Dr. Berne’s Chronic Fatigue Syndrome (ME/CFS)/Fibromyalgia Symptom Checklist

Dr. Katrina Berne, a clinical psychologist and author who specializes in ME/CFS & FM, has developed a comprehensive symptom checklist she advises her patients to complete & take to their doctors. This form should be updated every few months to document your symptoms and your progress. It’s especially helpful in the disability application process.

Please indicate on a scale of 1 to 10 the severity and frequency of each symptom, with 10 being the most severe and frequent. Use the past two months as a general guide. If you do not have the symptom, leave the space blank. (Thanks to Dr. Berne for providing this list.)

DATE:

Fatigue, worsened by physical exertion or stress

Activity level decreased to less than 50% of pre-illness activity level

Recurrent flu-like illness

Sore throat

Hoarseness

Tender or swollen lymph nodes (glands), especially in neck & underarms

Shortness of breath with little or no exertion

Frequent sighing

Tremor or trembling

Severe nasal allergies (new or worsened)

Cough

Night sweats

Low-grade fevers

Feeling cold often

Feeling hot often

Cold extremities (hands and feet)

Low body temperature (below 97.6)

Low blood pressure (below 110/70)

Heart palpitations

Dryness of eyes and/or mouth

Increased thirst

Symptoms worsened by temperature changes

Symptoms worsened by air travel

Symptoms worsened by stress

PAIN

Headache

Tender points or trigger points

Muscle pain

Muscle twitching

Muscle weakness

Severe weakness of an arm or leg

Full or partial paralysis of an arm or leg

Joint pain

TMJ syndrome

Chest pain

EYES AND VISION

Eye pain

Changes in visual acuity (frequent changes in ability to see well)

Difficulty with accommodation (switching focus from one thing to another)

Blind spots in vision

SENSITIVITIES

Sensitivities to medications (unable to tolerate a “normal” dosage)

Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes,
hair sprays)

Sensitivities to foods

Alcohol intolerance

Alteration of taste, smell, and/or hearing

UROGENITAL

Frequent urination

Painful urination or bladder pain

Prostate pain

Impotence

Endometriosis

Worsening of premenstrual syndrome (PMS)

Decreased libido (sex drive)

GASTROINTESTINAL

Stomach ache; abdominal cramps

Nausea

Vomiting

Esophageal reflux (heartburn)

Frequent diarrhea

Frequent constipation

Bloating; intestinal gas

Decreased appetite

Increased appetite

Food cravings

Weight gain ( _ lbs)

Weight loss ( _ lbs)

GENERAL NEUROLOGICAL

Lightheadedness; feeling”spaced out”

Inability to think clearly (“brain fog”)

Seizures

Seizure-like episodes

Syncope (fainting) or blackouts

Sensation that you might faint

Vertigo or dizziness

Numbness or tingling sensations

Tinnitus (ringing in one or both ears)

Photophobia (sensitivity to light)

Noise intolerance

EQUILIBRIUM/PERCEPTION

Feeling spatially disoriented

Dysequilibrium (balance difficulty)

Staggering gait (clumsy walking; bumping into things)

Dropping things frequently

Difficulty judging distances (e.g. when driving; placing objects on surfaces)

“Not quite seeing” what you are looking at

SLEEP

Hypersomnia (excessive sleeping)

Sleep disturbance: unrefreshing or non-restorative sleep

Sleep disturbance: difficulty falling asleep

Sleep disturbance: difficulty staying asleep (frequent awakenings)

Sleep disturbance: vivid or disturbing dreams or nightmares

Altered sleep/wake schedule (alertness/energy best late at night)

COGNITIVE

Difficulty with simple calculations (e.g., balancing checkbook)

