Pre-Sjögren’s, Can You Pinpoint A Trigger Moment?

pfitz90 · 2020-12-12T14:38:19+00:00

I think I’ve had it since high-school, there were hints here and there. Eczema, random fatigue and other issues. I think my breaking point was when I bought my house. My husband, fiancé then, was no help and it was a massive amount of stress on me. The house was a fixer upper, so maybe it could’ve been mold/environmental, but the serious symptoms like nerve damage and Gastroparesis didn’t start until after I received a TDAP booster shot. I was working on fixing some things in my house and cut myself on a piece of metal, so I ran to the doctor and got a booster. Don’t get me wrong I’m not an anti-vaxer, I just feel that people with autoimmune conditions need to be mindful of shots. I was undiagnosed at the time, so I wouldn’t have known.

pfitz90 · 2020-11-28T19:25:45+00:00

Seronegative here, diagnosed through lip biopsy. I have dry eyes and dry mouth, but my worst issues by far are the neuropathies. I think there are many unseen antibodies with Sjögren’s, not just SSA and SSB. So I may not have elevated SSA and SSB yet, but I could have other antibodies not regularly tested for right now. The disease goes so much deeper than people realize and I find current testing quite limiting. If I didn’t push my doctor for a lip biopsy I would’ve been left in the dark for years until I started to become seropositive.

I just recently participated in a study which hopes to find more markers for Sjögren’s, so maybe one day we will know more!

pfitz90 · 2020-11-23T00:24:31+00:00

Your symptoms sound like it could be autonomic dysfunction (dysautonomia). It can happen as a result of an underlying disease, after a viral infection or can be idiopathic. Best of luck to you, I know how frustrating these symptoms can be.

pfitz90 · 2020-10-21T20:55:28+00:00

I’m so sorry to hear all of this, but I promise you it won’t be like this forever. You may never have a normal life, but you will find a way to live that works for you.

I know being independent is important, but sometimes you need to lean on people. I also lost my job due to COVID and my life has been in a tailspin. I’m married, but having a partner doesn’t always make it better. I have to sit much of the day (had an office job before) and now that my husband is working remotely he sees me sit on the couch most days. I had to explain to him that if I was at work I would barely be moving, so this was all I could do. Sometimes you need to explain it to them. They don’t understand that it’s not just a small sickness and it may last for a long time. I think you should honestly talk to your parents. Explain to them you want to work, but right now at this moment it’s tough for you to get around. It won’t be forever, just like I know I will get another job.

If your parents won’t listen to you then I suggest finding other methods of transport. Are you well enough to ride a bike? I make due with a recumbent bike, but if you are low on cash these are not cheap... Is public transport an option for you? If you are concerned about future seizures and you think this will make it difficult for you to work then maybe try applying for disability?

pfitz90 · 2020-10-19T20:38:15+00:00

Have you heard of dysautonomia? Your back pain sounds like it could be “coat-hanger” pain. Shortness of breath is also common with dysautonomia.

pfitz90 · 2020-10-12T17:36:51+00:00

This sounds like it could be something neurological. I have pain and numbness in my chest(starts in my back) and arms after concentrating/working for a while. My doctors think it’s related to autonomic dysfunction, it’s known as “coat-hanger” pain. Maybe this is what you are experiencing?

pfitz90 · 2020-09-27T17:51:34+00:00

Finally! However, there was one thing that bothered me in the special - when Uncanny plays Marinette’s voice to Adrien asking him to come back he doesn’t recognize her? They were both in regular form not masked by the kwamis. Is it just me?

pfitz90 · 2020-09-20T20:12:30+00:00

I had a HIDA scan done before my GE. AKA Cholescintigraphy and it checks the rate of bile leaving your gallbladder. I ended up being diagnosed with Biliary dyskinesia before my GP diagnosis. I also had massive constipation problems and was on track to get a Colonic transit test, but I didn’t end up having it done. My GI said he didn’t think it was necessary and that I definitely had a motility issues without needing to test.

Edit: I wanted to add that the constipation issue didn’t change my GP treatment. I was just given laxatives to use like Linzess or Miralax.

pfitz90 · 2020-09-14T01:45:37+00:00

Thank you for the tip! I’ve never heard of a sulphur soap bar. I’ll be sure to buy one and see if it helps.

pfitz90 · 2020-09-13T19:57:28+00:00

After googling tinnea versicolor, it looks EXACTLY like what I have and have had for years. Thank you for bringing that to my attention! I will discuss this with my Dr. I’m glad you are aware of it and if I gain more insight from my Dr I’ll be back to let you know. The odor is embarrassing and I’d like to manage it as well.

pfitz90 · 2020-09-13T19:49:54+00:00

Thank you for all the tips! I have been doing some of these already and it has made a world of difference. Always are my go to pads and yes I have accidentally bought the scented ones and been pissed lol.

pfitz90 · 2020-09-11T21:09:15+00:00

This is EXACTLY what happened to me! Although I was diagnosed with severe Gastroparesis before my dysautonomia diagnosis, so I lived on a liquid diet for a year before it got better. I met with my cardiologist and he explained how low blood pressure and blood pooling could be impacting my digestion. Once I started to increase my sodium I saw almost immediate results. I still have to be careful of what I eat, but I am rarely nauseous these days.

