He diagnosed me with depression after seeing me once! I played along and tried Prozac and got no benefit. He doubled the dose. No benefit and couldn’t sleep. He halved the dose and added Trazadone. Hallucinations! I went off all the medication and improved. Next time I saw him I told him how much better I was feeling. He agreed that I was the best he’d seen me. SNAP! I then told him I’d gone off the prozac. He could not understand why I had improved. No thought that his diagnosis could have been wrong. No questioning or listening to me when I said I was always worse at that time of the year (January) and improved in the spring.
You’ve definitely seen both sides; an enlightened psychologist – they are out there and a pill popping one. What a difference. It’s scary what a wrong diagnosis can do.
Seems to be an other difference between people with CFS/ME and people with depression is that us folks with CFS/ME ARE motivated to do things, but simply CANNOT because we do not have the energy to, whereas in depression motivation do undertake things is lacking.
That’s definitely a big difference. They also don’t collapse after too much exercise. Daily exercise is a top recommendation for depression…
Oh my god this article and the comments just hit me so hard. I suffer from mental health issues but am literally going through every single symptom of CFS. I end up in tears some days trying to explain to my husband that im sorry he has to work full time and has to come home to a dirty house because as much as I want to get up and do things I physically can’t make myself like my entire body hurts and is full of lead and even just trying to sit up in bed somedays is exhausting for me and when I do sit up im dizzy, disoriented, and then my stomac starts to get upset. I’ve been to tons of doctors and have/am treating all other medical conditions. It’s so frustrating having everyone write it off as depression and tell me to just make myself get up and do things and assure me it’ll make me feel better but after i do any kind if physical activitys or even just go through something mentally challenging I’m bed ridden for the next 2 to 3 days stuck in a brain fog like a zombie. Nobody takes me seriously because im only 31 years old. I feel like I’m just going to spend the rest of life wasteing away in this bed.
Hang on, Robin! We’re going to learn a lot about these diseases over the next couple of years.
I’ve had ME/CFS for 21 years now and been married for 12 of those years. I can totally identify with what you are talking about with the husband. My husband did not truly believe me as well. He did try to read up on it and knew about the disease, but he could not get that image of “laziness” out of his mind. When we argued, he would bring that comment up about him going to work all day and me doing nothing all day. He still was not a believer. We are getting a divorce now. Bottom line: give your spouse some articles to read. If he does not believe you and trust you (that is what it is), he is not worth your stress. You are already under a ton of it and you need your rest, not harassment.
I hope you are on Social Security Disability or have applied. (That takes awhile, but don’t give up on that. It will come thru.). I was 36 when I was diagnosed by a hematologist/infectious disease doctor (super intelligent and had a son that has CFS). I got the same responses from others: you don’t look sick, blah, blah, blah, baloney. Keep changing doctors until you find the right one. Ask around; there are others in your area (check local websites, blogs) who also have our condition. Don’t give up. New research is coming out finally due to those Long COVID peeps so things are looking up. Stay as positive as you can. You can get through this, Robin. You are not alone.
good idea – but in the UK it won’t stop doctors saying you are depressed. Very little of a medical school syllabus covers depression so doctors don’t actually recognse it when they see it.
You’ve got the worst of both worlds; they tend to believe CFS is depression and they don’t know what depression is.
I find this a bizarre title and article. Dr Jason has done good work, but the CCC (Canadian and Australian national guideline) http://www.phac-aspc.gc.ca/dpg-eng.php#cfs.
the MEICC http://www.investinme.org/InfoCentre%20Guidelines.htm#ICC and the
IACFSME Primer (US and Canadian national guideline), http://www.guideline.gov/content.aspx?id=38316 and see here for the 2014 update http://www.iacfsme.org/LinkClick.aspx?fileticket=zYEzLn11Ej0%3d&tabid=509
all compiled by international experts, summarizing the research at the time, are how doctors diagnose ME (CFS). All are clear about the difference between ME (CFS) and depression.
Both assert ME/CFS is not depression but neither prove it. It’s difficult to get anywhere by simply stating something is so – even if its by a consensus group – in this controversial disorder. You need statistics and this study statistically proves it; that’s something doctors are more likely to listen to.
The Canadian Consensus Criteria came out in 2003. This study, which took two studies before it to come to fruition, was published in 2006. Apparently Lenny Jason felt the need to statistically demonstrate the two disorders are different ….(even if you did not :))
My point is that diagnosis is made by these documents at this point. If a patient meets the criteria they have ME. If they have primary depression, they will not meet the criteria. I don’t believe your claim that bringing in a 2006 paper by a psychologist will educate a non-ME-literate doctor, as much respect as I have for Dr Jason, whereas the national guidelines will.
I worry that newbies and people not as conversant with the literature will not be aware of all the other resources on this topic and will be misled by your title. To reiterate, if anyone has a problem with their doctor thinking ME is depression, they should bring in the National Guidelines I’ve listed.
The CCC and the IACFSME guidelines do not just claim there is a difference as you said, they summarize the research to date and explain the differences. The IACFSME Primer has a section devoted to it 4:7 Differentiating between Depressive/Anxiety Disorders and Psychological Reactions Secondary to ME/CFS (pg 16, 17) which includes symptoms only found in ME and those only in depression. I can see bringing along Dr Jason’s article in addition, but not replacing the guidelines.
