When Lupus Hits Hard

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!”

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.

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!

Enter 2025 and my health…

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 than Fibro.

More bloodwork was done including another ANA and all those wonderful “anti-this and anti-that” tests.

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.

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!

Apparently, Lupus did not write off me.

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. 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. 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).

Life doesn’t stop for Lupus.

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.

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! 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!!

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.

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!

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…” 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.

Again, life doesn’t stop for Lupus.

Life doesn’t stop for anything.

The hope is that the steroids have halted this horrible Lupus flare and if it comes back, it will be more tolerable.

Time will tell.

My PCP is making me an appointment with a Rheumatologist at the end of the summer to discuss Lupus medication treatment options. 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. 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.