u/Sad_Emphasis_8086

I'm suspecting SFN because the more I researched it the more everything makes sense. I know for a fact I have hyperPOTS but the cardiologist only diagnosed POTS.

I tested positive for SSA and I am still waiting on lip biopsy and the blood work that the rheumatologist did because my primary doctor did my first autoimmune panel. But I don't see the rheumatologist again until October 12 for results🫠

I've gotten worse over the last few months and I can't tolerate anything anymore. Migraines back to back. Constant stabbing pain in my head and other neurological issues. My POTS has significantly gotten worse too. Any change in movement makes me feel terrible.

I'm on Carvedilol per the cardiologists recommendation. But that's only touching the tip of the iceberg. I feel like I'm still in constant fight or flight mode and I am at my wits end. I don't know what to do anymore.

I'm hoping that someone here may have something similar to me symptom wise and tell me what I can do or suggest to my doctors. I'm set to see a THIRD neurologist this year because the last two have been absolute trash. Nobody has gotten to the root of the problem.

NO ONE! the rheumatologist is one of the only ones in my area and he flat out told me that Sjogren's doesn't affect the nervous system. Other folks online told me to find another rheum but I'm in south Texas and I can't travel from how sick I am. I also don't work currently so no money for travel either.

I'm suspecting SFN because the more I researched it the more everything makes sense. I know for a fact I have hyperPOTS but the cardiologist only diagnosed POTS.

I tested positive for SSA and I am still waiting on lip biopsy and the blood work that the rheumatologist did because my primary doctor did my first autoimmune panel. But I don't see the rheumatologist again until October 12 for results🫠

I've gotten worse over the last few months and I can't tolerate anything anymore. Migraines back to back. Constant stabbing pain in my head and other neurological issues. My POTS has significantly gotten worse too. Any change in movement makes me feel terrible.

I'm on Carvedilol per the cardiologists recommendation. But that's only touching the tip of the iceberg. I feel like I'm still in constant fight or flight mode and I am at my wits end. I don't know what to do anymore.

I'm hoping that someone here may have something similar to me symptom wise and tell me what I can do or suggest to my doctors. I'm set to see a THIRD neurologist this year because the last two have been absolute trash. Nobody has gotten to the root of the problem.

NO ONE! the rheumatologist is one of the only ones in my area and he flat out told me that Sjogren's doesn't affect the nervous system. Other folks online told me to find another rheum but I'm in south Texas and I can't travel from how sick I am. I also don't work currently so no money for travel either.

Does anyone here have SFN and hyperPOTS? And later found out they have Sjogren's? Or the other way around. HELP!

I'm suspecting SFN because the more I researched it the more everything makes sense. I know for a fact I have hyperPOTS but the cardiologist only diagnosed POTS.

I tested positive for SSA and I am still waiting on lip biopsy and the blood work that the rheumatologist did because my primary doctor did my first autoimmune panel. But I don't see the rheumatologist again until October 12 for results🫠

I've gotten worse over the last few months and I can't tolerate anything anymore. Migraines back to back. Constant stabbing pain in my head and other neurological issues. My POTS has significantly gotten worse too. Any change in movement makes me feel terrible.

I'm on Carvedilol per the cardiologists recommendation. But that's only touching the tip of the iceberg. I feel like I'm still in constant fight or flight mode and I am at my wits end. I don't know what to do anymore.

I'm hoping that someone here may have something similar to me symptom wise and tell me what I can do or suggest to my doctors. I'm set to see a THIRD neurologist this year because the last two have been absolute trash. Nobody has gotten to the root of the problem.

NO ONE! the rheumatologist is one of the only ones in my area and he flat out told me that Sjogren's doesn't affect the nervous system. Other folks online told me to find another rheum but I'm in south Texas and I can't travel from how sick I am. I also don't work currently so no money for travel either.

I'm suspecting SFN because the more I researched it the more everything makes sense. I know for a fact I have hyperPOTS but the cardiologist only diagnosed POTS.

I tested positive for SSA and I am still waiting on lip biopsy and the blood work that the rheumatologist did because my primary doctor did my first autoimmune panel. But I don't see the rheumatologist until October 12 🫠

I've gotten worse over the last few months and I can't tolerate anything anymore. Migraines back to back. Constant stabbing pain in my head and other neurological issues. My POTS has significantly gotten worse too.

I'm on Carvedilol per the cardiologists recommendation. But that's only touching the tip of the iceberg. I feel like I'm still in constant fight or flight mode and I am at my wits end. I don't know what to do anymore.

I'm hoping that someone here may have something similar to me symptom wise and tell me what I can do or suggest to my doctors. I'm set to see a THIRD neurologist this year because the last two have been absolute trash. Nobody has gotten to the root of the problem.