Word-finding difficulty

Saying the wrong word

Difficulty expressing ideas in words

Difficulty moving your mouth to speak

Slowed speech

Stuttering; stammering

Impaired ability to concentrate

Easily distracted during a task

Difficulty paying attention

Difficulty following a conversation when background noise is present

Losing your train of thought in the middle of a sentence

Difficulty putting tasks or things in proper sequence

Losing track in the middle of a task (remembering what to do next)

Difficulty with short-term memory

Difficulty with long-term memory

Forgetting how to do routine things

Difficulty understanding what you read

Switching left and right

Transposition (reversal) of numbers, words and/or letters when you speak

Transposition (reversal) of numbers, words and/or letters when you write

Difficulty remembering names of objects

Difficulty remembering names of people

Difficulty recognizing faces

Poor judgment

Difficulty making decision

Difficulty following simple written instructions

Difficulty following complicated written instructions

Difficulty following simple oral (spoken) instructions

Difficulty following complicated oral (spoken) instructions

Difficulty integrating information (putting ideas together to form a complete picture or concept)

Difficulty following directions while driving

Becoming lost in familiar locations when driving

Feeling too disoriented to drive

MOOD/EMOTIONS

Depressed mood

Suicidal thoughts

Suicide attempt(s)

Feeling worthless

Frequent crying

Feeling helpless and/or hopeless

Inability to enjoy previously enjoyed activities

Increased appetite

Decreased appetite

Anxiety or fear with no obvious cause

Panic attacks

Irritability; overreaction

Rage attacks: anger outbursts with little or no cause

Abrupt, unpredictable mood swings

Phobias (irrational fears)

Personality changes

OTHER

Rashes or sores

Eczema or psoriasis

Aphthous ulcers (canker sores)

Hair loss

Mitral valve prolapse

Cancer

Dental problems

Periodontal (gum) disease

© copyright 1999 and 2008 by Katrina H. Berne, Ph.D.,

 

 

38 comments

{ 37 comments… read them below or add one }

tania selth April 3, 2012 at 7:57 pm

Ive used Katrina Bernes list for years to take to me to doctors with the ones I have highlighted. I keep two copies of her list.. one which has highlighted all the symptoms Ive had with the ME over the 14 years Ive had this and a second list which has any symptom Ive had in past three months highlighted.

This way I (or whoever Im medically seeing) can easily hold the lists side by side and compare how Ive been in the past to how I have been recently

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Wendy Borowski December 31, 2012 at 1:28 am

Thank you for compiling this symptom check list. It will definitely help me with my Dr. appt. this week.

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joy February 11, 2013 at 12:04 pm

OMG. All the Above.

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mrs sharon dearden February 14, 2013 at 11:30 am

thank you so very much for this article, it’s surprising to find all these little symptoms are related to just one ailment.
All these years from the age of (as far as i can remember) 13/14 i have been suffering and it’s only been just over a year now i’ve been diagnosed by my GP now i’m aged 43 with 3 children 2 being young adult ages.
my sister got diagnosed with ME roughly 15 years ago, i suspect my mother had it , but she didn’t know and i feel as though i’ve passed it onto my eldest daughter who has always shown signs of this from an early age, makes you wonder if, once someone in your family gets it is it passed on genetically.

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medes123 March 12, 2013 at 2:29 am

i’ve experiencing most of the symptoms mentioned above

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Violet April 28, 2013 at 5:01 pm

Hi have had most of these symptoms over the last20 yrs and have many of them know iv been on antidepressant s over 10 yrs have some other symptoms not on list also have a problem with my blood I go to Manchester royal for test regalary they keep changing the Diogenes they think its a platelet problem my children have the same problems and two grandchildren my doc sayes I can not get diongenosed with me while I’m depress don’t know what to do very worried about my dauther who suffers from more pain then me as avert bad back and is sent to pain control doctors but can not get any other help all though she as all the same symptoms iv been with my docs all my life and don’t rEaly won’t to Chang any advice will be welcome I think this is in our jenes my mother and granemare had same problems they both died young

