I am so confused

Discussion in 'Fibromyalgia Main Forum' started by Ivey, Jul 29, 2003.

  1. Ivey

    Ivey New Member

    Hi everyone.

    I am new to this group and I'm not sure that I will be sticking around for very long as I don't have a definite diagnosis. My GP feels strongly that I am in the "advanced stages" of CFS and has scheduled an appointment with a rheumatologist for Monday. I was hoping to share my experience with you guys to see if any of this makes sense. I've already been told 2x that it is all in my head and I am starting to believe them!

    My first symptoms started 7 years ago after a botched corticosteroid injection. My symptoms were severe and lasted almost one year. They included low grade fever, fatigue, excrutiating joint pain, mouth ulcers, swelling, hair loss, muscle weakness and abnormal sensations in my arms and legs. Since that time, every few months I struggle with extreme joint pain, fever, and ulcers. I had stopped going to doctors because noone believed me. Unfortunately, that was a bad call because after 2 months of severe fatigue and recovering from a sinus infection, my vision in one eye became very blurry and portions of my face became numb-like novacaine. Shortly, thereafter, (and still running after my 2 year old) I was hospitalized with myclonic jerks over my entire body. I still had the fever, muscle weakness and ulcers (strangely, though, no joint pain this time). The responding neuro said that it was in my head and that I should see a psychiatrist. So I got a second opinion who disagreed. Of course. Anyway, the fever is still lingering - gets up to about 100.2 during the day and kills any energy I have. It goes down with rest. But, more frightening, is the tremors, jerks, head-bobs upon exertion. I just don't know what is happening and I am really scared this rheumatologist is going to say it's in my head. I don't think I can physcologically handle that. Do any of these symptoms sound familiar to any of you? I would really appreciate any feedback you guys could offer me. Thanks so much for reading - it got kinda long. Sorry.

    EZBRUZR New Member

    Some of the symptoms you mentioned I can not relate with. Many of the one you've sighted I,and many others here experience. A DX can B frustrating,many cases we have More than Just 1 dx (many can not even get that.).I feel your pain and fear. With multiple medical conditions being frequent, & so MANY educated peps around I hope you can satiate some of your needs, if not all!! Peace & Good Luck,Lisa
  3. Mikie

    Mikie Moderator

    I'm glad you have found us.

    Just my opinion, but unless this rheumy has specialized in CFIDS, he or she will likely be of little or no help.

    You need to find a doc who specializes in CFIDS. Most GP's send us to rheumies because they don't know anyone who specializes in our illnesses. Even when rheumies think they are knowledgeable of our illnesses, chances are they are not.

    Let us know in a separate post with your location in the title and if anyone knows of a good doc in your area, he or she will tell you.

    Good luck to you.

    Love, Mikie
  4. sandy10seven

    sandy10seven New Member

    Your symptoms are NOT all in your head. I will immediately walk out the door if I hear that from someone who pretends to be a physician. Shame on them. (Obviously, this is a touchy subject for me, lol.)

    There are many caring and helpful people at this site who, unfortunately, have a lot of experience with being ill and will offer a lot of sound advice. "It's all in your head," will not be heard from them.

    I'm new here and I'm amazed at how helpful everyone is.

    I suppose some people have psychosomatic symptoms, but I don't think it's common and shouldn't be the physician's response just because they can't say "I don't know what's wrong, but we'll work together to find the cause."

    There are many caring physicians out there, we just have to find them.


    [This Message was Edited on 07/29/2003]
  5. Shirl

    Shirl New Member

    Hi Ivey, welcome to the board. I am so sorry to hear how much illness you have been through without any real help or belief that you are sick.

    Most of us can relate to the doctor attitude.

    I have Fibromyalgia, and can't relate to your symptoms with the exception of fatigue, which I only get infrequently and does not last longer than a few days as for pain, FM pain is mostly in the muscles, not the joints so much.

    It sure seems like all your problems started with that corticosteroid injection. Be very sure to bring that up when you see the new doctor. Is it possible that you could have been allergic to this and it is stored in your system? I am no medical person, but it sure seems you have a problem stemming from that injection.

    Again, welcome to the board, and hope you let us know how you made out with the new doctor.

  6. Ivey

    Ivey New Member

    Thanks everybody for responding to quickly to my desperate post. Has anyone ever had neurological symptoms with CFS? Also, if I don't see a rheum dr. then what kind of doctor should I see? I've seen 2 neuros - the second one was much better - who felt strongly it was a connective tissue disease ... hence, the rheumy. Ugh. I live in the Richmond, Va area so if anyone knows of a great doctor who has time to listen to 7 years of symptoms - please, let me know. You guys are great. Thanks for the warm welcome.

  7. Mikie

    Mikie Moderator

    My specialist is a physiatrist, a doctor of physical medicine, kind of like a physical therapist who is an M.D. or D.O. He just decided to specialize in our illnesses. A lot of docs claim this, but some are not knowledgeable. It can sometimes be a challenge to find a good doc. It's not impossible for a rheumy to be knowledgeable, but it's not common.

    Sometimes internal medicine docs are specialists. Do a web search on CFIDS and see if you can find a list of good CFIDS docs there. Hopefully, someone here from your area will know of a good doc. Someone who specializes in FMS isn't necessarily good at treating CFIDS.

    Love, Mikie