New to this - fears

Discussion in 'Fibromyalgia Main Forum' started by sparty, Nov 29, 2010.

  1. sparty

    sparty New Member

    I'm not officially diagnosed with CFS - have to wait for the 6 month mark to be official so I am a couple of months short but my doctor has basically said that at the 6 month mark, it will be official.

    A few months ago, I was an active 45 year old man. Now, garnering the strength to go to work 5 days a week is about all I can manage. I'm sure you all understand the feeling.

    I'm wondering how others have dealt with fears because I am pretty much failing.

    I have too specific, opposed fears - maybe schizophrenia is another problem. :)

    First, I spend a silly amount of time worrying that the doctor has missed something. Without a specific test for CFS, I sometimes catch myself worrying that there is something far worse that has been missed. Maybe 1 more test would find the cancer or the degenerative disease that is doing this to me. In other words, I worry that I don't really have CFS and that I'm going to die from this soon.

    On the flip side, I worry that this is real and that it is never going to get better. That this is my life - for the next 30 or 40 years.

    I see what this is doing to my family. I see what this is doing to me and how it is affecting every part of my life. In some ways, the stress is as bad as the problem.

    Any tips on dealing with the stress and fears would be most greatly appreciated.
  2. Nanie46

    Nanie46 Moderator

    Welcome, but I'm sorry you are sick.

    It is hard when we don't know what is causing us to be so ill.

    CFS has "no known cause" but of course common sense tells us that something caused this.

    Many of us here with CFS and/or FM have later found the cause of our illness to be infectious.

    Often there are more than one chronic infections involved.

    A frequent common thread is a chronic Borrelia burgdorferi infection (lyme disease).

    Tests for lyme are VERY unreliable and usually come out "negative". Then the Dr says you don't have lyme and that's the end of that....and you keep suffering forever.

    This happened to me and many others here, and on's Medical Questions Board.

    Along with lyme, many people have Babesia, Bartonella and Ehrlichia, etc.

    Please keep and open mind and read this contains an excellent symptom list...

    Here is another great paper written by a lyme expert.....also contains a great symptom list on pages 9-11 and info about Babesia, Bartonella, Ehrlichia etc on pages 22-27....

    I urge you not to discount this very good possibility.

    People on this board are finding out all the time that this is what is causing their terrible fatigue, pain, brain fog, etc.

    I also urge you to go to on flash discussion......sign up for on the Medical Questions posts and post your questions. There are many very intelligent and helpful people there and the board is very active.

    More info that you must read....

    Good luck to you!

  3. wyndi

    wyndi New Member

    Wow, some good information here. I immediately went to the lymedisease sites recommended. I feel certain that mine is not lyme disease or the other diseases noted on the site.

    I am familiar with fear though. It can be debilitating if we allow it to be.

    My first diagnosis was "exhaustion". We didn't call it CFS back then. I was 40 years old. Just some R&R was So for almost 2 years, I slept off and on until I felt like Rip Van Winkle! After that I caught practically every illness that I was around, since my immune system was down. Then about 4 years later, got the fibromyalgia diagnosis, along with a few others (osteoarthritis, bone spurs on my spine, hypothyroid, etc)

    This last August, I celebrated my first birthday. Cancer free for one year. "More people live with cancer than die from it nowdays." That's what one of my professors told me. I was a grad student at the time (age 60).

    Stress and negativity are not good for any illness. One thing I learned when I received the diagnosis of cancer and went through the surgery necessary, is the need to live now. I quit saving things for "good". I quit putting off until tomorrow. I learned to live for the moment and in the moment. I crave that sense of immediancy now every once in a while.

    I can't tell you what to do to not fear. That's part of what keeps us moving and growing. I can tell you that sometimes you just have to have faith. Some things in life are out of our control. Your overwhelming dwelling on the negative possibilties are in fact robbing you of your energy today. Energy that you desperately need right now.

    I would suggest that you consider getting some outside support/counseling. Message boards are wonderful, but very limiting. If you feel that your fears are honest, then you might want to get a referral from your doctor or insurance provider and see a professional that can help you work through this time.
  4. LittleBluestem

    LittleBluestem New Member

    (I don’t really want to say welcome.) Getting diagnosed before 6 months are up is amazing. In the ‘old days’, many of us went for years without a diagnosis. Those who are diagnosed early have a much better prognosis. They tend to get better more quickly, get on with their lives, and you don’t see them around here. Don’t be discouraged by all of the long term problems of many of us on this board. You are not us.

    A common symptom of CFS is an up-regulated autonomic nervous system. This causes a generalized edginess/fear about everything in general and nothing in particular, along with sleep problems.

    The common medications are alprazolam (Xanax) or clonazepam (Klonopin). If your physician does not want to start you off on a benzo, you can try non-prescription things such as Bach Flower Remedy’s Rescue Remedy or Calmes Forte. Herbal teas such as chamomile, passion flower, and valerian can help, as can blends such as Tazo Calm. Things like breathing exercises and meditation can help. As Wyndi said, some professional support might also be helpful.

    There are also a variety of non-prescription things you can take for sleep. Too many, in fact, for me to try to go into it here. If you search, you may be able to find discussions of this subject (if the search function is working.)

    It sounds like your physician was on the ball in diagnosing this, so I think it is reasonable to expect him/her to be knowledgeable about treating it and that you will get better.
  5. Nanie46

    Nanie46 Moderator

    In addition to the info I posted above, I should let you know that I was convinced for a long time that I did not have lyme because I did not see a tick bite or a rash and I did not have joint pain.

    It was not until I started reading alot of info from ILADS that I realized that I probably did have it, so I got a western blot from Igenex lab in CA.

    I had an overall negative result, but I had lyme specific bands show up that gave me the clues I needed.

    Symptoms vary alot from person to person. 100 people with lyme will have 100 different presentations.

    The most common symptoms are fatigue, cognitive problems and pain.[This Message was Edited on 11/30/2010]
  6. bakeman

    bakeman New Member

    If they diagnose you with CFS. Then listen to them carefully. People who are diagnosed early have a much higher recovery rate. If you have cfs, it is a VERY serious condition and should be taken v seriously! Rest as much as you can, you're going to want to fight and work through it, but resting now will pay off in the end hopefully.

  7. ladybugmandy

    ladybugmandy Member

    pretty sure at this point at CFS is caused by XMRV or related viruses...please order test kit from VIP Dx and get tested!