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New to the forum and worried I might have CFS/ME

Discussion in 'General Symptoms' started by szenn, Jun 18, 2013.

  1. soxfan

    soxfan Senior Member

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    I still think you have GAD..please look at the website I listed for you and read the symptoms..burning hands and feet are one of them. Sleep is also a huge issue with general anxiety. I know because I have the same symptoms.
  2. szenn

    szenn

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    Thanks Tristan
    I don't feel like I have flu at all
    Just burning hands and feet, bladder issues, and tiredness from not sleeping.
    My bladder issues are not anxiety related unless burning on peeing can be caused by stress!
    And I can't understand the sleep issue I am having. No matter what I can't sleep more then 5 hours. I can sleep 5 straight, 4 + 1 etc or 3 + 2. When I awake from short sleep , I fall back ok and am not anxious but after 5 hours I can't sleep. I don't know if this is anxiety. I didn't have a virus before , I had a chest infection in December but nothing major. The mucus on chest lingered a bit.
    It doesn't make sense. I am fatigued but not that much and if I do have PEM it is short lived.
    I booked an appointment with KDM in July. Do you think it is worth going?
    Can KDM help

    How are you now Tristan? Is anything working for you?
  3. szenn

    szenn

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    Really Boston? God I hope so
    I thought Gad was a symptom of Cfs
    Just can't understand the bladder and sleep stuff
  4. Tristen

    Tristen Senior Member

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    Gosh, burning on urination is most often a UTI. But that's super easy to diagnose, and as you said, they ruled that out. I don't know what else that could be. That symptom is quite significant and may even lead you into discovery of the cause of the rest of your symptoms. Sounds as though there are others here with more ideas on that one.

    Sleep problems is very common for us. I failed to mention that I've had that all along. Still have some trouble with it, but now days I get 6 hours sleep....and that's magnificent for me.

    I've been back from the severe me/cfs abyss for almost 4 years now. I'm now mild to moderate with PEM being my most stubborn of symptoms. My doc says it's always the last symptom to go for people on the mend. My doc brought me back to this level of health by treating herpes infections with a year of Cidofavir. Not currently on any ongoing treatment.

    I absolutely agree with PEM being our universal symptom, but for some it's not always present, especially in the beginning. Because your early onset (with whatever your dealing with), you have a much better chance at recovery. Just continue your pursuit for a proper diagnosis while finding a solution to the sleep and anxiety issues.
    WillowJ likes this.
  5. WillowJ

    WillowJ Senior Member

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    sleep stuff could be a symptom of either ME/CFS or GAD. (or about a half million other things)

    This should help explain the difference between the two (see page 4-5, 7, and 12-13 - the pdf pages are one greater than marked):
    http://eleanorsteinmd.ca/wp-content...3/02/Guidelines-for-Psychiatrists-English.pdf
  6. taniaaust1

    taniaaust1 Senior Member

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    I too from what your said about your symptoms.. think its unlikely you have CFS. Yes there is a long symptom list for CFS which covers what seems like almost every symptom out there (so someone who dont know this illness will can look at such a list and think "oh I have that" cause it covers their syptoms) but with CFS the illness presents in certain ways.. its often easy for those who have ME/CFS to recognise others with this illness.

    To me you are showing signs of GAD...

    I had a slow onset which didnt have the postexertional symptoms to exercise for the first year but my illness still pointed to ME/CFS with its very virally "on and off" symptoms eg fevers, sore throats, swollen glands etc which were triggered off by what I was doing at the time (triggered off by everytime I worked hard at studying for exams and doing collage assignments).

    You have a lot there which points to that you dont have ME/CFS. For example, you dont seem to have any normal ME/CFS triggering off to things.. sounds like your illness is not varying much depending on what you are doing , that doesnt fit with ME/CFS.

    Brain issues is the norm in ME/CFS (over 80% of us get memory issues). There is a good symptom list with the percentages for each symptom at http://wwcoco.com/cfids/bernesx.html . You can see from that you dont have a lot of the normal symptoms (86% of those with this illness have low blood pressure etc).

