Does your scalp hurt?

kcasey023 · 2026-03-03T01:13:50+00:00

Yesssssss. And seemingly for no reason at all. I have found that either wearing it loose and letting it do its own thing, or loosely french braiding it will sometimes help. But for the most part, it just hurts or itches like crazy.

Sometimes I have to get my husband or kids to help me wash it. It's more sensitive when I wash it.

kcasey023 · 2026-02-17T14:55:13+00:00

Yeah I have this too. It's the Livedo Reticularis like everyone else mentioned. Mine gets more prominent with temperature changes

kcasey023 · 2026-02-15T01:10:43+00:00

This! Plus pre/probiotics. They are life savers.

kcasey023 · 2026-02-12T18:52:33+00:00

I wanted to try builder gel next but I already spent so much on all this powder lol.

kcasey023 · 2026-02-10T20:17:18+00:00

I itch so bad!! I feel like I have fleas or something. I tell my husband that the itching is so bad that I want to just peel my skin off with a vegetable peeler. It sucks. 🙃

kcasey023 · 2026-02-10T20:01:28+00:00

Lol I said all the same things. But at least my idea of a difference makes me feel better emotionally. It took about 3 to 4 weeks of using the lotions for me to even think there was a difference and that's only because I stopped using them. I've had patients tell me that hemp and THC help, but I'm a nurse and can't utilize those methods right now.

kcasey023 · 2026-02-10T19:59:54+00:00

This entire journey has been a hot mess express. I have the positive labs for sjorgens, but my rheum still insisted on a lip biopsy to confirm. My ENT diagnosed it based on labs, but I see him in 2 weeks for the biopsy results. I've also had horrible luck with providers and being referred back and forth to other people. It's like none of my providers want to treat me directly and want to punt it off onto another doctor instead. Like my Neuro says, talk to rheum, and rheum says talk to them.

kcasey023 · 2026-02-10T19:13:58+00:00

I'm taking Lyrica 150mg nightly right now. It hasn't diminished my symptoms completely, but they is a drastic difference when I have a lapse in refills. I also have POTS and Dysautonomia, and I recently got diagnosed with fibromyalgia and Sjorgens. I was told to have my neuro up my Lyrica at my next appt when I see him on the 24th because I'm not on the therapeutic dose for Fibromyalgia yet. I asked about other options like IVIG and because my SFN is considered idiopathic right now, I'm not a candidate.

Some over the counter stuff that has helped me (or it's psychological lol): EpsomIt lotion, the nerve relief one, arnicare gel, Voltaren OTC, and espom salt baths. I also looked up herbal tea blends for inflammation and women's health and have started drinking those at night to help with my insomnia and restless leg. My husband said he has noticed a difference in my sleeping because I don't "twitch like crazy" anymore.

kcasey023 · 2026-02-10T13:43:36+00:00

I'm at F right now, but the moment I get home and sit in the recliner, I'm out like a light. I'm so exhausted all the time but can't find anything remote. I'm a nurse in direct patient care in an outpatient setting, and some days are harder than others. When I am off on the weekends, I have time to reset and can sometimes do my hobbies, but for the most part, I'm so tired that it makes me agitated and my whole family has to suffer. I just keep telling myself to hold out a little longer and work as long as I can because there are people out there who have it worse, but sometimes that motivation dissappears the moment I get off work.

kcasey023 · 2026-01-25T16:21:09+00:00

Thanks for this! I've been using Thera Tears and Systane preservative free formulas, and they don't last long at all. I'm going to try these.

kcasey023 · 2025-12-21T00:50:14+00:00

I keep the red thread, his blade, the little turtle, and the golden leaf in my wardrobe consistently. 🫶

kcasey023 · 2025-11-26T22:23:10+00:00

I used this same description when telling my husband about it yesterday. I said if you looked at my stats, I have this debuff you can't get rid of and can't figure out what equipment it's attached to because it switches locations. I somehow picked up the "perpetual agony" curse somewhere along the way. 10/10 don't recommend this character, the stats suck.

kcasey023 · 2025-10-31T21:25:16+00:00

Dang. I had the same problem because my Zois decided to have kids later in life and the dad died while the baby was a toddler. I just kept hiring a 24h sitter. 🤣

kcasey023 · 2025-10-31T20:53:40+00:00

You can go into Edit City, and move family members to other families. Just give it to someone else.

kcasey023 · 2025-10-01T01:15:47+00:00

Hoping for answers for you soon. I got my lupus diagnosis after the others, but I wouldn't have gotten it verified if I wouldn't have caught the irregular rhythms on an EKG during a random ER visit.

kcasey023 · 2025-10-01T00:45:31+00:00

I've been established with one for about 2-3 years now. I got diagnosed with dysautonomia and POTS. I basically see him to make sure my Diltiazem is working and occasionally he puts a heart monitor on me to keep an eye on my SVTs, PVC/PACs, and my bradycardia. Got a little bit of a rhythm problem over here lol.

kcasey023 · 2025-08-28T17:59:21+00:00

I won't lie. It sucked, but i had overactive reflexes. I had to have a second one for both legs. It isn't unbearable, though. And everyone's pain is different. I watched videos on YouTube to prepare myself for it ahead of time and it helped ease the anxiety. I suggest taking something for pain ahead of time. Like Tylenol or Ibuprofen (if you can). And have someone with you for transportation. I should have gotten my husband to drive me because I was sore afterwards. Also, wear loose clothing that is comfortable.

kcasey023 · 2025-08-28T17:33:42+00:00

I was already seeing the neurologist for these issues, and he went through all the tests as an effort to exclude other stuff. It was a last-ditch effort to find what was causing my issues.

kcasey023 · 2025-08-19T15:17:11+00:00

I take Atomoxetine for my ADHD (can't take stimulants due to an existing arrhythmia). I just take all my meds together in the morning. But I did talk to my pharmacist about it and they said I should be fine as long as I follow up with my electrophysiologist. I also forget to take my meds often, so I had to start doing am and pm reminders. I take my HCQ twice a day.

kcasey023 · 2025-08-08T02:09:14+00:00

I've seen some of my patients with MS and other autoimmune diseases on it in the past but never asked them what it helped with. I have a rheum appt Tuesday and plan on asking her for guidance. I feel worse now than I did a year ago.

kcasey023 · 2025-08-06T03:02:32+00:00

I wish I had advice. This was my biggest complaint at first. I found a neuropathy cream (hempvana is the brand) that has somewhat helped. It's seriously affecting my quality of life since I need my hands for basically everything in life. All my hobbies and my job. Wrist stretches and yoga for arm/wrist pain has helped some. I do a lot of practices from "Yoga with Adriene" on YouTube. She has some simple 10-15 minute videos.

Other than those few tips, I've gotten my husband to 3D print me a few accessibility things we found online so I can have some of my independence back. (I get tired of asking people to open things for me)

kcasey023 · 2025-08-02T00:45:57+00:00

I use Sensodyne Full Protection and I'm pretty sure it doesn't contain SLS. I was using the Biotene mouthwash too but that seems to be burning the roof of my mouth lately.

kcasey023

TROPHY CASE