Need help scared about how I'm feeling

Discussion in 'Fibromyalgia Main Forum' started by matthew76, Sep 27, 2008.

  1. matthew76

    matthew76 New Member

    Last time I went to the doctor, she recommended therapy for my anxiety. She also prescribed Xanax, but when I told her I still wanted to stick with the Ativan (but really want to get off anxiety meds,) she said STOP taking them. I have sleep apnea, and after 6 months, I'm still not feeling well with the C-PAP. She said I no longer need to see the sleep doctor. Seems nuts to me. She gave me a blood test again last time, but except for elevated liver function, nothing was abnormal - so she assumes it's mostly anxiety with some of it being the apnea. I know she's an internist, but I feel confused going to her. I still have these symptoms:

    - mind numbing brain fog (seems to be along the temples most,) headaches, head affected easily by mood, excitement, and stress
    - flatness/low mood/can't enjoy things/easily cry/depression
    - pretty bad fatigue, especially mental
    - abdominal aching/bloating/constipation, stiff muscles in lower part
    - ears feel kind of under water and bothersome
    - every time I sleep, I wake up feeling worse
    - sometimes wake up with parts of body tingly/restless; often take a while to fall asleep
    - hard to concentrate/focus; everything seems like a chore
    - heart weirdness (racing, fluttering, sometimes pounding too easily) and some out of breath sensations (but sleep studies showed no arrhythmia, and inhale/exhale test seems ok)
    - bad anxiety

    I'm thinking there must be something besides anxiety to feel this way since November of last year, when I got a virus I never seemed to recover from completely. What do you think, and should I leave this doctor?

    Sorry to keep mentioning this, but I'm so down about how I feel.

    Some people thought I have CFS. But my symptoms are pretty consistent, and my attitude makes things a little better or worse. Thing is, going for relatively short walks and biking for 10 minutes doesn't really make me feel much worse. So I'm scared this is something worse than CFS.

    Any advice?
  2. 3gs

    3gs New Member

    Has your doctor never mentioned fibro of cfs to you?
    I would either take doc some info or try to see a rhemy.
    I know these symptoms can be scary when you dont know what is going on.

    Read info on this site theres lots of good info and it may make things less scary.

    Know that you are not alone. I've had every symptom you mentioned and have fibro and me/cfs. But you need to be evaluated to know for sure. When were you told you have CFS?

    Best wishes
    Peace jenny
  3. matthew76

    matthew76 New Member

    Thanks for your reply. I think getting a second opinion is a good idea. I have not been diagnosed with CFS, but since some of these symptoms are similar, I have been posting on this board. The lack of clear post-exercise malaise is what bothers me.

    I also have a vague sleepiness the whole day, and I'm better at night. It's very hard to wake up - mornings can really feel like I'm ill.

    Thing is, nothing really has stood out in tests that indicate it is more serious than CFS. Higher liver function is just the weight gain according to the doctor, sleep tests just showed severe apnea, CAT scan in January was normal, doctor felt around the abdomen and no real pain to the touch. Urine tests fine. She says I have been checked head to toe.

  4. zenouchy

    zenouchy Member

    Hi Matthew,

    I'm SO SORRY you aren't feeling well. At first I was going to tell you to switch docs immediately. Then, I read over your post again. Of course, if you feel something isn't right between you and your doctor, I would switch and that's that.

    However, the more I looked at your post, the more something struck me and that was how many times you mentioned anxiety and the symptoms of anxiety. That is one area in which I think your doctor is right. Anxiety is a weird animal. I know because I've dealt with it too and still do.

    Check out this website: Many of the symptoms you have mentioned match up.

    It's amazing how anxiety symptoms mimic other things. That's why nothing else was abnormal. Anxiety messes with sleep in a major way. If you are anxious, you aren't relaxed. If you aren't relaxed, you can't sleep.

    Have you considered seeing a counselor? I just started seeing one, and one of the first things she mentioned was that she wanted to help me with my anxiety. In two sessions, she's already helping me. Just knowing someone cares and wants to help makes a HUGE difference. Had I known that, I would have seen one much sooner. Now she's going to help me deal with the anxiety head on.

    Those are my thoughts. As for switching doctors, it's important to feel like the one you have listens. A second opinion might help if you feel like the current doc isn't listening enough, and also, another doctor might order other tests that the current doctor didn't think to order. However, I think the current doc is spot on in terms of you seeing a counselor for your anxiety. I just want you to feel better. I know how much these symptoms can take over.

    Hope this helps. Feel better.

    All the best,


    [This Message was Edited on 09/27/2008]
  5. 3gs

    3gs New Member

    Sorry Im a little fogged today so bear with me.

    In response to your question are you thinking no cfs because you can do short excerise? Many can.

    Where you just being treated for anixety? Everything you stated down to not getting better and illness still makes me think cfs or fibro. Also you can get aniexty with this.

    Really think you sound fustrated doc not helping you since last Nov. ouch! Go for the secound opinion.

    Hang in there
    We also have been cked head to toe.[This Message was Edited on 09/27/2008]
  6. matthew76

    matthew76 New Member

    Yes, I have to get the anxiety under control, because that in itself can hurt your body. I just feel on edge all the time and nervous because of these symptoms, and sad that I don't feel like I used to.

    I'm not saying she's a bad doctor, but sometimes she doesn't listen enough before saying what it is and can be a bit rash with advice. I would like a machine that has AHI numbers to make sure the apnea is being stopped, and I would need a sleep doctor for that.

    I'm currently being treated for the apnea and anxiety only. It was just such a change in me when that virus occurred that this makes me more uneasy. Head suddenly started feeling bad and the unrefreshing sleep went into overdrive. I wasn't feeling quite as well before the sudden change.

  7. quanked

    quanked Member

    regarding CFS--all your symptoms are on the list. It took years to fully accept how I felt and feel. Believe it or not I believed for years that I would one day just bounce back to my old self. I am still grieving the loss of my old self. Even if I recover I will never have the old me back.

    This list is from the CFIDS' association website, Not all symptoms are true for all people with CFS and severity of symptoms vary for person to person. For what it is worth-- THE LIST...


    Although its name trivializes the illness as little more than mere tiredness, chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), brings with it a constellation of debilitating symptoms.

    CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.

    The symptoms of CFIDS are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.

    Other Common Symptoms
    Additional symptoms are reported by people with CFIDS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.

    For More Information
    Although the CFIDS Association of America does not dispense medical advice on the diagnosis or treatment of CFIDS/CFS, or similar conditions, we do have an interactive questionnaire to familiarize site visitors with the symptom patterns and exclusions that can lead a health care provider to make a diagnosis of CFIDS.

    Request a copy of "Introducing CFIDS" or other free materials.
  8. matthew76

    matthew76 New Member

    I do think the elevated liver function should be looked into. It was not sky high, but still, my doctor blew it off by saying it was just a fatty liver. My old doctor wanted to look at the liver and gall bladder the first time it was a little high. My current doctor wants to do another blood test in three months if I lose weight, but perhaps I shouldn't wait that long.

    Once I go to the therapist and have the liver looked at, I'll have a better idea of if this is CFS with anxiety/depression, anxiety/depression, or liver problem.
  9. kellyann

    kellyann New Member

    All the symtoms you listed are symtoms of Lyme Disease. I have chronic lyme myself. Have you been tested?

    Your Friend,
  10. matthew76

    matthew76 New Member

    I have been tested for Lyme once and was negative (also negative for mono,) but maybe I should get tested again for Lyme.

    One strange thing is that last year the doctor said Mycoplasma infection was around last fall - and that's a possible cause of CFS. I did have that virus.

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