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New to this all, trying to manage


#1

Hello, I’m a new member here so I apologize in advance if I did anything wrong in my post! Also, sorry if my post is excessively long… I just, feel so so misunderstood and alone.

I’m almost turning 25 and I’ve been in this sort of flare-up state for 4 month’s now. Before that I’ve been having weird and unexplained symptoms since 14 years old. I’ve also been lactating since I was 18 which is worrisome to me. ( Been tested, my hormones are perfectly fine )

I haven’t had the full diagnosis yet which I know might not be fair but it’s currently being tested with my doctor already giving me a full thumbs up. ( As my mom and grandma have Sjogren’s as well. )

It started 4 month’s ago, I had a really bad vomit after eating some junk in 100+ degrees, stupid mistake, never again. My doctor gave me ranitidine because she thought my esophagus was inflamed. Ranitidine, made everything worse. It gave me continues stomach aches, but also a weird skin pain. After a while I decided to call since the medication was worsening a minor problem and that’s when everything went to sh*t.

She gave me Pantoprazol. That stuff makes me go bonkers. I lost over 33 lbs which I can’t seem to gain back. My stomach aches got even worse, I was ‘food intolerant’ almost. My joints started hurting so bad that I was afraid to move. I had bruises on every joint even though I didn’t bump into anything.
I also had the worst depression and cry episodes on those meds, my psychiatrist didn’t recognize me so started fighting with my doctor… sadly too little too late. I’d gotten so stressed that I developed TMJ during this, still getting used to that as well.

In the meantime also had extreme headaches, which were from a dead front tooth which needed a new root canal. Got that fixed, but might need gum surgery to get a different infection out NEXT to that front tooth.

Just fast forwarding a little, been off those med’s for 2.5 month’s now. Still experiencing joint pain just not as severe. Inflamed salivary glands, dry eye’s and my cornea seems very thin/messed up. My nose is dry but keeps dripping in the back of my throat. My teeth just look super messed up and feel loose compared to a year ago and almost everything I eat hurts. I’m dizzy all the time, I can barely think straight, I bump into everything and everyone. I have this weird ‘skin pain’ all over my body, it just starts burning and feels like needle stabbing; especially in my feet, hands and stomach. My skin is dry, eczema that comes and goes on my hands/feet, nails are brittle, suddenly excessive hair growth all over my body. Also stabbing ear pain every day… just it’s so much and I’ve been trying to manage on my own while I’m getting an official diagnosis.

What I’m doing now is eating mostly vegan and gluten free, no nightshades either. I still eat beans though and try to avoid soy. I do indulge when I’m with my family and friends, I might get goat cheese, fries or fish if I can’t make anything else off of the menu. This has decreased my symptoms and made me a sort of functioning human being again :no_mouth:.

Just to end this rant; It feels like everything has changed. I’ve always had these symptoms in the background but it was so so little with small ‘flares’ that when doctors couldn’t find it I’d simply ignore it. Now my entire life and routine has changed. I’m turning 25 in September and I can’t help but cry a little each morning. There is so much I still want to do, but I can barely manage to work or just do other normal tasks.

Side note: I’m doing a lot more then just diet changes, I changed EVERYTHING since nothing was working. From exercise to skincare to clothing.


#2

Hey MA2016,
Welcome to the Ben’s Friends Network. I’m Merl a member of the moderator support team here on the network. My condition is not Sjogren’s related, but I have a brain injury and I have found many of the members here have been very supportive and I hope that find similar supportive people via our network. Many of us with rare conditions also find the management of both our conditions and situations confusing and frustrating, so you most definitely are not alone on that account. We know that some symptoms that the general public find of minimal concern can have a massive impact on us, but the lack of comprehension by the general public to our conditions is huge and we all understand this fact. So you rant as much as you need.

Merl from the Moderator Support Team


#3

That sounds like you’re having a really rough go of it. Dietary changes need time to have an impact of they’re going to. Medication can also take time.

You may also want to see a neurologist. Three skin pain sounds like it could be neuropathy.

You said you’re not diagnosed yet. What’s in the way?


#4

Hey Stoney, thank you for your reply. I’m not on any medication yet cause I want to see how far diet and lifestyle can take me.

Diagnosis during the Summer vacation is tricky. A lot of doctors are on their holiday so they’re only taking emergencies. I’m seeing my rheumatologist again in August, I can’t wait to get thing’s moving from there. I’m also pretty scared for the lip biopsy cause my mom’s lip got paralyzed during her’s; so I’ve been delaying that.


#5

I would ask if the lip biopsy is absolutely necessary for diagnosis and treatment. It’s not 100 percent reliable and can cause numbness.

Some doctors /countries require specific points for diagnosis. Others will make a clinical diagnosis. Not everyone will test positive for the Sjogren’s antibodies.


#6

Hi MA, I am new here too, and so sorry you are struggling so much. I can relate to a lot of your struggles, especially the GI issues and currently find myself going to any lengths necessary to find relief… vegan eating is helping, I take Plaquenil, and I am working on meditation to help anxiety/depression/PTSD. I’m not very good at it yet but every little bit has to help, right? Hang in there, this seems to be a very frustrating and isolating disease but you are far from alone!


#7

I haven’t test positive for Sjogren’s antibodies. I do have a positive ANA though, but that’s it. I am also putting off the lip biopsy.


#8

Not everyone tests positive, especially early on in the course of the disease. But got may also never test positive.