NO ONE! the rheumatologist is one of the only ones in my area and he flat out told me that Sjogren's doesn't affect the nervous system. Other folks on here told me to find another rheum but I'm south Texas and I can't travel from how sick I am. I also don't work currently so no money for travel either.

I feel like I may not be drinking enough water and I know it varies by person but I'd like an idea of how much hydration y'all are taking in within the first hour of waking up.

I also just wanna see if it actually makes any difference to pile on the water within an hour of me waking up. I don't really drink enough in the mornings, I feel. Not electrolytes just water alone. Thanks! 😊

Like the title says. I feel extra sick or sicker than usual and I don't know why. Also, I had an appointment today AT 8 AM! 😭 it was absolute hell considering I only slept 5 hrs last night and I had to cancel my PT appointment to tomorrow. Sigh. I hate this.

What have y'all been doing today? Anything interesting, fun, boring, etc, I'd love to know! Just want some company!

I've had non-stop pain in the left side of my face. Rheum said it was probably from the swelling. But I also suffer from migraines and that has been absolute hell.

It's also gotten to the point where I lose vision. Not that my vision goes black but it's all so blurry.

I am on a beta blocker that was supposed to help with my POTS and also supposed to help with the migraines but idk it's doing anything for the migraines tbh. I had to go to the hospital the other day and they gave me a migraine cocktail and omg I had the best sleep ever and literally within the 24 hr mark it all came back swinging. And I've been in pain since. It gets worse when I'm stressed too. Numbing and tingling too.

My mom loves to attack me when I either debunk, prove her wrong, or call her out for saying stupid stuff because she knows what she's wrong and absolutely hates it.

I've been complaining about chest pain that's on and off (I have POTS and Sjogren's disease) and I am on a beta blocker but these last few days I've been feeling way worse that not even the medicine seems to be doing anything.

My blood pressure and heart rate (while not extremely high) have been a little high and I have FELT IT. I can't get up easily without feeling like death's knocking at my door. For some reason my mom thinks that if I just drink an alka seltzer that I'll magically be okay. I honestly don't know where she got that idea from or the reasoning behind it but I keep telling her that's not gonna do anything for my chest pain or blood pressure. She gets so upset over because I fight her about it too because it sounds so incredibly stupid. 😭

She then tells her little magic trick where she either insults me or says something hurtful like "everyone in the family just thinks you like to be sick because you never follow directions". And I was like wth? So unnecessary. I've told them countless times that I have medication anxiety but do they care to be supportive in any way? NO. it took me months to finally start taking the Carvedilol for my POTS and do I feel any real difference? Nor really but I'm finally taking it. I'm not being put on medication for the Sjogren's but I'm terrified because of side effects. And the possibility of it enhancing the effects of the Carvedilol. The number one reason behind my medication anxiety is that if something happens to me nobody will take me seriously because every time I've had a reaction to medication and complained about how it made me feel my parents ALWAYS got after me saying that I was overreacting and to always give it more time. I had one medication once make it hard to breathe and my mom didn't care to help me get it checked out. I had to drive myself to a doctor because she was too tired.

I just wish I had a more supportive family. Or just anyone who was more supportive of me. But yeah I definitely LOVE being sick. It's ABSOLUTELY THRILLING!!! 😊

I'm currently using the Skin 1004 one. The one in the brown bottle. And while it has been good it hasn't been a game changer for me. So I'm wondering what y'all might recommend for a cleanser that has helped with redness and combination skin.

EDIT TO ADD THAT I DO DOUBLE CLEANSE! I use an oil cleanser from target that I am not allowed to mention here lol and then use the skin 1004 Centella cleanser afterwards because I wear makeup often. Not heavy makeup but enough to need the double cleanse.

Saw the rheumatologist today for the first time and he has a high suspicion of Sjogrens and is ordering more tests.

Overall it was a good appointment and they made sure to ask me thorough questions and I made sure to answer to the best of my abilities but since I do have POTS and I have read countless articles related to Neuro Sjogrens I asked him if my POTS could be related to or be made worse with Sjogrens and he said that Sjogrens doesn't affect the nervous system in any way.

Should I take that face value or be skeptical of this doctor not knowing what he's talking about? I could use some insight.

He's also sending me to a dermatologist because I do tend to get rashes on my skin after sun exposure.

I don't know what to say or how to even begin to explain my history or my symptoms. Even tho my blood work showed it was positive I know that could still not be the case. But I'm just so traumatized from so many bad experiences with doctors that I fear this doctor won't take me seriously. I have already been diagnosed with POTS and I have a strong feeling that Sjogrens could be making all of my symptoms worse.

I could use some tips or guidance or just good vibes. Thanks.

