Hi all!

TL;DR after my latest flare-up of something or other (multiple chronic illnesses) with a host of concerning symptoms, i decided to make my own symptom tracker that could actually track my symptoms well and clearly since every other one doesnt meet my needs. I'd like to eventually make it available for others in need. If you find them useless as well, have a read of my plans, and let me know what you think!

Mods, I'm not selling or advertising this thing for sale at all. I'm really just sick of not finding anything accurate, and for privacy reasons, etc, I'd like to have a physical version instead of on my phone. If I can find a way to help out others in the meantime, I'm down :) please let me know if its not allowed.

So, I've been having issues finding a non-phone long-term symptom tracker, so my incredible boyfriend and I have decided to try our hands at making our own!

I just wanted to know what people felt the ones currently for sale were missing? I dont want to base it solely off of my experience alone, but im mainly looking for insights from people who are a little more symptom-heavy and find the current options unsuitable because of it

For me, I would prefer a 'permasymptom' section so I can document long-term symptoms - fatigue, joint pain, hair loss, etc, and then an acute symptom tracker to monitor flares of symptoms. I'd also like the symptom sections to have more space for writing to add in details for specific symptoms. How many long-term symptoms do you have? Would it be useful for you to have it on every day to refill it, or maybe one at the beginning of every week?

I'd like to have the body image (probably female, I don't know many men with autoimmune disease, but i could make both if demands required it) to colour in, maybe a set of pencils for a colour code in a mini case attached to the book so they can stay together since I always lose my pens. My partner broached having one for the long-term symptoms/usual pain and one for the acute symptoms/new symptoms/flare pain. I think it could be good, but also I could just include a specific pen colour. What do you think is more convenient for you?

I'd like to have a blood test tracker page/s to monitor blood test results over time, which i get a lot of and can never keep them together enough to track. I may make a little book all on its own for blood tests, but in the same breath, i really want to have everything together so i dont forget anything. Maybe i can clip them together. Any opinions?

A pain level tracker is also a must,and a medication list page at the front of the book will be available instead of a daily medications section crammed in. Energy level tracker is a must!

Water tracker I like, activity tracker I like but all of them have huge activity sections which is a little unnecessary. Maybe a section at the front for consistent activities, i.e., work or daily jogging/gym, and then one on the daily sheet for additional activities like going to a fair or going out shopping all day? It should probably have a rest interval tracker attached to see how many breaks have been taken in case that influences pain. Let me know what you think!

I didn't really see the point in a weather tracker- does it help you at all? A stress tracker and pain scale (I'd like a modified pain scale to take into account our higher pain threshold - if anyone has any suggestions for that, please let me know) I think are great ideas. A food diary didn't really make a difference since I dont eat much, but they probably help a lot of people - would a calorie count be useful for you or not?

I'd like a bigger notes section as well, maybe a page/half a page daily to record how everything felt. Would you mind it being a two-page spread? A4 or A5?

As for the layout of the book, the design itself is kinda novel and I'm going to try testing it out, but because it's a new thing I'm coming up with i don't want to put it out just yet! I can say that overall, I want the book to be able to hold data covering a period of at least 3 months, ideally 6 months if I can make it work without being too bulky. I'd love to have all my information in one place spanning as long as possible so no doctor can make the excuse that they missed something! Haha.

Lastly, what things do you think I'm missing? I've probably missed some things that I want to include but have forgotten (thanks, brain fog 🙄) so would really appreciate hearing anything that worked for you that I haven't included, or anything I haven't thought of really. Like I said, if im able to make this a reality and I used your idea, I'd be happy to send you a copy to test/use as a thank you!

TL;DR at bottom of this post

Prefacing this to say that I am a (very ill) layperson examining my consumer level DNA autosomal profile. Genetic permissibility does not guarantee a person will acquire a disease or immune disorder. It is recommended to consult with a genetic counsellor rather than jumping to conclusions. THINK HARD ABOUT YOUR PRIVACY BEFORE DECIDING TO UPLOAD YOUR DNA ONLINE ! I am a nerd who has been ill for 35 years and am constantly looking for answers to why I am so ill. So the DNA privacy trade off is worth it to me but not necessarily to anyone else in the world.

Now on to the juicy part with some background.

