Diagnosed with Raynaud's & Livedo Reticularis

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  • #5090
    Shannen75Shannen75
    Participant

    Hello!  I’m new here.  I have been diagnosed with Raynaud’s and Livedo Reticularis.  My Dr. has run blood work to check my ANA and thyroid.  Everything came back fine.  I didn’t even know I had these problems until he noticed during my annual exam about 6 months ago.  Since then, my symptoms have progressively gotten worse.  The Livedo Reticularis started on my knees (no matter the temp) and has since spread to my entire legs and arms.  I started breaking out into rashes while in the sun and I am getting deep pain in my knees and back.  Plus, I keep getting nerve pains in my hands and feet on a daily basis now.  My Dr. believes there is an underlying cause and is scheduling me for an appointment with a Rheumatologist.  I don’t know what is going on but he seemed very concerned with how bad my skin looks and said I need to get in as soon as possible.  Also, I am now experiencing an intolerance to heat as well.  My face and hands swell up really bad and turn a bright blotchy red.  My breathing is shallow and the livedo reticularis stands out even more than when I’m cold.  It’s also worsens after a shower or after standing for very long.  I’m a 39 yr old female and I weigh 118 lbs at 5’3.  It’s good to find a forum of people with similar experiences.  It’s not fun dealing with the pain and looking like a dead person going through rigor mortis.

    #5093
    SarahSarah
    Moderator

    Hi Shannen

    Welcome to the forum. I’m sorry that you are in pain but hope that the rheumatologist can help with a treatment. Please continue to post and let us know how you are doing. We are here to support you!

    #5205
    Wevrldywevrldy
    Participant

    Hi Shannen, I hope you’ve started with a Rheumatologist and progressed through the workup!  I found mine to be the true expert about this problem!  Having answers to some of my questions was really great – took a lot of fear away for me.  I hope you will have a similar experience.

    Martha

    #10257
    Tara_33Tara Bon
    Participant

    Hi Shannen!

    I came across your post today and although this is from 2013 I thought I would reply just in case you might come across this still. Everything you have said Sounds just like my exact symptoms. I haven’t came across anyone with many of the same symptoms. Only difference is I am positive for ANA but my titer is not that high (160). I see that you say you have rashes sometimes due to the sun I am the same but I recently finally figured out some of my random blotchy red breakouts were due to not just heat buy UV light bulbs. If you do happen to come across this I’m wondering if you have found anything out to help these symptoms of yours or possibly what your diagnosis is. I hope that things are looking up for you. Sorry you have to go through this with your health.

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