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Pat May 3, 2013 at 8:14 pm

List of symptoms more comprehensive than listed by Mayo Clinic

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Najade May 31, 2013 at 8:32 am

HI, I have more neuro, cognetive, muscle weakness and fatigure symptoms. I am still wondering whether I have been given the correct diagnosis?? I was first told Myasthenia Gravis, given mestinon, which worked. Then I was told to see another Neuro, and another, and they all contradicted each other. Now they say its CFS and to get a good homeopath. Whatever. Can anyone tell me if I should be having all the pain symptoms. Luckily I don’t!! Just muscle weakness in one arm, and legs after walking. Arm weak all the time.
Look forward to getting some suggestions.
Thanks a million in advance

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Kerry August 30, 2013 at 8:01 pm

I have the same as you, due to mostly nausea, cognitive, trouble with balance, weakness and tingling on left side only, visual blurring , I was sure it was MS, but neuro said no due to clear MRI and not having these symptoms be “visible” to her upon exam, so what is it I said ? She said she doesn’t know but as fatigue has been crushing the past month she said maybe its CFS, ( with a smirk on her face ) I don’t think she believes its a real thing. Try being in my body the past three months and you’ll see how real this thing is.

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Joy lee June 30, 2013 at 7:00 am

I was diagnosed with post malaise ME/ thyroid disease around 6 years ago, and suffer from most of the above syptoms, which are slowly getting worse, I just don’t function with out my tramadol medication, they seem to work on my muscels, making them less stiff, although the pain is still there in my hips, knees and legs, the tramadol doesn’t always work, so a heat pad is used. What I find hard to cope with is the constant sickly fatigue, this illness controls you, I have tried to fight it many times, but always suffer the next few days after any activity, just doing a bit of cleaning can exhaust me to the point of putting me to bed, it’s also affected my immunnne system, now I have auto immunnne disease, and my body is intolerant to most antibiotics, food and the sun, besides that I’ve lost my appetite and can get full on very little food.i have constant infections in my sinuses and mouth too. It’s like a living death, which there’s no cure, let’s hope they find one soon.

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Pam July 2, 2013 at 4:25 pm

I have had me/cfs/fibromyagia for thirty four years and have just been diagnosed and I am now going to Me/cfs clinic I have been in a dark cloud all these years my mother was diagnosed with MS and previously with ME I truly believe that this has been ME as I developed the same symptoms as my mother even down to the same two lower front teeth falling out for no apparent reason, my. Mother god bless her I watched her deteriorate in agony as she went on to develop RA and I developed over active thyroid disease both autoemune diseases . I sometimes think there is a connection , my son has now developed the same symptoms whom I saw the sighns in his early years (12) I haven’t mentioned to him that I have had a diagnosis , and yet he keeps asking questions as to when I first noticed anything was wrong as I did with my mother I hope to god that
Someone finds a cure for this illness . All these doctors that say its in the mind then I suggest that you take a look at the family’s that are suffering from mother to daughter to daughter to son and now my grandchild . T his living nightmare is not living its hell and anyone who tells you it’s not real, then I hope to god they never get it themselves..

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Heather wilton. July 3, 2013 at 5:19 am

just to say this is the best M. E. list to read its every symptom I have had this horrible M.E. for over 30 years so I do know it will never leave me.. I do get lots of good days.. Thank you for such a good LIST… Heather..

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John McCool July 3, 2013 at 3:46 pm

The list is fine, try finding a doctor who has even the slightest idea on how to treat any of these symptoms. Most,if you watch close, eyes actually glaze over if you mention cfs/ me/fibro. They have heard it so much but instead of believing you they think you are faking it. Even if you find a doctor who cares, what are effective treatments, they are all bandaid fixes, they may help for a week or two but that’s all.
What we need is to find a cure and demand money for research.
The thing is we will all be dead before they finally come up with a cure, and right now all we are living is a type of living death!

