Diary Day 1 - I can’t ever change the past ?
Reddit » Lupus
by /u/Warm_Supermarket_765
39m ago
When we are no longer able to change a situation . . . we are challenged to change ourselves. Viktor Frankl I decided to write this text for myself, for you and for us as a community: I am unsure about the frequency I’ll be writing this type of text, but I hope this can impact at least some of you. This community helped me a lot, by sharing opinions, words of kindness and advices. Knowing other people are going through the same process and thriving, is inspiring for me. However, we know some days it is hard to thrive. Some days, doing the “minimum” is thriving. The most important thing for ..read more
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Ulcers in mouth and bad flare
Reddit » Lupus
by /u/Polar_torpidity
39m ago
Recently have been super stressed. My mental and physical health were in a decent place last year, but then life stuff happened and my health plummeted. Most recently I re-did an AVISE panel and it was horrible. My ANA is 1:640. Rheumatoid factor IGM and IGA pos. Anti thyroglobulin IGG was over 100. AntiDSDNA was in the 50s. C3 complement low. I also had a spinal tap at the end of last summer that showed high protein. The rheumatologist said this was related to the progression of lupus. I’m very distraught. By not managing my stress; my health has tanked severely. Now i’m losing chunks of hai ..read more
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Just curious
Reddit » Lupus
by /u/Any-Worth-2577
6h ago
Just got the official diagnosis today. Waiting to start treatment until after I have a pleural effusion drained so the rheumatologist can see the pathology of it. I am glad to finally have an answer to the craziness that has been happening but now also feel the heaviness of the diagnosis. I am curious if anyone feels mostly normal once they start treatment? Just hoping to hear some positive stories after lurking for a while and reading the range of symptoms and life altering effects this disease can have. Thanks for taking time to read! submitted by /u/Any-Worth-2577 [visit reddit] [comments ..read more
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ANA 1:2560 and ds-DNA 1:160
Reddit » Lupus
by /u/Warm_Supermarket_765
6h ago
My rheuma told me that I have high titer results. I already was diagnosed with RA 4 years ago. Does my ds-DNA result, might indicate a more severe lupus? submitted by /u/Warm_Supermarket_765 [visit reddit] [comments ..read more
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Advice for dr conversation
Reddit » Lupus
by /u/shimmer32
6h ago
My rheumatologist has tested me with repeat labs 3x in 12 months. I am expecting a call soon to discuss the recent labs. dSDNA positive of 11-12 each time and elevated ESR of 25 two of the times. Some are still pending. I’ve had a low IGG1 and a high IGG2 previously. Together with my symptoms, he’s said before he can’t rule out lupus and has it currently recorded it as a “borderline SLE or unspecified connective tissue disorder with Raynaud’s and arthralgia” bc the numbers aren’t significantly high. Any direction in next steps, questions to ask him or additional testing I should ask for? sub ..read more
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[Research] Help test an online self-help program for individuals with chronic health conditions and earn up to $50!
Reddit » Lupus
by /u/USUACTresearchgrp
6h ago
Researchers at Utah State University’s Acceptance and Commitment Therapy Research Group are recruiting for a study evaluating an online, self-guided mental health program for individuals with chronic health conditions (UtahACT.com/CHC). Participating in this study would involve the following: Completing online surveys at three time points baseline, 30-45 minutes 6-week post-test, 30-45 minutes 10-week follow-up, 30-45 minutes Being randomly assigned after completing the baseline survey to either... The treatment condition in which you will work on the online mental health program over th ..read more
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Where did the idea that lupus patients are more susceptible to things like colds and the flu come from?
Reddit » Lupus
by /u/bobtheorangecat
11h ago
I see this in this sub a lot. Immunosuppressants can make us more susceptible, I understand that, but why do people think SLE=always sick? submitted by /u/bobtheorangecat [visit reddit] [comments ..read more
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Absolutely debilitating exhaustion
Reddit » Lupus
by /u/lluvia-storm
11h ago
I am at a loss for what to do. I’m 22 I’m in college and the past week and a half I’ve been struggling with debilitating exhaustion. I have hardly any other symptoms. My joint pain isn’t flaring my lymph node is only on and off and definitely not excruciating. I don’t know what to do I’ve had to miss class since last Thursday. I can hardly get out of bed. Does anyone have any tips at all? When will this end? Is this still a flare? submitted by /u/lluvia-storm [visit reddit] [comments ..read more
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Burning eyes in short bursts?
Reddit » Lupus
by /u/lauren1198
16h ago
Anyone else experience this in one eye for a few seconds? It’s intense enough to be noticeable and then will subside. No tears coming out. I’m using Systane preservative free drops a few times a day but will still experience this symptom. Anyone else? ? submitted by /u/lauren1198 [visit reddit] [comments ..read more
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Cause for alarm?
Reddit » Lupus
by /u/mop420
16h ago
I'm 41 male. Diagnosed with UCTD in December, also referred to the diagnosis as "pre-lupus" Recently I've been having pretty severe muscle pain and stiffness in my neck and shoulders. My urine has been foamy, which is alarming to me because my mom is stage 3 kidney disease. I've woken up the last 2 days extremely fatigued and with a feeling of general malaise. Would I be waisting my time with an ER visit? I don't see my rheumatologist again until Early june. submitted by /u/mop420 [visit reddit] [comments ..read more
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