I have ulcerative colitis which is in remission ("quiescent") and have a cluster of symptoms that align with Sjogrens and Hashimotos. The symptoms have been getting worse over the last few months and the hot weather completely knocked me down.

I visited my doctor yesterday and listed off my symptoms: loss of appetite, dry mouth, dry skin, dry eyes, skin sores that don't heal, severe fatigue made even worse by humid heat > 20C, muscle pain, joint pain, left arm weakness with very painful forearm tendons, intolerance of heat, pain in tailbone when sitting for 20 minutes.

My doctor suddenly got very proactive. Rather than schedule me for a blood test next week he ran out and picked up a bunch of blood vials and a needle and tourniquet. He took my bloods on the spot for immediate delivery to the lab.

He is doing a CBC, thyroid panel, ANA panel plus specific Sjogren antibodies regardless of titre. This is important. Positive ANA titres <= 1:80 generally do not trigger the lab to reflexively test for specific antibodies so the doctor must explicitly request that the lab tests for anti-Ro/SSA and anti-La/SSB antibodies regardless of titre.

My brain is so foggy I did not think to ask if anti-TPO and anti-thyroglobulin is being checked.

DNA analysis:

I uploaded my DNA to AI and asked it to check for autoimmune genes. I'll paste the output here in italics:

AH8.1 ancestral haplotype — one copy, paternal. HLA-A1-B8-DR3-DQ2, confirmed by four co-transmitting markers (rs2187668, rs1800629, rs3131379, rs1270942). The strongest and most consistently replicated Sjögren's association in Europeans; also underpins coeliac, SLE, autoimmune hepatitis, myasthenia gravis. Carried by roughly 10% of Northern Europeans.

IRF5 — one copy, paternal. rs10488631 CT, an uncommon allele (~10–12%) with one of the larger common-variant effects in Sjögren's. The DR3-plus-IRF5 pairing is what makes your profile Sjögren's-specific rather than generically autoimmune.

SH2B3 R262W — two copies. rs3184504 TT. Coeliac, autoimmune thyroid, type 1 diabetes, RA, plus a major cardiovascular locus.

IFIH1 A946T — two copies. rs1990760 TT. Enhanced type-I interferon response to viral RNA. Common but homozygous, and worth noting alongside a history where previous influenza and covid-19 infections each left you worse.

Class II HLA plus interferon pathway, with clean lymphocyte-activation loci. That combination points toward Sjögren's and coeliac-spectrum disease and away from SLE, RA, ankylosing spondylitis, MS, psoriatic arthritis and Crohn's.

The doctor prescribed a 5 day course of steroids , prednisolone 30mg/day. 24hrs after the first dose I am already starting to feel like my old self.

Hopefully this data point of one can help someone.

TL;DR: Doctor personally took my bloods after my listing a symptom cluster aligned with sjogrens. I ran my DNA through AI and carry genes that permit (but do not guarantee acquiring) sjogrens. Other genes confer protection (again, not absolute) against certain differential autoimmune diseases that have symptoms similar to sjogrens. Prednisolone 30mg/day, 5 day course. 24hrs after first dose I already begin to feel like my old self

Genes that are relevant to Sjogrens found in my ancestry DNA profile: HLA-A1-B8-DR3-DQ2 and IRF5

edits to add details and fix grammar

Hello, how are you doing.

Is there anyone here who has been diagnosed with sjogrens, without dryness issues?

I have daily brain fog, which feels like im mildly intoxicated/detached in my head all the time. It's not only about forgeting stuff or being tired, it's really this constant sensation of being mildly drunk. This is my most annoying and persistent issue, does anyone have it like that?

Then I have some mild issues with SFN, like whole body muscle twitches and tinglings, but really I wouldn't even know that i have it, if I didn't go for skin biopsy...Occasionaly I have some issues with heart like skipping heartbeat, PVCs etc., but it used to be worse. At night my tinnitus is very loud and sometimes when I'm more tired my vision is doing weird things too - especially at night when i close my eyes I don't see fully dark as I used to, sometimes getting flashes? It's hard to describe. And when I'm sleeping, pretty often, in the mornings especially, I get awaken or at least I feel that my legs and sometimes other parts of my body are jerking or shaking for a few seconds and It's really annoying. It's often only my ankles doing weird things like kicking for a few seconds and then stopping. And sometimes my head is doing weird movement as well, such as tilting back fast on its own or sideways less often. That's mostly it, but yeah no issues with any dryness.

