1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

Can you have ME or CFS without cognitive dysfuction?

Discussion in 'Cognition' started by jonnyboy, Dec 6, 2011.

  1. jonnyboy

    jonnyboy

    Messages:
    41
    Likes:
    25
    Kent, UK
    Since I got unwell in Feb this year and consequently diagnosed with cfs/me around may/june. I've always been wondering if I've had the correct diagnosis. I do wonder if infact I dont have CFS, but just have a form of dysautonomia (mostly likely POTS).

    The reason I'm wondering is that one of the main features of ME is one of cognitive problems, and I dont seem to have this, or at least not to as great an extent as my level of physical disability would predict.

    In terms of my physical level, I'm fluctating around 2/3 out of 10 on the ability scale, so I have to spend a lot of time in bed or on the couch. Being up on my feet for as little as a minute is enough to make me start to feel unwell, and some rough HR measurements would indicate I have POTS, I also get pooling in my hands when I stand for long enough.

    Now in terms of cognitive level, my job before I got ill, and subsequently lost it last week, was as an IT programmer. So its a fairly intensive thing mentally. Even when I've been at my most ill and bedridden for up to a week, I've still been able to do this. Thou not as well, but the reduction in my ability to do it hasnt diminished by lack of mental processing, more because I dont find it easy to work while i feel so ghastly.

    I can also sit and read books or watch tv/films or go on the internet all day long without a problem, chatting on the phone isnt as easy thou, but I can do it.
    The only cognitive probs I do seem to have are a mild sound sensitivity, and continous adrenaline type feelings that arent mentally induced.

    So to summarise im probably operating at less than 3% of my pre-illness activity levels, and at around 90% of pre-illness mental activity.

    Just wondering if anyone else has profound physical disability with this, and little to no cognitive impairment, or whether I'm an anomoly and perhaps 'just' have dysautonomia?
  2. L'engle

    L'engle moderate ME

    Messages:
    938
    Likes:
    405
    Canada
    Seems people vary in this regard, whether they have physical or cognitive problems or both. Most of us have some level of both, I think, but there are people who only have one or the other. I'm glad your brain still works, hopefully you can find ways for more physical ability.
  3. mellster

    mellster Marco

    Messages:
    787
    Likes:
    157
    San Francisco
    Don't know whether you live in the US, but if you do, you should check out www.cvacsystems.com and see if there is one near you to give it a try (you only need to be able to sit for this therapy).
  4. wdb

    wdb Admin

    Messages:
    795
    Likes:
    538
    London
  5. Jenny

    Jenny Senior Member

    Messages:
    1,223
    Likes:
    172
    London
    Hi jonny

    Like you, I don't have cognitive problems. I've spent years in bed writing academic journal articles and reading post-grad essays and theses with no problem. In my early years with this though (25 years ago) I had a short period where I couldn't think of names for things, but haven't had that since.

    I just feel like I've got a severe case of flu, coupled with a poisoned feeling and quite severe pain. This has been more or less continuous for years, though with occasional let ups.

    I was diagnosed with autonomic dysfunction too and also have the constant adrenaline 'wired' feelings.

    It does seem quite rare for an ME sufferer not to have cognitive problems. I'm very grateful I don't. Just about all I can do at the moment is read, write and watch TV.

    Jenny
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,857
    Likes:
    748
    Concord, NH
    I used to have really bad cognitive dysfunction.

    Perhaps you are doiing something that keeps your cognitive dysfunction from being worse than it could be? Also, we are all different, so perhaps a minority of people do not have cognitive issues?

    GG
  7. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,581
    Likes:
    7,111
    Amersfoort, Netherlands
    I got sick in February this year too. Maybe we're a cluster! :D

    But some symptoms do seem to take longer to develop. For me, I started with PEM, then NMH a few months later, then sleep problems a month or two after that. Do/did you have PEM? That would be a big indicator that you have ME/CFS, not just OI.
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,134
    Sth Australia
    I hate to say if but seeing you got your CFS only since this February, maybe the illness is still developing and you could get many more symptoms at a future time. My own brain wasnt affected early in this illness even thou I kept on ending up in bed with flu like symptoms for the first 9mths.. I was still able to study at first. So maybe its too early for you to tell exactly if its just POTS or ME.

    But yeah.. those who have ME usually have MANY symptoms and I'd be suspect that it may not be ME if you dont have a lot.
    Actually brain issues often feature in POTS too.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,134
    Sth Australia
    Dr Brian Hyde has written about how severe POTS can stop some ME patients from being able to over exert enough to be triggering off PEM. (this can stop the normal rule that one has to have PEM for ME). I myself are hardly able to trigger off true PEM nowdays due to that very reason, (not being able to be on my feet for long makes it hard for me to be able to over excert to the point where I'll have many symptoms the next day), thou I clearly have ME which started off the classical virally way and still does show viral symptoms at times.