Finally, another useful resource is Dr E Stein’s .Assessment and Treatment of Patients with ME/CFS: Treatment Guidelines for Psychiatrists http://sacfs.asn.au/download/guidelines_psychiatrists.pdf
This is an article on Dr Jason’s 2006 paper. I think a title that reflects that would be better for your readership.
the IACFSME was 2012, updated 2014
The key difference between depression and CFS/ME is that with ME I fantasize about all the things I want to do but cannot do – including house work. Gosh if someone had told me that one day I’d be day dreaming about doing my own laundry I’d have laughed at them. I get frustrated by what I can’t do and sometimes I get a bitter about what I’ve lost, but it’s not depression. I don’t get off the couch because I can’t – physically impossible sometimes; not because I simply can’t bring myself to do anything. Depression is a legitimate illness/condition and I believe it is degrading to those who genuinely suffer from it to have it used as a catchall diagnosis.
Good point! It’s degrading to people who have depression to just throw people who don’t fit elsewhere into that basket!
I know a guy who woke up one morning depressed. It was acute onset depression – no trauma preceded it, he had a happy childhood, he was in great shape – he just woke one morning depressed.
No psychotherapy could touch that – it was all chemically induced.
I never thought about the fantasy actually being productive. It is coping mechanism to counter the feeling of helplessness. I also have these fantasy.
Doctors and police sometimes make the same mistake of once they have a suspect in sight they are blinded to the real culprit. I saw a book in a newsagent once which i bought instantly as it described my current state so accurately. This was after a doctor who i went to for help asked me if i was a hypochondriac. The book was called “Sick and tired of being sick and tired” It said that being sick and tired can be depressing which adds to the confusion for doctors. Ten years later i suffered depression and i realised that i had trivialized depression in the past because i had never experienced it so i couldn’t really understand it. I see that doctors do the same with diseases they have never experienced. They can study them but they can’t understand what it feels like to suffer them which makes it harder to diagnose them. I’d bet that a depressed doctors diagnoses more depression in his patients.
Depression, psychologically based somatic preoccupation, and or iatrogenic effects of medications are always fallback options for physicians when the presentation doesn’t fit any disease they are aware of. It is also the fallback option for diseases that do not (yet) show abnormalities in currently available labs. Medicine is rife with examples of looking completely foolish as a result of this behavior, a behavior which is an attempt to safeguard a sense of authority and narcissism. MS is a great example.
Ironically, ME/CFS no longer belongs in the category of diseases without objective data. However, the medical profession has not taken the time to educate the itself. The AMA and the NIH should be picketed daily and lambasted in the media for their lack of basic education of health professionals about such a serious and highly prevalent condition.
Physicians who are aware and accepting of the syndrome as a biological entity think that nothing has been done of significance in the last twenty years. The thinking usually goes: “That CFS thing. You are tired all the time. Nothing to be done, Wait and see if it gets better.”
I am sure this topic resonates with all of us. As I understand it, early studies forgot to ask the basic question of whether the depression was the cause of or an effect of CFS. In the early days of my illness before I was diagnosed with CFS, I went to see an infectious disease specialist. The visit was useless and I was billed, by an infectious disease specialist mind you, as though I had a psychiatric illness! (Which meant the appointment wasn’t as well covered by my insurance). I’ve always understood that our post exertional malaise is very different from the response that people with depression have to exercise, which is that it often helps.
How to prove to your doctor you’ve got ME/CFS instead of depression… This is such a crucial question and one whose answer most of us are so much in need of when seeing a doctor for the first time! How DO you make your doctor come off the thought that you are simply depressed…(your doctor, and your entire entourage for that matter – that’s how important that question is in my view…)
If you are before an ME/CFS unknowledgeable and skeptical doctor, all-too prone to think most patients who complain about fatigue are depressed, you need a powerful statement, or else you are practically doomed…
It seems Dr Jason has a tendency to bring down to a minimum the symptoms required to identify the illness; paradoxically when it comes to ruling-out depression, I feel he could narrow it down even more! I find the above list has too great a margin of error. The first in the list is the only one that does the job – PEM. But as far as the other symptoms go…tell a skeptical doctor you have unrefreshing sleep, he will say depression does that; Fatigued? – depression does that; Confused? No concentration ? – depression does it again; Shortness of breath? Even THAT depression can do, as it often comes along with anxiety disorders… (again, we are here in the mind of a “depression-biased” doctor)
Fair enough doctor…now this: if I get out of bed, and I try to shower , but then I am knocked-out by it, and have to go lie down for an hour before being able to get up again, does depression do that as well?…
To me that’s all it takes. Before a skeptical doctor, you need a clear and bold description of this one symptom alone,- and you are rid of the depression suspicion right there and then!
The concept of “PEM” is in its early days. Outside of the “CFS” world I have not found ANY MD that acknowledges the concept of PEM. And the vast majority of patients have no objective proof that this is occurring. The skeptical doc will say psychological issues will cause such “unbelievable” reactions to simple movement and very limited exercise. I would argue that “PEM” could nicely dovetail with a somatoform disorder – if the skeptical MD is coming from that perspective.
So when they are suggesting “depression” I think most are really thinking somatoform disorder, which is a different ball of wax than “simple” depression.
I didn’t know that shortness of breath was a symptom of CFIDS – I’ve had it off and on for 1.5 years and lately it got very bad. A heart monitor showed 20% of my heartbeats are PVC’s which correlate with the SOB. Wanted to relay that in case someone might be assuming theirs is CFIDS related when it may not be. Course, I guess the PVC’s could be CFIDS related, but at least they can be treated. It’s sometimes hard for us to know what to chalk up to CFIDS and what might be a separate issue. This happened to me 4 years ago with dizziness – a doc wanted to blame the fibromyalgia and turns out I had a big hole in my ear.