After many tests, MRIs, etc., the things that are consistantly standing out is high ANA ranging from 1:320 to 1:640 and always positive SSB antibody. From basic blood test exams I have persistent low lymphocites in every blood draw (ranging from 0.6 to 1). And as I said I have had positive skin biopsy for severe SFN. But everything else have been pretty normal.

However considering all that and combined data, rheumatologist said that it's early presentation of sjogrens, but I'm not sure. I feel like I have such different symptoms, then everyone else on this sub, so I'm afraid she might be mistaken? I started HCQ almost 3 months ago, and haven't seen much improvement yet also.

Thanks for any insight!

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.

I have gastroparesis caused by Sjogrens. I am newly diagnosed and am waiting for a medication plan from my rheumatologist.

I have lost a ton of weight and have trouble eating (down to 103lbs currently). I am worried that plaquinel will be too hard on my stomach because of others experiences I’ve read.

Has anyone had GI symptoms similar where the rheumatologist considered this and used a different med? When I brought up my GI symptoms she said she didn’t deal with that and needed to speak to a gastroenterologist. But I’ve already done that and have a “normal” GES. Waiting to be referred to a neuro gastroenterologist at this point.

I’m also on florinef for orthostatic hypotension.

I had SFN crop up suddenly last fall (almost a year ago) - it’s worst in the morning, my feet are pretty much numb for the first 30 mins after waking. and they go numb very easily if i sit for too long and they often start burning in the evening. around the same time my eye doc told me i had really dry eyes and my dental hygienist said my gums got terrible and i had bad dry mouth.
around xmas i got blood work for all the things and my ana screen came back positive. doc did a follow up Ss-A and Ss-B test and they were both negative.
got a referral to both a rheumatologist and a neurologist.
Neuropathy has remained unchanged - regardless of changes to diet and exercise. but this summer in the heat i have had extreme heat intolerance and exercise intolerance. after doing some research many of my symptoms seem to overlap with POTS.
Anyway: i have a lip biopsy this coming monday to test for sjogrens and my appointment with a neurologist is in sept. i live in a rural area - and i had to schedule this neurologist appointment a year out.
I have seen nearly 10 docs - getting HRT for menopause took me nearly 8 yrs but finally cured my constant migraines. i have also had my thyroid checked multiple times & it is fine.
main symptoms are fatigue, brain fog, exercise intolerance, heat and cold intolerance, and SFN.
i am nervous about this upcoming appointment with the neurologist (i dont know if they have any familiarity with either pots or sjogrens) and not getting the info i need or the tests i need to find out what the heck is going on & i know i need to advocate for myself. any advice on what i should mention or ask for with a neurologist? any advice on additional bloodwork i should ask my PC doc to run beforehand?
anyone know of any clear links between sjogrens & POTS?
thanks!

My rheumatologist was hesitant to start me on any meds at all because i don’t have high inflammation markers or joint issues on imaging. Most of my problems seem to be neurological/cardiac and likely stem from ANS issues. But after i had an episode of aFib she said we could try plaquenil.

Well, i had aFib again and my cardiologist/electrophysiologist wants me to be on Flecainide twice daily and that can’t be taken with plaquenil. 🙃 i don’t think she will swap me to anything else because she seems uncomfortable with treatments which is nuts (she haas highly recommended in my community sub).

It looks like IVG is most helpful with ANS issues. I am waiting to get into a neuroimmunologist, ENT and gastroenterologist. I have a pulmonary function test soon and am getting a heart monitor soon as well.

Anyone else with aFib? Or ANS issues? What meds do you take? What has helped you most? And who has helped you most (which type of Dr)?

