PLEASE help me!!! (long)

Discussion in 'Fibromyalgia Main Forum' started by scottabir, Feb 6, 2003.

  1. scottabir

    scottabir New Member

    I am new to this board. I need help in finding a doctor as well as "dealing" with my Primary Care Doc (PCP).
    Let me give you some history...

    First, I am 22 years old, I just moved to Mi from AZ last year and for the first time in 4 years I finally have insurance. 4 years ago when I was still in AZ I was having abdominal pain, fatigue, migraines, soar throats, and swollen lymph nodes. Actually most of those symptoms I had experienced at age 13 and when I told my father he just brushed it off as pubery, as did I. Well 4 years ago I had the abdominal pain and was sent to numerous Docs who said I was young so there was no way I was sick. Finally with the referal from a friend I went and saw an infertility (IVF)Dr. He did major blood work on me and found I have hypercoagultion (he put me on blood thinners), as well as CFIDS and FM. Well soon after I had to quit my job because I was unable to stay wake. Now 4 years later I tried to get my records from the IVF Dr, but he closed down his practice and my records heve been lost!

    During this time my Mom was diagnosed as with FM/CFS as well as a blood disorder which causes the blood clots. So now that I have insurance I went to my PCP and told her all about my history as well as the blood disorder my mom has. She ordered blood work and came back POSITIVE for the blood disorder but she told me EVERYTHING came back normal!!!! So I switched DRs. I went to my new PCP today and he told me I don't have anything wrong with me and he put me on Paxil for HYPOCHONDRIA!! He said my brain is playing tricks on me and that although I have pain and MANY MANY other symptoms its all in my head and I am not sick!!! He did refer me to a hematologist for the blood disorder but he said I should never have been on blood thinners. So now I don't know what to do. I am soooo tired of being told "its in my head"! Since I was thirteen I have had problems and since than I have been told either I am too young to be sick or its all in your head! Please help me! I am at my wits end! I can't hold down a job my husband and I are living with parents because I can't work. I am so frustrated. I know if I had a physical abnormality this would not be happening.

    Any advice given WILL be GREATLY appreciated,
    Thank you

    PS Sorry for such a long post.
  2. Beth37

    Beth37 New Member

    Hi,Abi,Wanted to welcome you.I don't have much advice.I had,which I am sure many have had problems finding a doctor that knows about FMS. Just keep searching for a doctor that can help you.I know it can be very frustating,hang in there.Maybe you can go to a local support group,and they could recemend a doctor that knows about FMS.Wish you luck!! Don't worry about how long your posts are,go ahead and vent that's what this site is all about.Take Care! Beth
  3. kellbear

    kellbear New Member

    I just posted to this but it didnt go through so I will try it again. I understand completely. I guess it is hard to find a doctor who is familiar with CFS/FS. I have not even gotten a diagnosis yet after 1 year of being really ill and after a lot of tests. It is very frusterating and I have switched PCP's three times this year trying to find one who doesnt look at me like I am nutso or tell me that my "symptoms" are so vague that they must the a typical "female" response to stress. That realllly makes me mad, and the funny thing is that my PCP's have been females because I thought that females would understand. Click on my name to the left and read my first posting yesterday that tells you my story. I am young as well, 28 and I actually told my doctor that young people have to be almost dead for anyone to take them seriously. I don't even mention to my doctors that I have a family history of mental illness and stress related issues on my fathers family because if I do they automatically assume that I have emotional problems. CFS/FM/ and Lupus runs on my mother's side of the family.

    God bless and let me know if you want to talk.
  4. scottabir

    scottabir New Member

    Its nice to know I am not alone in this, although, this isn't something I'd wish upon anyone. Its is really hard to find Drs that beleive it is possible for young people to be sick. My chiropractor is so open minded about things like this, He told me a week ago "someone who has diabetes is going to know more about their illness than any Dr. Same goes for any illness." He has been the only Dr I have come in contact with who has really been trying to help me. He is even working with a nutritionist for me. As far as insurance, I have a POS. SO I have the option to either get referrals from my PCP or go to specialists on my own. The only problem is without a referral I have to pay a deductable as well as out of network costa, which I can't afford. Does anyone know if once I am diagnosed would I still have to pay out of network in that circumstance?
    Anyway, I thank you all for your kind and much needed support, I will come here often.

  5. scottabir

    scottabir New Member

    I would love to take you up on your offer. It sounds like our family backrounds are very similar!

  6. kellbear

    kellbear New Member

    I would love to talk. My email is

    Drop me a line
  7. EllenComstock

    EllenComstock New Member

    do you live? I see a fibro specialist in Monroe, Michigan. You might consider going to him. His name is Dr. Barbour. I can give you more info if you think you might be interested. Just post another message to me so I will see it.

    Sorry for all your frustrations-I am sure you are finding a lot of people here can relate!

  8. lou2

    lou2 New Member

    As i think some of the others said. I think its important to hang in there, becasue you WILL eventually find a doctor who is right for you.
    I also totally understand the being young thing. I am also 22, from the uk, and i have found it evry frustrating that you definitely have to appear to be very very sick for doctors to take you seriuosly. I have found that they are too quick to jump on the bandwagon and say it must be , stress, boyfriend troubles, college troubles, too many late nights drinking etc........
    Have you had all the tests for vitamin deficiencies ect. i knwo i was slightly relieved to find i had a magnesium, iron and selinium deficiency, (easier to blame the pain on something!)
    But anyway i understand the frustration of being so young, so feel free to chat about anything with me too,
    good luck with finding a doctor. you will, im sure!
    lou x
  9. Kimba

    Kimba New Member

    I was just talking to my husband the other night about why don't we get a copy of test results. Do doctors think that we are so stupid that we can not read them for ourselves? I figure that we pay for the tests, we should get a copy of the results. Maybe you should insist on getting a copy of the result and then start doing a little research.

    Besides FM I also have very bad ankles, I have had three major operations on them in the last three years. I now know the name of every bone, muscle, ligiment, and tendon and a few nerves. I also looked up the operations that were going to be performed on me. (pictures and all)

    The next time you go to the doctor, have some articles with you that point out what is going on with your body. You have to show up to a doctor with questions and with research that shows that you know or at least have an idea what is wrong.

    Lastly, the next time a doctor that tells you that it is "all in your head", stand up, tell him/her "I guess this appointment is all in my head, so don't bother to bill me because I am not going to pay a doctor that is not willing to at least listen to me" and calmly walk out.

    Keeping looking for a good doctor, they are out there.

    Good luck.
  10. scottabir

    scottabir New Member

    all for your posts!

    Ellen, I live in Grand Rapids. Where is Monroe? If its not too far I would love to contact your Dr. Or even if it is too far maybe his office could give me a name of a specialist in GR. Thanks so much

    kimba, as patients who do have the right to demand copies of our lab tests as well as anything else in our records. With my last Dr I demanded a copy of my lab results when she told me everything came back normal. When I received the copies I was shocked too see that my results had two abnormalities on it. Thats when I left to go to my current Dr. -which as you know, isn't much better :(

    Again, Thank you all for your posts and support I was really starting to feel like I should give up.

    kell_bear, I plan on e-mailing you by the end of the week, I spend the beginning of the week resting up after the weekend and the second part of the weel resting up for the new weekend! Does this sound familiar to anyone??
  11. scottabir

    scottabir New Member

    one more thing, I guess I should learn to stand up for myself. I get so intimidated by Dr.s and I don't know how not too. Maybe its just because when growing up your taught to respect your elders but I guess when you are dealing with bad Dr.s the rules really don't apply, right?