Cognitive symptoms and CFS

Discussion in 'Fibromyalgia Main Forum' started by ktp812, Jan 2, 2010.

  1. ktp812

    ktp812 New Member

    I am in the process (again) of going through all the tests etc from my new doctors to try and figure out what is wrong with me. I became sick in 2004.

    I am wondering in order to truly have CFS do you need to have cognitive dysfunction? I have none at all and never had from the very beginning.

    My two most prolonged symptoms are the chronic fatigue/exhaustion/low stamina and muscle twitching/burning/stabbing/shooting/icepick pains in my calf and foot.

    The fatigue is what disables me daily. Sometimes I am just extremely tired, sleepy, heavy or all of them.

    I have had many many other symptoms over the years but these two are the ones that are constant. The others come and go.

    Some of them have included unrefreshing sleep, insomnia, sweats, tender lymph nodes (neck), just feeling incredibly ill, crashes, burning eyes. I am sure there are more but at the moment I can't remember.

    I have no idea where to turn to. I am not sure my new doctor really knows much about the diagnosis process and what tests to do. I am having a CBC, metabolic, thyroid, panel done next week.

    I am also seeing an endocrinologist who is trying to taper my cortef since I have been taking it for 3 years. She wants to do a stim test but I need to wean down some. I am also tapering my thyroid meds and my levels are now all in the normal range. I never had any thyroid symptoms to begin with.

    I am sorry this is long but I have found this board to be helpful and would like some opinions on this. Thanks in advance.
  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Except for fatigue, all the other symptoms are going to be different in different people. I was gradually getting sick from 2003 to 2006. For two and a half years, I did not notice any cognitive problems. But it did develop later.

    This illness is not like you get the flu, have all the symptoms all at once, then gradually get over it, and symptoms are gone.

    This illness has stages, and some symptoms come later, they leave, then years later, that symptom returns.

    I did not have sore throats in the beginning. Even after I plummeted and the FM symptoms came. It was three and a half years into my illness before I started getting mild sore throats. During that time, I would notice I was fatigued. And it would occur to me something might be wrong. But I was getting older. I didn't know how to gauge how much fatigue is normal at that age.

    As far as I know, I never had swollen lymph nodes. Although I read someone had the lymph nodes in their torso that were swollen. I don't think I have had those checked.

    I lost weight instead of gained weight. Although weight loss does occur as a result of the illness, most lists mention weight gain.

    So how did I know I had CFS and FM? well, in the beginning I didn't. My symptoms were those associated with sex hormone abnormalities. Treating those and symptoms getting worse and more constant, contributed to my doctor knowing it was more than hormones when I plummeted. Had I not had the sudden plummet, which was when the FM started, I would likely still not know I have CFS. I had been sleeping 10 hours, wasn't getting up until 10 or 11 every morning, so I knew something was wrong. I also was having hot flashes and cognitive problems. Thanks to my gyno who led me in the right direction after my crash. But how much of that was overwork and stress and how much was hormones, was hard to read until the plummet while I was on his hormone treatment. The plummet with pain and extreme fatigue led me to go back to the gyno. Thanks to him, he quickly saw, after three years, that I have CFS or FM.

    Back to the neurological problems. Commonly, with CFS, the neurological problems come a year or so after the initial, flu-like symptoms. And they creep up slowly. In Osler's Web, one of the people who test neurological function talked to a CFS patient, a man, who said he didn't have any cognitive problems. But he couldn't find the ice to give her something to drink at his own home. So it may be you are having them, but they seem within the range of normal. The neurological may be trouble remembering names, or recalling the right word. Well, that is something that happens to all people to a limited degree. The deal with CFS / FM patients is that it is at the level of someone who is 60, but maybe the person is only 40. I never had the problem bad enough that I went to the grocery store and couldn't remember how to get home, as some CFS patients have described. But I have put my bank deposit into my mailbox by accident, not realizing it. I have gone off and left the front door wide open. I lose my cell phone about once a week. I went through a spell where in two days I left the stove on three times. I drove 45 minutes in the interstate and almost killed myself by missing the exit, merging into the next lane not seeing someone in the blind spot and misjudging another car's speed and pulling out in front of them. All in one trip. These things can happen to anyone. But to have a person do all three in one 45 minute trip, shows there is a problem.

