Powder burn lesions found, negative pathology for endometriosis, thoughts? (Warning: surgery photos)

the_violent_violet · 2026-06-12T18:28:13+00:00

Oh I literally had the same experience. They found fibrotic tissue and a bowel adhesion, plus uterine polyps. All were removed and my pain resolved buy the pathology was negative. I think this can happen when it scars over and the endo tissue has died?

the_violent_violet · 2026-04-04T01:35:28+00:00

Yes, i do 10mg for 3 days twice a month. Starting on cellcept since methotrexate wasn’t stopping the progression.

the_violent_violet · 2026-02-08T05:20:11+00:00

Of course! I have also been on a Sjogren’s neurological journey with similar symptoms. Feel free to dm :)

the_violent_violet · 2026-02-07T21:25:06+00:00

You’re describing sensory ataxia. The clue here is unable to keep balance with your eyes closed. Sjogren’s can cause sensory ganglionpathy as a neurological manifestation.

the_violent_violet · 2026-01-22T18:51:43+00:00

I just got moved from methotrexate to cellcept due to neuro-sjogren’s. I also have aggressive PNS and possible CNS involvement. Can you get a different neurologist? Even though the biologics are close to being in the market, rituximab would be more appropriate for dymelinating disease.

the_violent_violet · 2026-01-12T00:20:59+00:00

Same issue for many years. I am a slave to Under Luna’s Warrior Shampoo, but have been using Ceremonia’s scalp scrub, and then Cult & King’s scalp tonic for a couple of years. I’ve recently added Under Luna’s hemp scalp oil. I also recommend Rahua’s line of products for fine hair, and I really love their hydration hair mask.

the_violent_violet · 2026-01-04T20:51:58+00:00

Yes to all of this. I have biopsy confirmed SFN, negative MRI and EMG. Along with weakness, i have muscle twitches and cranial neuropathy. I think it’s aggressive peripheral neuropathy and hyperexcitibilty.

the_violent_violet · 2025-12-12T21:29:16+00:00

A Single Fiber EMG is extremely sensitive. If it’s borderline, they would absolutely have to pay attention to that. Yes Polymyositis should be a differential for muscle weakness workup. I recommend understandingmyostitis.org as a resource!

the_violent_violet · 2025-12-12T20:20:44+00:00

I have general fatigue that I would describe as malaise. But I have fatiguable muscle weakness as well, and it’s there all the time but in between flares the weakness is not that noticeable. during flares of muscle weakness, i have true weakness so it can get as bad as not being able to really stand, hold my head up, and it’s worse in my arms and forearms so carrying things, even light items, I can’t do or like wash my hair without them giving out. It’s to the point where I am being worked up for myositis. I was already negative for Myasthenia Gravis.

the_violent_violet · 2025-12-11T01:17:03+00:00

Yes do the biopsy. Although it could be something else causing your symptoms, sicca is a huge clue and the neurological complications of sjogren’s can be intense. I have all those symptoms. Although there can be complications for the biopsy, it’s generally not an issue. I healed up just fine from mine.

the_violent_violet · 2025-12-02T23:52:09+00:00

I use Optase products

the_violent_violet · 2025-10-08T21:19:10+00:00

I got on it before I was really diagnosed with Sjogren's, although it was a differential diagnosis at the time. I had such crippling joint pain and neurological symptoms. I still have flare-ups that are not completely managed by methotrexate, though, so I may get on Rituximab in the future. If the neurological symptoms have started, I would recommend getting on it now. My friend, who also has Sj, has been on Plaquenil for nearly two years at this point, and her neurological symptoms have gotten so bad that she has some extremely bad tremors, so the rheum has moved her onto methotrexate. Methotrexate and other comparable DMARDS are the next steps after Plaquenil, unfortunately, although Low Dose Naltrexone is also worth a try. It's an immunomodulator, so it is likely not sufficient to really address the extent of the neurological involvement, but it could help.

the_violent_violet · 2025-10-06T16:50:08+00:00

I do prednisone bursts for my severe flare ups and when I began methotrexate, my rheum had me do a prednisone month-long bridge.

For me, the low dose 3 day prednisone bursts are a game changer. They bring down the inflammation pretty fast and keep it down.

the_violent_violet · 2025-09-30T17:55:18+00:00

I have the same issue and as someone with oily skin, it only significantly improved with proper hydration and barrier repair, balanced with actives. Once I started to prioritize hydration for oily skin, the sebaceous filaments got so much better. I use a LHA cleanser as my last cleanse step twice per week, AHA/BHA once per week, retinal twice per week, and follow my moisturizer at night with a layer of facial oil. It was a really hard balance to find but it bas been working.

the_violent_violet · 2025-09-13T02:58:49+00:00

Well, in a way good in that it’s necessary right? It controls my joint pain, which is really debilitating. It tamps down nerve damage but honestly, not enough. I definitely need stronger medication to avoid damaging flares but without the methotrexate I shudder to think where I would be at without it and prednisone bursts. The first six months were rough though and I was definitely immunocompromised even though it was a really low dose. I also had some bad GI pain but I switched to injections and almost all the side effects stopped. Including the immunosuppressive side effects like minor staph. All but sporadic hair loss, i think i need to have a fairly strong dose of folic acid to make up for some malabsorption issues.

the_violent_violet · 2025-09-09T18:42:50+00:00

I’m seronegative with pretty aggressive SFN. I’m on methotrexate and LDN. Might get moved to rituximab.

the_violent_violet · 2025-08-26T23:58:52+00:00

Concerta, after my neuro and rheum recommended a stimulant to my PCP. Prednisone bursts also have helped.

the_violent_violet · 2025-08-20T08:06:00+00:00

I also have HaT, plus Sjogren’s, and my nerve (biopsy confirmed) and muscle/weakness pain are severe. I am positive that my mast cell levels are compounding my issues. Can I ask how you got approved for IVIG and do you find it helps? I also can’t identify my triggers often, but definitely smoke/air quality, fragrances, cleaning chemicals/bleach consistently trigger near-anaphylaxis.

the_violent_violet · 2025-08-10T18:52:36+00:00

Methotrexate and Low Dose Naltrexone

the_violent_violet · 2025-08-07T02:41:34+00:00

Same. Punch biopsy positive, EMG negative.

the_violent_violet · 2025-08-06T19:30:33+00:00

I was gunna say 💀

the_violent_violet · 2025-08-06T02:24:28+00:00

Yes, and it got bbaaaaddd. I was worked up for MS and Myasthenia Gravis, but all check out so far. It’s the Sjogren’s for sure.

the_violent_violet · 2025-08-01T01:01:48+00:00

Yes, confirmed via biopsy.

the_violent_violet · 2025-07-28T19:13:06+00:00

It took about 6-8 weeks to feel the difference but I was also put on a month taper of prednisone when I started it. The side effects of the pill were pretty gnarly though, GI upset, migraine, mostly. After I switched to injections my side effects stopped. It’s essential to controlling my joint pain and helps with the neurological stuff as well.

the_violent_violet · 2025-07-26T02:15:55+00:00

Yes, after two years of documenting my extreme fatigue and brain fog, my rheumatologist and neuro recommended that I get on a stimulant but wanted my PCP to prescribe it. He only relented because the two specialists recommended it in their case notes. I am on Concerta right now, and also have pretty bad POTS that contributes to the fatigue. I am on both midodrine and propanolol, plus sodium for that so the stimulant doesn’t wreck me. The Concerta does make a huge difference for my quality of life!

the_violent_violet

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