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Heather wilton. July 27, 2013 at 5:39 am

Hi I would like to say thanks to Pam for saying the Doctors thinks its all in the MIND.. I wonder how they would feel if they came down with this TERRIBLE ILLNESS.. I wonder how they would cope, I don’t think so, I have lived with this for 30 years.. THANKS PAM, HEATHER…

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Kelly September 15, 2013 at 7:08 am

I have not yet been diagnosed with any disorder. However, I can relate to some of these signs. I have had no energy or lots of energy forever, has anyone have this happen to them? I was diagnosed with bipolar 14yrs ago. Therefore, I suffer more from depression than the highs. Maybe I also have CFS. I get so tired that I, at times, am unable to drive due to feeling like nodding off at the wheel. I am having all kinds of blood work done, as well as have had a Sleep Apnea test done, no results yet. I don’t suffer from much pain in my body, however, I do suffer from being lethargic, no energy. How were you diagnosed with CFS? Is there a type of test to take? Is there any meds that are taken to help with it? I have been on numerous antidepressants, anxiety etc., for my bipolar…

Any info., or advice would be greatly appreciated…

Thanks,

Kelly

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Jocelyn September 29, 2013 at 12:00 pm

I am soo scared I ave almost all d symptoms altho ve nuh bin to d hospital yet. And I dun even know what u all r talkin abt dis is scary

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Håkan Knutsson September 30, 2013 at 11:25 pm

Hi all i have most of these symtoms but no diagnose yet but ihave more things that are wrong so they are working on sorting me out ;) Got a chronic lower back injury and adhd and the symtoms above and more. So you people are not alone! I also want to give an advice to some of you that are using Tramadol and other meds like it. My wife have fibro and more diagnosed and we both used tramadol before but im on heavier meds now but shes still on the tramadol level of meds. But we hated all the side effects and that u couldnt get tramadol in 50mg retard(extended release) but instead you had to use the 100mg to get that effect, and then u have all the bad side effects involved with tramadol so i decided to really look into a substituteand found one. So here comes the advise all of you should look up a medicine called GEMADOL wich is just another form of tramadol but u can get retard/extended release from the 50mg pills and the effect is alot better and atleast from what i have been reading and from my wifes experience of these pills the side effects are down to a minimum with the GEMADOL. We live in Sweden and here the doctors get a advice or proposal on what drug to give the patients from their computer system based on the problems etc BUT they can also just search the system for a certain medicine and prescribe that instead and as said these Gemadol is way better and when we asked our doctor if my wife could get Gemadol instead of tramadol he just said sure and gave my wife a prescription for it without any problems or questions. We have given this advice to alot of people and it works good for all of them. So please look up Gemadol to lessen the stress on your bodys from the medicine you acctually need to live as good as possible! Hope it helps someone! Kind Regards Håkan in Sweden :)

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Dawn October 22, 2013 at 2:59 pm

Hi,
I’ve had M.E. for the almost 5 years and it’s been 5 years of hell and it’s only moderate (!) goodness only knows how it is with those who have it severley, my heart goes out to them, because this is hard enough. The list of symptoms made me squirm in my seat as I read through them and IDENTIFIED with many of them. I recently started getting faint which is new and I don’t like it, it makes me afraid to go out alone and my gp (who’s very supportive) has advised me not drive until I’ve had heart tests and they’re clear. I’m complyiong but it’s SO hard, another piece of my independence and freedom is gone, but hopefully temporarily. I’m going to join the ME association and have ordered some information leaflets, because it’s not just hard for me but for my lovely family who have to live with me. This is a silent and often solitary illness with much prejudice, we need a voice.

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Kathy November 6, 2013 at 2:50 pm

I have had CFIDS/fibromyalgia seemingly since childhood, but doctors have also told me they are/were certain that I have M.S. and myasthenia gravis also. I don’t know if I have them too; oddly, a dog I adopted from a rescue group suffers from many of the same symptoms, including hypothyroidism and muscle weakness and atrophy.