Try adding on another layer of complexity, when your child is the one who is sick, they think your child is mentally ill and/or you are! Then add on what happened with Justina Peletier and every day you have the dilemma, do you seek help for your child and risk them locking him up in a mental ward, or do you just let him suffer, knowing there are few answers to this disease, and wait until he turns18 to seek further help, knowing that at least he has you to take care of him.
Cort, you should do an article on this topic. It’s a nightmare!
What a nightmare…It’s like living in some alternate universe you can’t believe is there…
I would be really interested in hearing the stories of parents of children with CFS – being my own advocate is hard enough – to negotiate the medical system on behalf of my child would be an emotional roller coaster. I would have no idea how to protect my child from the widespread medical discrimination. I feel for you.
I’m a mother with IC, CFS, and FM And I have a son with ASD, ADHD (we’re a bunch of acronyms here at my house! ) I have a daughter with dyslexia too. I’m educated with a degree and became sick at 20 yrs old, and learned to advocate for myself. I naturally took what energy I had and used it for my children.
Doctors, therapists, nurses, teachers have ignored me, put me down and accused me of “wanting something to be wrong with my child!” That could not have been farther from the truth, I just knew what “not normal” looked like and with my kids especially, refused to stop looking for help. Now I’m single (Imagine that.. I sound like such a prize! Lol) I’m tired and I dream of all the little things I want to do and show my kids. I don’t want to lay here, so exhausted that I don’t even shower every day anymore. I’m not holding my breath but false hope is dangerous. I’m sorry for all of us
We’re all treading a very difficult road, no doubt about that. Good luck with everything, Elle.
I’ve never been able to describe it accurately , but “waking up like leaden lump” is perfect! ME/CFS has dragged me to the depths of personal awareness and along with it lifted me. Depression is not an option.
Telling one to exercise with either depression, CFS, POTS etc. Is just as bad as telling someone to pick themselves up by their bootstraps, while standing in them. Or telling someone to “snap out of it”. If a person could do that, they already would have. And if a person could “think” themselves better through logic, that would have already happened too. Yes, moving could help all these problems if not over done. But there is a fine line where that is. I have talked to some who believe hard exercise helped get them well. But, I’ve talked to many more who dont find they can even entertain the thought and then maybe couldn’t stand to do it. Most of us POTS people have to start out with sit down exercises and work our way up to more standing. Since Postural orthostatic issues mean what happens with upright posture. Many will pass out with the simple act of standing still too long. Hearts racing upwards of 180 bpm (or more) with a simple stand and NO exercise. Our hearts should be well conditioned from over beating trying to get oxygen and blood to our head before we crash. Depression is all relative. Look at what all a person is dealing with, not only their health but their life circumstances and what their health may dictate to cause their life to be a certain way – then decide what came first. Either way, depression is serious and it should not be taken lightly either. But, fix what may eventually lead to depression, the years of dysfunction, then there wont be the blur of the lines as to what is wrong. Off my soapbox now. 🙂
I agree. I was not depressed initially but after 15 years of being told I was nuts or being made fun of at the doctors office, no appropriate treatment, the list goes on, I am depressed. I think of all of these things I would love to do. I would love to go out to dinner, but afraid to because of IBS-D, go to the grocery so that halfway through the store I just leave my cart and go home because I am done, leaving groceries in my car for days because I don’t have the energy to carry them in to the house. I lost my job because I could not work, my husband locked me out of the house and filed for divorce because I no longer took care of him and didnt have a job. HECK YES I am depressed, but that came long after the egg was laid.
Rhonda, my heart goes out to you. You have been dealt a very challenging hand. I am sorry you are suffering this way.
This opening story was as if I wrote it myself…
I did, not 2 days ago did I Say this on my anaemia support site,
(unhappy no one would look further then my anaemia, no one else I know with that ever has half as much extreme symptoms I get!)
I’m certain I have cfs but I have to wait until someone finally listens to me and looks past iron issues, or a test is developed first…
word for word I said about being fobbed off,
Drs thinking your crazy, sending you to a shrink who found no psychological issues, yet dr still putting me on every anti depressant going when none of them worked.
Not being able to get off the couch..literally every single thing is unbelievably the same…
I wrote to also say: Your better of without the deadbeat husband, it infuriates me when your made to feel bad because you cant physically do the housework one day, or make the dinner, do the washing…
Because it was the fairy’s that usually do it, of course.
We do everything out of the goodness of our hearts to just get trampled on when others have to do it because we feel too unwell to move….they don’t do it of course!
Do not let him make you feel like crap.
Unsupportive means uncaring, so he didn’t really value you enough.
And FYI I always put off the shopping at the thought of lugging it back home……
I work full time and never miss a day, but my body feels broken for it and drs always not believing you breaks your heart and makes you angry and upset.
Sorry you and everyone else feels the same way.
I hear they have made breakthroughs with future tests and treatments though.
Great article. I remember an analogy for the difference between ME/CFS and Depression I heard a long time ago which has stayed with me. Two people live side by – one with depression and one with ME/CFS and both have overgrown gardens full of weeds needing attention. The depressed person doesn’t see the weeds because of lack of motivation/being overwhelmed by their black cloud (sadly) but the ME / CFS person is acutely aware of the weeds & wants to get out there but is very aware of the consequences to their health, having learnt from past experience what weeding to do to their ME/CFS. In other words we are some of the most frustrated people on the planet – definitely not lacking motivation but without the energy/too sick to do what we want to. It’s good to keep reminding yourself of this. Obviously this is where the ‘not beating yourself up’ for not getting things done comes from – we learn to go easy on ourselves because we know the consequences of doing otherwise.
This is an excellent analogy. My mother tells the story of going from Australia back to the UK on holiday and staying with her brother while he was in a bad bout of depression. He loved his garden but didn’t touch it that year. My mother and father weeded it and planted. When he finally snapped out of his depression he walked down the garden and was so impressed at the way it had survived the lack of his attention all summer; he genuinely had not seen my parents working in it.
