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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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  • jujubeee
    jujubeee Jan999

    Posted

    Have you had your thyroid checked?  Those symptoms sound like an underactive thyroid- https://patient.info/health/hypothyroidism-underactive-thyroid-leaflet

    That doesn't mean you do or you don't have lupus- you could have both.  You say you had diagnostics about clotting but have you had your antibodies checked (a lupus panel or a titer test)  This will check dsDNA (or double stranded DNA which is very high probability of lupus) but it can be elusive-

    Emis Moderator comment: I have replaced the given link with a link to the equivalent article on our site.

    • Jan999
      Jan999 jujubeee

      Posted

      Yes I had my thyroid checked in September, normal range.
    • Jan999
      Jan999 jujubeee

      Posted

      Sorry clicked sent too quickly jujubeee. Antibodies have been checked on several occasions. My antiphospholoid was raised slightly but when it was checked again in May it was within normal limits.
    • pam_87693
      pam_87693 Jan999

      Posted

      Well I have never had APS checked. If I had they would have been negative. Do you have an historical ANA? Matron it really is important for your future health. Do you have white or shrivelled hands or red blotches on your palms? Do you have any finger nail problems? Do you have any bendy joints? If your hypermobile then try to put your fingers in the the prayer position. If your not do the same is there a gap in when you do this? Do you feel cold? Have you lost the outer edge of your eyebrow? Matron how old are you? I'm 68! Do you look pale. Are you anaemic? I am really trying to help you? I downloaded something that might interest you. What meds are you on, if any? Some may make you worse? Especially if you ever take an American drug that I can't mention as it will be moderated. It's not a good idea to listen to the USA drugs. Do you gave burning and tingling. Do you have dry eyes. Do you have any of the problems associated with SS? 

      .

    • Jan999
      Jan999 pam_87693

      Posted

      Hi pam. I've had a number of tests to see if I have lupus. The dry eye test and saliva tests were negative. I'm not hyper mobile but I do have osteoarthritis in several joints. I also have raynauds so I do feel the cold and I am prescribed Nifedipine which has helped enormously. I'm not anaemic and don't have finger nail problems. I don't understand what you mean by SS but I'm 62 years old.
    • pam_87693
      pam_87693 Jan999

      Posted

      Sorry Matron Sjögren's syndrome! Then that figures as you can have overlaps. So you can have primary Sjorgrens with secondary Lupus. If you don't have the dry eyes or mouth you still may have SLE! About Nifedipine I'm glad it's helping you but you do need to ask your GP as it might affect your liver. Now for the real shock as I have SS and an ANA with a high titre I went into Lupus UK as while the drugs are the same as SS so Plaquinel if it's available or hydroxychloroquine or MTX you may be one of the 5% who are Seronegative. I went in downloaded all their information and at the end there were you! chatting on this forum! So we are both Lupus novices! How weird is that! I used my body to prove I have Seronegative Sjögren's and lip biopsy negative too only to find you! Where do you live? Please join us in British Sjögren's to chat it would be lovely to see you if you live in the UK! 
    • Jan999
      Jan999 pam_87693

      Posted

      Hello pam I am in the UK. Even though I'm a nurse I'm slightly baffled about your information so I need to digest it and do some research but thank you so much for all of this information.
  • pam_87693
    pam_87693 Jan999

    Posted

    That certainly sounds like SLE to me. I have just been tested at UCHL the hospital I went to age 8 with terrible migraines. I returned 60 years later to be told I have SeronegativeSS and SLE with negative lip biopsy and Hyperhydrosis as well as small fibre neuropathy. To add to my joys I have PCOS, EDS, hypothyroid, inappropriate drugs and operations and Dr. Hagen said she is amazed I'm still alive. I said well the medical profession have done their best to kill me! I had a most interesting stay for 3 days and I think the hospital is amazing, the cleanliness was exceptional. I congratulated an astonished housekeeper who spent 30 minutes cleaning a recently vacated bed. Dr Hagen agreed with me. I have a son who sadly inherited EDS and Psoriasis from me and says he don't have EDS! He is a consultant surgeon so when my husband said if he can cut it out you don't have it! This made Dr. Hagen laugh so much she was almost crying! You have to learn to laugh at life with chronic illness. If you live in the UK you are most welcome to join my FB group British Sjögren's, I am Pam Newman a BSSA member and we talked about the body being out of balance at this year's conference. If you have a dry mouth and eyes you may have Sjögren's but the Hyperhydrosis is common in both conditions. I do hope this helps you Matron
    • Jan999
      Jan999 pam_87693

      Posted

      Thank you pam you have helped and given me a lot to think about.
    • amber_6594
      amber_6594 Jan999

      Posted

      I hope your problem gets sorted out and they find your under lining problem .... I was perfectly fine 6 years ago had baby with c section came home then started feeling unwell told gp he said due to op n baby im feeling tiredout n never gave me anything then i got worse sickness dieareh n blacking out my husband got worid and took me a&e thy just ignored fact howsick i was untill i calapased off trolly rushed into resus and put into icu high demand i was dying body was shutting down ... I was in surgery for 12 hours had whole body blood drained out n re entered new blood and everything eles into my body blood didnt reach my feet in time so thy dried out i went into a coma 15 days and thy werent sure i would make it was in icu 6 weeks n further rehab 3 months uknow life bring so much ive ended a amputee to both my feet and have lups since then all sorts other issues too health wise and im not even old was 28 at the time.
    • Jan999
      Jan999 amber_6594

      Posted

      amber I do feel for you a young mum and you were suddenly critically ill. I send you my love. It is very rare for something like this to happen but I have come across it before however I don't know if this particular lady had lupus diagnosed later. It is a lesson for all medical staff to never ignore symptoms and to always be vigilant.
    • amber_6594
      amber_6594 Jan999

      Posted

      Thanks matron its changed my life and i do hope things get better for you xx
    • pam_87693
      pam_87693 amber_6594

      Posted

      I am so, so very sorry for you darling. My problems started with the birth of my first son, post preeclampsia. I was 24 at the time. My lilltle boy was born fit and healthy, but sadly was a victim to Sudden infant death syndrome. Thankfully I have 3 more boys all grown up. My story follows yours in so many ways, we never know what life throws at us. In 68 now and like you have nearly died, bless you and I really hope that you are able to enjoy your little one one now and are getting all the help you need. 💕🍀💕
    • amber_6594
      amber_6594 pam_87693

      Posted

      Thank you pam yes i am ok that was when i had my 3rd baby i have 3 boys 1 girl thanking god that they dont have any problems . I understand how you feel i got preclampsia with my last baby its just frightening experiance but i feel all these difficulties that i have , have made me stronger person .xx lupus isnt easy to deal with because one day your ok and next your not
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