I'm being worked up for a probable diagnosis of lupus. Have a few questions about symptoms

Posted , 4 users are following.

Hi my name is Stephanie. I am 30 years old. This past month has been terrible for me. Started with swelling of the feet and ankles. When I say swelling I mean real pitting edema. Gained a lot of weight mostly from fluid retention. Then developed pain in ankles, knees, and knuckles with the most severe pain in the knees. I get very warm and sweat a lot. Was hospitalized for a week and discharged with no diagnosis. My inflammatory markets were high such as my ESR, CRP, and have a positive ANA. Went for a second opinion which is leaning towards the diagnosis of Lupus. Anyone out there that can help me with some ideas with what they have experienced. Thanks!

0 likes, 10 replies

Report / Delete

10 Replies

  • Posted

    I also was put on steroids 3 days ago. Before that I could not get out of bed without holding on to something to walk because the joint pain was so terrible and my hands would be cramped and numb right when i wake up. Hard to brush my teeth with the pain in the hands. Since the steroids it seems to have gotten much better expect the knees are still not great. When I squat I have to hold on to something to get up.
    Report / Delete Reply
  • Posted

    Hi Stephanie my name is Gretel I was diagnosed 25 yr with Lupus. I have 3 young adult daughters and one has lupus also when she was first tested she had a positive ANA but was told she didn't have lupus because she needed to have 12 symptoms of lupus and just last week my youngest 21 got tested and her ANA came back positive. Now I recall when I was tested it was the samething but I was told back then that I had lupus. I was very tired had and ear infection that wouldn't go away but that was about it, till I gave birth to my 3rd baby and she was about 2 months one morning about 5am I woke up with my entire body as if a truck had hit me and all my bones from head to toe where hurting and I couldn't move. My husband took me to the ER and was told I was having a major lupus flare up. So I suggest you go see your doctor and see if you have those 12 symptoms, they can also run more test to see if you are having a Lupus flare up. I hope anything I shared with you helps a little bit and you can Google those symptoms btw. Hang in there!
    Report / Delete Reply
  • Posted

    hi lve had simular symptoms, l guess moderately for a few years, but tried to ignore them as still able to live a normalish life, if not as active and tired easier, The last few months got far worse, feel like a semi invalid due to level of fatigue, major loss of energy, weakness, with pain increasing, always had long standing pelvic pain, put down to intersticial but in last few month, lve had bouts of severe shoulder pain, wrists, thumbs, hands and feet, my hands and feet go into cramps and spasm, can then go up the legs a bit with cramps also, and gneral aches and pains, .My ankles do swell up more.  l dont think my disability with it sounds quite as extreme as yours, but still an effort of will to walk short distances, more so from waking, l get both hot and stuffy, but can also feel chilled.  l looked up extensive list of symptoms for fibromyalgia as it often goes with ic. and found l got most, even obscure ones. But noticed last few week forhead then cheek rash, unusual for me, but def not typical butterfly rash over nose. Gps diagnoses nothing and blood tests seem ok, but agree fibro possible but referred me to rheumy to find out.  l notice more are struggling to get diagnoses of fibro, lupus, cfs.  Your post near echoes one from Rhia from a few days ago, she also wondering about lupus, l didnt know there was 12symptoms will have a look,  Hope we all get answers soon
    Report / Delete Reply
    • Posted

      Wow your symptoms sound very similar to mine. It's s terrible feeling. I also get that redness to my cheeks and nose that my doc noticed when i saw her. She said it looked like the butterfly rash. I get it when I'm flushed and warm. This feeling is terrible. I hope we get answers soon. It's very frustrating. Especially with the summer coming and so many things coming up in dreading it because i have no energy.
      Report / Delete Reply
  • Posted

    Hi Stephy try NOT to get too worked up. Autoimmune diseases love you to be worked up! I'm Pam and I run a FB group called BRITISH SJOGRENS/SLE/APS/EDS 

    i have both Sjögren's and Lupus. Like you I had a positive ANA, but it really depends how high the titre was. If it's 20 or 40 it might be just because you have some form of infection. If it was higher you may certainly have either Sjögren's or SLE or both. Try not to worry, if your a nurse remember your in contact with germs full time. However if your worrying please do come into my FB group. My Consultant is the President of the BSSA the charity got Sjögren's if your a UK citizen. We are there for friendship and knowledge, we don't do politics we work as a FB forum for the diseases mentioned. Good luck and stay calm🍀

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up