Doctors don't help, is this CFS?

Discussion in 'Fibromyalgia Main Forum' started by huuk, Dec 15, 2009.

  1. huuk

    huuk New Member

    I have been having lots of health problems which have gone worse during the years. I am now 29 years, and things were quite fine in 2002 when I started medical studies in university, no cognitive problems as I was able to get in. But weird things started to happen soon.

    First thing I remember is that I lost my ability to drink alcohol. I would get very bad feeling and the terrible feeling would last for 2 days if I drank only 2-3 beers..sometimes I felt like I was getting a heart attack if I had been drinking so I had to stop it.

    Then I started to get oversensitivity problems, hearing especially and developed tinnitus and over sensitive hearing, hyperacusis.

    Before my studies, I had been working out at the gym a lot and developed a nice body in 6 months but now I found out that I was not able to work out and train. I had this exhausted feeling after only one single set of bench press or anything and I just didn't continue my hobby anymore because it felt so difficult to do anything because of the weak feeling I had.

    Then I started to get joint problems, I only did some relatively easy excersise at the gym and my elbow started to feel sore and it felt like it always gets an inflammation after the slightest was difficult to write or use computer and any workout was impossible because of the pain. Went to specialized doctor, ultra sonic tests and they just told me that they don't understand what might be the problem.

    Now the join problems have become more difficult, and sometimes there is joint pain in my fingers so much that it is hard to move them, also the muscles which move the fingers feels rigid and out of control. And tingling sensations in fingers and feet.

    also I was diagnosed with asthma, and started medications. After 2 years the doctor told me that there is something weird and my asthma is not responding to the medication and it seems to be useless.

    Also started to get many allergies, many foods, like carrots or some spices I was not able to tolerate anymore, got this feeling like my throat was being choked. Got allergic to dogs, cats, many plants, even horses acccording to tests even though I had not even seen horses :D

    I was also very sensitive to all kinds of chemicals. We had to do dissections on dead bodies in med school and they used formaline on those bodies..I almost passed out there and had to leave. even small traces of tobacco smoke makes me feel nauseous and brain fog feelings. All kind of volatile substances, paints, anything, makes me feel sick and kind of drunken feeling, not nice at all.

    Also some weird sexual problems..I have had prostatitis for a long time with no known reason. I could have sex but I felt very weak afterwards for days..finally I learned that I must not ejaculate because it makes me very weak and feeling sick and exhausted for 3 days.

    Now the problems have gone much worse during 2 months and I think it was because I lived that time in a moldy apartment and felt sick most of the time. I am now out from there but my condition worsened really badly.

    Now I can't walk even to the bus stop without getting exhausted, let arone running, I seem to be falling asleep very easily, one day my friend found me unconcious from the toilet, I only remember that I got very tired feeling suddenly when I was sitting there and next thing is that I see my frind who had opened the lock and door because he was worried.

    Somedays I wake up from the floor because I had felt so tired and fallen asleep..if I go for a walk, when I get back it is very hard to climb stairs back to apartment because legs feel so weak..and I have lost most of my appetite, my muscles have gotten very small in only 2 months and generally I feel not OK..often I feel that I have cognitive problems, I don't remember things, sometimes I get wrong words in my mouth while I try to say something, it is difficult to concentrate, and often it feels like I am not myself anymore, as being smart and strong witted has always been something I feel good about myself. If I eat something wrong, if I go to some apartment which has something bad, if I inhale anything bad like smoke or something else, I get this foggy feeling.

    Now I have finally visited a doctor. I did visit doctors during past years because of the symptoms, because of asthma, but it didn't help, because of joint problems but nothing could be found. Then they told me to see a psychiatrist and I met her many many times and finally she told me that there is no reason to meet anymore, that in her opinion I have many problems and she is surprised how strong I am emotionally and in her opinion the problems I have are not related to psychiatric problems.

    But the general medicine doctors I've been seeing now, don't seem to take this seriously. The other one asked me to fill a quiz which was to see if I had depression. Then he told me that

    "It seems that you don't have any depression but maybe you can try these SSRI pills, sometimes you can be depressed without knowing yourself, depression can be the reason for many problems."

    the other one told me that "your problem is the asthma, it has gotten worse. Just inhale this medicine everyday and I'm sure your other problems will soon go away"

    The only thing I know is that condition seems to be progressing in a way that is not fun and already I have troubles with thinking, balance, exhaustion, multiple chemical sensitivities as well as allergies, joint pains and weakness, continuing tiredness and tremors, breathing and everytime I go for a walking I get this heavy feeling and pain on my left shoulder..I also have problems when I stand up, feels like not enough blood to the brains. I find it hard to believe that this is asthma or depression. What do you think
  2. mbofov

    mbofov Active Member

    Your symptoms sound very similar to many people on this board who do have CFS. And the reaction of your doctors is also very similar to most doctors out there - they know nothing about CFS and tend to think it's all in your head, or depression, etc. and hand out SSRIs.

