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I'm still convinced I have Lupus

Posted , 6 users are following.

Jan999
Jan999

I have been on this forum before because I was convinced I had lupus. I had a lot of symptoms such as lethargy, joint pain, hair loss, rash etc but this was disproved by different consultants. I do have osteoarthritis in some joints so I thought perhaps I was wrong. I had a blood test that showed I had a raised anti phospholipid antibody then the next one was within normal limits. However I now have this terrible feeling of overheating. I wake up soaking wet and I have to dry myself down, shower and change the bedclothes every day. The only way to explain it is that I feel as though I'm overheating from inside my body. Not only do I overheat at night but during the day as well sometimes every hour. Is this a symptom of Lupus? I'm now so confused by what I've read and what consultants have told me 

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  • amber_6594
    amber_6594 Jan999

    Posted

    Hiya matron ive had lupus for 5 years now and yes i do sweat but not to the extend that id have to shower and it does happen somtimes in the day time ... i dont know maybe this is related to somthing eles you may have maybe ask gp for advice ...
    • Jan999
      Jan999 amber_6594

      Posted

      Thanks amber. I intend to speak to my GP or my consultant. It's becoming unbearable at times
    • pam_87693
      pam_87693 amber_6594

      Posted

      Yes you are correct but with me it's while I'm awake and having to think hard or work. If it's at night and your in the menopause its normal, but if it's excessive or during the day it's SLE and its called Hyperhydrosis. Marion if you live in the UK please join my FB group British Sjögren's. It's run by BSSA members as in the growing opinion of several consultants they are little wolf and big wolf. I have suggested to Heather at the BSSA that one topic for next year's conference in Swindon is the difference between the 2. Another I have suggested is hormones which most certainly affect connective tissue diseases. 
    • pam_87693
      pam_87693 amber_6594

      Posted

      I agree, I certainly sweat excessively in the day if stressed, I have EDSIII and Lots of other autoimmune problems that have given me SLE, SS and I am utterly certain that our bodies are truly out of balance. 
    • pam_87693
      pam_87693 Jan999

      Posted

      I have the name of the drugs if you live in the UK but at the moment I haven't checked if they are Consultant only or off label but I shall be seeing my GP on Monday. Once I know I will advise you if I am allowed. 
    • pam_87693
      pam_87693 Jan999

      Posted

      Well you don't have Lupus! your very lucky so stop worrying and enjoy your life! 
    • Jan999
      Jan999 pam_87693

      Posted

      I'll let the consultant make that decision 
    • pam_87693
      pam_87693 Jan999

      Posted

      Who is you consultant Matron? Because like you I have the same problems and I really don't know who to turn to. My consultant has misdiagnosed me too. I'm getting desperate and I really don't understand him. He tells me I'm not ill and then he told me I was but when saw lots of others they said the same your not ill you don't have anything at all. I really am getting very sick of being diagnosed then misdiagnosed just like you. I've been all over the country seen 8 rheumys and still got nowhere at all. Your consultant sounds brilliant so can you tell me is he a local one? Mine are all local all of them. 
    • Jan999
      Jan999 pam_87693

      Posted

      I'm in the UK Pam so the name of my consultant wouldn't mean anything to you. 
  • amber_6594
    amber_6594 Jan999

    Posted

    And also i cant tolerate the cold at all and i cant tolerate when its too hot either this condition so weird ... i know somebody that went to gp about all these type of symtoms it took 15 years for them to diagnose lupus
    • Jan999
      Jan999 amber_6594

      Posted

      I also have raynauds syndrome but this is the first time I've been too warm 
    • 1_hand_works
      1_hand_works Jan999

      Posted

      Hi Matron. I had the same overheating thing going on for months. Not had it since I started on the methotrexate though. I also have Raynauds in my hands and feet, the overheating wasn't there though, mostly trunk, neck and head. So boiling in the middle and cold peripheries, bizarre. I thought I was going through the menopause, but since the MTX I just have purpley / blue / red cold hands and feet now presumably the Raynauds. MTX has worked for the overheating, my rash and mouth ulcers,but made little / no difference to swelling, stiffness and pain plus side effects are rubbish, but the rash was horrible, so at least it is an improvement. Any little improvement is something. Good luck, I completely understand though, you wake up boiling and dripping in sweat and then within minutes you are cold and wet and freezing. Have a chat with GP and consultant, let me know how you getting on
    • Jan999
      Jan999 1_hand_works

      Posted

      Thank you 1 hand works you have made me realise I can't go in like this and I need to speak to someone.
    • 1_hand_works
      1_hand_works Jan999

      Posted

      Hi, the long and short of it is that they need to treat your symptoms, not your blood results. Like the specialist nurse at my clinic says, I am the one living in my skin, so it should be me who decides what is important to me. The MTX tablets were terrible for me though. Some people are fine on them. Go back and see what they say. Good luck hun

       

    • pam_87693
      pam_87693 amber_6594

      Posted

      Amber my feet are numb now, but they have been numb and cold all summer! I was wearing bed socks all through the summer too! 
    • pam_87693
      pam_87693 Jan999

      Posted

      Yes I have Raynaulds in my hands but my legs and feet are do white and cold they are beyond Raynaulds! I don't have diabetes or high BP either! I'm a bleeder not a clotter! 
    • pam_87693
      pam_87693 1_hand_works

      Posted

      Hi one hand I think we know each other! Do you inject? If so what uk med do you inject or have via a catheter? 
    • 1_hand_works
      1_hand_works pam_87693

      Posted

      Hi Pam, so sorry have been a bit under the weather and not noticed this, not ignoring you honest! I was on metoject but since my last rheumy appt am now doing azathioprine. Too many infections and side effects. Your pic looks vaguely familiar? When I figure out how to message you, I will
    • pam_87693
      pam_87693 1_hand_works

      Posted

      Hi yes Azathioprine works for some but not for others. I tried Pregablin, just for one night never again! That is the problem with SLE for patients GPs and even constants! Tried Leflunomide twice caused perupra both times!! 
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