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  1. #1
    Join Date
    Nov 2008
    Thanked 1 Time in 1 Post

    Angry Bit of advice/comfort

    Hey everyone, not been on here for a while cause I've been managing my lupus quite well, but today I had such a bad experience I just needed people to talk to

    Quick summary, I'm 22, have relatively mild lupus, got diagnosed when i was 18.

    Anyway, 3 days ago I was out for my birthday and I was in a nightclub, and I got really short of breath, had to leave the club because I physically couldn't breathe and thought I was about to faint.

    So, 3 days later and I'm still getting these chest pains, and on top of not being able to breath properly, I now have a sore throat and a pain in my shoulders and neck, along with getting a fever. So I went to an NHS walk-in centre, and ended up waiting 2 hours to see a nurse... I told her my symptoms and she replied 'You're not having trouble breathing because you can talk' I was like yes I can't talk but I've been in discomfort for 3 days, and now I'm getting worse. Told her I had lupus etc etc. She then shoved a stethoscope on ym chest again and said she couldn't see anything wrong, and told me to take Lemsip (like cold/flu remedy).. and to rest for a few days.

    Obviously she was completely fobbing me off, but I was so humiliated by it that I'm too embarrassed to go to anyone else, but at the same time, I'm having problems with my chest and I'm worried if it gets worse it'll set my lupus off and I'll be very ill. I have had issues with my chest before and every time I get told theres nothing wrong, but there is, because I can't breathe like I normally do.. So I'm just a bit stuck, looking for some help lol!!

  2. #2
    Join Date
    Apr 2009
    Thanked 143 Times in 105 Posts


    Everytime that happened to me my doc blew me off then last time I flared it got worse and they did a chest CT and found some spots. So much for only needing more exercise, though I will say that it was helped me alot.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  3. #3
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    do you have a usual gp or rhuemy that you see.

    chest pains are never because of nothing.
    it might just be imflamation of the chest muscles......
    but it could also be signs of something else.

    if it was me..... i would persuit it further.

  4. #4
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Chest pains and difficulty breathing can be indications of something very serious and should not be dismissed easily. You have nothing to be embarrassed or humiliated about. You have a right to be taken seriously, a right to be listened to and a right to be treated appropriately.
    Do not wait, get to a doctor as soon as you can and INSIST that they listen to you and do more than just listen to your lungs/heart with a stethoscope.
    Lupus patients are often afflicted with inflammation of the sac surrounding the lungs (pleurisy) and with inflammation in the heart (pericarditis). Both conditions can be extremely serious and even fatal if not treated quickly and appropriately. So, stand up for your rights and demand tests, answers, and treatments. Do no let the ignorance of medical staff to put your health at risk.
    Please let us know how you are and what you've decided to do. We are here for you

    Peace and Blessings
    Look For The Good and Praise It!

  5. The Following 3 Users Say Thank You to Saysusie For This Useful Post:

    Gizmo (10-11-2011), Nonna (10-11-2011), steve.b (10-11-2011)

  6. #5
    Join Date
    May 2011
    Thanked 353 Times in 232 Posts


    Susie is right, you need to be insistent that this is checked out more thoroughly. Besides inflammation of the heart and lungs, lupus also increases your risk of coronary artery disease (my cardiologist told me the youngest heart attack patient he ever had was in her 20's and had lupus). That same doctor said they are finding that people with lupus get inflammation and spasms of the small blood vessels around the heart. Since they are tiny vessels it is not life-threatening, but it can be very debilitating. Unfortunately, that doesn't show up on any tests. If you have clotting issues then the doctors should check for pulmonary embolism right away. If you have a fever, they should at the very least look for pneumonia, which isn't always detected by a stethescope. Fever can also indicate a lupus flare, which would make looking at pericarditis and pleurisy even more important.

    I've had chest pain and transient shortness of breath for years, and it is a frightening and frustrating symptom to deal with. Please stay in touch. Your experiences will help others on this site, plus, we like to know how folks are doing.

  7. #6
    Join Date
    Apr 2010
    Mackay, Australia
    Thanked 108 Times in 68 Posts


    That nurse makes me angry

    When I had a pulmonary embolism I could still talk!! Thats a lifethreatening event... everything seemed normal and they almost passed it off as nothing until I fainted. My O2 levels were really low.

    You should see your GP and put in a complaint about that nurse.

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