    ME/CFS is a very complex illness with usually more symptoms than just headaches, muscle aches a couple of times a week, a sleep issue and a few other symptoms here and there. (I get over 90 symptoms with it..thou most dont get that many but compared to most who get ME/CFS, you have very little amount of symptoms. Even with a gradual onset case, most would have many other things too.. Many more symptoms which help to distinguish this illness from GAD symptoms).

    Have you seen a sleep specialist? It may be a good idea to look into exactly what your sleep is, if you get that treated properly.. you could find things are much different for you. With sleep issues, it would be normal to wake up feeling a bit tired.

    The "tiredness" in ME/CFS.. well tiredness isnt a good way to describe it, it is complete exhaustion happening at times of the kind it completely interferes with ones life... often its also "malaise" (what people feel when they have the flu). The way you describe your tiredness.. doesnt at all sound like ME/CFS.

    Be aware that some doctors will give a CFS diagnoses to anyone with a lot of symptoms they dont know what is wrong as they use this illness as a waste basket diagnoses rather then a proper illness. So take care you dont get wrongly diagnosed.. if you've seen some CFS specialists and they dont think you have it, I'd be believing them.

    It is very common for people to falsely get diagnosed with CFS.. 50%? of what were thought to be CFS cases and the people were diagnosed as such, have been found to have been given the wrong diagnosis when peoples illnesses are better investigated and they finally properly diagnosed, take care you dont end up being one of those people falsely diagnosed.

    That shows those symptoms are being caused by anxiety rather then CFS... obviously in your case anxiety can cause burning.

    That isnt a normal way for CFS to start, I cant remember anyone with this illness saying it started off with not being able to sleep.

    ?? You have loads of energy but wont use it in case you get PEM.. certainly sounds like anxiety. If any of us had loads of energy, we certainly would use whatever energy we knew we can.

    Get your anxiety treated, get your sleep issue treated and see what symptoms you have left.
    soxfan likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    GAD can be one of the 100 or so symptoms of CFS but usually its a small part of of our whole illness in those of us who do get GAD with it.

    CFS sleep issues are also very complex and may be many different kinds of sleep disorders involved then the ones those who have GAD may have eg circardian rhythm issues, hypersomina, trouble getting to sleep (that one would also be a common GAD sleep issue).
  8. soxfan

    soxfan Senior Member

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    Excellent post above....I am kind of in the same situation in which I have many of the CFS symptoms but on the other hand I can do many of the things that would distinguish CFS from something else. For example I am able to exercise (brisk walking) and do many other physical things without a problem or PEM afterwards.

    But when it comes to mental exertion I am always a mess afterwards. I just had a bad crash this week and have no clue what caused it. I had the inner vibrations...the feeling like someone drained my blood and I was just a shell with nothing inside. Then the unbearable tiredness hit for a couple days. I did nothing out of the ordinary to cause this and haven't had a crash like this in at least a year.

    I have many of the anxiety symptoms but yet klonopin etc. doesn't do a thing to help with my most problematic symptoms. I also have neuropathy pain in my calf and foot...poor sleep. Had 2 sleep studies done in the past.
    I can't handle stress at all....my body seems to be in overdrive all the time...I am hyper but can't calm down.

    But I don't have memory issues or brain fog etc....I just get extremely tired when using my mental capacities. I am still seeing doctors but none of them really have given me a diagnosis. I did have Lyme/Bartonella in the past but that has been treated and now I definitely have something different going on....
  9. szenn

    szenn

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    Taniaaust
    Thanks so much for the very detailed and thoughtful answer.
    You have really made me feel like I don't have this illness and I have seen a lot of doctors.
    I realise that I am probably suffering from anxiety , I don't know why but clearly I have got myself in a state.
    It is so kind of you and many others to not only read my very lengthy and self absorbed rantings but to take the effort to reply to them with such care, so blimmin nice. I just don't know how to say thank you enough.
    Big thanks also to Caladonia and Soxfan. Btw Soxfan,I hope you find out what you are suffering from too. Don't give up.

    I went for two long cycle rides the past few days no PEM no intense fatigue.
    Still can't stay asleep but I am working on it.

    So many lovely people on this site, truly.
    Thanks again to all who endeavoured to help me.
    Xx
    taniaaust1 and soxfan like this.

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