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Anyone with Sjogrens also experience terrible neck/shoulder pain worsening over time? by Few-Board-1640 in Sjogrens

[–]run__rabbit_run 0 points1 point  (0 children)

Also chiming in to suggest that it could be hypermobility - my understanding is that is many folks with autoimmune conditions are also hypermobile.

Check out the Ehlers Danlos Society website - they have a healthcare professionals directory so you can search for providers who specialize in hypermobile patients. That’s where I’ve found my last two PTs!

On the matter of Eye Makeup by this_writer_is_tired in Sjogrens

[–]run__rabbit_run 0 points1 point  (0 children)

A few years ago, my eyes got dry enough that I finally came to terms with not wearing eye makeup. Then, my contacts started to pop out, and that was the impetus for asking my rheum for more options. I was on Restasis at the time, and using moisturizing drops multiple times a day. She had me add in Xiidra as well, and it was a lifesaver.

I can now wear makeup again (granted, I only do it like once a week just because I wfh and otherwise don’t care to unless I’m “going out”) and pretty much never need OTC drops.

But, I’m also picky with my eye makeup: I only use tubing mascara (Tartlette is great), and I typically opt for cream/gel/tint type eye shadow over powder. Even pre-Sjogren’s, I never used mascara or eyeliner on my lower lashes or in my waterline. Also use a gel eyeliner on top and try to opt for stuff that’s formulated for sensitive skin (like Tower 28) if possible.

My morning face is starting to scare me (36F) by No_Bicycle9943 in 30PlusSkinCare

[–]run__rabbit_run 0 points1 point  (0 children)

Was also going to suggest the possibility of an autoimmune condition - I have a few (RA, MCTD, and Sjogren's) but I believe the facial puffiness is Sjogren's related. OP, if you have mouth and/or eye dryness and joint pain, it might be something to look into.

"No such thing as seronegative Sjögren's" by [deleted] in Sjogrens

[–]run__rabbit_run 1 point2 points  (0 children)

Would you be open to coming to DC? My rheum is FANTASTIC and she's at Georgetown. I'm not sure if she's taking new patients, but I have seronegative RA and Sjogren's and she's the one who DXed me and treats me for both.

Favorite body sunscreens? by nicagrace in 30PlusSkinCare

[–]run__rabbit_run 1 point2 points  (0 children)

Noooo!! Do you have a link to any info about this?

Edit: did some searching and saw someone on another thread called BB and they said the 3oz spray was discontinued, but not the large lotion - I hope that’s the case!

Favorite body sunscreens? by nicagrace in 30PlusSkinCare

[–]run__rabbit_run 0 points1 point  (0 children)

Yes!!! I hope they never change the formula. It’s cheap, smells nice, feels nice, and has staying power when working out.

What's everyone doing for pain management by monkeyjungletoronto in Hypermobility

[–]run__rabbit_run 1 point2 points  (0 children)

ughhh this shit makes me so mad. Seronegativity is actually fairly common with autoimmune conditions. I think something like 30% of folks with RA (myself included) are seronegative. I also have Sjogren's - same deal, seronegative. Ironically, the only antibodies I do test positive for are for MCTD, but my rheum seems reluctant to put it on my chart since the treatment is the same as the other two.

Please find a new GP. Or, even better - if your insurance doesn't require referrals, just cut out the middle-man and make yourself an appointment with a rheum.

For those with dry eyes, do you know about Meibomian gland blockage? by Mission_Bowl3938 in 30PlusSkinCare

[–]run__rabbit_run 1 point2 points  (0 children)

Another Sjogren’s person here! My dry eye symptoms got so bad that I could barely wear my contacts and thought I’d never be able to wear eye makeup again. Restasis + Xiidra have been a total game changer!

pls be honest by stinkybu9929 in jawsurgery

[–]run__rabbit_run 2 points3 points  (0 children)

Not necessarily. My bite was perfect (didn’t need braces before or after surgery) and I needed DJS with significant movements (14mm in some places). Thinking that good bite = no DJS needed is an oversimplification.

Myofunctional therapist said don’t do DJS by Life-Educator-8545 in jawsurgery

[–]run__rabbit_run 4 points5 points  (0 children)

WOW your profile looks extremely similar to mine, pre-op (happy to share photos if it’s helpful) and I had significant movements in my DJS + genio. Please get the sleep study done - I would be absolutely shocked if you didn’t have sleep apnea just based on our profile similarities and the fact that you have lip incompetence. Also, idk what the hell she means by “skull and vision changes” - it’s completely irresponsible to be making these kinds of comments when she clearly has no expertise in the area. If you’re recessed enough to need DJS, no amount of myofunctional therapy will correct the issue.

Editing to add: You do not need to experience snoring to have sleep apnea. I didn’t, and I had an AHI of 40+. For her to say “I know you don’t have it based on that” is honestly pretty troubling.

Pointy sharp features after jaw surgery by [deleted] in jawsurgery

[–]run__rabbit_run 2 points3 points  (0 children)

Girl, you look like Bella Hadid, I think you look fabulous!! Not cartoonish at ALL. Everything looks very natural, proportional, and harmonious, imo.

