My Big List of CFS Symptoms

My diagnosis is PVFS (Post Viral Fatigue Syndrome) / CFS (Chronic Fatigue Syndrome).  Also known as ME and in the USA as CFIDS (Chronic Fatigue and Immune Deficiency Syndrome).

DX Unknown commented on another of my posts and asked:

“I’ve been told for many years now that CFS was probably the cause of my episodic fatigue, but it wouldn’t explain all the other stuff. Still, over and over, I meet people such as yourself who are experiencing a WIDE range of symptoms. Here in the states, many doctors still believe symptoms like IBS and constant headaches (to name but a couple) are “rare” abberations of CFS, despite article after article in medical journals about how common it is. I guess I’m having to question if maybe it has been CFS along and my doctors just don’t appreciate how many other things go hand in hand with it.”

You can surf and find list after list of symptoms associated with CFS.  Many believe that CFS is a blanket diagnosis for multiple complex disorders.  Others believe CFS is not the same as a firm diagnosis of ME – CFS is for people who suffer fatigue as their main symptom whereas ME sufferers are the real multiple symptom sufferers.

I’m not going to get bogged down in names and who is deserving of being a genuine sufferer and not just with a general fatigue disorder (possible induced by stress, etc).

All I want to do is give you my list of symptoms, all of which I have read can be attributed to CFS/PFVS/ME/CFIDS – although not every symptom is on every list!  This illness is so vague and there is so little firm information – it drives me crazy sometimes!  But here it is – a personal description of what happens to me.

My doctor gave me a fact sheet about CFS when she first gently suggested that it could be CFS.  The list of symptoms presents itself as a definitive list and they say it’s unlikely you will suffer all of them.  Ha ha ha.  I wish.  I do suffer with them all.  Maybe not every one on the same day, and the list changes over time and severity of each ebbs and flows.  But have no mistake this mysterious illness has many many very real and very unpleasant symptoms. (NB: I would say this fact sheet was a very good starting point.  But it is not definitive and I would argue strongly against Graded Exercise and CBT being appropriate listed as “treatments”.  But that’s for another post.  Just exercise caution with the fact sheet is all I’m saying).

I’ll use the symptoms on that sheet and that I find on other resources as the basis for my list.

My Big List of CFS Symptoms:

