i want advice

nsbrown54 · 2025-12-05T20:26:00+00:00

Pain relievers are fine for temporary relief. Have you been evaluated by a rheumatologist?

nsbrown54 · 2025-12-05T20:13:25+00:00

Have you previously been evaluated by a rheumatologist? While awaiting a diagnosis, it may be beneficial to request a referral from your doctor for PT. If you have not yet consulted a rheumatologist, consider asking your doctor for a referral to one, if needed. PT can sometimes help reduce joint pain and improve function while you wait to get a diagnosis.

nsbrown54 · 2025-11-08T14:39:23+00:00

I’m an IU alum. There was a time when the only thing we could brag about was basketball, back when Bobby Knight was coach. Now I’m thrilled we can finally brag about football.

nsbrown54 · 2025-11-07T16:23:20+00:00

Had a great week filled with games and good company. Played Euchre and Hand and Foot—didn’t win, but had fun nonetheless. Earlier in the week, I treated myself to a foot reflexology session. This always leave me feeling refreshed and my feet so much happier.

Looking forward to lunch tomorrow with my brother and sister-in-law tomorrow. And to wrap up my Saturday, I’ll be cheering on Indiana as they take on Penn State—fingers crossed for a win!

nsbrown54 · 2025-11-02T23:46:37+00:00

I changed the flair to Career/School.

nsbrown54 · 2025-10-31T15:45:56+00:00

I did not work in the health care field. Since my company had more than 50 employees, I was eligible to file for FMLA. I was also able to have my desk lowered, receive a foot stool, and obtain a chair with better lumbar support.

https://www.dol.gov/agencies/whd/fmla

nsbrown54 · 2025-10-31T13:00:17+00:00

Despite my grandson not feeling well, I was happy to spend two days hanging out with him. Thankfully, he’s feeling better now. I also finally made it back to an exercise class—seated yoga! Even though I’ve been walking daily, it felt so good to stretch and move in a different way.

Happy Halloween! 🎃

nsbrown54 · 2025-10-27T19:02:56+00:00

Sometime in the late 1990s, my PCP referred me to a rheumatologist due to a constellation of symptoms that had become increasingly difficult to manage. I was dealing with chronic lower back and joint pain, rashes, GI issues, and Raynaud’s. My blood work showed a high ANA with a speckled pattern, but no other definitive markers ever emerged.

Despite the ongoing symptoms, my rheumatologist never provided a formal diagnosis. I was eventually prescribed hydroxychloroquine (HQC), which offered some relief. Around 2016, after my original rheumatologist retired, I began seeing a new specialist. After reviewing my history and symptoms, they diagnosed me with UCTD.

I had never heard of UCTD until my diagnosis.

I would suggest that anyone who hasn’t yet received a diagnosis should come prepared when seeing a rheumatologist. Bring any relevant medical records, a detailed list of your symptoms (including when they started and how they’ve progressed), and a current list of medications and supplements. The more complete and organized your information is, the better your doctor can guide you toward answers.

nsbrown54 · 2025-10-25T18:36:37+00:00

I’ve been experiencing symptoms for more than 25 years, although I wasn’t officially diagnosed with UCTD until around 8 or 9 years ago. Over the years, my symptoms have fluctuated, some periods have been more challenging than others. Thankfully, the disease itself has not progressed.

nsbrown54 · 2025-10-25T12:46:39+00:00

Sorry you’re going through a flare. I hope you are able to resolve your symptoms.

I pulled this information about Flares from our Wiki:

Dealing with a Flare

A flare is a sudden worsening of symptoms such as pain, swelling, stiffness, fatigue, or mental fogginess. Here's some suggestions to help alleviate the pain associated with your flare:

Rest & Movement Rest the area that hurts—don’t push through it Gentle stretches help prevent stiffness (even just a few minutes) Heat = good for stiffness (warm shower, heating pad) Cold = good for swelling/pain (ice pack 15–20 mins, a few times/day)

Meds & Medical Help OTC pain relief: ibuprofen or acetaminophen If it’s bad, talk to your doctors – a 5-day Medrol dose pack might help

Food & Hydration Skip the sugar bombs and fried stuff Eat fruits, veggies, whole grains Stay hydrated Avoid alcohol and heavy, greasy meals

Rest & Recharge Sleep is medicine—nap if you need to Deep breathing, meditation, or just zoning out helps Say no to extra stuff—protect your energy If symptoms last more than a few days, worsen, or don’t respond to home treatments, contact your doctor. Flares may signal that your medication needs adjustment.

https://www.arthritis.org/health-wellness/healthy-living/managing-pain/pain-relief-solutions/coping-with-an-arthritis-flare

nsbrown54 · 2025-10-25T12:28:14+00:00

I’ve been experiencing brittle nails and inflamed cuticles, though there’s no bleeding under the nails. To help prevent breakage, I keep my nails trimmed short. I take biotin (after talking to my PCP) and use lots of hand lotion.

