u/Wonderful_Bridge_185

19M with Sjogren's symptoms currently going through the diagnosis process and I'm struggling to find any hope or reason to keep going on with any of this.

These past two and a bit months since my symptoms started have shattered me mentally to the point it's the only thing I can think about. I cannot go a minute without these symptoms looming over my head, I don't get a moment of true relaxation and joy without getting reminded that my body isn't working as it should for some reason.

Before this I was a completely healthy 19 year old, I was more active than most my age id say, I actively strength trained and did other activities like long distance hiking and rock climbing, while eating pretty well. I always assumed my body would cooperate and work, that even as I got older it could be managed with determination and healthy choices. When I tore my AC joint while benching I began to feel a bit depressed, since I was physically unable to do any upper body training for a while, but I knew that eventually it would get better, and I would be back to full strength even if it took a while. This feels different, however, its the first time in my life where I've faced something with so much uncertainty, I'm so used to pushing through challenges because I know they're temporary and that there's light at the end of the tunnel. Whether it was exams or breakups or anything else I'd done it before and knew I could do it again, and at 19, I have ages to build up the life I want and the only thing stopping that from happening was me.

These symptoms work against you every step of the way, just to make every aspect of every moment of your life hell it feels like a biblical punishment to be continuously dry in every part of the body worse still it's not given that much attention by the medical community. I feel like even one of the symptoms of Sjogren's like dry eye is enough to drastically reduce QoL, however when paired with everything else like joint pain fatigue and dry mouth it just becomes overwhelming.

It's something I also don't like to admit but it feels very emasculating to experience these symptoms. I enjoyed being able to push myself physically, and see results which was something so satisfying whether its a better physique or just beating a personal milestone. I know it seems weird but it was a part of my identity and how I viewed myself, now it feels like the person I was is dead.

The majority of people who get this disease, as well as on the support groups are ladies who are twice my age, and no offence to them but it makes me feel like this is a moral failure on my own behalf. I managed to end up with something that statistically just shouldn't happen in this demographic. Maybe if I slept more or didn't spike cortisol over university work and career building this would not have happened but now its too late.

I've met one other guy around my age with this disease on here and he also seems to be struggling with a lot of the same feelings so I know it's not only me and I'm really thankful we met each other but in real life nobody relates, life goes on regardless and doesn't stop for anything.

For me Sjogren's is an ugly aspect of the human experience, its something that had I seen before I'd honestly express sadness that people have to go through it and hope a cure was found, but ultimately assume it couldn't happen to me. I'm still in disbelief that I even have to contend with it, part of me doesn't believe it. I know life isn't fair but something like this was not on the radar at all for me since I've never struggled with anything health related at all bar a few injuries. I remember being so excited for this summer, I had planned to travel around in the sun and explore the countryside with my mates, on top of getting a place on a dream internship I thought I'd finally got a foot onto the career ladder and was so excited. Now I look back and it's been two months of torment both physical and mental.

I apologise if its just a vent post, it's just what I've been going through. I'd be happy to hear if anyone experienced similar, especially if you are young or dealt with this at an age similar. Please feel free to DM if you want to talk or ask anything.

Hi guys, I'm 19M with suspected Sjogren's living in the UK. I was able to get a rheumatology referral from my GP recently but was told the wait could take months. However, I'm willing to go through the private route if it means getting answers faster since my life has been effectively put on hold since symptoms started.

If you are in the UK and had positive experiences with a rheumatologist I'd really appreciate if you could let me know their name. It would be ideal if they are around the Yorkshire/North England region however I am willing to travel anywhere across the UK if the standard of care is good. Thank you for any advice in advance.

I'm 19M and I've been having the symptoms of this disease for two months and I'm becoming increasingly certain that I have this disease and I just cannot cope in any way the mental toll has become too much and I'm in an inconsolable state of panic and grief ever since symptoms started and I'm at my wits end now on what to do.

I have dryness in mouth, eyes, my sweating is abnormal, I get joint pain and shivers and nerve tingling in my extremities. They all added on to one another and I'm worried this isn't even the worst of it. The dry mouth in particular is life ruining because I CANNOT sleep for more than 4-5 hours before being forced awake, I'm using xylimelts, mouth tape, biotene and still nothing can give me a full nights sleep, which I haven't had since symptoms began. Beyond just the Sjogren symptoms this lack of sleep has destroyed me mentally and physically, I have no emotional stability going from somewhat OK to existential spiralling depression within minutes. My libido went from healthy to absolutely non-existent and that's also been something really difficult to cope with.

I can't deal with this, 2 months has made me a shell of myself, a lifetime of this I don't even want to think about. I had everything, a healthy body, I was a star student, I was athletic and life was looking up so much. I always thought that If I put in the work now, be responsible and focus on my future by the time i'm 23 I can have a good job and travel and experience life as any young man should. I break down every time I think of it, my own body betrayed me like this and took everything, I can't see myself finishing university in this state, not even close. I worked so hard and sacrificed so much for the grades and the course I'm on, now it seems useless. I'm probably going to get kicked off my summer internship since i've done fuckall this week i'm not in the right state at all, and everytime I think about my future I just feel dread and see only suffering.