    The possibility is that the virus moves to different tissue. Some researchers have said the viruses can get into brain tissue and hide from the immune system. This may explain why the original symptoms are flu-like, but the later symptoms are more neurological. And WPI is even theorizing that XMRV may cause autism which means it goes to the brain first.

    But that doesn't necessarily mean the virus will go into the brain in each case. The prostate cancer patients that had XMRV in their tumor cells, but they didn't have CFS. So it is conceivable that some will have the XMRV in their immune system and not have it in their brain or central nervous system tissue, at least for a while.

    If you think this may be a case, then you might want to go to an immunologist. Ask for detailed tests of cytokeines, natural killer cells, T-cells, etc. An immunologist will detect the CFS abnormalities, if you have them. And there is a classic CFS immune system abnormality pattern.

    [This Message was Edited on 01/02/2010]
  3. fight4acure

    fight4acure Member

    It sounds like you have some symptoms of CFS.

    Hopefully I'm not being redundant, but I've got a few things for you to ponder.

    1) Do you forget stuff a lot?

    2) Have you driven down a road, wondering exactly where you were going?

    3) Do you forget words, like table, chair, glass, or other common words, or do you have others play a guessing game of what common words you are trying to say, so that you can remember what it is you're talking about?

    4) Do you read clearly, without wondering what you just read, not having to read it over and over throughout the day to remember what you read?

    5) Can you read for long periods at a time?

    6) Can you focus on things?

    You do not need to answer to me. Just something to ponder on your own.

    If you do not have the cognitive part, you could get that later, or maybe you'll be one of the "lucky ones" (Note, that was sarcasm, being that none of us are lucky with this crapola, whether we have cognitive symptoms or not!).

    Fight :)
  4. ktp812

    ktp812 New Member

    fight- I have none of those problems. I actually work very part time in a busy store and have to deal with customers and ringing a register etc.. I am able to do all of that. But I only am able to work 2 days a week.

    My first symptom in 2004 was muscle cramping/twitching in my calf and foot. It started suddenly and was excruciating. That lasted about a month. I then had a "flu" which consisted of high temp, headache, backache, and chills/sweats. That lasted 24 hours and was gone.

    The following day I went to the doctor for blood work (routine) and he called and said I had shown extremely high liver enzymes, high sed rate and high crp. He wanted to recheck in 2 weeks. When I went back for the re-check everything was normal but I had started having symptoms including waking up with the worse exhaustion ever, night sweats.

    The fatigue hit me 6 weeks after the initial cramping and 3 weeks after the 24 hour flu.

    I definately feel as though I have some symptoms of CFS but I know that CFS is not just fatigue/exhaustion and that is the only symptom that debilitates me. No doctor can seem to figure it out.

    So I have had this illness for 5 years 3 months with no sign of any cognitive problems...

    I just am not sure what to think at this point. I have been to a neurologist but it might be time to re-visit that again since my neuropathy seems to have become worse lately.

    I guess I am lucky that I don't have the cognitive issues but dealing with the tiredness for 5 years has done enough damage to my life as I am sure most of you can relate to.

    Thanks for posting!
  5. ktp812

    ktp812 New Member

    Thanks Tina..I appreciate you taking the time to write such an informative response. I honestly have none of the cognitive issues. I am able to function as a normal person except for the constant unrelenting fatigue.

    I would be able to carry on a normal life if not for that. I was seen by a Lyme doctor a few years ago but I don't really want to get into that. They did test me for a CD-57 which I believe is T-cell count and it was extremely low.

    My new PCP wants me to see an ID doctor but maybe it would be better to see a immunologist. I have never been to one of them yet. I am seeing my doc in 2 weeks and will discuss it with him.