  • Fatigue / exhaustion.  A total lack of energy.  Like my battery is flat and any re-charge lasts no time at all. I have this day in day out, consistently, with no let up.
  • Unrefreshing sleep.  I need to sleep for 9-10 hours. Sometimes I need up to 12 hours sleep.  But I wake tired, fatigued and exhausted not matter how little or hom much sleep I get.
  • Post exertional malaise – if I overdo it I suffer crashing fatigue and exhaustion even worse than normal – often leaving me bed bound for days at a time.  Day to day I don’t get this because I am able to organise my life to avoid overdoing it.  But I live with it every day because the slightest pushing too far will bring it on.
  • Feeling generally unwell or malaise which is similar to feeling like you have the flu.  It’s not considered by many medical lists to be a symptom but it’s one of the major problems – you just feel … off colour really.
  • Pains – most commonly muscular pains (myalgia), joint pains, and headaches. Mainly it’s stiffness on my neck and shoulders plus headaches.  Often the headaches develop into migraines.  Most days I feel at some point like a migraine is imminent as I get that pre-migraine fuzzy yucky head.  I am currently taking medication that helps ease these symptoms.  I also get other muscle pain and joint pain from time to time.  This is transient and less common but does tend to linger when it occurs.
  • Mental (‘cognitive’) difficulties such poor concentration, reduced attention span, poor memory for recent events, difficulty to plan or organise your thoughts, difficulty ‘finding the right words’ to say, sometimes feeling disorientated. I also get slurred speech as I get more tired through the day or have a bad day.  Almost every day I have problems with concentration and memory.  I need a lot of help.  I find it difficult to deal with official business on the phone because I get confused so easily.  If I am having a bad day or have overdone it the cogntive problems get worse and worse.  I generally struggle with words, writing, speech and so on when I am particularly bad – but this isn’t every day.  There’s a sliding scale of how severe these symptoms are. 
  • Tenderness and pain from lymph glands in the throat/neck
  • Irritable Bowel Syndrome / gut symptoms.  I take medication to control this which works most of the time but still leaves me with some stomach and bowel problems, though not as severe as they would be without the meds. For instance I also get excess, wind, bloating, alternating diarrhoea and constipation.  Less commonly I also get abdominal pains and nausea (feeling sick). Occasional loss of appetite.
  • Weak muscles in limbs -when I stand or hold something in my arms my muscles weaken very quickly.  Sometimes my legs are shakey when I stand – usually when I am particularly bad.  Sometimes I can’t stroke the cat more than a few times without overwhelming tiredness in my arm.
  • Poor grip.  Sometimes my grip is just poor, sometimes I can grip ok but it leaves my hand and/or wrist aching for a long while afterwards.  This is a transient symptom and less common
  • Sleeping difficulties – unable to sleep, disrupted sleep, vivid dreams.  This isn’t every day but is around a lot of the time for me.
  • Intolerance to noise – some noise I just cannot stand at all.  Also, more realted to my cogntive problems I think, I find it very difficult to have noise when I am trying to concentrate.  So I find it impossible to have a proper conversation whilst the television is on.  Also often to write while music is on, etc.  I tend to spend my day with no music, tv or radio on as it’s more soothing that way.
  • Sensory overload – it’s very easy for me to get over-stimulated and that then worsens my symptoms.  My tolerance is very low.  Excitable conversations, dramatic or fast moving films, shopping centres and busy crowded places, and so on.  Again this could be linked to cogntive problems.
  • Intolerance to light – not so common but does happen from time to time.
  • Difficulties with balance – perhaps around half of the time.  Particularly bad in the mornings.  I also struggle with my coordination.  I often need someone else to carry things for me as I tend to drop them, or to do any tasks involving any skill!
  • Dizziness from time to time – never sure if this is part of my migraines or a sort of odd head that is normal CFS.
  • Disordered temperature control of the body – about a thrid of the time I have problems with my body temperature more severe some times than others. 
  • Increased thirst .  I find I need to drink more throughout the day than I did before this severe phase.
  • Recurrent infections – I went through a phase of picking up lots of little infections.  I also have had an ezcma flare up which has lasted throughout this latest severe phase.
  • Blurry vision – which I get frequently.  It’s believed to be the eye muscles tiring very quickly – just like the rest of me!
  • Rash – this is a symptom that appears more of patient groups lists than medical ones.  I believe I get a rash when I am very very exhausted.  Mine is like a bumpy heat rash that I get on my forearms and a few bumps raise on  the backs of my hands.  Sometimes on my arms it is like goose bumps in almost a solid circle.  I also get a sort of pale heat rash on my neck.
  • Crawling skin sensation – like I have insects crawling on me.  One day I managed to see it happen on my arm- where it felt crawly my arm hairs were standing on end with no external stimuli and the rest of my arm was normal.
  • Restless legs – infrequently but persists for several days at a time usually bed time or long periods of sitting.
  • Muscle twitching – moves around my body and happens every so often
  • Dry eyes – almost all the time they are drier than they were before my illness, some days more severe than others.
  • Odd pallor – usually when I am very tired or having a bad patch.  Sort of a greyness or absence of colour.
  • Sore throat and difficulty swallowing – infrequent.  Sore throat presents as sort of a swollen feeling, about to start a bad sore throat and difficulty swallowing is minor but annoying. 
  • Shortness of breath – not on an asthma type scale but sometimes my breathing feels quite laboured and a lot of effort.  I also find I am very short of breath after a big effort like walking upstairs or making a cup of tea.
  • Sinus pain – occasionally and often also get it with jaw pain.
  • Teeth grinding (or possibly TMJ syndrome) – usually whilst asleep, sometimes unconciously in the day.  A dental splint has helped with this.
  • Sensitivity to stress – I’ve not found this on any lists but I suffer it and I know others who do too.  My tolerance for stressful things is greatly reduced and stress exacerbates my symptoms greatly – as quickly as physical activity does.  I avoid stressful things whenever possible.

I’m sure there’s more – but after such a long list my cognitive problems are kicking in!

It’s worth mentioning that all my blood tests for diagnosable conditions came back normal (including liver and kidney function, thyroid, diabetes, rheumatoid arthritis, lymes) and all there’s no sign of immune disorders and so forth (I am forgetting the right medical words!).