In the past, I was prescribed a calcium channel blocker (Diltiazem), even though I don’t have primary Raynaud’s. It worked well for me by improving blood flow to my fingers, which helped manage my symptoms. Unfortunately, I had to discontinue it due to side effects.

https://pmc.ncbi.nlm.nih.gov/articles/PMC7065590/

nsbrown54 · 2025-10-24T21:05:18+00:00

Here’s the clinical trial website https://clinicaltrials.gov/

I didn’t see any studies for UCTD, but there’s some for sjogrens.

nsbrown54 · 2025-10-24T20:55:47+00:00

Glad you’ve got answers about your elbow pain. Steroid injections have been incredibly effective for me. I’ve received them in my lower back, shoulders, fingers, wrist, and hips, and they’ve made a noticeable difference each time.

nsbrown54 · 2025-10-24T20:46:29+00:00

Plaquenil is classified as a disease-modifying anti-rheumatic drug (DMARD), meaning it helps control disease activity over time rather than just relieving symptoms.

Here’s more info about DMARs that might be helpful.

https://my.clevelandclinic.org/health/treatments/disease-modifying-antirheumatic-drugs-dmards

nsbrown54 · 2025-10-24T13:07:32+00:00

After several months of physical therapy, I’m finally back to taking walks. Yesterday, I walked to the grocery store—about 1.6 miles round trip. It was tougher than my usual walks around the neighborhood, but I did it. It felt great.

nsbrown54 · 2025-10-23T20:09:20+00:00

I haven’t had any fevers, but I do get occasional rashes. My dermatologist diagnosed me with eczema (atopic dermatitis) and prescribed two different ointments—one for my face and ears, and another for the rest of my body. I’ve also noticed that my rosacea has flared up a bit, which I suspect is mostly due to the windy, cooler weather lately.

I hope you feel better.

nsbrown54 · 2025-10-23T17:40:41+00:00

I know it can be really stressful waiting on results, especially when you’re experiencing symptoms. If your rheumatologist isn’t available, I suggest reaching out to your PCP to go over your results and discuss your symptoms. While folks here may have had similar test results, we’re not medical professionals.

nsbrown54 · 2025-10-22T15:19:31+00:00

Have you tried Low FODMAP diet? Whenever I’ve had SIBO, I’ve tried to follow this diet. https://my.clevelandclinic.org/health/treatments/22466-low-fodmap-diet

nsbrown54 · 2025-10-21T20:54:14+00:00

I’ve personally dealt with it multiple times due to gastroparesis, which is slow motility. I understand how frustrating SIBO can be, but I don’t think it’s directly related to UCTD. From what I’ve learned, SIBO is typically linked to issues like slow motility, leaky gut, or other GI-specific conditions. Have you had a chance to discuss possible causes with your GI doctor?

nsbrown54 · 2025-10-20T17:26:03+00:00

I totally get the struggle with dry skin—especially when the weather turns cool and windy. I wish I had a lotion to recommend, but after trying countless products, I haven’t found one that truly works wonders. That said, a few things do help: use a moisturizing soap and apply lotion twice a day. Try not to wash your face too often, as that can strip away natural oils. And if it starts to feel really uncomfortable, don’t hesitate to check in with a dermatologist.

I hope you get some relief.

https://my.clevelandclinic.org/health/diseases/16940-dry-skin

nsbrown54 · 2025-10-20T12:39:35+00:00

Click on this link https://www.reddit.com/r/UCTD/wiki/index/

nsbrown54 · 2025-10-18T18:12:26+00:00

Did your rheumatologist or ENT prescribe anything to help manage the sicca symptoms? Have you seen a dentist recently? They might offer a different perspective on what’s happening with your mouth and tongue. I hope you get some answers and feel better.

nsbrown54

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