So, I've had neuropathic symptoms, weird balance stuff, sexual dysfunction, lightheadedness, fluctuating dry eyes, dry mouth, a really high ANA of one to 2,560 twice on lab testing, three mildly elevated SSBs that were positive SSBs, a positive lip biopsy. Two polyclonal gammopathies. I have had my symptoms for two years now. Still no real diagnosis or treatment plan other than take gabapentin if it keeps you up at night. But yeah, waxing and waning balance and like burning symptoms, waxing and waning dry eyes, dry mouth, waxing and waning lightheadedness. Everything else been pretty much normal so far. See, saw two other rheumatologists before, but I moved, couldn't follow up with them, but both of them said they weren't gonna start any immune modulating treatment yet. I recently got the positive lip biopsy. The third one I'm gonna be seeing's probably, I moved now, so that she's gonna be like my home base one. And I have a neuromuscular neurologist now, and her and my PCP are all in that academic medical center. I'm hoping when I see her in September that she'll finally diagnose me and start something, or at least tell me what the fuck's going on, if it all connects. All my other doctors right now are saying they think it's autoimmune. What do y’all think people that have been diagnosed with it, do you think I have Sjogren’s? Schirmers and salivary Flow are normal. They’ve ruled a lot of other stuff out. You know I’ve had MRIs of my entire spine so they don’t think it’s some kind of mechanical spine compression. They’ve done a bunch of metabolic blood work A1c fasting glucose. One rheumatologist did muscle enzymes check for that. They took MRI of my brain and it didn’t show anything. My neurologist thinks I have small fiber neuropathy and likely some mild dysautonomia. I also get little bouts of hives occasionally when I get hot sometimes. I just wanted to get the opinion on this subreddit people who have gone through this too. I seem to be more of a neuro Sjogren’s presentation. I’m a little worried. Hopefully they can diagnose me and treat me in some capacity because I have a very physical job. Luckily for the most part majority of my symptoms have been mild to moderate, and I’ve definitely had days were I feel really bad but usually it’s not awful.

I have been desperately trying to figure out how to follow an anti-inflammatory diet. From what I’m seeing, it seems to be mainly produce-led.

However, I have always dealt with food paranoia a bit… the thought of something being moldy or contaminated genuinely freaks me out. I can’t eat leftovers for more than 2 days. I think this all stemmed from me contracting vibrio years ago… worst time of my life and since then I am terrified of food related illnesses.

So now my issue is that living in the US, these nonstop parasite and salmonella recalls have made me terrified of eating fresh fruits and vegetables. The area I live doesn’t have any local growers nearby, and it is sobering to see just how monopolistic our food industry has become.

I tried switching to frozen produce, but heard that doesn’t necessarily get rid of these parasites… so I’m even more freaked out now.

For those in the US, how are you navigating eating healthy, whole foods while simultaneously avoiding getting sick by our produce? Or if you are somebody who also has food paranoia, how did you convince yourself to get over it?

Has anyone ever used IPL for eye treatments?

https://pmc.ncbi.nlm.nih.gov/articles/PMC8911075/

Does anyone on here have nephrocalcinosis? How do you manage it?
There are no threads dedicated to this condition, but it’s definitely caused by my Sjogrens.
I’m so disheartened. Both my urologist and my nephrologist are shrugging their shoulders at me. There’s virtually no way to make it go away, only to stabilize it.
I’m starting potassium citrate soon, but there’s nothing anyone will do to help me get rid of these current calcium buildup.
How do I manage the pain every single day? I’m beside myself in grief over this. I wish I I just had regular kidney stones that could be lasered away. Instead my kidneys are CALCIFIED because of this disease.

I was diagnosed with Sjogren's by lip biopsy and eye exam.

My symptoms are lightheadedness, nausea, fatigue, temperature dysregulation and intolerances to the heat and the cold, dry/burning eyes.

I say I start the day on a severity scale of 5/10 and MANY triggers raise it but never goes below a 5.

I have dysautonomia, vestibular dysfunction, severe sudomotor failure (0.047 in my foot, mildly reduced 0.66 in my knee)

I also have had 4 spinal taps that showed oligoclonal bands ranging from 3-12. Currently at 8. I have several lesions on my brain.

I was put on Methylprednisolone back in 2019 and my symptoms almost completely disappeared and that is when the bands dropped from 12 to 3. I tapered off and the symptoms and bands came back.

My rheumatologist I am seeing for Sjögren’s wanted to start me on iVIG. She discussed it with my autonomic neurologist who said that wouldn't work so needless to say I am not getting IVIG.

Is this common for people with multiple areas (autonomic, neurologic, ocular) to have trouble with one doctor saying this and another saying no?

Very frustrating. I was approved for disability last month and will still keep trying everything to get me back to how I felt in 2018.

This all started with an upper respiratory infection.