When I first heard of Sjogren's I thought it was bad but I could never have imagined it could be this horrific, I honestly didn't even know the human body could do this to itself outside of t1d. Having researched different autoimmune Sjogren's certainly seems like one of the worst despite not looking like that on paper, at least with t1 or hashimoto's etc there's standardised treatment pathways but this disease gets nothing because people think its only dryness and mostly women get it and they expect women to just firm it for some reason. I spend days thinking about how I got this or what I did wrong, no family history no viral infection I can recall, my testosterone levels were fine and by all means It's rare to a laughable degree in men my age but yet all the symptoms align and I don't know what else it could be.

I apologise for the long post I just wanted to know how people in this reddit could cope with this disease, I'd love for any advice and especially if you were diagnosed at a younger age how you managed to live with this disease since the possibility of losing my best years before I even began is a massive burden. Also ANY advice on sleep hygiene and quality would be greatly appreciated since nothing works well so far :(

I'm 19, and I suspect I may have Sjogren's, for a while now I've had persistent dry mouth, dry eyes, increased fatigue, and intermittent joint pain. I'm still going through the diagnostic process, but it's been incredibly difficult mentally.

When I first started to suspect Sjogren's I was completely overwhelmed by stress to the point that I just could not do anything for two weeks straight. I improved for a while but recently my dry mouth has affected my sleep again and I feel like that's triggered another depressive spiral. I'm worried about my future and I have no idea what to do.

Before these symptoms showed up I was relatively healthy, I didn't eat badly, I exercised regularly (gym, bouldering) and my mental health was in a good state even if I had anxiety at times. I just don't understand how this could happen to me, I never thought that I'd have to deal with the possibility of a chronic illness, especially when I am in uni and only just starting my life as an adult.

Wherever I look online for support, I see that basically everyone with this illness is a woman and over the age of 40. While I obviously sympathise with the struggle and how it affects them, it has just made me more isolated, none of my friends nor family truly seem to grasp my situation, and as a male at 19 I am in the most statistically unlikely subgroup to be dealing with this disease.

Is there anyone here that is/was young and dealt with this disease or something similar? Are there any young men around my age who dealt or are dealing with this? I'd love to hear your experiences and if possible any success stories to give me some hope, and hopefully connect with people who share a similar experience. Even just knowing I'm not all alone and that there is hope would help me a lot.

I'm 19, and I suspect I may have Sjogren's, for a while now I've had persistent dry mouth, dry eyes, increased fatigue, and intermittent joint pain. I'm still going through the diagnostic process, but it's been incredibly difficult mentally.

When I first started to suspect Sjogren's I was completely overwhelmed by stress to the point that I just could not do anything for two weeks straight. I improved for a while but recently my dry mouth has affected my sleep again and I feel like that's triggered another depressive spiral. I'm worried about my future and I have no idea what to do.

Before these symptoms showed up I was relatively healthy, I didn't eat badly, I exercised regularly (gym, bouldering) and my mental health was in a good state even if I had anxiety at times. I just don't understand how this could happen to me, I never thought that I'd have to deal with the possibility of a chronic illness, especially when I am in uni and only just starting my life as an adult.

Wherever I look online for support, I see that basically everyone with this illness is a woman and over the age of 40. While I obviously sympathise with the struggle and how it affects them, it has just made me more isolated, none of my friends nor family truly seem to grasp my situation, and as a male at 19 I am in the most statistically unlikely subgroup to be dealing with this disease.

Is there anyone here that is/was young and dealt with this disease or something similar? Are there any young men around my age who dealt or are dealing with this? I'd love to hear your experiences and if possible any success stories to give me some hope, and hopefully connect with people who share a similar experience. Even just knowing I'm not all alone and that there is hope would help me a lot.

Hi guys, I'm writing here because I may have some symptoms of Sjogren's, namely an acute dry mouth and I suspect some reduced sweating as well. It started 6 days ago while I was trying to sleep but could not, I was constantly peeing and getting up to go to the toilet. Suddenly at around 4:30am my mouth went completely dry and I've been unable to quench that dryness with anything other than chewing gum for the moment, I've tried electrolytes, drinking more water etc but to this day my mouth is extremely dry all throughout the day but especially when I wake up (I use mouth tape so it's probably not caused my mouth breathing). I took a blood test and rules out diabetes but I think it may be Sjogren's and since I've discovered this my mental health has collapsed. I was active going to the gym, climbing and hiking but since the dryness began I haven't left the house, nor have I eaten more than 1000 calories a day. Every day this goes on my mind spirals more and I am feeling a level of depression and panic I have never been close to feeling. Does this sound like it could be Sjogren's, what steps should I take from here?

Hey guys, I don't have a Sjogren's diagnosis but for the past couple days I have been experiencing an intense dry mouth stemming from a lack of saliva production and it's been driving me up the wall. I've found some temporary relief in sugar free chewing gum but too many of those causes laxative effects which I would rather avoid. Does anyone have any recommendations or products which have helped with their dryness?