I am 51 years old now, and it’s not getting easier. I will be prescribed medications that initially seem to work for me, and I might get a good two or three days of 25 percent of the energy I used to have when I wasn’t as ill, but the symptoms quickly return. If more men had these symptoms, I’m sure there would be a cure — or at least better treatments — available.

I have been on disability for years, which I hate because I loved my work, but I became ill with tachycardia due to an irregular arrhythmia/heart beat I didn’t know I had as well as experiencing sudden episodes of amnesia, not knowing where I was, where I was going, what I was working on. I desperately tried to get off of disability and keep working but my boss insisted and she was right. I have only gotten worse. I cannot imagine having such complete lack of control over one’s mind and body while trying to work.

If I knew this was coming, I would have lived my life so much differently than I have. I would have taken more vacations, said “no” to working overtime and taking on big projects, had more fun, spent more time at home with my dogs and taking my nieces and nephews out to the fair, to museums, restaurants, movies, etc. I would have saved more money and tried to hold on to at least one friend I had in my “former” (healthier/not as sick) life. Because a lack of help has brought on more stress and more illness.

I would advise everyone to not push yourselves if you have any control over your situations at all. Take all your vacation time/paid time off and then some. Ask for reduced hours. See if you can live on less than you are today. Don’t worry about what other people think. They don’t have to live this non-life we are living.

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Alison November 19, 2013 at 3:33 pm

I am currently off work with yet another bout of CFS/ME. Apparently my symptoms are classed as ‘mild’. Well if this is mild I would hate to be moderate or severe and my heart goes out to those who are.
I have decided that i need to change my life and stop fighting this illness. I thought I could beat it by struggling on working full time, taking my dog out for long walks and generally continuing being active just like I was before this CFS/ME first started. I have already requested my employer to reduce my hours to part time, have employed a dog walker and now use pacing techniques to enable me to at least do some activities. I have also asked my GP about the use of LDN for CFS/Fibromyalgia but he knew nothing about it and has asked me to print off that information for him to review at my next consultation with him!
I have found this site very informative.

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joy Hillman December 5, 2013 at 8:58 pm

hi Dr. Berne: I hope you are doing well. Thank you for all of the help you’ve given us. : )
Joy

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Nicole February 21, 2014 at 10:36 am

Thanks for providing this comprehensive checklist. I am sure many will continue to find it extremely useful.

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Victoria Daniel March 2, 2014 at 3:01 pm

It’s great this doctor can help family and friends of patients with this awful illness. I’ve had it for nearly 6 years and still my friends and family don’t understand it completely. Hopefully by reading this they can understand the daily issues I face!

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Simon Teale April 9, 2014 at 2:50 pm

Hi
i am at the stage of being transferred to specialist cfs hospital i have had more or less all of the symptoms at different times,my question is has anybody out there tried and succeeded in getting pip

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Randy Nordman May 7, 2014 at 2:10 am

I have had severe ME/CFS for appx. 12 years, which went un-diagnosed until several months ago.
My symptoms were very severe. I slept 20-22 hours every day for 4,5,6,7,8 days in a row. When I came out of that cycle I would feel “spaced out” and almost disoriented. I would be awake for about 2 days and then back to my sleep cycle…This laste for 5 years straight. I lost (2) business’s in the process. I saw every Dr. (specialist) you could possible name. Put on amphetamines just to try and keep me awake, anti-depressants and anti-virals. All to no avail.
I recently was accepted/qualified into a clinical study/trial at Stanford University..(only 120 patients in the U.S. were admitted). The results so far are almost not believable! I feel like a new person… my friends and family are astonished in my recent transformation. The most profound change for me in all this is that my head is “clear” and can actually think straight. I would like to share w/ people (in any fashion) w/ my story, experiences and (knock on wood) my marked improvement. I share many common experiences and frustrations w/ everyone on this site and hope maybe I can be of some help to some of you…. God does work in mysterious ways!
Thanks for listening….Randy

