CREST Disease

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CREST Disease
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    A decade of being sick and tired of being sick and tired

    #Fibromyalgia #ChronicFatigue #RaynaudsPhenomenon

    I was diagnosed with fibromyalgia, chronic fatigue syndrome, and Raynaud’s nearly ten years ago when I was 21. My first symptoms were numbness and pain in my hands and arms. I was waiting tables and I couldn’t figure out why I kept dropping glasses and trays. I thought it was just stress. My diagnosis was relatively quick, thankfully, coming after only a few months as my paternal grandmother had also been battling autoimmune disease her entire life including #CRESTDisease. At the time, the medication my Rheumatologist put me on had side effects that were worse than my symptoms. It was also incredibly expensive, so I decided not to take it.

    As the years have gone by my functioning has gotten steadily worse. I feel like a shell of who I used to be. Not treating my symptoms has lead to depression, anxiety, and weight gain. I’m in near constant pain, have frequent headaches, and no matter how much rest or sleep I get I am always exhausted. I’m too tired to play with my toddler some days, and I’m not sure if I could handle another despite wanting our family to grow. I’m thankful to have a partner that understands me when the Fibro fog causes me to forget words and lose my train of thought. And he always insists on doing anything for me that might aggravate my symptoms. But recently, I’ve decided that I can’t pretend I’m managing anymore, and have made a doctors appointment to ask for a referral to a specialist. But I’m afraid. I’m afraid she won’t take me seriously. I’m afraid I’m going to downplay my symptoms the way I do when anyone asks me how I’m feeling. I’m afraid they will determine I’m not sick enough since I’m able to push myself to do things, though I know I will pay for it later. I’m afraid they won’t be able to do anything for me. I’m afraid I waited too long, and now this will be my normal, until I get worse again and then that will be my normal. Is there any hope?

    Post

    Any #ChronicIllness warriors struggling with guilt?

    Being diagnosed with #AutoimmuneDiseases #CRESTDisease #MixedConnectiveTissueDiseaseMCTD was definitely a game changer for me. I quit working about 10 years ago to take care of my elderly father after my mother passed away. My kids were small at the time so it was great for them too.
    Fast forward to a few years ago, I started gaining weight and having reproductive health issues. I was exhausted all the time, gi tract was a mess, and I felt like I had a little flu all the time.

    Last year I was diagnosed. #MixedConnectiveTissueDiseaseMCTD #sjogrens #CRESTDisease

    I struggle so much with guilt, I am still doing ok with my dad. I just hate that he's worried about me. My kids are teenagers now and can be really helpful, my illness has to be stressful for them. My husband is a saint. My best friend thinks I'm not trying hard enough. How do you stop feeling guilty? #Depression #Anxiety

    Post
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    What I look like with no skin

    #CRESTDisease #BadDay #EDS

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    Anyone have any ideas? #Fibromyalgia #RareDisease #Scleroderma #CRESTDisease #Painsomnia #ChronicPain

    So I need opinions...1st I want to apologize this is so long.....I was diagnosed with fibromyalgia about 3 weeks ago by RA doctor. He ran a ton of blood work on me. There were some that come back low and high but only by a few points so I was told I have nothing else. I have this feeling deep in my gut that I have CREST. I told RA doctor what I thought as soon as I saw him and he said “everyone always thinks they have an autoimmune disease/disorder. And 90% of the time they don’t.” I have all symptoms of CREST. The only thing I don’t know if I have is what the C stands for because I have not had an X-ray. But I have strange lumps on my fingers and wrists under my skin. I have read that this disease is hard to diagnose and that you can have a clear ANA blood test and still have it. Where I live it is hard to get in with doctors. I waited 6 months for that appointment. I am at a loss of what else to do. I can’t wait another 6 months to see a different doctor. But I also have cardiac symptoms like irregular heartbeat, blood pressure all over the place, rapid heart rate, sometimes it feels like my heart hurts. maybe I should see a heart doctor? I just want to give up.

    Post

    Crest #Scleroderma #CRESTDisease

    Newly diagnosed-I’m desperately trying not to google