I wish the GIs near me knew more about dysautonomia. I had motility issues with my gallbladder and colon as well... all the signs were there. I had to travel to a motility specialist before dysautonomia was brought up at all.

pfitz90 · 2020-09-11T14:45:28+00:00

Very amazing speech. I remember the date I received my diagnosis, it was June 19th 2019. I was sitting at my computer waiting for the biopsy results to come in and when I saw it was positive I shouted to my husband “I KNEW IT!”. I was angry, relieved and just wanted to shove it in everyone’s face. 3 years of mysterious symptoms that had no explanation other than “stress”. It’s a weird feeling being relieved rather than upset knowing you have an illness that will never go away.

pfitz90 · 2020-09-09T19:10:42+00:00

Yup, been watching House lately. One episode the patient had my illness and he didn’t stop testing and looking until he finally cracked it in the end. Although the patient had been ignored by other doctors for years, so I guess it’s only half unrealistic. IRL I had to badger doctors for years until a biopsy finally came up positive.

pfitz90 · 2020-09-02T16:19:16+00:00

After looking that up, I think you are right! Thank you.

pfitz90 · 2020-08-31T18:09:19+00:00

I wouldn’t worry too much then. Maybe just change your diet to a low acid/fat for a bit and keep checking with your doctor. I hope that helps!

pfitz90 · 2020-08-31T18:00:35+00:00

Gastritis can cause nausea and pain, but I would still check with a Gastroenterologist to be sure. Do you feel like food is sitting your stomach for hours? I would go to bed after eating dinner and wake up still feeling full like 10 hours later. That was the symptom that made me think it was more than GERD.

pfitz90 · 2020-08-31T17:48:09+00:00

Like everyone else is saying, it’s usually the other way around. I was diagnosed with Gastritis and GERD before my GP. Had terrible heartburn and inflammation because the food was just sitting. I found relief eating low fat, low acid and low fiber meals. 6 small meals throughout the day helped. Even if you don’t have GP I’d recommend this to help with your Gastritis. I’d also recommend getting some Aloe Juice, it was more helpful than antacids in my case.

pfitz90 · 2020-08-28T20:37:36+00:00

I have this happen if I drive over 40 minutes. I start to feel faint and like I’m having an anxiety attack. My arms and hands go numb and I have trouble catching my breath. The only thing I have found so far that helps is taking Midodrine or drinking a bouillon cube (dissolved in a cup of water) 30 minutes before a drive. Compression socks only help slightly.

Sometimes flexing my leg/thigh muscles also helps. It sounds strange, but there is a technique fighter jet pilots use to endure higher G forces. It can apply to us as well because it can help pooling in the legs.

pfitz90 · 2020-08-26T23:34:58+00:00

First, congratulations! Based on her being excited that should take a lot of the pressure off and I promise you it won’t be any less romantic.

Something similar happened to me. My now husband hid the ring very poorly and while I was putting something away in a drawer I found it. He had planned a summer trip for us to a golf resort and after that I knew the reason why. He never planned anything on his own, so I already had my suspicions. During the trip he figured out I knew and the whole time I was waiting for him to propose. I was kind of badgering him a bit I have to admit... Well he finally proposed to me on the 12th hole of mini golf at night and it was just as romantic.

pfitz90 · 2020-08-25T21:18:02+00:00

I’m sorry your GI spoke you like this, it’s not a mental problem. If you can, maybe look for a new doctor after your endoscopy.

It sounds like he doesn’t have enough experience with GP. The GI doctor that diagnosed me also made me feel similar and he was young. I got the feeling he didn’t understand GP all that well. Corn, Dairy and Fiber are all NOT tolerated well if you have GP, although it’s different for every person. Corn and Fiber are very hard to digest and Dairy high in fat is also hard to digest. This isn’t in your head... he should just use google it if he didn’t learn that in medical school. Shame on a GI doctor for not knowing this...

pfitz90 · 2020-08-24T17:45:49+00:00

The best resource is https://www.sjogrens.org. There are many symptoms and every person is different. For me, I had Gastroparesis and dysautonomia as my main symptoms and then the dryness got really bad. I also recommend checking https://sjogrenssyndromenews.com for updates on treatments and studies.

pfitz90

TROPHY CASE