Am I being ridiculous?

MrsNapoliMrsNapoli Member New Member
Hi all. I thought here might be the best place to get some advice, really appreciate any help. I suspect I may have lupus mildly. The reason being is that over the years I have had pulmonary emboli due to lupus anticoagulant, pleurisy, alopecia, restless leg syndrome, mouth ulcers, rashes on my cheeks, heart palpitations, hot flushes (not menopausal), regular headaches and less often migraines, issues with my ankles and extreme fatigue (I can literally sleep all day and wake up as tired as before). I don’t want to try to go and see someone if I am going to be laughed out of the clinic so do people think I am putting 2 and 2 together and getting 5 or that I might be thinking along the right lines? Thanks in advance.


  • CryssJayneCryssJayne Member New Member

    To start off: I don't think you're being ridiculous. You have every right to have your suspicions especially if you've been experiencing these symptoms for years. I think what your feeling is worth going to a clinic and talking to a doctor about. No one's symptoms deserve to be laughed at...

    I am not a doctor but I have been living with SLE since 2014. With that being said, a lot of the things I type on this post is stemming from my personal experience with SLE and what I've learned throughout the years.
    1. Does the rash on your cheeks resemble a 'butterfly'? One of the tell-tale signs of Lupus is a butterfly rash on a person's cheeks/face.
    2. Do you notice any change in color in your fingers and/or hands when it's cold? Sometimes people with Lupus can experience Raynaud's phenomenon, when the blood vessels in the hands and feet overreact to cold temperatures or stress. This usually result in the color of your finger tips turning red or white.

    Regarding your heart palpitations: I went to see my doctor after experiencing what I assume was heart palpitations for the first time last month. She advised me to get some blood work done to see if my Thyroid was okay. One of the two blood work results came back and it wasn't too great. She then advised me to get an ultrasound of my neck done. I'm still waiting for the results. Turns out Thyroid problems is quite common for people with Lupus (You learn something new everyday). I guess what I'm trying to say is maybe try to get some blood work done and see if your palpitations stem from an over/under active Thyroid due to Lupus?

    I think it's also important to know that not everyone experiences Lupus the same. Every person's story is different from the next. Also, Lupus is a disease that's kind of tricky to be diagnosed with since the symptoms are fairly broad. I was misdiagnosed twice by two different doctors before I was correctly diagnosed with Lupus.

    I'm sorry if this post is all over the place. I'm trying to type things off the top of my head regarding Lupus and your symptoms. I really hope at least some of the information has helped you in some way and if not then I apologize!

    Wishing nothing but the best for you!

    Crystal Jayne
  • cyndyvcyndyv Member New Member
    You are NOT ridiculous. Please go to a doctor. Just a note that some people get lucky and get a quick diagnosis and others have to see several doctors before they are diagnosed. Please don't give up. It could be lupus or some other auto immune disease, but you should not have to suffer. Make sure you stand up for yourself.
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