Sometimes it doesn't show up in the blood but could still be a lupus flare
20
u/asiaticoside
My gosh. Mouth and scalp sores and they don't think you're in a flare and don't understand why you'd be in pain??? That seems so odd to me, although I admit I don't know nearly enough about lupus yet. Would love to hear other people's opinion/education because I am in shock.
17
u/emptyjade
I'm sorry you're going through this. I've recently realized how important an antiinflammatory diet is. I don't know what you're eating, but I'm currently eating my way out of a flare.
Be sure you're getting sleep and staying hydrated. Get your electrolytes, it helps with my pain.
Hope things start getting better soon.
16
u/MiserableSun9142
I’m sorry you’re feeling this way. I totally understand. Sometimes I feel like the treatment is just as bad as the flair up! It’s really not fair we have to deal with this I feel like there is no good option 🙁
5
u/redhood279
Blood work isn't the be all end all! (((Hugs))) Skip pain management, unless you want to go, and find a new doctor! Your current treatment is obviously not working well enough.
3
u/Dream117
I'm sorry you're going through it rn, I'm in the same boat and I have to wait until April to see my rheumatologist again. They also couldn't find anything so it's time to play Russian roulette with meds now
3
u/Pale_Slide_3463
Before my worst flare I was in pain with my joints, was so sore and stiff, I started getting my hive rash lupus skin flare along side it. Went to my rheumatologist said something isn’t right, so she did blood tests and my ESR was 40 and my CRP slightly raised but everything else seemed “normal” I kept telling her my ESR when I’m stable isn’t elevated, but “your bloods are fine”
2 months later my antibody’s went from 28 - 395, ESR was 100 and CRP was 60. Ended up with hair loss, joint swelling, my vitamins started crashing, chilblains, ulcers, rashes, just some of it and then I started leaking protein,
Don’t give up with them, I was annoying my doctors so much. I was right in the end but it was horrible, just look after yourself and don’t give up the fight. I flared on MXT, steroids and ended up in hospital for 3 weeks staying a biological, they wouldn’t let me go home till I was 100% stable.
3
u/chefebony2021
🫂
2
u/Outrageous-Fruit3433
Ugh so so sorry to hear you’re going through this 🫂 not nonsensical at all and I’m happy we’re a community everyone can vent to. Sending lots of love and understanding doctors your way. A rheumatologist I was seeing for a while said sometimes lupus “hides” during a flare, so bloodwork will frustratingly be normal. Bleh.
2
u/Substantial_Escape92
Mine will never say it’s from lupus. But I bet money, it’s the lupus!
1
u/Brilliant-Lime-6383
Im suprised he isnt offering you prednisone, even for a couple weeks. I know it sucks being on but its important to still keep inflammation down and that will help with some of your pain. I know something that I like to use is called sulferzyme. Its from young living and it actually helps me when my joints hurt. Its a natural product.
Im sorry your suffering friend. 😔
1
u/Leelulu905
I have heard that cutting dairy can help with the mouth sores. I know that your diet is so limited that might not be possible. Using a topical antibiotic on my nose sores has decreased pain for me because they would get infected. I know that rheumatologists hate to change your biologic when your labs are good but I agree you need something. The pain management clinic I went to offered a variety of approaches to pain and I did find it helpful. They offered nerve blocks, nerve ablasions, Botox but also classes on diet, sleep, meditation. I hope that you can find relief.
1
u/m0ther_0F_myriads
Not nonsensical at all. I think you will find many here have a had similar experiences. I was just punted to the Mayo clinic by my rheum because my inflammation markers are fine, when I am quite obviously not fine. All of my support to you. I know this is one of the hardest parts of lupus...waiting to get better and not knowing what to do to get there.
1
u/Lymnica
I was just moved up a step in therapy without abnormal bloodwork. I have had easy bruising (hematology workup normal, suggested systemic process), joint pain, mouth and nose sores, worsening autonomic nervous system symptoms and lung inflammation that wound up being asthma.
My doctor listened to me when I said I have felt terrible and the specialists ruled out other options. She never hesitated to believe me and I think it's important to find a rheumatologist that treats the patient, not just the bloodwork.
1
u/Horror_Struggle226
Have them check you for other autoimmune disorders. I have multiple and my rheumatoid arthritis and psoriatic arthritis pain is different but similar to my lupus issues.
1
u/ATXto
I think you need to find a new doctor
1
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u/macadamianutt
The constant pain and discomfort is soooo draining. It sucks. Bloodwork doesn’t tell the full story!
Have you ever tried low dose naltrexone? It takes the edge off the joint pain for me.