    Johnny boy.. the following link may be of interest to you http://wwcoco.com/cfids/bernesx.html
  10. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    147
    Italy
    Hi Jonnyboy,

    Have you been tested for Addisons disease, Lyme disease or pernicious anaemia?
    All of these have symptoms that overlap very closely with CFS but don't have, or in some cases don't have, cognitive dysfunction.

    I'd suggest you read up about these and see what you think. Try to find websites that have first person accounts of how people felt and how the illness progressed while they were spending months or years trying to get diagnosed!!!! These are usually much more helpful than reading a bullet point list of symptoms summarised from a medical book.

    Based on your brief description,
    I have to spend a lot of time in bed or on the couch. Being up on my feet for as little as a minute is enough to make me start to feel unwell,
    Made me think of addisons or lyme

    I do seem to have are a mild sound sensitivity
    is VERY Lyme disease

    I have POTS, I also get pooling in my hands when I stand for long enough.
    could be pernicious anaemia

    How are your guts by the way? I think it would be quite atypical to have CFS with neither cognitive dysfunction and no gut problems either. In that case I really would want to look very hard for every other possible diagnosis before allowing doctors to throw me into the rubbish bin they call CFS.
  11. Calathea

    Calathea Darkness therapy

    Messages:
    1,083
    Likes:
    527
    Scotland
    I didn't get cognitive dysfunction until my second year. In the first year, I was very fluey, including body temperature all over the place in a big way and sleeping 16-20 hours a day.
  12. jonnyboy

    jonnyboy

    Messages:
    41
    Likes:
    25
    Kent, UK
    Thanks for the replies.
    Taniaaust1 - what you said about having bad POTS, and as a result you dont get PEM. I think that aspect does apply to me, I've only managed to get PEM once, but apart from that I cant stay upright long enough to really do any activities to fully tire me out. If I'm on my feet long enough to say make a cup of tea, I feel dreadfully ill doing that, but within a few minutes of sitting or lying down, I quickly return to a level of illness I can tolerate. I seem to have constant background malaise lol

    Oddly enough I've looked thru all the definitions of ME/CFS above, and despite how disabled I am, I wouldnt qualify under any of those criteria at all. Largely because two of the most widely used criteria, pain and cognitive problems are absent for me. On the other hand I have experienced a whole multitude of symptoms that seem common to ME/CFS such as muscle twitching, myoclonus, heart palpitations, low body temperature, sleep problems and too many others to list. At the illness onset, I wrote down a list, and it had 25 symptoms on it.

    As for other illnesses, I think I was checked for addison's (well I had my cortisol blood levels checked in the A.M), also had serum b12 done, which was high rather than low.
    I've not been checked for lyme. However I'm not sure how likely this is as a candidate anyway. Never remember being bitten, no rash, also my rapid onset was after lots of stress and pushing my body too hard. Plus I live in a town and dont venture into the countryside much. I could be wrong about all that, I know that plenty of people dont recall a rash or a bite, but my cfs onset def seems to fit into the 'yuppie flu' type. You know, young professional who burned his body out, working and training all hours.

    Athene what you said about gut function was interesting too, I did have gut probs about 1 month into the illness for perhaps a month. Cutting out yeast and heavy carbs helped that, but now I've reintroduced those without a problem. That said, I tested positive for candida albicans in my stool recently, along with the parasite blastocytis hominis. My gut secretory IGA was abnormally low, so I'm wondering if I just don't have the immune response to get reactions anymore.

    One thing I didnt mention earlier, I do get congnitive problems if I've been standing up for too long. At this point I can barely say my name lol

    Oh and finally another thing I dont seem to have 'good' days and 'bad' days. Rather I just seem to have bad days, or more specifically my level of functioning is pretty much the same everyday.
  13. Marco

    Marco Old blackguard

    Messages:
    1,136
    Likes:
    736
    Near Cognac, France
    High jonnyboy

    My initial symptoms were unable to tolerate aerobic exercise; IBS and urinary frequency; depression; mild POTS (initial dizziness on standing); cold sensitivity and muscle aches and pains. I didn't notice any cognitive problems until ten year in.

    I don't now generally have POTS, cold intolerance or much in the way of pain. On the other hand cognitive problems are probably my most disabling symptom.

    Everone seems to vary with this illlness and the range of symptoms may vary with time for the same individual.

    PS - My level of functioning is similar from day to day and always has been.
  14. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    To me the symptoms you describe sound like cognitive issues. The phone thing and the few others you mention. My physical symptoms are much much worse than my cognitive but I still consider myself as having cognitive issues too. I also realized that sometimes I think my cognitive issues may actually prevent me from realizing I have cognitive issues in that I may be too out of it to realize I'm out of it, it just feels normal once it's your everyday reality. Anyway I'm no expert but I wouldn't rule out that it's ME just because your cognitive issues seem mild compared to the physical, but that's just my very very lay opinion, I don't remember what specific cognitive issues are listed in the definitions.