Beautiful description. This is literally my life! My brother and I live in our childhood home that we inherited when our mom passed a number of years ago. When I first moved in (my brother had never left), I couldn’t wait to re-landscape the front and back yard. I had such a good time picking everything out. I hired someone to plant it all, not really thinking about how I would have to take care of it on my own. I was diagnosed with Fibro in 1999. More than any pain, I have been plagued by bone crushing, mind numbing fatigue, that has gotten significantly worse over the last couple of years. I suspect I have a significant share of CFS as well. However, now that I am on medi-cal, I cannot get any primary doc to take my fatigue seriously (altho to be fair when I had private insurance I wasn’t getting that much more respect). They either simply don’t listen, try to placate me, or prescribe anti-depressants. In the meantime, my cognitive skills have decreased to a scary level. My brother, who has always been somewhat depressed, was diagnosed with adult onset muscular dystrophy about 15 years ago. After heart surgery a year ago, his depression has gotten pretty severe. We can no longer afford a gardener and my beautiful garden has been fairly neglected for over a year now. Every time I walk out the door, or drive in the driveway, I am struck with guilt and sorrow at how much my garden needs me. Sometimes I can’t take it anymore, and I will get out there and weed a bit or trim back some overgrowth, but I pay for those days with severe pain. My brother on the other hand, is completely oblivious to the weedy mess that surrounds our home. He is way too deep into his hole of despair to even notice anything around him. I cannot even look out the window without feeling the need to weed! Depression vs. Fibro / CFS fatigue is very clearly defined in my life. I could use this example at my next doc appt., but getting ignored has become too exhausting ;(. Sorry for the long winded comment, but your analogy really touched my life!
Glad you found my post helpful. I have a brother who has suffered from
schizophrenia for almost as long as I’ve had ME/CFS and Fibro (over 30
years). I believe he has suffered depression along with or as part of his mental illness and I see the difference between what he experiences as depression and what I do too like you. He’s better now than he was but I know it’s awful watching someone close to you who is clinically depressed. And I truly believe what we experience as depression is different and a consequence of living with the limitations of our illnesses. I’ve never lost the motivation to do things but get miserable and frustrated because I can’t do what I want to or because doing as much as I can do is such a struggle.
All the best.
this got a lot of responses! I have had ME/CFS for about 20 yrs now. In the beginning I did try to educate doctors I saw. Most of the doctors I saw did not tell me what they were thinking – they were polite, but I could see what they were thinking (being a doctor myself helps) and I could see brains cranking up to a diagnosis of malingering, or some non-specific psychological problem with ‘secondary gain’.
However, I have gotten tired over the years of trying to deal with doctors who tell me all I need to do is to get to the gym and exercise hard….. In the last bunch of years I try to not waste my time and energy, if I have any choice about it. Leave and find someone else who listens and is respectful. If you have a doc who thinks you have depression but is open to thinking, then that is one thing. The ones that are closed minded, and sure of themselves…..what is the point. They dont think they can learn from us. They shouldnt get our business.
I dutifully exercised on my stationary bike for 20 minutes every day.
Then I got off, kicked the front tire HARD – then went back to bed for the day.
Yes, Doc, I am in compliance, but let me tell you what else happens. . .
One puzzled doctor, one definitely not helped patient. He quit playing the “depression” card on me but had no other answers.
Some people have put it well; it isn’t that easy!
As a clinical psychologist with ME/FMS, plus osteo, there are times depressive symptoms fit me!
But check out this list you can get from any website dealing with it –
– Depressed mood most of the day, nearly every day,
– Markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day
– Significant weight loss or weight gain or decrease or increase in appetite nearly every day.
– Insomnia (inability to sleep) or hypersomnia (sleeping too much) nearly every day
– Psychomotor agitation or retardation nearly every day
– Fatigue or loss of energy nearly every day
– Feelings of worthlessness or excessive or inappropriate guilt nearly every day
– Diminished ability to think or concentrate, or indecisiveness, nearly every day
– Recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide
Believe me, a lot of people with depressive disorder do have a lot of these problems most of the time, as do many of my clients with any type of chronic pain.
It really isn’t always so easy separating out the chicken from the egg, not without spending time with someone to get a really good picture. I have even felt loss of interest or pleasure, weight problems (medication and inability to do serious exercise don’t help!), little energy, even feeling worthless and feeling it would be better not to be around, plus poor concentration and indecisiveness. BUT I usually get over most of these symptoms most of the time. Today I’m not so hot because we took the grandchildren to a wave pool yesterday! And usually there is a reason for these symptoms, i.e. I feel guilty sometimes because I can’t do as much physically as my wife can around the place most of the time, not because I generally feel negative about myself.
So you need to tease out some of this and be clear where the signs started and understand that anyone can be depressed, but not necessarily as a primary disorder i.e. they are secondary symptoms to your physical issues. So you need to be clear which came first; the chicken or the egg.
And that isn’t always easy when you are talking to a medical doctor with little training or understanding of mental illness. I have so many various physical issues that I myself wonder if my physical symptoms are “functional”, that wonderful word. And doctors covering for each other doesn’t help either. The year before last I developed seizures when I had tramadol on top of other CNS meds. At first it was acknowledged that I had too high serotonin levels, causing seizures, but then later the neurologist was quick to say that I could have developed seizures anyway, even though there was no cause found! Well, couldn’t have possibility of me charging another doctor could he!!! “An inexact science”!