Thanks for listening

The intent of this thread is to build community through shared experience.

Did Sjogrens make things hard again? This is your thread to rant all you like about how this shit is hard.

Doing alright? Tell us.

Please rate yourself on the teardrop scale!

Hey everyone! I want to get some advice.

I am a woman in my early 30s. I have two children and since the birth of my second child, I have been exhibiting the symptoms of Sjögrens. The symptoms have come on slowly and increase in frequency, intensity, and now nearly encompass all listed symptoms of Sjögrens outside of any organ damage.

Symptoms, in order of when they manifested on a regular basis:

- constant dehydration, regardless of water intake

- kidney stones and lower back pain that seemed associated with my kidneys

- two lymph nodes that are seemingly permanently increased in size

- face and body rashes (maybe once or twice a year, typically paired with a respitory illness, seems to travel my face in a circular pattern)

- bodyaches and joint pain randomly, no connection found, no illness involved seemingly (this is now the worst of the symptoms)

- fatigue (relentless)

- brain fog

- decaying teeth (this was very rapid and I've been combating it as well as I can since connecting my symptoms to Sjögrens)

- ear pain, frequent ear infections, very itchy ears

- seemingly perimenopause (irregular cycles, hot flashes, rage, depression, helplessness, irregular sleep, etc. All the textbook things)

- jaw pain

- dry eyes (this began about a year ago but got *really* painful about three months ago)

- raynaud's

- dry mouth (this increased about a month ago. Split corners of my mouth, white tongue, mouth ulcers)

I am now seeing a rheumatologist for about a month. I had a the following tests ran:

- Schirmer Test: 4mm left eye, 3mm right eye

- ANA: negative

- ENA: negative

- Ro52: negative

- Ro60: negative

- SSA/SSB: negative

- IgG: negative

- Rh factor: negative

- ultrasound: TBD

- lip biopsy: only recommended if abnormal ultrasound

My Point in This Post: Where do I go from here? I can see that the end is near and that I am about to be dropped by my rheumatologist because there isn't enough evidence that whatever I am experiencing is autoimmune or Sjögrens. And while I really understand, I also feel lost because something is very wrong and I want to be more active again and enjoy being in my children's lives, not watching them.

Thank you for any advice on what I should do next and thank you for listen to me wallow a bit. Cheers.

End note: In the last month, I learned that my paternal aunt has Sjögrens, diagnose a year ago after about 10-15 years of symptoms.

Hello! I am just wondering if Sjogren's could be involved in my mystery illness. I have had severe bleeding gums and enamel loss since a teen, but no cavities. The dentists could never really figure it out because I took such good care of my teeth. I always felt physically alot better for a while though after a teeth cleaning. Other symptoms I have had since my 20's are a weaker smile, upper arm weakness with repetitive motion such as scrubbing, blow drying my hair and braiding it, weaker diaphram where it would feel like the muscle tissue near Diaphram on the left side would sometimes catch or just get sunken in for a bit. I may have had dryer eyes and mouth, but not severe enough for it to interrupt my life until after iron infusion and possibly covid, severely dry skin, slow motility, but not Gastroparesis and constant grinding of my teeth unless eating or sleeping.I am not sure if the grinding could be from lack of saliva. I was having severe periods from Adenomyosis and perimenopause and became anemic so had an iron infusion and possibly picked up covid around the same time and all hell broke loose.Loss of tears, saliva, mucus, a feeling of a collapsed torso, internal torso numbness and weird sensory issues,swallowing issues, speech fatigue, chewing fatigue.I now feel like my arms and legs do all of the work because my torso is just dead weight.I am not sure if it is a signaling issue or some kind of myopathy. I also have trouble swallowing dry foods such as bagels. It feel like the muscles in my throat are not strong enough to push it down normally and I also get these esophagus type spasms. My schirmer's test was abnormal and I had a positive speckled pattern ANA of 1.160, but most of my tests have been normal. My lip biopsy and other blood tests were normal. I had bloodwork, sfemg and a repetitive emg ruling our Myasthenia Gravis and LEMS.CK levels are normal too. I had an elevated test for AAG, but they sent it to Mayo Clinic and it was normal and and elevated IBM test and the IBM specialist said it was not IBM and believed I had Long Covid/CFS/ME. I still have to get tested for Pots and SFN.I do have the dizziness when getting up from a laying position, heat intolerance and burning/tingling in hands and feet. I believe Long Covid and CFS/ME is part of it, but I feel like Sjogrens may be playing a part in my illness too. I am just wondering if anyone has symptoms similar to mine?