    And like it was pointed out earlier things could still change and evolve. Hopefully they will do so for the better of course.

    I find I'm able to do certain mental tasks quite well but other cognitive abilities I am more deficient on so I don't take being able to do work that requires cognitive skill to mean that there aren't other existing cognitive issues. I'm not sure how well I'm expressing myself here, I need to sleep! Anyway I hope I don't sound pessimistic or negative, but it took me a while to really realize I do have cognitive issues so I thought I'd share that in case it's relevant.
  15. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    243
    Hi Jonnyboy, My opinion is that you should get further medical investigations done before you accept an ME diagnosis, POTS can be caused by a lot of different illnesses which also have the other symptoms that you mention, this article here explains what these other illnesses that cause POTS are http://www.dinet.org/what_causes_pots.htm

    I feel that you need to find a doctor who will intensively investigate your symptoms, and systematically rule out all other possibilities before you accept an ME diagnosis, this is after all what the original doctor that diagnosed you should have done. Lots of people get wrongly diagnosed with ME, so it is very important to find a doctor who will rule out all possibilities, and its not sounding like this has been done for you,

    GP note book has some information on high levels of B12 levels
    see http://www.gpnotebook.co.uk/simplepage.cfm?ID=-1724579797

    Lab tests on line says High levels of B12 are uncommon and not usually clinically monitored. However, if someone has a condition such as chronic myeloproliferative disorder, diabetes, heart failure, obesity, AIDS, or severe liver disease, then they may have an increased vitamin B12 level.
    http://labtestsonline.org/understanding/analytes/vitamin-b12/tab/test

    Liver and heart problems and diabeties can all cause POTS, So as you can see there are lots of possibilities, medicine is never simple, but its important to get all other possibilities ruled out just in case.

    All the best
    wdb likes this.
  16. Cindi

    Cindi Senior Member

    Messages:
    196
    Likes:
    14
    I did not have cognitive problems during the first 10 years of my illness. I was fully productive. I was an IT system analyst,too..:).. When total exhaustion hit,cognitive problems started. Best wishes.
  17. Mij

    Mij Senior Member

    Messages:
    583
    Likes:
    600
    I didn't have cognitive issues until 10 yrs into this illness. These cognitive issues and insomnia only started when I was improving and began to exercise a little. I have started taking l-aceytl carnitine, lipoic acid and fish oils and this is helping.

    I don't know if you have ME but don't do any aerobic type exercise, even on days you feel you can, it makes it all worse.
  18. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    837
    UK
    Just to add another variation on cognitive issues. My ME onset was fairly rapid (a sore throat/flu refused to go away). Severe cognitive issues followed (recognition, word finding, speaking at all, vision, hearing - sensory overload) were all affected apart from all the physical. This aspect has improved enormously with use of the recommended ME supplements over time for general health. 5 years ago I could not write this even - though still slowed somewhat - musculoskeletal problems remain.
  19. Graham

    Graham Senior Moment

    Messages:
    775
    Likes:
    1,824
    Sussex, UK
    Hi jonnyboy

    Just a small bit to add to the good answers you have had so far. I used to teach maths, and as far as using the internet, performing maths calculations, creating spreadsheets, programming (OK - not at a very sophisticated level), reading etc are concerned, people wouldn't really notice any change in my cognitive ability - but all that is pretty linear, one-track thinking. Send me to a busy supermarket with a list of more than 3 items in the wrong order, ask me to explain something to someone who isn't mathematical, have someone ask me questions with a background noise (like online phone banking), put me in a group of people chatting, and I fade away pretty quickly - in other words anything that needs parallel processing does my head in! Even teaching maths, which is something I could do almost instinctively, has a limit of 45 mins to an hour before I become garbled.

    But, of course, I am one of the lucky ones - many people are much more severely affected. And that's the heart of it - ME is rather like a stroke: it seems to have a common core, but can have a very different balance and depth of effects from person to person.

    Personally, I think the biggest marker for ME is the time it takes you to recover from going over your limits - the delayed payback. Managing that is the important part.
  20. Calathea

    Calathea Darkness therapy

    Messages:
    1,083
    Likes:
    527
    Scotland
    Graham - what you describe could also be Auditory Processing Disorder, which seems to be pretty common amongst ME sufferers and also folks on the autism spectrum. There's a thread about it here somewhere. As far as we can tell, I've had APD all my life, as certain features of it were apparent from birth, but I managed to compensate for almost all of it with high intelligence, and it didn't become disruptive until the ME exacerbated it. It's only recently been recognised anyway, no one had heard of it when I was a child.

    I agree about PEM being the biggest marker for ME. It's always the first thing I ask about if I'm talking to someone who thinks they may have ME, or where I'm wondering if they have ME.

See more popular forum discussions.

Share This Page