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Mixed connective tissue disease -new diagnosis

Discussion in 'Newly diagnosed' started by Lola28, May 18, 2019.

  1. Lola28

    Lola28 New Member

    Is it normal to be more aware of aches and pains once diagnosed? Every day I feel the pain in my back, hips & legs and most nights I am woken by neck pain or joint pain. I'm a bit freaked out wondering if the recent flares have triggered more pain. (I should add that because the diagnosis was made through the hospital I have not yet seen the rheumatologist for any meds and because they originally thought I had lymphoma or bone cancer I was not offered any meds. Diagnosis was suspected but confirmed after I was no longer flaring.)
    I struggle some days and feel overwhelmed by this diagnosis. I know that some people only have occasional flares and that meds can help to manage it, but it feels so big at times. I try to live one day at a time but sometimes find myself worrying about work and money because as it is I only work 3 days due to my on going fatigue which never goes away. Work have been supportive but are asking how i will manage my symptoms and i know that despite their loyalty they need someone who can turn up to work without being sick, (3 weeks off the past 7 weeks after the 2 flares). Has anyone else found an increase in symptoms after diagnosis?
    Last edited: May 18, 2019
  2. Jessica1

    Jessica1 Moderator

    Hi Lola,

    Lupus is a funny old thing and I often find that no two days are the same. I can have an ache or pain one day that is gone overnight or exchanged for a different one. That said, I can tell you that I no longer have the level of symptoms I had before I started on my meds.

    It could be that your symptoms are worse because your flare hasn't been taken a hold of yet, you might notice things more now that you know what it is you have....who knows? The important thing is that you're now on the road to improvement as you should get medication to manage the symptoms. It can take time to get the right mix of medication and a while for it to kick in so you will need to be patient and kind to yourself (easier said than done!)

    Do you have a date for an appointment with a rheumatologist?
    Best wishes,
  3. Lola28

    Lola28 New Member

    Thanks Jess. I find out on 28th what my appointment date is because I am back at hospital seeing the infectious disease specialist, who turned out to be more interested in my symptoms and supportive than the immunologist I saw. He is the one that has told me to stop seeing the immunologist and made a referral for the rheumatologist, but both confirmed auto after my recent bloods.
  4. Jessica1

    Jessica1 Moderator

    Let's hope that you don't have long to wait then. All the best with your appointment:)

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