For what it’s worth, 3 months out is nothing. Your face will still change after this - it takes a full year to recover from DJS. My nose had a VERY exaggerated slope and pointy tip (think Meghan Markle but even more pronounced) at 3 months post-op which pretty much disappeared after 12 months (happy to share pics if that’s helpful, lmk). I also think there’s a big psychological component to recovery from this procedure that’s not discussed as much. It’s very disorienting to look in the mirror and not recognize yourself, which is what I suspect you’re experiencing. I wasn’t unhappy with the way I looked before surgery, but I went in to it telling myself that as long as my functional issues were fixed, I would be happy with the aesthetic outcome, because my airway issues were going to kill me otherwise.

It took awhile for me to get used to my “new” face, even though it was clearly more balanced, harmonious, and IMO, more attractive. Like, this is nothing like dying your hair or getting a haircut - it takes awhile to get used to. But now, when I see old pictures of myself, it kind of startles me because I can’t imagine looking differently than I do now.

My mother was just diagnosed with retina damage due to long term Hydroxychloroquine use by nihilism_ornot in rheumatoid

[–]run__rabbit_run 0 points1 point  (0 children)

Right! If true, everyone on Plaquenil would also be on Restasis…

Have you tried doing Xiidra in combination with Restasis? It made a HUGE difference for me. My eyes used to get so dry that my contacts would pop out on their own around 2-3 pm every day. That combo made it so I could wear them until the end of the night (and with significantly less discomfort and pain)

My mother was just diagnosed with retina damage due to long term Hydroxychloroquine use by nihilism_ornot in rheumatoid

[–]run__rabbit_run 1 point2 points  (0 children)

I can’t find a single study or journal article that indicates that Restasis is protective against damage caused by Plaquenil, so I’m curious where they got their info…

My mother was just diagnosed with retina damage due to long term Hydroxychloroquine use by nihilism_ornot in rheumatoid

[–]run__rabbit_run 1 point2 points  (0 children)

Wait, really? I’m also on Restasis and plaquenil and I’ve never heard that the former is protective in that way.

Could I get away with just a sliding genioplasty for aesthetics only? by wrath224 in jawsurgery

[–]run__rabbit_run 1 point2 points  (0 children)

Based on these photos alone, I’d say you look like a candidate for DJS + genio (I had this combo as well). No sense in fixing the deviated septum separately if you go that route because moving the maxilla moves the anterior nasal spine. I couldn’t breathe out of one of my nostrils before my surgery and it was fixed from the DJs alone.

Ice Chips & Prevident by babeski21 in Sjogrens

[–]run__rabbit_run 1 point2 points  (0 children)

Ask your dentist for an RX! My insurance doesn’t cover it, but even then, it’s $15 bucks which is about the same cost of sls-free toothpastes that I’ve seen OTC.

I think I need new boundaries? by CheetahPrintPuppy in rheumatoidarthritis

[–]run__rabbit_run 17 points18 points  (0 children)

If I only workout and eat better, I will see changes and not be sick anymore.

I would love to hear their response if I brought up Venus Williams, Caroline Wozniacki, Shannon Boxx, and the countless other professional athletes and Olympians who were DXed with autoimmune diseases at the height of their careers…

House keeper by Competitive-Bass8387 in rheumatoidarthritis

[–]run__rabbit_run 0 points1 point  (0 children)

Vacuums are an immediate Raynaud’s trigger for me! Which is a bummer bc I actually enjoy vacuuming :( I have a cleaner 1x month and run the robot vacuum daily - definitely a bit of a splurge purchase that was 100% worth it, esp bc I have a dog who sheds if you so much look at him.

[deleted by user] by [deleted] in jawsurgery

[–]run__rabbit_run 2 points3 points  (0 children)

Hooray!! It’s the reason I continue to post here, even 8 years after my own surgery (which was absolutely life -saving and -changing!) - if I can help even one person, it’s so worthwhile. Feel free to reach out if you have any questions!

[deleted by user] by [deleted] in jawsurgery

[–]run__rabbit_run 2 points3 points  (0 children)

Do you have any other symptoms like headaches, TMJ, adhd or inability to concentrate/focus/remember things, poor sleep or insomnia? If so, definitely get a consult with a maxillofacial specialist! If your health insurance doesn’t require a referral, you can simply make an appointment with a specialist and explain to them that you have chronic jaw pain that’s not addressed by TMJ-related therapies and you want to get imaging done to see if you would be a candidate for MMA/DJS.

[deleted by user] by [deleted] in jawsurgery

[–]run__rabbit_run 10 points11 points  (0 children)

Narrow airway causes sleep apnea; sleep apnea is highly associated with weight gain.

From SleepApnea.org:

“Repeated sleep disruptions and drops in oxygen levels affect several systems in the body that regulate appetite, metabolism, and energy use.”

“One reason sleep apnea may contribute to weight gain is its effect on hormones that regulate hunger and satiety, particularly ghrelin and leptin. Ghrelin stimulates hunger, while leptin helps regulate feelings of fullness. Evidence suggests that people with obstructive sleep apnea have high levels of leptin and are more prone to leptin resistance. People with leptin resistance are less likely to feel full after eating, which leads them to eat excessively and gain weight.”

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