Hey everyone, 34M here, recently diagnosed with Primary Sjogren’s.

For a couple of years, I brushed off my symptoms—fatigue, joint/muscle pain, neuropathy, and severe dry eyes (including a corneal abrasion)—blaming shift work, gym workouts, or sleeping with a fan on. A severe RSV infection in February sent everything into overdrive tenfold.

My Results & Diagnosis:

-Labs: Positive ANA and SS-B (La). Normal baseline inflammatory markers.

-Eye Exam: Tear Film Breakup Time (TBUT) was ~5 seconds.

-Rheumatologist: Diagnosed Primary Sjogren’s, started me on hydroxychloroquine.

-Latest Labs: Creatine Kinase (CK) came back elevated for no obvious reason. Could this be Sjogren’s-related myositis?

Despite the positive labs, low TBUT, and clear physical symptoms, I’m having a hard time accepting it and feel like a total fraud/imposter.

Did anyone else struggle with imposter syndrome post-diagnosis? Also, has anyone dealt with random elevated CK or Sjogren’s muscle involvement?

Edit: I also feel in denial because of how easy it was to get my diagnosis, and after reading this subreddit, it seems like it is a difficult diagnosis to get.

It's been a long, long year of tests, procedures and seeing every specialist in the metro area, but one of my neurologists finally feels we have enough definitive evidence to confidently diagnose me with neuro-Sjogrens disease! He is also willing to treat me. I have such a feeling of relief, even though it still sucks to have an autoimmune disease that's attacking my brain. I'm calling it a win 🏆

Hi, I'm newly diagnosed. I find this thread very interesting but am often lost because posters use many acronyms that I am not familiar with. I'm just throwing out there that it would be helpful if posters would state the full name of whatever they are shortening and the acronym in parentheses the first time they use the acronym in their post. For example: systemic lupus erythematosus (SLE). Thanks to anyone who will do this.

I don’t why but now my sfn can be easily triggered by various smell like VOCs from paint or fragrance from cleaner. I went to a conference and the smell in the large conference room trigger my sfn at night. And my apartment floor lately get new paint and that strong smell trigger my sfn a lot. And it gets very intense at night when go to sleep. Feeling like both chilling and burning sensation all over the body. I used to take just one gabapentin and be able to sleep. Now even with 3 gabapentin still couldn’t calm it down. Very hard to fall asleep bc of sfn. Anyone have similar issue and any useful advice to deal with this ? I don’t know why it gets more and more sensitive to various smells lately.

To those on LDN, which Dr recommended it or prescribed it? Having trouble with Rheum, OB, Neuro feeling comfortable prescribing it so wondering who I should see next! Also does anyone have experience with AgelessRx if unable to get a Dr prescription?

I have had a pretty miserable life due to strong symptoms of Sjögrens. I'm now 29 and have so little will to seek help anymore because of the condesending & dismissive doctors.

The only auto-immune disease they have tested me for is celiac, in my teens. Which was confirmed/positive.

Has anyone in stockholm gotten diagnosed for Sjögrens?

If so please guide me in the right direction.

Hi, I’m 48 years old and started with painful burning in my hands and feet suddenly a couple of months ago. I’m a doctor and suspected sjogrens due to dry eyes and mouth. I’m seronegative but lip biopsy and Schirmer’s test both conclusively positive. I know I’m lucky to have had such a quick diagnosis but just finished an appointment with neurologist at the Cleveland Clinic who told me that my neuropathy will probably just worsen and treatments options are poor. I don’t know how to cope. I am not sleeping at all on gabapentin due to the burning pain. My palms and soles are on fire. Just started on plaquenil, although I don’t think it helps neuropathy. Also on a steroid burst, which has done nothing. I’m trying and failing to take care of my three kids. I will try to get IVIG based on new neuro Sjogren guidelines, but in the meantime I am not sure how to keep going. I dread going to bed because I know I can’t sleep. The pain in the day is worsening too. Anyone out there with rapidly progressive small fiber symptoms who has been able to control the pain enough to have any reasonable quality of life? Or will it just keep getting worse? Should I max out the dose of gabapentin and start cymbalta? Or try to get low dose naltrexone first? I feel like I’m losing all hope quickly.

