Lupus flare

[FuzzyPuffling]

Morning all. I'm currently struggling my way through a horrible lupus flare...numbing fatigue and joint pain needing painkillers. Day 4...

I know I've just got to ride it out, but am seeking words of empathy and support.

My DH is a star but he's probably almost as fed up of it as I am.

Fellow Wolfies, hold me up!

I have absolutely no advice but you're not alone. I had my pneumonia vaccine during the week when I was already run down and I'm flaring. DH is super patient and understanding but I just want to run away and hide. It's crap isn't it?!

I don't have lupus myself but a close family member does so I understand how difficult a flare up can be. Try and go easy on yourself, lots of rest if you can, muted lighting, almost give into it and hopefully you'll feel better soon. Also get in touch with your rheumatologist when you're up to it and see if they can safely tweak your medication.

Thank you for your lovely, kind words, both of you. That's sort of all I needed - just to know I wasn't alone with this.

I flared after my first covid vaccination (but it was worth it) so I hear you justoneday.

I do think lupus needs a much sexier and dangerous-sounding name - wolves are far too cuddly for this!

I hear you and salute you for your resilience in the unrelenting shit of it!
I had a nice day on Thursday and got loads done, but have been flung horizontal since. One is ever hopeful for a fresh chink of light. Hang in there, as flares do pass.

I was reduced to watching people on the telly trying to buy small flats in Spain. Daytime TV is utter rubbish. On the good side, it sent me to sleep.

Oh, and may I recommend the delights of the heated throw? Perfect for sofa days.

Am currently hiding under my lovely heated throw, dosed up to the eyeballs. I've had 2 steroid injections since August for flares, I'm not sure my consultant will allow me another

I'm trying turmeric, ginger and black pepper supplements to see if they have any effect on inflammation or Reynauds.

Heated throws should be on prescription. I have no idea what I did before I got one.

I don't have lupus, but I do have reactive arthritis which I'm experiencing a flare up.

What I find works for me is heat (heated blanket, hot packs), gentle movement for short periods (10 minutes at once), cutting out diary and gluten and nightshades, meditation, and lots of water/rest. I also drink a lot of turmeric tea - I'll try anything as I really dislike strong painkillers (even after all these years, they really affect me).

I have kidney and heart involvement so I avoid painkillers as much as I can, although I needed paracetamol yesterday.

Hi @fuzzypuffling I just wondered how you were getting on and if you found the tumeric helpful?

Hello Neilsfavouritechilli ( fascinating name!) . I have no idea about the turmeric: I take a capsule every day and add it to my soup, but who knows. I might be dead without it, as my dad used to say!

My flare lasted about 3 weeks, which is a long one for me, but I am much improved now, thank goodness. I've managed to chase up an appointment withy rheumatologist - it's 14 months since my last one, so I am feeling rather abandoned.

Hello! Fellow Lupie here and collector of other autoimmune nasties!
I hope you feel better soon, I'm also on flare and this has been rattling on since Christmas when I had Covid. My best advice is be kind to you, rest when you can, drink lots of fluids, take pain relief, see if you can get an earlier rheumatologist appointment if you feel you need one - contact the consultants medical secretary (number or email usually on clinical letters) and sometimes this can usually get you at least a phone call consultation.

Raynauds is hard at this time of year - keep hands moisturised, wear gloves when they are cold and when getting things out of the freezer.

Blankets - the perfect companion for a lupus flare, snuggle up under one and watch a trashy box set on tv - my current choice is Ghost adventures on Discovery...bizzare choice for me, but it's amusing me!

Take care xx

Hello menobobbin. Lots of lovely good advice there for those mid-flare. I love my heated throw...it's a game changer for feeling warm and comfortable on the sofa. My non- lupie DH has one too, so they are obviously good for everyone!

Now I think about it, I think my Reynauds has been less bad this year. Maybe the weather isn't so awful ( from a cold point of view) or perhaps the turmeric and ginger ( see above) is having some effect?

We used to love Ghost Adventures!

Oh, and how did you manage with covid?
I do worry about it, as any virus knocks me for six. Hope you're ok and making a good recovery.

To be honest I was so anxious about covid. I had just had my booster vaccine and 4 days later tested positive.
I had a really bad cough, my joints ached and I was so so tired. The fatigue lasted for weeks afterwards. I also list all sense of taste and smell which was just weird. It was the case of keep on top of pain relief, rest and drink lots of fluids. Which was easier said than done with a very active 5 year old and all the preparation for Christmas to do too! But, we managed and got through it.

Yikes...All that on top of lupus. I salute you!
And hope you're feeling much better now.

Hi, newbie here, just diagnosed yesterday with lupus & Sjorgens syndrome. Problems since last October.
Severely affected my legs. Need zimmer frame indoors & leave home in a wheelchair.
Need help going from sit to stand. Unable to do it alone atm.
Have gentle exercises to do through the day. Been on steroids for 3 weeks & seeing some improvement. Will be started on other drugs in about 6 weeks.
Any advice as to what to expect would be gratefully received.

Hello coffee beans. I'm sorry to hear of your troubles...it sounds as though your mobility is very seriously affected.
I can't offer any advice on what to expect as lupus etc affects everyone differently. Mine is concentrated on fatigue, kidney and heart issues and nodules/ pain in one hand. It's all a surprise what gets affected next!
I hope you've got a good rheumatologist on the case, and they find a drug regime that suits you and helps.
I have an appointment withy rheumy next week and am wondering what to tell her this time!

Thank you @FuzzyPuffling.

I'm under neurology & rheumatology. They are keeping a close eye on me & I am actually feeling quite positive for the future. I just know it's going to be hard work building my leg muscles back up. The speed of muscle wastage was frightening.
The steroids have helped so far & they are trialling me on some other drugs next month.
I don't know much about the condition but I have realised that everyone reacts differently.

Good luck with your next appointment & thank you for your response.

You're welcome and I hope it all goes in the right direction for you. PM me if you ever want to talk specifics!

Thank you so much!

I don't know how to keep going on the way I feel all the time no doctor will listen to me about the symptoms of having it's been going on for about 10 years I don't know where to turn anymore I was reading up and it kind of sounds like this is where I need to be

There is actually a reliable solution for Lupus and other autoimmune disorders. Traditional Chinese Medicine can treat the problem by acupuncture and herbs, but it is important to see an experienced TCM doctor.