Discussion in 'Fibromyalgia Main Forum' started by akersteen, Apr 11, 2007.

  1. akersteen

    akersteen New Member

    It has been suggested to me that if I didn't have CFS, I was susceptible -- my lifelong hairdresser has CFS and, having witnessed my whole life, thought that I had it several years ago. I've just started researching it again because of how tired I feel all the time. Not to be a skeptic, but I don't want to be a hypochondriac and assume that my chronic fatigue is actually "Chronic Fatigue."

    I definitely have frequent difficulty keeping my thoughts moving and speaking clearly -- people often get frustrated as I try to very slowly explain something. My father is like this though, so it also could just be an inherited trait. This has caused professional problems for me as I feel like I am not communicating clearly enough. Of course then at other times, when I'm feeling more awake, I talk a mile a minute.

    And I'm tired a lot. A lot. I sleep at least 9 hours every night but really don't feel rested unless I get 11. Even then, sometimes I get really tired and foggy/slow during the day.

    I don't have sore throat or really noticable muscle or joint pain (I've always had knee problems and some achey joint stuff, but nothing debilitating -- I just think I have my family's predisposition for arthritis). I do have lots of lumps/nodules in my neck glands. These started to accumulate when I got mono in college and since then, I get more after a cold or flu. My hairdresser pointed to the mono, the fact that I have persistent allergies (manifested in a post nasal drip), and that I had very bad chicken pox, shingles, and a couple of cold sores as a kid, in combination with my need for lots of sleep and sleepiness during the day in spite of it.

    I do have a doctor's appointment in a couple of weeks but am reluctant to bring up my questions about CFS. If I do just have a general need for more sleep than normal people, I don't want to go through lots of expensive testing only to find out that I'm a hypochondriac (which I already know to be true).

    I'm just wondering if in this long list of symptoms and in my self analysis, there is anything that could rule out CFS. Any thoughts, advice would be much appreciated.
  2. akersteen

    akersteen New Member

    Can I ask a couple more quesetions?

    How consistent do people report their headaches with this condition? I've had headache problems off and on my whole life. This winter I have had one that sticks around for a couple of days at a time, goes away, and then comes back, at the base of my neck.

    I have also struggled with depression on and off for the last two years.

    I guess I'm just not sure what to chalk up to co-incidence and medical issues that are isolated.

    If I were to bring up this at the doctor's office, what can I expect them to order for tests if any (i.e. how expensive would this be)? Or do they just ask you about your symptoms and try to put the puzzle together that way?

    Sorry to be so scattered.
  3. akersteen

    akersteen New Member

    From your list, these are on my list:

    Fatigue or exhaustion 95 % *
    Headache 90 % *
    Malaise 80 % *
    Short-term memory loss 80 % *
    Difficulty concentrating 70 % *
    Depression 65 % *
    Lack of restful sleep 90 % *
    Sensitivity to bright lights 80 % (though this could be due to strabizmus eye surgery I had several years ago)
    Allergies 60 %
    Light-headedness 75 %
  4. kellyann

    kellyann New Member

    Hi Akersteen,
    Sounds to me like maybe you should discuss your concerns with your doctor and get a true diagnosis. I don't think you are a hyprochondriac, I think you just need to get a correct diagnosis and go from there.

    Good luck and I do hope you go to the doctor and voice your concerns about the chronic fatigue!

    Take Care and Be Well!
  5. Engel

    Engel New Member

    Thanks for the info
  6. Lichu3

    Lichu3 New Member

    There might be lots of reasons for your fatigue and other symptoms so going to see a doctor would be the first step.
    Realize that the majority of people with chronic fatigue do NOT have CFS and have either situational stressors or other treatable medical problems for their symptoms.

    They will do some basic blood testing aside from asking you questions. How much it would cost may be difficult to tell because it depends on what questions they ask, what blood tests they order, your insurance status, the area of the U.S. you live in, etc. But after an initial doctor visit, they can help you prioritize which tests to do first. I would hold off on mentioning CFS until you get examined and some basic blood tests done.

    The degree of fatigue in CFS is severe to the point where the majority of us cannot do normal things (work, take care of kids, clean the house, etc.) despite getting adequate sleep.
  7. Reidsbeads

    Reidsbeads New Member

    Fibromyalgia or Myofascial Pain syndrome. I just got info on MPS and the lumps and nodules in your neck are a specific symtom of (Mps) You also mention having had mono and allergies which could have resulted in Epstein Barr Virus, which can lead to a variety of things including cfs, fms, mps.....and probably a whole bunch of other things. The thing is is that you also have symtoms of Fibro and Mps. If you dont inquire to your dr about the things that are bothering you you are setting yourself up for more problems later. Its better to be tested for these things and told you dont have them than sweep it under the carpet til your crawling around your house (if you can) and have to call an abulance. You should have tests for all three and see if the dr can give you any other info. If your dr makes a decision without testing you then your answer is "YOU NEED A NEW PHYSICIAN", one that will take you seriously! I went through so many Drs, (ABOUT 12OR 13) before I found this one im seeing now and I would just die if I didnt have her. She is the only one that ever listened to me long enough to order the tests and help get me some answers. The OTHER DRs and the hospital saw me as a drug seeker and a frequent flyer. I no longer go to that hospital except when I take someone else. I will die before I pay people to treat me like I am just there to get drugs or its all in my head. This is the only hospital for 30 miles around here. I WILL WAIT TO SEE DR. GAULTER EVEN IF SHE IS ON VACATION. Sorry about the little rant but take my advice so this doesn't happen to you!
  8. Reidsbeads

    Reidsbeads New Member

    Are your headaches migranes or tension. If it comes from your neck try excederin tension headache, it works for me and my headaches are because of a neck injury that always started in my neck then up the back of my head then to the front. Sometimes it stays on the side of the injury and sometimes it is everywhere! About the SLEEP thing! :} "NORMAL" people sleep 6-8 hours every night on average if you only feel good after 11 hours of sleep there is definately something wrong! Mention the fibromyalgia, Myofascial pain syndrome and the CFS and just tell him or her that you want a definative answer because all your friends are freakin' you out with our opinions. LOL by now I'm sure we are but dont sweep your health care under the rug cause later you will regret it. I can assure you from personal experience! Tam

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