My other blood work which was “nothing to worry about” include red blood cell count which was high, but only just over the threshold of “normal”.  This test was consistent three times over 5+ months.  My cholesterol was slightly high.  My B12 was slightly high but I have been taking a large (2000 ug) dose of B12 so I assume without the suppliment the test would have shown low B12.  The suppliment helps only slightly however.

My white blood cells were up and down and all over the place when I had the intitial tests done – but I had som many “viral” infections it was difficult to get a consistent measure that wasn’t prejudiced by post or mid infection.

Here’s some sources of symptom list for you to check out so you don’t think I’m some kind of freak!

http://www.afme.org.uk/allaboutme.asp?table=contenttypetwo&id=4

http://www.wwcoco.com/cfids/bernesx.html

http://www.sleepydust.net/CHRONIC-FATIGUE-SYNDROME-SYMPTOMS.html

http://www.immunesupport.com/chronic-fatigue-syndrome-symptoms.htm

http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Course

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13 Responses to “My Big List of CFS Symptoms”


  1. 1 GrimRC July 28, 2007 at 1:44 pm

    Don’t trust doctors to interpret TSH tests (a particular thyroid test) for you! If your TSH is over 3, suppress it to about 1 and see how you feel. Also, get on SSRIs or tryptophan.

  2. 2 dxunknown July 28, 2007 at 4:16 pm

    SEE! This is EXACTLY what I’m talking about! The “long” list would explain so much, but I keep finding doctors who only have the “short list” (namely, fatigue and musculoskelatal pain). Then my case is further complicated by the fact that i have so many abnormal tests and idiopathic eosinophilia and hypoglycemia (low sugar) and now the positive SS-B antibody thing. Can’t thank you enough for sharing this and I think I will definitely discuss it with the rheumy in October. By the by, with Sjogren’s Syndrome it is about the same story… some docs think it is just dry eyes and mouth, while others think it is systemic and effects the entire body. No wonder we patients don’t stand a chance.

    Be sure to post soon about what treatments or self help you’ve tried and what works or doesn’t work for you. I know there is not one cure all, but relief of even a COUPLE symptoms is nice!

  3. 3 rachelcreative July 29, 2007 at 2:38 pm

    Your doctors shortlist for CFS is totally innaccurate!

    In fact the daignostic criteria say you should have more than just fatigue and diagnosis is possible without pain being a major symptom.

    The Canadian Guidelines are the preferred diagnostic criteria for CFS internationally. You can read the full document here http://www.mefmaction.net/documents/me_overview.pdf

    Here’s the criteria – apologies for the length of this comment!

    —-
    A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or
    fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations
    and one or more symptoms from two of the categories of autonomic, neuroendocrine, and
    immune manifestations; and adhere to item 7.

    __ 1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or
    recurrent physical and mental fatigue that substantially reduces activity level.

    __ 2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and
    mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue
    and/or pain and a tendency for other associated symptoms within the patient’s cluster of
    symptoms to worsen. There is a pathologically slow recovery period – usually 24 hours or longer.

    __ 3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such
    as reversed or chaotic diurnal sleep rhythms.

    __ 4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles, and/or
    joints, and is often widespread and migratory in nature. Often there are significant headaches of
    new type, pattern or severity.

    __ 5. Neurological/Cognitive Manifestations: Two or more of the following difficulties
    should be present: confusion, impairment of concentration and short-term memory consolidation,
    disorientation, difficulty with information processing, categorizing and word retrieval, and
    perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to
    focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload1
    phenomena: cognitive, sensory – e.g. photophobia and hypersensitivity to noise – and/or emotional
    overload, which may lead to “crash”2 periods and/or anxiety.

    __ 6. At Least One Symptom from Two of the Following Categories:
    __ a. Autonomic Manifestations: orthostatic intolerance – neurally mediated hypotension
    (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension;
    light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency
    and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional
    dyspnea.
    __ b. Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body
    temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of
    feverishness and cold extremities; intolerance of extremes of heat and cold; marked
    weight change – anorexia or abnormal appetite; loss of adaptability and worsening of
    symptoms with stress.
    __ c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flulike
    symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

    __ 7. The illness persists for at least six months: It usually has a distinct onset, **although it
    may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for
    children.