    Yes, my symptoms do come and go and some have been gone since 2005 and never returned (yet anyway). I use to have stiff hands and that lasted 10 months then just went away overnight. Burning eyes for months and then stops.

    The two constants are the sensory problems in my left calf and the fatigue. They have never gone away...I just have them everyday to some degree mostly moderate to severe.

    Thank you for your post and I will definately talk to my doctor about the different tests you mentioned. I don't think he has a clue...

  6. Sceptical

    Sceptical New Member


    Same situation. My CFS also started in 2004. Only symptoms were daytime somnolence and tiredness (and some overstimulation) No one had any idea. I started my legal studies in the USA in 2004 and developed cold which caused a huge deterioration in symptoms. After that I had all of the symptoms.

    Good news: You are right in time: Nexavir 2cc per day, VSL3 once per day, one tp liposomal glutathione, IM B12 (hydroxo) twice a week, quercetine 3x day. You are at an early stage !!!!!

  7. ktp812

    ktp812 New Member

    I guess I am lucky in the fact that I never get sick with anything...since I had that initial 24 flu 5 years ago.

    If I get diagnosed with CFS again then I will live the best I can but I need to be certain that is the case. Since I really haven't had any other symptoms in years other than the fatigue and calf problems then I can only hope...
  8. fight4acure

    fight4acure Member

    Mental fatigue is also a symptom of CFS, as are forgetting things.

    You can only work 2 days a week due to the pain, right? Do you dread going to work on the days you are scheduled, because you know how much pain you're going to be in?

    Another partial cognitive symptom of CFS, that I name partial-cognitive because it is something that makes us mentally exhausted, that is depression. People do not have to have depression to have CFS, as there are some who don't, and I didn't for a little while until my symptoms became more intense/worse. Mental exhaustion is definitely one symptom of CFS. Or at least I didn't think I had depression, but as I became progressively worse I noticed more symptoms of depression and CFS.

    Thanks for posting this, as I like it when we explore what symptoms we have that are different from the diagnosis. It is better to find out than to be tortured with the unknown.

    Fight :)

    P.S. Nobody is lucky having to suffer symptoms of these dreaded illnesses. It was just a touch of my sarcasm, especially towards doctors (my favorite enemy).

    [This Message was Edited on 01/02/2010]
  9. ktp812

    ktp812 New Member

    I can only work two days a week because I never know how bad my fatigue is going to be on any given day. It is too much stress on me to have to worry about that so I told my boss only 2 days. I can usually manage that.

    I have hung on to this job for the five years I have been sick and I won't give it up as long as my boss will let me work only what I can. It isn't because of pain..that is not an issue in anything really. It doesn't affect my daily living as I just deal with it. The only pain I have is in my left calf and I don't feel it when I am on my feet at work only when I sit and relax. I don't feel the muscle twitching either when I am working.

    Work does make me mentally exhausted and I feel it when I get home. But I have no trouble functioning at work and never have. I was on Wellbutrin a few years ago because the doctor thought it might help with the tiredness.

    I don't think of myself as depressed but mostly frustrated that after all this time I am still suffering from something that the doctors haven't really been able to identify. I did some reading on depression and don't feel that is a problem for me but then again I can't be totally sure.

    My dad passed away in Sept. and I was and still am grieving deeply so I am sure that didn't help any of this.

    I was originally diagnosed with CFS from my former PCP only because I was having chronic fatigue. No other reason. He never even explored why I was having the other strange symptoms.

    I really like reading about other people's symptoms and how they all began. But luckily pain is not really a factor in all this..the fatigue is the worse

    I am basically tortured by the unknown because I can't help think they are missing something that is bad but then I have to remember how long I have been sick.

    My worse year was 2005 as I almost missed my son's college graduation I was so sick. It was more exhaustion that year than just complete tiredness.
    I never felt or feel the need to sleep more than my 9 hours. When 7am comes I am up and about but the fatigue hits within a few hours.

    Thanks for posting as I enjoy reading other experiences also.