We all have to be our own advocates

Discussion in 'Fibromyalgia Main Forum' started by jaltair, Mar 4, 2006.

  1. jaltair

    jaltair New Member

    Here’s what “has my goat” lately

    Those of you who may know me somewhat, you realize that I was diagnosed with FMS three years back; however, for a period of time after the diagnosis, I was in denial but my body wouldn’t let me forget the pain, fatigue, and general “flu-like” feelings tat I was going through. Even my PMD, an internist had to reaffirm to me that I had FMS. Now, I knew that there was something wrong; no matter how hard I tried to fight the FMS, the symptoms always won. A friend, who is also my allergist, ran some more tests due to my feeling that the PMD didn’t want to look past FMS. From those tests, I learned that my ANA was elevated and that I had antibodies to my parietal cells (lining of the stomach). My friend told me that this was beyond his expertise and that I needed to see a rheumatologist. I made copies of the test that was run by my friend to my PMD. That seemed to (excuse the word, no other way to say it) p##s her off. Why, I’m not sure. I thought she would be grateful!

    The fatigue became unrelenting; an early this past year, and after a sleep study that was normal, and my PMD made another diagnosis, CFS.

    Before I had the CFS diagnosis, I went to my rheumatologist on a self-referral as was suggested by my allergist friend; I was sure that I had something else going on, and my PMD seemed to want to settle in with the FMS/CFS situation.

    The rheumatologist ran the tests, and the high ANA was confirmed along with some other abnormalities. At that particular time, the rheumatologist told me at that time that it was unlikely that I had Lupus as I was 58 then, and Lupus usually affects younger people; he told me that ANA levels were high in some people with FMS and that it was highly unlikely that Lupus would develop. However, he did state that it could be “early Lupus” and that he’d keep monitoring through periodic testing.

    This past February 13, my tests run by the rheumatologist came back, and guess what.. I had Lupus. The rheumatologist was even surprised.

    Many of the symptoms of Lupus are the same as FMS and CFS; the rheumatologist told me that I had FMS, and that the fatigue is due to the Lupus. He told me that I “would die of old age, not the Lupus.” That seems well and good. When I asked about the fatigue and if there were anything to help, he told me that I’d “have to live with it.”

    I went to see my PMD and told her that the rheumatologist had diagnosed me with Lupus. She was surprised, and then asked if he were going to send records over. I told her that he had stated she could call him and talk with him, but I did sign releases so she could have the records.

    Please don’t give up trying to determine if you have other things going on than the FMS or CFS. We all need to be our own advocates and to realize that doctors are not specialists in everything.
  2. spiritsky

    spiritsky Member

    Never just hand over your health for someone else to fix. Get help of course, but take the lead in your own healing.

    Good going!!!
  3. Hope4Sofia

    Hope4Sofia New Member

    I just really feel like there is more to the story than FMS.

    I go into my rheumy this next week to go over lab results but they did tell me I had an elevated sed rate (which apparently could mean anything????). I know it reflects inflamation but I guess that could be a lot of things.

    I did a symptoms worksheet on autoimmune dz and marked pretty high for hashimotos and sjorgrens (just in my symptoms not labs yet).

    I also have a strong family connection which makes me think it isn't viral. My grandfather, Father, 2 aunts and my brother - all symptomatic and dx w/ relating conditions (CFS/IBS etc).

    I just wish someone could help me. I've been looking for help for 15 years! I only just got the FMS dx in Feb.

    Anyway, thank you for your story. It does motivate me to take charge in this mystery.

  4. jaltair

    jaltair New Member

    spiritsky - Your name is great! Thanks for the input .. I hope this can encourage others to work at getting beyond the diagnosis of FMS/CFS.

    fight4acure - I think it's important to realize that doctors do not specialize in everything and that they need to get as many people through and really do minimal more for economic reasons. This tends to make them not as conscientious as they should be. Is that what you mean by "never trusting doctors?" I think you mean not putting them on pedestals like some people have done.

    hope4sofia - Be sure to get copies of all the lab work and put it in a file. What I've found really helpful is keeping a diary of everything to do with my health and doctors' visits, etc. Also, autoimmune disorders run in my family. My mother is 84, and has had all sorts of problems during her life. I thnk it is probably an inherited tendency, but also believe that there are other triggers such as environmental factors, and / or diseases or illnesses that we may not even be aware of.

