Flaring and fed up

[Apricot100]

Good morning all. I'm on my fourth day of a horrid flare and feeling massively sorry for myself so sorry for the self indulgent post.

My legs have gone - achey, fizzy and no strength; sharp one-sided head pain is back with dizziness and sick feeling; joints aching and so stiff - when I move from most positions in bed it feels like I'm cracking my back or neck in two. Sweating as well, plus the brain fog has just ramped up to max.

Thankfully hubbie is home (usually works away - leaves today) but has been undertaking a course from home so poor children have just been left to their own devices. I feel so awful lying in bed when I should be doing things with them.

I'm going to try and get up today as there are a few things that need to get done but I'm conserving those spoons - 11yr old has a medical appnt an hour away tomorrow that she can't miss and youngest has a week of sleepovers and play dates.

Flare has timed itself with my period, which seems to be getting more common with me. I actually thought I was premenopausal so might soon see the back of this!

Sorry, pointless post. Just sending love and spoons to all Xxx X

PS: along with a great many suggestions that would help me win Coco's bingo 10x over, someone suggested Aloe Vera juice / gel for lupus. Anyone tried it? Xx

[Spanielmadlady]

Oh honey I feel for you. With regards to periods ( I'm also menopause age) mine ended up every 2 weeks and I was in a mess.i was put on degestarol ( not sure on spelling) and I havent had a period since may last year.it has made a huge difference I still get the odd bit of breakthrough but it doesn't even last a day.

I'm sure your kids understand.

Never used aloe vera juice so cant help there.

Chin up my lovely sending you gentle hugs and sloppy kisses 😘😘😘

[Apricot100 in reply to Spanielmadlady]

Thank you lovely. I will have a look at that medication. Take care xxx

[Spanielmadlady in reply to Apricot100]

Desogestrel 75mcg

[Barnclown]

Feeling for you Apricot! Glad spanielmadlady has offered up something that helped her.

My days of coaxing the bod through this life transition are way behind me...but I remember cautiously trying stuff at the time...& I think you’re already onto what helped me most: resting a lot & saving spoons + trying not to be critical of myself having to ‘go easy’ on everything while my nearest & dearests took on more of my load around the house. Very basic stuff 🤷🏼‍♀️. Had we known then that part of the reason this was so tough on me was that my lupus & antibody deficiency disease were under-medicated, things might’ve been a bit less fraught generally. So, am glad you’ve posted + I hope you’ll find a way to flag up this flare to your GP/rheumy...somehow 🤞

❤️🍀❤️🍀❤️ Coco

PS I forget if chronic progressive AID/CTD-related ‘mouth to exit’ GI stuff is part of your mix, but my version of this really truly madly deeply reacted ‘negatively’ to Aloe Vera Juices & Gels...I tried several brands back in the early ‘00s’ 🤦🏼‍♀️...but maybe brands are producing better products now?

[Apricot100 in reply to Barnclown]

Thanks Barnclown, that is a good flag up... maybe I'll give the aloe vera a pass then (No pun intended!) X

[svfarmer]

I’m so sorry your feeling so unwell at the moment- don’t beat yourself up - your kids love you and I’m sure will understand . Just rest as much as you can do and I can recommend Bone Broth - it has really helped my symptoms- sending hugs 🤗 xx

[Apricot100 in reply to svfarmer]

Thank you svfarmer. Sadly eldest isn't too understanding... bordering on the teenage years and prefers slamming doors, flouncing around, bursting into tears and yelling "leave me alone" at the moment. Fortunately it's not all the time but could do without it today 🙄

[svfarmer in reply to Apricot100]

Oh I do sympathise with you - I’ve had 3 teenagers so can understand - fortunately my sons had all left home when I was diagnosed with Lupus I - do feel for parents who have Lupus or any other disorder as must be so so hard - 1 of my sons was a particularly stroppy teenager but he has turned into the most incredible loving and caring son - so there is hope- also hope your flaire dosnt last long xx

[Apricot100 in reply to svfarmer]

😘😘 As my mum keeps saying "It's just a phase..." xxx

[svfarmer in reply to Apricot100]

Mums are very wise women 🥰

[Spanielmadlady in reply to Apricot100]

Yes ive been there too..my daughter is now 27 and a mum of 2. If you can try to let as much as you can go over your head and not let it get to you.they do improve and believe it or not we were there once too ....although I dont remember being that bad but my mum may well argue otherwise 🤭 x

[Apricot100 in reply to Spanielmadlady]

Snap! Xx

[Kelda74 in reply to Apricot100]

My youngest suffers from teenageitis too but it does calm down

[CecilyParsley]

No advice other than to say I am so sorry that you feel so ill. Sending you huge Cwtches and please be kind to yourself, you are worth it xx

[Nurse22]

So sorry to hear of the "flare-ups", I have them all the time. Most times they are due to me going off my very strict, gluten free, dairy,sugar,acid free,processed foods, grain free chocolate free and so on Diet. I usually have to start taking my prednisone for 5-6 days to cool the flare-up. Try to clean up your diet, drink lots of filtered water and maybe ask your doctor about the prednisone. Feel better.

[Apricot100 in reply to Nurse22]

You are so right about the diet. I am dairy free and stay away from bread, cakes etc but had a beer for the first time in about 15 years this week. No idea why. I think I've tried pred but it was a while ago. Keep noticing how many people on here speak highly of it. Might try again. Thank you for your help and reply xx