    It would be best to find a doctor who knows something about CFS, which is easier said than done. Why don't you do a new post on this board to see if anyone here knows of a good doctor in your area. An alternative would be to find a naturopath as they often know more about this than regular docs.

    Another good board to go to for information is

    I have to travel some 80 miles for my CFS-knowledgable doctor - there doesn't seem to be one where I live.

    Take care -

  3. richvank

    richvank New Member

    Hi, huuk.

    It sounds as though your case would fit within the diagnostic criteria for CFS. As you may know, the population that has CFS is very heterogeneous, and there can be other disorders, such as tick-borne infections and mold illness, that can cause a person to develop CFS, if they have the appropriate genetic susceptibility. So each case needs to be sorted out by someone who is knowlegeable about CFS and related disorders.

    Where are you located?

    Best regards,

  4. munch1958

    munch1958 Member

    I used to be able to bench press 130 pounds and do a full squat with 135 pounds which was impressive for a 120 pound 25 year old woman! I was considering competing in power lifting at one point. Now I'm lucky if I can pick up my 25 pound grandson without dropping him.

    What part of the country do you live in? Do you have any hobbies that would put you in contact with ticks? Any pets?

    In my case, I've done some cross country motorcycling, lots of tent camping in about 25 states and 3 provinces, gardening, bicycling,hiking, etc. For years I heard music at night that no one else could hear. Sometimes I swear I can hear a spider crawling in the corner too.

    I believe you will find many with Lyme disease also have prostate issues or unexplained testicular pain, and many of the other symptoms you mentioned including the hyperacusis or ultra sensitive hearing:

    Here are the other symptoms from CanLyme's website:

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )
    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular, oval and spreading out (more generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in head, white matter lesions in brain (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy, Horner's syndrome)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Phantom smells
    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you have not since felt well.
    Low body temperature
    Allergies/Chemical sensitivities
    Increased effect from alcohol and possible worse hangover
  5. nah.stacey

    nah.stacey Member

    Huuk - sounds like you are on board with the rest of us.
    I had a Dr. at the very beginning of this DD at the Fibro and Fatigue Clinic who also had CFS/FM, I wish that you could get in contact with him, he would be a valuable source of information for you, he would know exactly what you are going through. His name is Dr. Michael Calabrease, I thought he was the most compassionate Dr. I had met through my course so far and it's because he truly knew what we were going through. His hands were greatly tied by the F&F Clinic so he was unable to prescribe things that he really knew would help. He had to push their vitamins and supplements, it was alot about improving your endocrine system but their was something missing, they had the right idea even early on but there is something missing in their protocol. Hang in there with medical school, one Dr. I talked to that had this DD backed off on what he really wanted to do and ended up being an anesthesiologist. Maybe you got this DD so you know how it feels and can go into research and be a star by finding our cure. It really is a viral thing so you might try in that direction if you have any contacts through med classes.
    Best of luck,
  6. MKate

    MKate New Member

    HI Hunk

    Wow - -I'm so sorry for your health problems. Let me see If I can help point you to some helps:

    Alcohol Intolerance- - yes your immune system and digestive systems need extra tender help!

    Food Sensitivities -- yes -- your immune System (find a doctor who will run blood tests to help to manage your current sensitivities to foods -- Complete blood draw and send to what used to be called Great Smokies Labs --name has changed but a search will find it).

    Exhaustion to Exercise -- yes -- Call University of Pacific, Pacific Fatigue Labs for testing. find them on the web they are in Stockton CA.

    And -- viral TEsting - ME/CFS is viral....and immune system: could be any one of several antigens: EBV, Enteroviruses, lymes, HHV-5,6,7 etc and/or others known and unknown.

    SEE if you can find alternative doctors NOW who beleive you and will treat with:
    Antivirals, Oxygen therapies, Nutritional IV's, Vitamin B-12 Shots (only what you'll need), and not ignore the viral component.

    Keep your exertion within whatever "window" you can - without exhaustion.

    Some say that IV's of potassium when they get "low" will help. You need a doctor that is unafraid of these alternatives to try it.

    I have been unsuccessful to find local doctors (live in a small town) but if you are in a large city there may be an IV center of naturopathic or internist who is trying to help people. Don't give up!!!!!

    ME/CFS sufferer for 16 years
    High EBV and Herpes HHV-6
    [This Message was Edited on 12/27/2009]

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