I was eventually diagnosed with CFS/ME by Dr. David Bell, but before that, I had the following experiences during the span of several decades:
– In college, when I first came down with the illness, the Columbia clinic doctor said that I probably had neurasthenia. As it turns out, he was correct!
– I later went to a neurologist at NYU who was very highly recommended. He said my condition was psychological.
– I went to another neurologist years later who diagnosed me with “migraine”. He gave me muscle relaxant injections in my back.
– I went to an internist who gave me a battery of tests, but finally admitted that he was stumped.
Dr. Bell was very nice. He experimented by prescribing doxycycline, which I took for months, to no avail.
I find that the worst symptom is the cranial pressure, which is distracting. I also notice that prolonged concentration can be difficult, particularly if the fatigue appears.
I tend to get the fatigue every day at about 1:30pm; it is very severe for a couple hours – I nap if possible.
It’s amazing that there are still people out there who think this is psychological. I’m just glad that the pet scans and autopsies are proving otherwise.
My son has also has frequent severe afternoon fatigue. He is often unable to even hold himself up, not even his head. Then he snaps back to his normal state of fatigue a few hours later. To me it seems that it’s part of some circadian rhythm. Is this common? Has any research been done on it? Heard any theories to explain it?
I know my symptoms are not unique. A few years back a Chinese research colleague of mine came down with CFS/ME and his career took a nosedive. He had pretty much identical symptoms – the pressure in the head, weakness and fatigue varying during the day.
I have not heard of any circadian rhythm explanations per se. My own feeling is that this is a virus that lurks in the nerve tissue, as with shingles, and that the body keeps fighting it back, but it recurs constantly. I’m looking forward to hearing about viral-related research this year which targets the nerve tissue, especially from Komaroff and Van Elzakkar.
If it’s true, as Van Elzakkar theorizes, that the vagus nerve is involved, I can understand the lack of overt symptoms as the vagus nerve, as far as I know, is entirely internal to the body. Japanese researchers also see evidence of brain inflammation, and autopsy results from Britain show some evidence of damage.
I think that this is a really serious disease with major social costs. It should be attended to much more vigorously. Many health professionals, unfortunately, cannot admit when they don’t understand something, hence the psychological explanation.
An interesting sidebar to the Van Elzakkar theory is the work being done by D. Skip Pridgen regarding HSV infection in gastrointestinal tissue of people with FM.
If you search Pubmed you will find enough evidence to illustrate that gastrointestinal dysbyosis/infection has neuro effects. The communication with the brain occurs via the vagus nerve (it doesn’t actually have to be infected) whereby excitatory messages are sent to the brain stem and trigger microglial activation (neuroinflammation).
Wow! So interesting. Time to peruse Pubmed.
I have severe afternoon fatigue usually starts around 2 PM and lasts a few hours. I just plan that time to take a nap or lie on the couch and watch TV. I am glad to hear I am not the only one with this problem!
Roar lions roar! A CUA psych was the first person to see that I have bipolar disorder and treat it. Ever grateful. However, being treated/diagnosed with CFS, or pretty much anything, is massively complicated by the presence of a pre-existing mental illness. Everything gets written off as psychological. I had a gas leak in my apartment a couple of months ago and went to the ER for CO poisoning. They refused to even do a blood test (I just wanted to know if I should take my cat in and call the fire department) and diagnosed me with anxiety, although I presented no symptoms. But obviously, if I have a mental illness, I can’t possibly be sick with anything else. You’d think being crazy was a miracle cure. So when I got sick with CFS, the first suggestion from my doctor was, “We should try an antidepressant.” Lady, I was already on several! And it’s true I suffer from depression still (bipolar pretty locked down thank God). Because I have depression. I also get depressed when I can’t function, even change my clothes, for several weeks. Anyone would be. When I feel better, it’s like the entire world is smiling with me. Luckily my doctor trusted me when I presented my own research to her and diagnosed me properly after a month of her own research. But for the most part, I’ve found psychiatrists to be the most educated on CFS, and my care is mostly in the hands of my current psych. So it’s funny that we automatically get shuttled to the behavioral experts, who are the ones to tell us we have this and not that. Anyway, I just had to respond to a fellow Columbian!
Telling them you have Post exertional malaise and unrefreshing sleep does not help. Docs still think it is psycological.
They say that the post exertional malaise + unrefreshing sleep will go if you exercise more and take the antidepressants, and if it doesn’t, you need another antidepressant or to carry on trying.
Telling them that my fibro pain is so severe it feels like knives in my shoulder helps a little…though 1 doctor was nice then I heard him saying to someone that my pain is psycosomatic.
Nothing will help until they bring in some test or find a new drug that is profitable for them…
The annoying thing is that some tests already exist, like tilt table, PET SCANS, functional SPECT scans, Hokama’s test. Our patient groups should be pushing for those tests to be studied more and then used for our diagnosis.
Some 30+ years ago, while I was trying to figure out what was making me so ill, after being seen by numerous specialists, including psychiatrists and psychologists who prescribed anti-depressants, I was seen by the Head of Infectious Disease Department, at the Cleveland Clinic…she told me to get a hobby. I wanted to smack her! I knew I has something…it was not depression. I wanted to get back to sailing and rollerblading, but I could not! It took another 10years before I found a wonderful PC who, even though she didn’t know what it was, listened (sadly she has moved out of the area) and then attended a lecture by Dr. Nancy Climas…eureka!!
