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Frustrated and scared...

Discussion in 'Introduce yourself' started by misscarolyn, Apr 4, 2018.

  1. misscarolyn

    misscarolyn New Member

    Hi all! My name is Carolyn. I am 33 years old, living in Tacoma, Washington and day by day I seem to get worse (as far as my autoimmune symptoms) I started having noticeable joint pain, mostly in my hips, starting last July. So I started monitoring how often I would have these bouts of pain. Once they became more consistent, I noticed that my fatigue and depression began to become somewhat of an issue. I finally talked my primary care doctor to order some tests for autoimmune diseases. I had my first ANA titer in July 2017 (1.80 with a speckled pattern) but my Dr said that it was “too low” to move forward with other testing and advised me that we would continue to watch my symptoms and prescribed me low dose opioid medication to help me get through my work days (which don’t do much for my pain but help with increasing my energy) Tylenol and ibuprofen do nothing for me. When my fevers come on, Tylenol and ibuprofen don’t work, the fever just has to subside on it’s own with rest. My symptoms continue to get worse and I developed Raynauds symptoms (which I took multiple pictures of to show proof to my dr) so he ordered another ANA, which was again positive with the same result (1.80 with a speckled pattern) so, my doctor referred me to a rheumatologist. The rheumatologist ordered multiple other tests that included testing for SLE, Sjorgens and Scleroderma, all of which were negative. C-reactive protein, ESR, thyroid panel, CMP and CBC, all of which were NEGATIVE. This was such a disappointment as I was sure that I definitely would test positive for some kind of auto immune disorder. I was then brushed off by the rheumatologist, he gave me a generic diagnosis of Fibromyalgia and sent me on my way. That office visit with the rheumatologist was about 6 months ago and my symptoms are now daily. Joint pain (knee, hip, and most bothersome is now back pain in between my shoulder blades, chest pressure, fingers/hand/wrist) extreme fatigue (I can sleep for hours and not feel rested), insomnia, unexplained low grade fevers (usually accompanied with reddness on my face, “butterfly” like redness over my cheeks and nose) but yet, it’s “just fibromyalgia”. I’m not satisfied with this answer. I asked my rheumatologist if I could trial plaquenil to see if my symptoms would improve but he declined to prescribe this for me because my tests are negative. Most recently, my newest symptoms are sores on the sides of my tongue and dry/itchy eyes.

    I’m very frustrated and feel like my symptoms are just being swept under the rug. When I said this to my rheumatologist, he referred me to pain management so that is my next step. I just wanted to see if anyone else has had this experience. It’s becoming hard to maintain a full time job and my pain is worsening day by day. I very rarely had any “good days” without pain and exhaustion. This can’t just be fibro! :( any suggestions on next steps? Or symptoms management? I would appreciate any insight or suggestions. I have almost exhausted my allotted FMLA hours at work and am being watched very closing by my manager and HR. These symptoms have taken over my life and I’m lost as far as what do I do... please shout out your feedback.

    Thank you,
    Carolyn (33, Tacoma, WA)

    Ps- my maternal grandmother had a long history of arthritis
     
  2. x_claire_x

    x_claire_x Moderator

    Hi Carolyn and welcome to site.

    Firstly I am a little concerned that your Rheumatologist is only looking at the blood tests when in fact people can be diagnosed with autoimmune disease with or without positive bloodwork as it states in the diagnostic criteria https://www.thelupussite.com/lupus_diagnosis_tests/diagnosing_lupus.html and there is an alternative criteria found by a Rheumatologist in London...https://www.thelupussite.com/altcriteria.html.

    You have a lot going on and I would think you certainly deserve more care. Did they test your anti-rnp ? that is a specific test for MCTD (mixed connective tissue disease) as Raynauds is a significant sign of this ? Also did he test your CK levels ?

    I am not sure if you are in a position to be able to see another Rheumatologist ?
    Did he do specific tests for fibromyalgia as there are specific pain points for this ?

    Sorry for all the questions just trying to get the whole picture.........whilst you are waiting start a daily diary of symptoms, pain grading them every day and noting what that is stopping you doing and name specific tasks/social life etc. Take note of the weather each day and your activities and take pictures of anything visible at all..........start compiling a journal of these events.

    I am glad you have found us.... hopefully you can gain some support here whilst you find some answers to what is going on with your health, autoimmune or not.................Claire
     
    Lupusdude likes this.
  3. lazylegs

    lazylegs Moderator

    Hi Carolyn,

    Getting a diagnosis can be an uphill battle. Sometimes the bloods just haven't caught up with how the body feels. It may just take time for the picture to become clearer. In the meantime don't give up. Try keeping a journal of your symptoms, your bodies response to heat, cold and sun, and note things you now struggle to or can no longer do.

    It doesn't hurt to get a second opinion. Try to find a rheumy knowledgeable in autoimmune diseases. You also have another avenue. A Dermatologist may be able to biopsy your rash and come up with a diagnosis that way.

    Take care,
    Lazylegs
     

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