Feeling a bit lost...

[Wanheda242]

Hello Everyone, I hope you’re all as well as you can be.

I have been very ill since December 2017 (I’ve never been quite ‘right’ ever since I was around 11 but December 2017 is when things really started to go downhill) and other than a constant misdiagnosis of IBS, bad periods, and even a psychological issue, I was finally getting somewhere.

I had a laparoscopy in April for my Endometriosis, and when I woke up and my surgeon came to see me she ran to my bed side in a panic because I had a VERY severe malar rash that was also all down my neck and all the way to my naval. She thought I had perhaps taken a severe allergic reaction to the anaesthesia until I explained to her I get rashes all the time. This was the first time someone mentioned Lupus to me.

Nothing happened from there, but my symptoms worsened considerably, I didn’t go back to a Doctor because I’ve developed a bit of a fear as I was forced into psychological treatment in 2018 for ‘making my symptoms up in my head.’

On September 3rd I went in to have my gallbladder removed -an operation I fought a year for as they were adamant a thin, 19 year old woman, who also has never been pregnant or even kissed for that matter could possibly have a bad gallbladder.- However, when they did remove it they found my organs were very very hard instead of the normal soft stretchy organs they’re used to. I also ended up needing a liver repair done which they can’t explain at all (I don’t drink alcohol ever anymore, haven’t done since December 2017)

This prompted my new Surgeon to ask questions, and again when she came to talk to me in the ward I had a horrible rash. This time however, I woke up with some of the other symptoms I’ve been getting. I couldn’t move my left hand because my fingers were so unbelievably painful, my right hand was a little sore but not as serious. I could barely breathe because my lungs literally felt like they were on fire and being squeezed, so unbelievably painful. My new Surgeon made sure I was given a blood test for Lupus before going home.

It’s been 2 months and I haven’t heard a single thing, and my symptoms are just worsening. Does this mean my blood test was clear and I don’t have Lupus? And if so... what are these symptoms? These are all of the symptoms I experience when it gets really really bad:-

-Malar rash but also patches of red rash over the rest of my body.

-Very VERY intense fatigue.

-The lung/rib pain I mentioned earlier, that’s the worst of it it’s so unbelievably painful.

-Awful awful joint pain, specifically in both my knees, shoulders, and hands. I’ll include a picture of how weird my left hand gets when these intense periods come up.

-My feet often look genuinely dead, they go so blue and pale that I can’t feel them even though they’re cold to the touch.

-Constant unexplainable stomach pains, that range from annoying to curled up screaming pain levels.

-Constant night sweats that just won’t pass even if I have a fan directly on me.

-Serious clumsiness, I’ve almost accidentally smashed all the glasses in my Mum’s cupboards because sometimes I feel like I lose control of my hands and arms.

-And worse of all, the only symptom I haven’t spoken to Doctors about, is my mental health. I’ve been having very very intense mood swings that leave me feeling all over the place and exhausted. I often forget what I’m doing, where I’m going, and briefly how to do simple tasks.

I’m just feeling so unbelievably lost, I was supposed to see a Rheumatologist if any markers were in my blood but surely even if my blood came back clear they can’t just leave my with all these symptoms? They are genuinely getting worse as time goes on, I’m so exhausted 😓

Any and all advice and thoughts Welcome, I appreciate you all so very much. Thank you, have a wonderful day.

(Here is the picture of my left hand in my last flare(?) of symptoms. It feels like someone is bending my fingers and just waiting to snap them. It’s also swollen)

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OMGoodness, you poor thing! You’ve been through a lot.

As far as the blood work you had done, it should have been ready about a week afterwards, and I think someone dropped the ball in not getting back to you. You need to call ASAP and ask for the results.

Every time I go for labs, I make sure they know to send me a copy and I have a (thick) folder they all go in. Start keeping a picture record of your rashes on your phone too, since things change so often, and you may not have rashes, etc., at your doctor appts for them to have a clear enough picture of what’s going on. If they keep telling you it’s ‘in your head’, maybe you need to switch doctors? I mean, it seems like they‘ve seen enough evidence to know you aren’t making anything up.

There’s a Lupus/AI joke ‘I don’t look sick? Well you don’t look stupid! Looks are deceiving.’ Don’t let anyone convince you differently from what you know to be true.

As far as a diagnosis as to what you have, unfortunately, we can’t give that to you. You definitely sound very ill. It could be lupus, but it could be something else. They call lupus the great imitator because it’s so similar to many other things. But your symptoms sound plausible. In any case, you need a doctor who can discover what’s going on.

[Loopyloo43]

Hi I feel your frustration and it’s amine field of symptoms and the feeling drs once again not addressing these issues when spoken about I do feel there in experience leads them to making wrong decisions which in turn does not help the patient sadly.are you keeping a diary as over time you tend to forget ! Also give the hospital a ring the results should be well back by now. The secretary will pass on the message to the dr who should then get back to you either by letter or phone! At least this may help! It’s very scary having these symptoms and you do worry when they become severe and no one seems able to help because they don’t know! Maybe the the rheumatologist is the next step one that may or have touched on the lupus? I do feel for you and hope that some one that you see can help and go that extra step to help you figure this out ❤️ X