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Bob F May 7, 2014 at 2:23 pm

Hi Randy, I’m ecstatic to hear about your treatment success!! How can I learn what Stanford did for you….treatments et al? Who should I contact? Any practitioners in Orange County? Thanks a bunch! Bob Feigenbaum

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Marie May 31, 2014 at 3:00 pm

Randy, could you say more about the treatment appraoch at Stanford. Thanks. M

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Dagny May 31, 2014 at 4:42 pm

Yes, PLEASE share any information you can! I’m so eager to hear what you did and how it’s helped. I’ve been struggling with this for the last 2 years and have seen every specialist and put on every drug imaginable– all to no avail. Still have all my symptoms and seem to be getting worse as time goes by, even with the current meds my Doc has me on. I have been clinically diagnosed with ADHD/Generalized Anxiety Disorder/Fibromiallgia/Migraines but I’m still having much of the problems on this list.

Anyway, I’m happy that something has worked for you and hope that it continues to! Please share the information :)

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michelle July 17, 2014 at 6:42 am

hi randy
would you be willing to share your new changes and how they have came about – ie therapy, treatments etc
thanks
michelle

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Bob F May 7, 2014 at 2:18 pm

I’ve had CFS since 12/09….trying to find a real specialist doctor in Orange County, CA
Thanks for your help!

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peter May 12, 2014 at 12:37 am

pain and musculer weakness

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peter May 12, 2014 at 12:41 am

am very gratfull for the list it help a lot, Thank you.

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louise May 19, 2014 at 2:53 pm

Thank you for this list. I am concerned as I have been suffering with M.E twelve years, but two years ago began having seizure like activity. I was sent for testing for POTS they could see a drop in blood pressure but not significant enough to call it POTS. I had epilepsy tests nothing showed, the neurologist suggested I was suffering form psychogenic seizures and recommend psychologist, when I spoke with other M.E/CFS suffers few had heard of seizures in the illness. Can anyone shed light on this for me, is there research etc.

Thanks for your time and precious energy

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Heather July 3, 2014 at 3:54 pm

Hi Louise, I have had cfs/me for 10 years and diagnosed with Fibro about 18 months after. I was also diagnosed with hypothyroid Jan this year. I have just been referred to a neurologist because my seizure-like episodes which I have had for the 10 years are worsening. I have even become temporarily paralysed down my left side during some of these episodes. I never lose consciousness but cannot speak and struggle to breath. Most times I cannot keep my eyes open. My arm/s shake violently which is excruciatingly painful and sometimes my elbows lock in position. To an outsider this looks like a seizure but it isn’t. My MRI scan was clear too. The neurologist has said this May be a form or migraine. Interestingly it is reckoned that 75% of cfs/me suffers have migrain.

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louise May 19, 2014 at 2:55 pm

Thanks for your time and precious energy

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Mary Beth Williams June 6, 2014 at 2:35 am

Omg!! Im not going insane afterall.
Over the course of Couple of years, I have been making frequent visits to the doctors, complaining about 69% of these symptoms that occur on a regular/daily basis.
The past 21 days have been the worst ever.
The hot but cold sensation, headaches, lethargy spending 95% of the day on the sofa with no energy at all to move.
Simple things like washing dishes make me breathless my mouth constantly dry thus making me thirsty.
Ive lost 11lb due to loss of appetite.
I did mention chtonic F Syndrome to docs before, but they made me feel like a hypochondriac!!
I shall take this list to the doctor. I am going out of my mind and this however stressful the diagnosis, will enable me to worry less and deal with my symptoms better.
Thank you

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pam June 16, 2014 at 10:17 am

How many of the symptoms does one have to exhibit to receive a diagnosis of M E?

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