EDIT: thank you to everyone who commented and gave their input and tips! I really appreciate it!! 🫂

I've been using these Walmart brand eye drops but I know there's gotta be better ones out there because these last me a few seconds before I gotta use them again but I usually go all day without eye drops until I realize that my vision is blurry and once I use the drops my vision is clearer. Does that happen to anyone else?

I've read that can happen and I've had this horrible zapping pain forever now and it's so annoying! I'm wondering if it's related to Sjogrens at all.

The most obvious thing I usually do is just stay home and watch YouTube or a movie. But I'm hoping someone on here has other ideas or just cares to share what they do on a Friday night when you're homebound.

Also, if anyone has any YouTube channels that they watch that they can recommend I'd love to know. I've been watching those shopping vlogs or "a cozy night in/bedtime routine vlogs" lol I'm really into makeup so I'd love to find new YouTubers who are chill and love those things too! It's like hanging out with a friend😭

If you guys know of any shampoo and conditioners (that are drug store preferably) that keep the hair smelling nice all day long?

I have pots and washing my hair is a hassle and I've had issues with my hair since being diagnosed. My hair is dry and brittle. It's so difficult to brush also. But my biggest issue is that my hair just stinks no matter how much I wash it. It also just never feels clean. And that's because I wash it twice in the shower on wash days sometimes 3 times. And no matter what I use it NEVER feels soft. It's so annoying. Idk what to do. 😭

I have curly mid length hair.

It's been about 3 weeks since I've been on Carvedilol and while it has been doing a mid job of giving me like 45% of my life back I still can't stand upright for more than 20 mins at a time and when I push myself to stand for longer periods like for cooking, washing dishes, or even doing laundry and putting my clothes away I still feel this rush in my body and all the alarms going off telling me to go sit the FK down before I feel like I'm gonna either gonna explode or die. (I have hyperPOTS and my blood pools to my legs and my blood pressure sky rockets while standing).

And yeah, this medication might have started lowering my heart rate now while standing and while it's no longer hitting anything above 130 it's still very exhausting and debilitating having to stand for too long. And the other day I tried wearing compression socks and I felt like I wanted to crawl out of my skin. It's so incredibly hot to wear them.

I just don't know what to do anymore. I was really hoping that I'd finally start finding a new baseline that would help me get back into the world and into society so that I could finally get some money again but nope. I have NO CLUE how I'm gonna survive the rest of my life. No income, no spouse/partner, no job, minimal support from family who's already very frustrated with me. I'm done with this.

I'm 32 and single. I always thought by now I'd be married and have at least a kid. I always thought that by now I'd have a stable job and at least a place of my own.

But God had other plans. Instead I'm back living with my parents and being a burden to them. Making my mom worry about my future and what's gonna happen to me when they're no longer here.

I have no partner or anything like that. No money or career to fall back on.

I've had health issues since I was 18 and my work history sucks ass. I've been unreliable because my body is unreliable.

I'm so exhausted. I'm tired of being sick and feeling sick all the time.

I just wanna have friends and go shopping. Clean my room. Make a meal. Have a family. Have a husband. I wanna be able to wash dishes without feeling like absolute death. I want to wake up one day and feel like my old self again.

It's been about 3 weeks since I've been on Carvedilol and while it has been doing a mid job of giving me like 45% of my life back I still can't stand upright for more than 20 mins at a time and when I push myself to stand for longer periods like for cooking, washing dishes, or even doing laundry and putting my clothes away I still feel this rush in my body and all the alarms going off telling me to go sit the FK down before I feel like I'm gonna either gonna explode or die. (I have hyperPOTS and my blood pools to my legs and my blood pressure sky rockets while standing).

And yeah, this medication might have started lowering my heart rate now while standing and while it's no longer hitting anything above 130 it's still very exhausting and debilitating having to stand for too long. And the other day I tried wearing compression socks and I felt like I wanted to crawl out of my skin. It's so incredibly hot to wear them.

I just don't know what to do anymore. I was really hoping that I'd finally start finding a new baseline that would help me get back into the world and into society so that I could finally get some money again but nope. I have NO CLUE how I'm gonna survive the rest of my life. No income, no spouse/partner, no job, minimal support from family who's already very frustrated with me. I'm done with this.

Anyone else?! I'm so sick and tired of waking up and feeling somewhat okay but as soon as I get out of bed and walk to the bathroom or kitchen I feel like my heart's gonna explode. Or like my body is just gonna give out. I hate that I have to just quickly do whatever I need to do (as in pee or make myself some breakfast) before I have to go lay back down.

And that's because I'm already medicated!! 😭

I really don't know how I survived the last six years of my life waking up early going to work. I really just remember pushing and overexerting myself to get to work on time. No wonder I'm so burnt out now.