1. Community
  2. Bones, joints and muscles
  3. Lupus

Lupus...?! I need help!

Posted , 4 users are following.

Rhi1212
Rhi1212

Hello everyone! 

Last October I noticed excruciating pain in the top of my right foot. It hurt so bad I was limping. Then I noticed my foot was very swollen a couple days later. So I decided to go to my PCP and she had no clue what was going but told me if I was still experiencing the pain and swelling to come back. Well I did. This time she did tests for autoimmune diseases. Long story short they called back and told me that I tested postive for SLE and referred me to a Rheumatologist. After that diagnosis I felt a sigh of relief because I could finally put a name to the way I was feeling. Everything made sense. I went to a different Rheumatologist on my own and he said I don't have SLE or maybe it's just the beginning stages so it's not showing up. This dr's office was a little sketchy though. Needless to say, my foot is still swollen (6months), brain fog is so intense it's hard to remember things, I am still so lethargic, I have rashes as we speak and just feel like crap daily. I guess I don't know what to do - I have all the symptoms but the last test that came back didn't show anything? I joined here to see how you guys are feeling, what are your days like, what are your symptoms? I know each case is different... 

1 like, 4 replies

4 Replies

  • Dotty_Lotty
    Dotty_Lotty Rhi1212

    Posted

    I know just how you feel as I have been in the exact same position in reverse.Had all the same symptoms you are experiencing but my bloods were clear,(this is a year ago) I was discharged.Last month I saw my Gp with a sudden severe flare up of my Raynauds, bloods were repeated and relief I have ANA  positives and dsDNA etc but untill I get to see a consultant no diagnosis or treatment !.I It is just so frustrating.I really feel for you, I guess all we can do is have a little moan and wait to be seen.Its ok saying try not to worry but of course we do.Take care and I hope you get the treatment you need.
  • 1_hand_works
    1_hand_works Rhi1212

    Posted

    Hi. You're right, everyone is different but I am pretty sure that when we all start with this, we are all equally as frustrated as you are right now. I am now 4 years down the line since my SLE  diagnosis and probably 6 years since it all started after my mass got removed. No one will actually say whether my SLE got triggered due to my mass and the treatment / surgery etc before and afterwards, but I have given up asking the question anyway.

    I have joint problems in my hands primarily and then neck, back, hips and feet. I also have Raynauds which makes my mobility worse as sometimes the swelling makes everything numb so my balance is worse, and if I trip up my hands are poor at saving me! The Raynauds also means that if I accidentally cut my finger ( or burn it whilst getting something out of the oven) or stub my toes if I bump into something, it takes alot longer to heal. So I have to be very careful and basically I don't use my oven very much at all now, and don't pick at your scabs! The lethargy is worse when I get fed up that I can't do the things I used to do, and fatigue hits me like a train sometimes. I have mouth ulcers which mean I can't enjoy my food like I used to and my hair is falling out. I got a few bad infections in the early stages of this and some bad reactions to medication they gave me to "treat" my symptoms. My memory isn't what it used to be and I lost my job due to all of this.

    It is pretty hard to stay up beat about how I am most days, but as much as this sounds very depressing, I can and am dealing with this. I self referred for some CBT, which made a difference not straight away but I use it every day and it does work.

    Like I have said to other people on these threads, you need to go through all of the searching, researching, re-researching and then all the tests, consultant appointments, more blood tests, biopsies, discussions etc. getting to know the way round the hospital so you know the quickest way to the toilet and the exits, in the time it takes you, not anyone else. It is all hard work and I wish you the best and I hope that your doctors can get you on the right medication quickly and more efficiently than mine are doing right now. Some SLE patients get sorted really quickly and the impact on their lives is minimal, so I hope you are one of these as you look alot younger than me in your profile picture. SLE is very complex and some patients are skin and joint, others, major organ involvement. My advice is do everything you can to keep it to just the symptoms you have right now. Try to eat healthy so your kidneys and liver aren't put at risk, try to do a little exercise ( I try a 20 min walk a day) so your heart stays in good shape and talk to as many people who can support you, when you get really annoyed with it all. You will find out who your friends are soon enough. This forum is very helpful as it makes you realise you are not alone, and there are some useful tips around. Sorry this is such a long post by the way - have been unwell, so not been on here for a while. Anyways, message is, you are not alone, just take it at your own pace, look after yourself, put yourself first - you are number 1, if you don't help yourself, how can you expect anyone else to. Good luck

  • beaface89
    beaface89 Rhi1212

    Posted

    I have had several symptoms and bloods always show infection or something not right yet still no diagnosis - I've gone private with a rheumatologist because I'm sick of my GP googling my symptoms and saying I have ANOTHER. "Viral infection" and being made to feel like the biggest hypochondriac ever - good luck
    • Rhi1212
      Rhi1212 beaface89

      Posted

      I feel you! I just had an appointment on Monday with a Rheumatologist and he made me feel that way. He kept eluding that my symptoms weren't what I was saying. Very annoying! I hope you get the help you need love! 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.