{"id":1535,"date":"2025-07-08T01:36:11","date_gmt":"2025-07-07T22:06:11","guid":{"rendered":"https:\/\/thefibro-lupusbutterfly.com\/?p=1535"},"modified":"2025-07-08T01:36:15","modified_gmt":"2025-07-07T22:06:15","slug":"when-lupus-hits-hard","status":"publish","type":"post","link":"https:\/\/thefibro-lupusbutterfly.com\/?p=1535","title":{"rendered":"When Lupus Hits Hard"},"content":{"rendered":"\n

Back in 2015, I was diagnosed with Fibromyalgia and then in 2016, I had a Lupus diagnosis with positive ANA and Anti-dsDNA testing, along with the classic Lupus symptoms, but I honestly decided that was more than I needed to deal with because, at that time, my husband had blood cancer and I was already in over-my-head with all that, so I denied treatment with Lupus medications, thinking… “They cannot be serious!”<\/p>\n

The Fibromyalgia was enough to mentally process and handle on top of my current life at that time. The pain was bad, and I was learning to cope, building up my pain tolerance along the way. Testing continued through 2020 to show my ANA and Anti-dsDNA as positive, but again, I chose to ignore… In 2021, these same tests came back negative, so I wrote it off as a Lupus misdiagnosis and moved forward in Fibromyalgia pain.\u00a0<\/p>\n

Also, in 2021 my hubby went through the harrowing journey of a bone marrow transplant. I am proud to say, that after 4.5 years of ups and downs, GvHD of the liver, drug induced diabetes and several other hurdles, he is now survivor of a Bone Marrow Transplant with the cancer in remission!! Yeah! Praise the Lord!<\/p>\n

Enter 2025 and my health…<\/h3>\n

I was slammed in early January with other family-type stresses and illnesses, causing me more heart palpitations with me learning (the hard way) how NOT to respond to stress. Then I had a bout of pneumonia in March that came out of nowhere and took weeks and weeks to get rid of. That lead to a stress test that made my body churn in pain for weeks from the Fibro, and, in late May, after more weeks of feeling worse and worse from that stress test, I called my PCP because the pain just felt worse<\/em> than Fibro.\u00a0<\/p>\n

More bloodwork was done including another ANA and all those wonderful “anti-this and anti-that” tests.<\/h2>\n

In the meantime, I had excruciating hip and lower back pain that kept rocking my pain tolerance levels and brought them to heights I could not handle anymore. I walked and moved very slow but had to keep moving so I didn’t lock up. I forced myself to do my daily stretches and stationary bike ride to keep my heart healthy. Every day was a challenge.\u00a0<\/p>\n

Finally, in June, the blood test results trickled in and came back saying my ANA and Anti-dsDNA was positive again, like in 2016-2020, only with higher levels and all my symptoms seemed to scream a Lupus flare. What? I had written off Lupus!<\/p>\n

Apparently, Lupus did not write off me.\u00a0<\/em><\/h2>\n

It appears that the original diagnosis was real, and I have learned that Lupus has periods of remissions and flares. I am apparently in a doozy of a flare with the attack hitting my joints, capitalizing on my hips, lower back, and knees.\u00a0 The classic malar rash seems to come on with stress, heat and being outside. Add 3 UTi’s in the midst of all this and, well, you get the picture! (Yes, apparently UTi’s and Lupus go hand-in-hand<\/a>. My doctor has strongly advised me to accept that I have Lupus and take it seriously. That’s going to be hard to process… however, my body will remind me every minute of the day).<\/p>\n

Life doesn’t stop for Lupus.\u00a0<\/h2>\n

Because of my over-the-top pain levels and inability to walk comfortably without pain, my doctor asked me to try a nine-day course of steroids right away as a way to calm the flare and really see how the Lupus responds to the meds.<\/p>\n

Well, the first day I did not feel any changes. The pain was still agonizing in my hips, and I felt like maybe I had set myself up with too much hope. However, I awoke the second day and felt like a whole new person!! It was so incredible to feel like I did over a decade ago!\u00a0 I could walk without pain!! I went outside and pruned shrubs and just had the best hour I’d had in years! This wonderful, elated feeling also confirmed that I was indeed in a Lupus flare which had seemingly attacked my hips and lower back, as the pain in that area had calmed down. The third day I felt Fibromyalgia-y… which I knew was from the lovely hour I had spent outside the day before!!<\/p>\n

And then… just like that… the days went by, and the steroid dose began to taper off, and the pain began to drip back in.<\/h2>\n

Each day of the dose-down, the pain has slowly spread and deepened, and I can feel it rearing its ugly head with a calm vengeance. I have 2 days left of steroids… at this rate, I know the pain will become my constant companion once more. The relief for a few days was great, though!<\/p>\n

I must admit, the current view from where I sit is rather bleak. My Lupus symptoms seem to be returning even as I type… the pain, the malar rash, the pustule bumps on my scalp, which my doctor called folliculitis, which I have learned can be common with Lupus. The cause of mine, so I was told, “Could be from Lupus, could be from the steroids…”\u00a0 leading me to believe he has no idea. Anyway, I used to get folliculitis periodically before, only this time it is all over my head. UGH! Fibromyalgia is bad enough; this is so much worse.<\/p>\n

Again, life doesn’t stop for Lupus.<\/h2>\n

Life doesn’t stop for anything.\u00a0<\/h2>\n

The hope is that the steroids have halted this horrible Lupus flare and if it comes back, it will be more tolerable.\u00a0<\/p>\n

Time will tell.\u00a0<\/p>\n

My PCP is making me an appointment with a Rheumatologist at the end of the summer to discuss Lupus medication treatment options.\u00a0 When I think back over the past decade, I can see when, what I thought was a bad Fibromyalgia flare, was actually a Lupus flare that I didn’t recognize as Lupus, because I was in denial.\u00a0 I think today I believe in this diagnosis… tomorrow I may not… again… and then the next day I will have to come to terms with it… It is definitely a mind accepting thing; Too much to wrap one’s mind around… at least for now.<\/p>\n

No wonder the motto is “Lupus Sucks.”\u00a0<\/h2>\n

So, from my “quite-possibly-still-in-denial” Lupus home to yours, STAY STRONG!!!!<\/p>\n

WE CAN GET THROUGH THESE FLARES!! Kudos to all of you Lupus Warriors!<\/p>\n

God Bless-<\/p>\n

~The Fibro & Lupus Momma of Ten<\/p>\n

\"\"<\/p>\n

\u00a0<\/p>\n ","protected":false},"excerpt":{"rendered":"

Back in 2015, I was diagnosed with Fibromyalgia and then in 2016, I had a Lupus diagnosis with positive ANA and Anti-dsDNA testing, along with the classic Lupus symptoms, but I honestly decided that was more than I needed to deal with because, at that time, my husband had blood cancer and I was already… Continue reading When Lupus Hits Hard<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"ngg_post_thumbnail":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[1],"tags":[],"class_list":["post-1535","post","type-post","status-publish","format-standard","hentry","category-uncategorized","without-featured-image"],"aioseo_notices":[],"aioseo_head":"\n\t\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t