I recently saw my endocrinologist…I was having a really bad day but since I’d already cancelled two apts, felt I needed to get there. Although I keep telling her I have ME (you need to exercise more to keep your glucose down), she won’t accept the reality of it. Her new to the office nurse saw me first and reading from my chart, said I sufferer from fatigue. “No, I suffer from the EXHAUSTION that is a part of ME! Do you know what ME is?” I gave a quick synopsis and then asked her to please turn off the lights as she was leaving the room because my eyes were bothering me. When the doctor came into the room she immediately turned them back on, completely dismissing my problem, even though the natural light was more than adequate. I won’t be seeing her again!
My PC is very understanding. She frequently has medical students, from U of Miami and FL Atlantic U, working with her. I have made a point of asking each what they know about ME/CFS…nothing, absolutely nothing! That pretty much says it all. 🙁
This is very helpful Cort. One test I read about was referred to in a comment: If you ask people with ME/CFS what they’d would do if they woke up not sick the next day, they’ll have a long list of things they’d LOVE to do. If you ask a depressed person the same question: what you do really want to do…they’ll say they can’t think of anything.
I write about CFS for Psychology Today (among other subjects — many on chronic illness in general). My most popular one is called “The Stigma of Chronic Fatigue Syndrome.” If anyone thinks it might be helpful, here is the link. At the bottom, you’ll see links to my other articles on CFS: http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome
Thanks as always for your excellent work.
Toni, I am very thankful for your blog. I always learn so much and I appreciate your insights and gentle spirit. You are a blessing to so many people!
I spent YEARS with doctors telling me I was “merely depressed”. As my symptoms got worse, and I couldn’t find a doctor who believed me or even knew what to do with me, I did develop a Major Depressive Disorder. Oddly enough, when I was diagnosed with major depression, no one seems interested in treating that!! Now I feel caught in this terrifying spiral of worsening ME-CFS symptoms (I can barely stand in the shower now and have almost collapsed in the kitchen numerous times) and the tremendous guilt I feel for ruining my husband’s life (this is all me, not from him). However, I do recognize all the blessings in my life and I always make sure I bring myself back to that. I can’t stress enough how important it is for people who truly are experiencing depression to get help! I pray that doctors will be better educated in these chronic illnesses so that people can get proper treatment right away and thus increase their chances of recovery or at least remission. Also, thanks to the tremendous work being done by patients themselves, as with Cort, Celeste, Toni, Jen, and many others, I do believe we will see better treatment (more compassion) and better treatment options thanks to greater research, awareness, and understanding.
I have never been officially dx’d with ME/CSF, yet I’ve believed that I do have CSF and this article verifies my self-diagnosis. I self-diagnosed my 3 autoimmune diseases years prior to my official diagnoses.
I am grateful for this article and will certainly be bringing this to my Rheumatologist as I currently do not have a viable Primary Care Physician. I continue to seek to find one worthy of me, yet to date I have not discovered one. So, I don’t know where else to take this. I’m not even sure of treatments that work for anyone. So, if any of you can assist me in this, I’d be grateful…very grateful!!!
Blessings for your Healing to you all!
Using the Health Rising FibroMapp and the comprehensive reports helped me hugely. It wasn’t until my doctor saw that my pain level was always 8/9 and my sleep issues (as the app tracks sleep, as well as meds, activities and more) where they started to take me seriously.
There is no clear answer to all of this- I have spent 18 years grappling with this question.
First, I would point out that Jay Goldstein, one of the best ever CFS clinicians, said that CFS could be ‘shoehorned into a definition of atypical depression’,
Second, we need to understand there is no distinction in real terms between ‘neurological’ and ‘psychiatric’ illness. It’s a quirk of history that the disciplines were separated. The only difference is how particular labels resonate in the public. That’s all they are- arbitrary labels.
Really- do people not think that ‘psychiatric’ or ‘mental’ or ‘psychological’ illness involves physiological dysfunction of the brain and central nervous system, just as CFS does? Do people not think that infection can cause ‘psychiatric/mental/psychological’ illness, just as it does CFS? Have a look at this if you have any doubts- a very meaningful article, due to the massive sample size and 5 decades of data.
As good as the ICC document is, it is very wrong to downplay mood disturbance in CFS. We DO suffer from disturbed mood, and it’s not just ‘reactive’ – it’s often part and parcel of the illness, just as it is with any other physiological illness of the brain/CNS.
Incidentally, the black dog institute here in Australia has in recent years been raving about ketamine’s results in treating treatment-resistant depression in trials, saying it works in 70% of cases..and within hours of being slowly infused by IV. This was something Jay Goldstein did decades ago…for CFS…with similarly excellent results.
So- it’s true clinicians have no idea how to treat us…but that’s because their understanding of brain illness is incredibly limited…and revolves around trialling a range of antidepressants with a very narrow therapeutic means of action. They are obsessed with serotonin..where we are often more likely to respond to drugs that are dopaminergic or noradrenergic, although we often can’t tolerate them either.
I have POTS, disturbed immune function, severe PEM, temperature dysregulation, blurred vision etc. I also have depression and anxiety..and they are absolutely not ‘reactive’ due to 18 years of hellish struggle- they are part and parcel of the illness.
I have rapid therapeutic response to certain drugs due to their brain and CNS effects (such as guaiphenesin). This is probably due to its effect as an NMDA antagonist. (ketamine is also an NMDA antagonist). There may well be a primary immune dysregulation involved…or it may just be that the glandular fever that started this illness has caused brain dysfunction, and immune dysregulation is just a downstream effect, rather than a cause. Again- people with chronic depressive illness also have disturbed immune function.
Nothing is black and white – labels least of all!!!
I appreciated your comment. Food for thought.
The latest research on POTS is indicating autoimmune dysfunction. My treating myself from this angle has helped me more than anything else I’ve done. I attribute diet as the key. But I’m also on low dose antibiotics and anti malarial herbs. The article you noted recommends this. So that combo is for sure changing my life.