    To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is
    unlikely that a patient will suffer from all symptoms in criteria 5 & 6. The disturbances tend to form symptom clusters
    that may fluctuate and change over time.

  4. 4 Jacqueline L. Jones August 2, 2007 at 8:48 pm

    My new post is the latest of my attempts to help you and others like you to find solutions for mysterious health problems. Please read it with an open mind. The direct link is http://healthissuesunmasked.wordpress.com/2007/08/02/save-money-time-in-search-for-good-health-care-part-three/

    Click on the links in the post and in the various resource sections to the right. They should answer many of your questions. Feel free to contact me with further questions.

  5. 5 CB April 11, 2008 at 1:27 pm

    I would like to know if anybody else has this happen to them:

    I have been diagnosed with severe post traumatic induced Fibromyalgia, after an accident at work,( a really bad back injury, and the surgeries to (ha ha)fix it) for 6 years now. But the problem that I have that a absolutely CANNOT deal with is the bouts (I call them Flares), of this horrible crawling/burning thing that happens more often[now],on a regular basis. This has been happening to me for a while, but only once in a while. Now it’s anywhere from 1 to 5 times a week.

    I can almost tell now when a “flare”, is coming. Because I start to kind of need to stretch my body. It’s not a big hold your arms out, flex a leg type stretch. It’s a curled up (fingers & toes too), to, I don’t know, release the tension in my body. It’s pretty much the equivalent to what I call a “body yawn”). This will happen over and over during the day.

    Then the skin crawl/burning starts in my hands and arms. It then includes the trunk of my body, and quickly includes the legs. Plus, even before this happens, the muscle mass in my body is SO PAINFUL, that ANY movement, all day long, is just horribly tender and so achy, that getting up to use the restroom or let the dog out, is like nothing that I can describe.
    By now, I cannot sit still. I then need to start the “rocking” of my feet. I shake my hands rapidly, as if I can shake it out (to no avail). I get up to try and do something to see if I can “burn it off”. However, when doing anything the pain in my body that comes with this, is almost unbearable. So unbearable to where I MUST go back to the bed or couch. Still feeling like I MUST move my body, I often then curl up in a fetal position on my knees, and rock, to help the pain and sensations of the crawling/burning.
    Now the medications that I take for my Fibro and back are a Duragesic 100mc patch, Soma, Mirapex (for RLS), oral instant release morphine, Xanax, Wellbutrin XL, and Salagen for the horrible dry mouth (THIS is a life saver for those of you that have Sorjens(sp?) syndrome. It is just SO PAINFUL, that nothing helps.
    As far as the above 7 criteria, mentioned in the post, most of them are SPOT ON with what I too go through on a daily basis.
    It’s just these “flares”, in my body that I can handle. I take extra medication (quite a bit of a bump up), when one hits. The Soma, Xanax, Morphine and Mirapex, is what I take to try and quell it (to no avail), but to at least let me lay down and try to “sleep” it off, because I cannot stand the pain or feeling (physical)in my body.
    It’s happening more and more often. The Docs think I’m nuts, because I cannot really put into words as to what it feels like, when they do not have anything wrong with THEM. If they do not have FMS, or CFS, it’s like trying to describe to a man what it’s “feels like”, to grow a baby, and then give birth!
    I really just need to know if anybody in your CFS group, has had this happen. AND, what they do to alleviate, or tone down the “flare”

    Thanks a lot,
    CB

  6. 6 rachelcreative April 15, 2008 at 3:14 pm

    Hi CB. Poor you! How awful these flares sound.

    This is something I’ve only experienced rarely myself but I know it’s not uncommon.

    This FMS support site has been recommended to me in the past http://www.mdjunction.com/fibromyalgia.

    It sounds like what you need is to know you are not alone! I am certain there are many people who suffer in the same ways and will have tips to cope and to fight the cycle if at all possible.

    You might also try other support groups like:

    http://www.butyoudontlooksick.com/boards/

    http://www.fibrotalk.com

    http://www.menwithfibro.com

    All the best to you.

  7. 7 murbruk October 1, 2008 at 2:50 pm

    Hi there! I recognize all the symptoms you have listed above. I have been diagnosed with MS but I don’t think it explains all my symptoms. I have suffered from severe fatigue since my early teens but since I started using acetyl-l-carnitine combined with alpha lipoic acid it went away within a week. If I stop using it, it will slowly come back in about a month.