    I'm glad that this has helped.

  5. jakeg

    jakeg New Member

    While I do agree with you about being our own health advocate, I also agree with fight. Most if not all doctors think with their tiny little brains and fat wallets.

    I've been told by many docs when I was a youngster that I'd be lucky to see the age of 19 do to the heart defects that I was born with. I'm going on 45 yrs now. Every doc that I have been to lately and though out my life just do the minimal things they need to do.

    Since I was Dx with this DD every doc I've been to just brushes all of my ills off on the FM instead of checking to make sure that it is not something else happening.

    My last pcp even stated that if I stopped smoking and drinking that my FM would go away and also said that I'm using this DD for a secondary gain(YEAH right)you know what I told him and where to stick his practice. He also was trying to convince my rheumy and neuro docs that this was a depression thing and not FM.

    Is it no wander that allot people dislike doctors, they think they are holier then thou and belong in a group above the rest of us.

  6. kdeenak

    kdeenak New Member

    You know, I agree with everything all of you are saying, and it just makes me mad as heck!! (too put it delicately) I have worked with doctors my whole life and they do think they are better than everyone else for the most part and that they are so smart, and when they can't figure something out, instead of trying harder, they want to just dismiss you and find something to label you with like CFS or FM.

    It brings back a lot of bad memories of fighting with doctors before I was diagnosed only to have them tell me it was all in my head when my ANA was elevated, lab work was coming back crazy, and I guess I just got tired and relented. A doctor I considered a friend that I worked for for years told me basically that I was a nut and needed to get a life and stop focusing on "all these symptoms". I left there crying like a baby. BUT, the pain doctor made me feel a little better, the breast reduction surgery they recommended took most of my symptoms away, Topamax made me feel better so I thought well I guess they were right. Now, after two years I am back with FM again and questioning things a little again.

    A lot of times I wish I could just write my own prescriptions because I feel a lot of times when I go to the doctor I am prepared, do research, and know more about what is going on and what I need than the doctor. That may sound a little egotistical but last week I had a UTI and the nurse practitioner asked me which antibiotic do you usually get, and she rattled off three or four kinds and said which one do you want? Am I a doctor? Am I supposed to know? Frankly I didn't remember because my memory is shot nowdays. So I am wondering if I picked the right one, LOL. The medical profession is just madness.
  7. jaltair

    jaltair New Member

    I do understand, believe me! I've had to do the thinking for the docs I work with as well.

    By all means, stay off any topic that gives you nicotine urges! I so admire you for quitting, cause I know how hard it is. We do have to fight4acure!

    Hugs, Jeannette
  8. karatelady52

    karatelady52 New Member

    If I hadn't decided to leave my pain specialist of 6 years (and I really liked her), I'd still be going there, still be taking Ultracet which didn't do much for my FM/CFS and still have no answers. I would still have lots and lots of pain, stiffness and extreme fatigue.

    Went to the FFC, got diagnosed with 3 viruses and lyme disease. Tried abx for 6 months -- way too hard on my immune system -- for others, it works great but not for me.

    Did a lot of research -- am using Rife Machine and will be getting in a sauna tent with pumped in oxygen/ozone for detoxing this week. My doctor was ok with all of it.

    I won't stop fighting until I start getting well. What's the alternative. Be a patient for life so our dear ole doctors can go on their sky trips every year?

    I'd rather be the one doing that. I'm sure not there yet but have a goal and can see a light at the end of the tunnel. At least now I know what I'm fighting.

  9. Shannonsparkles

    Shannonsparkles New Member

    Someone said something about docs having a 'holier than thou' attitude.

    The last doc I saw asked me if I would "Make a leap of faith" and try her program for the next six months. Faith?! Who is she, God? I'd sooner let someone else pick out my wardrobe for the next six months than blindly entrust my medical care to a stranger.

    I asked her what her "program" was. She was evasive. I tried to make it clear that I was the one in control of my treatment, and my decisions would be my own, and informed ones at that!

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