Lupus out of "remission"? Gall bladder removal

[denden]

Lupus - I hate you!!!

After few years of respite, since Sunday have been having the worse Lupus flare up imaginable accompanied with severe excruciating burning in the crown of my head, fatigue, loss of appetite, listlessness high fever at nights, nausea, Lupus cuts on my skin (those that appear to be like paper cuts), deep grooves in my nails.

Unable to tolerate sunshine or sunlight and worse of all - white skin discolouration on fingers, underside of forearm and in middle of my spine! Found myself resorting to all sorts of self-help methods but to no avail. Never had it this bad before 😖😢 Any suggestions? Anyone? Not due to see my dermy until July. Ouch!

Scared to go to the hospital because of unfortunate experiences.

Also has anyone with lupus ever had gall bladder removal before? How did you find the experience? Any tips as to be expected? Am Scared 😳

[JimCWalker]

Can help you with the Gall Bladder bit.

I had mine removed in December. There's little to worry about, honestly. This was the first op I've had and I was surprised at how comfortable I was afterwards. The operation was carried out in day surgery, in at 9 out by about 4, walking out to the car, going to the loo fine, all the good stuff.

The one bit of advice I really want to give you is try not to over do it. I got told off by my GP because I was doing the school run and other bits and pieces. The incisions are relatively small, the longest ones for me were just under my belly button and below my sternum, about a couple of cm's long, this gave me a false sense that it was a small op, it isn't! My wife bought some extra dressings from the local chemists and I changed them after every shower. The witches they used were soluble, so no need to go back to have them removed.

The worst part was the day after when the hard core pain meds from the hospital had worn off there was a dull pain from the gas they used to inflate my insides.

I believe that the op was the trigger for my symptoms to go up a gear enough for the GP to request specialist blood tests and received a positive result for Lupus, so a mixed bag there really.

Having that annoying little bit of anatomy removed was well worth the effort. It was always embarrassing going for a meal that had any fat in it because I knew I had to be within dashing distance of a loo. I'm still a little sensitive to fatty food, probably because I reduced the the amount I had prior to the op because it had given me pain for days at a time.

The only really disappointing thing for me was that they wouldn't let me take the gall stone home, infection control and all that apparently. Bum!

I hope that you manage to get some relief from this flare. Do you think the stress of the operation may be one of the triggers?

[denden in reply to JimCWalker]

Hi JimCWalker, how are you feeling today?

Thank you for the heads up. I'm very concerned because for approximately 2 months now have lost any form of feelings/sensation below my belly button. Although I Have reported this to the GP they have done nothing 😢😢

I'm scared beyond measure. Already right sided hemiparasis and wouldn't want to be totally paralysed.

It's taken me several years to get to the stage I'm at. After years of fighting, felt it best to resort to private physiotherapy. Happy to say it's very costly but it's the best decision I've ever made. Much has been accomplished and would find it quite devastating should ... (sigh) This lack of not feeling again in that area of my body is concerning. 😞 Just keep wondering if they are any good GPs left in the U.K.

As for fatty foods- there goes my love for duck and the occasional treats 😝 How long did it take you to re-take your first bite?

Although you weren't able to take the stones home, did they show them to you? Really would like to see these wretched things that has caused so much discomfort. 😖

PS. Not sure if Lupus flare caused by my concern re above

[Barbara17]

Hello Denden. Sorry you’re having such a bad time, it’s horrible in the sun when everyone else is enjoying it, I find I can go out if I cover up, werfactor 50 and where a hat. And who cares is everyone thinks you’re mad. Re the gallbladder question: yes I had mine removed eleven years ago. I had keyhole surgery, was in and out of hospital in a day and back at work in just over a week. Hope things go as well for you.

[denden in reply to Barbara17]

Hi Barbara17, how are you? Thank you for your suggestions of sunscreens. Love the ideas of doning a nice hat as well 😃 no qualms abt any of this especially as there are few fashionable ones out there. 😃

Any suggestions for skin disclouration?

Lupus cuts? Have a big nasty one right around my neck! 😖