Not sure how you are able to use Guiapheneson with POTS as it can dehydrate you. We have problems with that any way. However, I tried that years ago for my FMS. I didnt find that it made a difference for me. I was very strict on the protocol too.
So glad you brought up this subject, and one of the comments was from a parent. Our daughter, now 36, has been suffering with ME/CFS/FIBRO. since she was six years old, and possibly before.
What three year old in a toddler ballet/dance class, comes and sits down next to mom and says,
I’m too tired to dance, I want to rest! She was diagnosed with an underdeveloped immune system for which she received years of prophylactic antibiotics (definitely didn’t help), a psychological disorder at 9 and given antidepressants (they determined she had school phobia) and after we were threatened with legal action for letting her stay home from school when she was too sick and exhausted to go, we finally got a diagnosis at age 16 by a doctor who said he knew nothing about CFS, but if we went to the support group, he’d read what literature we brought to him! Dr. David Bell set this mom free when I read his writings on CFIDS in children, as our daughter exhibited 95%of the symptoms!!! It didn’t go away, but at least we all felt vindicated! We took long trips to visit Dr. Charles Lapp, and the late Dr. James McCoy, an immunologist who truly was our angel. He checked her blood every three months, helped to adjust her meds and thanks to him, she had a little more of a life than she would have otherwise. So much more I could write, but it was a terrifying journey much of the time. She exhibited orthostatic hypertension and failed the tilt table test (at 18); she still can’t stand in line in a supermarket or wait for a bus to go to appointments. And we believe, that all the years of the body’s trying to get blood to the brain (all the earlier mentioned symptoms of others have been her lifelong struggle as well), she developed a seizure disorder five years ago, so they knock her out with regularity as it’s been hard to maintain a balance on the meds. She’s been legally disabled since 18 years old. Has had to give up so much to survive her life. Thank God, she has some very special friends who walk the journey with her as they are able, especially providing meals as she is usually too nauseated to eat, let alone prepare the food, and mostly because of the meds! She is this mom’s shining example (as I get older) of how to survive with laughter and grace despite crushing fatigue, unendurable pain at times, and some pain 24/7, brain fatigue etc. She even tried to help me when I fractured both hips this past year. She couldn’t do a lot, but her herculean effort to try was huge! She attributes so many of the problems to an early infection attack on her hypothalamus in the brain, and she also concurs that the vagus nerve has a great deal to do with it all. When she has her times of some mental clarity, she researches. Thanks for reading this mom’s ramblings on the ravages of this horrible condition. Keep fighting on dear ones! You are all so courageous. Thank you Cort, for this forum to share, and all your helpful information!
Sorry to hear about your daughter. My first remembrance of problems was when I was 8 years old, I’m now in my 50s. Ive had a good life despite it all. If you haven’t looked into POTS, there is a subset of us that have more hypertension with standing and our orthostatic drops start from a higher level. With us they have found higher standing NE levels. Many of the “norm” treatments for POTS doesn’t work for us. I also have EDS and FMS (I wonder about the two DXs as being somewhat the same) and many of us have MCAS which is different than MCS but appears similar but triggers are unpredictable. In the POTS world we call it the trilogy. Many of us have tremors too and SFN to go along with it. I also have many autoimmune issues. Treating things from that angle has been my best thing to do.
I meant to type hypotension, not hypertension! Some of her early meds and supplements were to try and raise her blood pressure! Not sure what all your abbreviations are, but she probably knows what they are! She is being treated for neurological and autoimmune issues as well. She too has tremors, but not all the time, fortunately. So glad you have managed to “have a life” despite the condition! For some people, apparently starting ME/CFS as a child, though it doesn’t go away, the symptoms are a little milder throughout life, and you and our daughter have not known much of life without it, so it’s almost your “normal”. But I pray for all who have been struggling to have their day of
POTS is the main one for you to look into. It stands for Postural orthostatic tachycardia syndrome. Most with it have hypotension with orthostatic drops.
MCAS- Mast Cell Activation Syndrome
EDS- Ehlers Danlos
FMS – fibromylgia
SFN- Small Fiber Neuropathy
Even though dysfunction may be our “normal”, we are very aware it’s not “normal”. We long for the energy and abilities that we can only dream that we could do. We try to do them despite ourselves and in so doing, maybe we are able to push ourselves to have a life more like we desire. It for sure gives one the determination to LIVE life, not let it pass us by. It may be more limited, but we get more creative in checking off our bucket list, so later there are no regrets and wishing for “should of’s, if only”. I tell my friends who know all the issues I have (several in the rare disease catagory) if I die tomorrow, there is very little I haven’t done or seen that I’ve wanted to do. And I have few regrets, of “if only”. I hope your daughter will be one of those. We tend to look at the world a little differently and know it could be worse. We are here to help others and that’s what truly brings us happiness.
Your last sentence is what life is all about, and our daughter would wholeheartedly agree with what you wrote! “We are here to help others and that’s what truly brings us happiness”. She has had the opportunity in given moments to do precious and wonderful things, and as a mom, I am soooo happy she has had these experiences.
We’re very familiar with POTS and Ehlers/Danlos syndrome which she definitely deals with.
Bless you Issie, and thank you for spelling out the abbreviations!
Does she also have MCAS? Most of us with EDS and POTS seem to have this too. Treating this has given everyone I’ve talked with some relief. We are not getting totally well, but the difference is very noticeable.
Two simple ways to distinguish:
1- ask the person! People that are depressed will answer yes when asked if they are depressed and research showed this to be as effective as fancy scoring inventories;
2- Ask “Do you have many interests?” In depression, the answer is no. In CFS/FMS without depression the answer is “I have a lot of interests. I am frustrated I have no energy to do them!”