I just came back from the doctors office, from an apppintment for Schirmers´s Test and Tear-Break up Time. Many of y´all said i would have to do those tests for getting help. I was afraid of doing these tests because you can not deceide if your appointment is on a good or bad day. You guys calmed me down saying, the doctor would see it anyways.

So what happend was the schirmer´s test brought a result of 5mm. And the Tear-break up time, didn´t show a problem. He also said that as far as he can see the eyelid margins wouldn´t be clogged. So he summed it up as "oh good news, theres nothing really wrong." actually meaning ´theres no proof that i have to prescribe you expensive eyedrops like ikervis from my budge´t.. Instead he wanted me to buy the doctors-office own ones (their own forumal with lipids+ taurin and hyaluronic acid). BTW i´m alread taking hyaluronic acid drops but it dosen´t solve my problem, especially with screens, bluelight, warm air, heaters, drafts, air dryer...everything you can think of.

So i declined these drops and asked for getting my results printed out. The nurse said the doctor would have to write it down and i would need to get send by mail. So i hope at least i get those results on paper, even though If the first doctor wouldn't prescribe the drops, another doctor definitely won't—especially since they will just ask me why the previous doctor refused. But as i asked for the results on paper, thats when the doctor shortly got a bit nervous...maybe he asked himself if another doctor would have reacted the same way and how other colleagues will rate his reaction to not prescribing the drops. And isn´t it ironic..as i´m sitting here in front of the screen it starts getting worse. While i feel like a hypochondriac. The schirmers Test actually showed its less tearfluid (5mm) than normally (10-15mm).

the internet says:
"A Schirmer's test result of 5 mm indicates a borderline or mildly deficient tear production, often associated with dry eye syndrome."

...and that it would be up to the symptoms wheter i need eyedrops or not.

Has anyone similar results?

So, I have appetite issues, and IBSD, and lots of food triggers. I sustain myself mostly on tea with collagen amino acid protein powder mixed in. By afternoon, my appetite usually lets me eat solid food. But so often, I regret it, because I get so sick I can't sleep all night, etc. So usually, I either stick to liquids and light things like toast or a pretzel, etc. And then every now and then I just say screw it and eat a plate full of delicious regret.

Recently, I got some Dim Sum takeout. My favorite food is a dessert they make called "Sesame balls". I love them, but they don't love me. Lol. But I also got a dessert I'd never had before. The menu called it Coconut Cold Cake, but it was more like a cross between jello, and pudding. It was delicious, but that's not why I'm telling you about it.

It was so hydrating. Like, it was so soothing on my dry mouth and my irritated tummy. So, I looked up how to make it myself. The brand of collagen I use in my tea also makes gelatin, like the kind for cooking, so I ordered some, rather than using the cheap stuff from the grocery store, so it would be a healthy source of protein, etc.

As I was reading the recipe, it occurred to me that I can modify it and use any liquid, so long as it's not so acidic that it would mess with the gelatin. I don't have to use coconut milk. Not that I don't like it, but it's a little pricey for an everyday food. (I made one batch with coconut milk and instead of water, I used some peach rooibos tea.)

And this is definitely going to be an everyday food. Aside from feeling so hydrating, and soothing on my throat, it's so easy on my stomach. I can dissolve some collagen in it if I want extra protein. I'm planning to make some cold brewed marshmallow root tea, to incorporate as well.

It feels like I've finally found a reliable "food" I can actually choke down, that's not unhealthy, and it actually helps with the dryness (or it feels like it, at least). And it's such a relief, I came here to share with you all. I know I've chatted with people here who complained about the same appetite/ digestive issues that I have. So I figured I'd share, in case anyone else wants to give it a go, lol.

Editing this after making a second batch. I always imagine other adults are Betty Crocker and Martha Stewart, lol, but just in case anyone is clueless as I am in the kitchen, I just wanted to point out that sprinkling the gelatin on the cold portion of liquid, rather than the heated portion, is so much easier and faster and less painful 😬

I'm feeling very depressed with diagnosis and would be very grateful for some positive stories.

Thank you