Please help>New to board CFS possible I need advice

Discussion in 'Fibromyalgia Main Forum' started by jesuslovesu, Mar 15, 2006.

  1. jesuslovesu

    jesuslovesu New Member

    hey all... my pcp cannot determine what has been wrong with me for about 1 yr now. i have fatigue,weakness,nausea,sore throat,body aches,lightheaded and dizzy and ringing in my ears. well for the past 2 weeks i have been terribly ill with fatigue and weakness the ringing in my ears makes my head hurt,all of my labs have been normal CT normal (except sinusitis) i am scheduled for an MRI tomorrow and a sleep study next week, and waiting for an app w/rheumatologist. I have been out of work for almost 2 weeks and that puts our finances in a bind.I am scared because,as of right now nothing can be pin pointed, my family is very supportive and i have faith that God can take care of everything i guess my fear is just of the unknown. i would appreciate your prayers and advice on how you handled this in the beginning.
    [This Message was Edited on 03/15/2006]
    [This Message was Edited on 03/15/2006]
  2. jesuslovesu

    jesuslovesu New Member

  3. foxglove9922

    foxglove9922 New Member

    First of all jesuslovesu, WELCOME.

    What brought you to this board? Have you been diagnosed with CFS? Many of of your symptoms do sound like CFS but have you been ruled out for lupus or other autoimmune disorders?

    Best wishes.......foxglove
    [This Message was Edited on 03/15/2006]
  4. jesuslovesu

    jesuslovesu New Member

    my doc had decided about 6 months ago i had cfs but i am having so many problems now and have been out of work for a couple of weeks so he is running lots of tests right now o came to this board for some support and advice :)
  5. lenasvn

    lenasvn New Member

    The rheumy appointment might be helpful (If he believes in CFS). If he does, he might be able to clarify alot about the problems we encounter with this DD. It sounds though, that your problems are pretty typical. It is always good to check if you have new symptoms to rule out other conditions. As I've had issues for a few years, I've noticed a pattern where the DD hits me with a new wave around March. I have NO CLUE why! Maybe this is what's happening? Bless your heart, lets wait and see what the MRI and sleepstudy does!

    Many hugs, and welcome
  6. LittleBluestem

    LittleBluestem New Member

    Is your sleep specialist a pulmonologist or a neurologist? Pulmonologist are usually primarily looking for people with sleep apnea, with is not uncommon in people with CFS. They often do not know anything about disturbed sleep cycles which are also not uncommon in people with CFS. If you have a pulmonologist and he says your sleep is ‘fine’ and you don’t think that it is, you may need to find a neurologist who specializes in sleep disorders.

    Your labs may be normal because they are not being interpreted correctly. Someone who is at the very bottom of the normal range on a bunch of test is not healthy, a concept that seems to escape most medical professionals. Many are also using an outdated diagnostic range for interpreting thyroid tests.

    If your pcp is unable to help, check the Doctor Referral section here and do a search on “FFC” to learn more about Fibromyalgia and Fatigue centers and find out if there is one near you. Also, don’t be too hard on your pcp. CFS is quite complex and I’m not sure it is fair to expect a pcp to be able to deal with it.

    Keep reading this board, researching past posts, and asking questions and you will learn more about dealing with this DD.
  7. mjwarchol

    mjwarchol New Member

    Well, welcome to the board. I think you will find a lot of useful information here. I was diagnosed in 1982. I was fortunate that my family doctor told me he thought I had rheumatoid arthritis and nothing could be done.

    He only did a test in the office, and I referred myself to a Rheumatologist right away. He diagnosed me on the first visit. I was lucky because so many people take years to get diagnosed, and see several doctors before diagnosis.

    I am in healthcare, so well informed. I also joined a support group when I lived in Illinois. It was great. I made a lot of lifelong friends from that. I later led support groups.

    Learn all you can. You will be surprised at some of the things that are common for fibro that you did not know until learning if from others via support groups or boards like this.

    Best of luck. Welcome again.

    M J
  8. mbofov

    mbofov Active Member

    Your adrenals may be weak, that can cause weakness and fatigue and lightheadedness. I don't know if your doctor tests for that. Your thyroid may need support also, even if your tests are normal. I had chronic sore throats for several years and discovered I had 2 different types - one was due to a pantothenic acid deficiency due to stress (weak adrenals) and the other was a low-grade strep infection due to weakened immune system. I never tested positive for strep because it was too low grade, but it was enough to make me weak and tired.

    You have a lot going on. If I were you, I would look for a naturopath or other alternative health care provider, especially since your pcp has not been able to help you for a year.

    I was helped a lot by a chiropractor who does muscle testing. He diagnosed my weak adrenals and gave me an adrenal glandular supplement which helped a lot. He also helped me with several different digestive problems, when my regular doctor could do nothing for me.

    I think you do need to educate yourself, read all you can about CFIDS. A good book is "From Fatigued to Fantastic" by Jacob Teitelbaum. He doesn't have all the answers but does have a lot of good information.

    There's a lot of good information on this board also. It has a library with articles on various topics.

    Good luck --

  9. jesuslovesu

    jesuslovesu New Member

    i appreciate everyone's help i have a feeling i am going to need all the support i can find.
    thanks again and God bless all of you.