Of course you know I love a high tech approach;-)
LOL! Love it. Simple and effective.
I’m just wondering if anyone else has chronic lymphocytosis. I know that folks with connective tissue disorders and viral infections have lymphocytosis but I had it for years, was started on antiviral therapy and it went away. Still taking antivirals but its back again. Any ideas? This was a particularly bad winter where I live and we had over 5 feet of snow this year, so spent most of the winter hibernating.
Hi new to this group but found the article and comments most interesting. I can relate to quite a few of the issues.
I was diagnosed with dilated cardiomyopathy (an enlarged and dmaged heart muscle, just over 4 years ago which is thought was caused by a virus, as I was extremely fit, a trained dancer and health and fitness teacher leading a very healthy lifestyle. .
However I had medium to severe heart failure and a multitude of heart arrhythmias. Fortunately I have made pleasing progress on medication and my heart function has much improved and so I am able to after a time of recuperation, lead a much more active life, although I still require regular cardiac reviews.
During the early days of my diagnosis I acquired yet another nasty virus that lingered for a while and was of so much concern to the heart nurse that was taking care of me, my cardiologist checked out my heart function again. I also had a very bad dose of shingles from which I still suffer quite severe nerve pain. I also have had repeated UTIs.
I now suffer from episodes of unexpected exhaustion with accompanying aches, sudden pockets of pain and soreness and I seem to hit a brick wall, become pale and glazed, often cold and just need to lay down. I have explained this at my GPs for well over a year now and they have now conducted a wide range of blood tests to rule out other possible causes and thankfully they all seem inconclusive
My GP has talked about CFS/fibromyalgia and mentioned anti depressants. I am not happy about the latter as I consider myself anything but depressed. I have always had a great zest for life and I remained very positive even during those initial early days of my cardiomyopathy diagnosis, I kept my self extremely focused on taking up activities that would help such as, tai chi, meditation, mindfulness, and writing for therapy and I have self published my own poetry books.
I have regained the confidence I suddenly lost as one of my main symptoms of cardiomyopathy was blacking out. I can now travel far and wide on my won to various events and activities, although driving a distance is problematic as i can suddenly become so tired and am unable to drive properly and there is the risk I could fall asleep at the wheel. It is the ‘ut of the blue exhaustion with the accompanying aches and pains that are a major problem for me and if the only thing they can recommend is anti depressants then I am stumped!..
Sorry this is long winded but early days and needing answers but not convinced there are any!?
I think we’re a bit short on ‘answers’. Glad you’re able to get around more though – that’s encouraging. Good luck1
Fatigue is also known as tiredness, reduced energy, physical or mental exhaustion, or lack of motivation.
Causes of fatigue can be psychological, physiological, and physical.
To diagnose the reasons for fatigue, a doctor will ask questions and take a sleep history, and may perform a physical examination and blood and urine tests.
Treatment is focused on the underlying cause of tiredness.
My husband had to go to Australia when his mom died this year. I told him not to come back without a diagnosis as we don’t have insurance in the US (I’m American). Turns out, as I suspected for many years, he was misdiagnosed with clinical depression and fed anti-depressants for ten years! He has CFS. He never sleeps; his sympathetic nervous system pops on as he falls into sleep – all night long. He is in pain. He can’t remember telling me something only hours before. He’s miserable. I have him on an adaptogenic herbal support system and he has cut back the smoking and caffeine tremendously, but I can’t get him to quit smoking entirely yet. He’s eating foods that provide mitochondrial nourishment and we’re hoping he can stabilize and improve at least a little. I had a gastric and esophageal issue that is in the stages of reversing itself after 6 months of constant herbal and dietary support so I believe a body can heal, as long as we can find the right support for it. Fingers crossed. he’s a good man and feels not like a man at all since he can do almost nothing. We only got married 2 years before he fell apart from this 7 years ago. The only thing is, I want to do things around the house but he butts in and then does it so he can contribute and then he’s exhausted. I can’t leave these things undone forever, but I don’t want him to hurt himself more.
Chronic Fatigue fits my problems perfectly. I WANT to get out of bed but I lack the physical energy. My energy drains after I exert myself. I don’t have any suicidal thoughts and though I’d say I am depressed to some extent it’s because I don’t have any energy. There’s so many things I WANT to do (work/go out/travel) but I’m physically exhausted. Any time I try to explain this to ANY doctor they say “oh that’s depression”. I’ve been on a laundry list of SSRIs which did literally nothing to help me at all. If anything they made a lot of stuff worse. I’ve been going through this over and over for 7 years and they just keep telling me “You’re depressed”. I have friends with major depressive disorders, friends who won’t get out of bed cause of depression. Even they are like “Yeah you definitely aren’t the same as me”. How is it I can’t get any doctor to take anything I say seriously? I just flat out stopped going to them.
This is so helpful and I plan to share it with friends/family. The hard part for me right now is that my chronic fatigue has ultimately led to me being extremely depressed and I can’t tell where one ends and the other begins. This came after struggling for over 3 years to function, ultimately quitting my job “to rest and heal”, and realizing after 6 months of rest, I was still exhausted. Only then did I start to have actual depression symptoms and to feel hopeless.
I love the statement that depressed people don’t want to get out of bed, but ME/CFS you want to but can’t. I’ve been saying that through this whole thing but I get looks of doubt! That change is how I recognized my symptoms had shifted. I’m glad my Dr gave me a formal CFS diagnosis, so at least there is a record. At the moment they are trying to treat the depressed part but I am not reacting well to medication. (Apparently another CFS trait).