    Because it works so well against my fatigue, I suspect that the cause is something else than MS. I have started to suspect some form of metabolic myopathy as the cause to my fatigue and partly because I suffer from a strange muscle weakness that I don’t think MS can explain. I try to exercise but it is difficult due to the problems I have with my muscles.

    In general I’m very fit and I look healthy and normal. However, I have never been as strong as others and this was very problematic as a kid because I couldn’t keep up with the other kids. I have always wondered what is wrong with me and my diagnosis with MS 5 years ago was in a way a relief, but now when I try to keep myself fit, I find it more and more difficult and I don’t feel that MS explains it all. Of course MS has varying and different symptoms but the way carnitine and other supplements help me, but not other people with MS I have talked to, makes me wonder if there isn’t something else too.

    To you all out there who can’t get help from doctors, don’t give up! It took me 15 years to get a diagnosis and western medicine haven’t really helped me. They finally found what was wrong with me but otherwise they hadn’t much help to offer. All things that has made me feel better, I have found myself and they are all supplements. Medicines have only made me worse, in fact much worse.

    Today I feel better than ever but that doesn’t mean that everything is fine, I suffer from severe pain in my arms and I rarely feel well. Pain in my muscles is also getting worse and I would like to rule out metabolic myopathy so that I don’t make things worse with my exercise. It’s very difficult to get doctors to listen to my problems now when they can blame MS for everything, so I don’t have high hopes to ever find out if my other symptoms could be something else than MS and maybe it isn’t, who knows.

  8. 8 rachelcreative October 1, 2008 at 9:50 pm

    Hi Murbruk

    It’s so difficult isn’t it? A diagnosis is a relief yet it’s easy to write everything up as that diagnosis and not always really listen. Plus we have a lot more time to consider alternatives and research about our specific problems that doctors do.

    I’ve not heard of metabolic myopathy before. It makes me think about the things I’ve read about ME/CFS and theories about problems with mitochondria.

    I see you left another comment on another post so I’ll say more there :o)

    https://chronicallyme.wordpress.com/2008/07/22/d-ribose-week-14/

  9. 9 Anonna March 6, 2012 at 8:07 pm

    Thank you for this excellent, useful list.

  10. 10 Michael May 23, 2012 at 7:25 am

    Sounds like me! Pain after exercise is terribl

  11. 11 Michael May 23, 2012 at 7:42 am

    have cfc real problems as well with temperature etc. My liver enzymes were slightly raised onboth tests and i did have bad nasal congeston an i was so tired, i feel normal metabolism now but pain after exercise. My eczema can get bad. I hsve seborrhoeic eczema which is pften caused by immune reactions and often neurological problems.my memory and anxiety are so bad at times and so id the joint pain and recently jaw pain and mouth sores. I had convulsions s a baby and then had inflammed tonsils and adenois which had to be removed but also had chicken pox, so i am thinking a combination po f thesr affected my hpa axis and nervous/immune systems

  12. 12 annie November 5, 2012 at 11:05 pm

    omg!!!!!! it took my doctors 16 years to diagnose me i went threw every department in the nhs because i had severe chronic back pain it didn’t match up ???? but eventually i got referred to the nouro dept and bang the doc looked threw my long medical history an d was amazed chronic muscle pain from head to toe, chronic head aches ,temp leg paralis, spasms,blurry vision,extreme bad memory,muddled words,severe dizziness,unrefreshed sleeps, ecttt and the list goes on there are so many assumptions and ur doc never diagnoses it but keep pushing i wasn’t surprised to be honest now i cope with it due to the long time experiencing it i know my limits as i know it will land me in hospital as it hits me so bad when i do anything too extreme i end up either numb with no feeling showing the paramedics me stabbing my leg with no feeling or in chronic agonising pain and screaming the house down ,but good luck to all who have it a no what you r going threw but to those who are still wondering do i have it keep pushing you will get ur diagnosis xxxx

  13. 13 claire February 5, 2014 at 8:52 pm

    I could have written this list! I’ve had ME for four years and trying to manage it with help from my ME dept at the local hospital. It may sound odd, but it’s a relief to find that other ME sufferers have all of these symptoms also.


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