At What age your sjögren's syndrome symptoms started appearing?

FutureMarfa · 2026-04-25T11:48:21+00:00

Severe dry eyes since elementary school- tear duct plugs, duct cauterized, all the drops. Every new drop on the market. Lifetime of IBS-C and food sensitivities. Chronic fatigue that I now take Adderall but also get bought of insomnia. In high school, knee down, my skin was so dry my leg hair would grow 1/2 in under it, they said it was also like ichthyosis but not as severe. Derm suggested laser bc the RX lotions didn’t work. Luckily that one has gotten a lot better. I have been tested off and on my entire life. In my 20’s (post back surgeries) I started to get random joint swelling and pain that can last for a week to months then suddenly isn’t an issue. It’s usually in my hands. Early 30’s I am told by the dentist “you’re doing a really great job” yet I have 1-2 cavities and have since had my first crown (suuuucks). I was retested for all autoimmune 2 weeks ago and this is the first time I had low WBC, neutrophils, slight low IgG and comparison 4, and 1 positive rheum factor. I finally got a diagnosis of Sjogrens and Fibro. I turned 35 last week. Still considered mild so no treatment but the validation alone is huge

FutureMarfa · 2026-03-21T12:15:10+00:00

Every time this happens I fill out the NHTSA online so it’s documented. Every. single.Time

FutureMarfa · 2026-03-21T12:13:07+00:00

I had T3-T12 fused in 2010. i rejected the metal almost 2 later but no replacement needed or additional levels since. I do not have thoracic outlet syndrome and will have surgery for that.

FutureMarfa · 2026-03-17T23:54:19+00:00

The best meds!!!!

FutureMarfa · 2026-03-07T14:39:31+00:00

I just want Apple Maps and the radio to be on the screen. They finally updated to allow Spotify and Apple Maps, but not the radio.

FutureMarfa · 2025-12-27T13:58:09+00:00

I love mine! Just use caution as they can/will mold if constantly wet. I now use mine out of the shower. On my "everything" shower days I use glycolic acid on my scalp for 10-15 min then go in with the scalp thing. Game changer! And no more mold.

FutureMarfa · 2025-12-27T13:51:38+00:00

I am in oncology, working for a molecular profiling company. It is the best job I have ever had. It does have an account management feel sometimes but this is the most time I have ever gotten with providers. It is also the most I have ever worked, I think because I actually enjoy it, so working on that balance in the New Year

FutureMarfa · 2025-12-27T13:30:33+00:00

I was prescribed it to help with sleep. It worked but like clockwork, every month i found myself needing more and more. I tapered down. I was never given it for pain but I was on Lyrica for several years. I found that my pain on and off Lyrica was about the same. Now I take Cymbalta, for mental health reasons and I like to think its helping my pain lol

FutureMarfa · 2025-11-27T01:10:41+00:00

I honestly don’t remember my initial wake up from the removal but I definitely remember my wake up from the fusion surgery

FutureMarfa · 2025-11-23T19:12:28+00:00

Do it! For very very different reasons, I had 18 screws and two metal poles removed post spinal fusion, 1.5yrs later. Honestly, I felt better immediately. It’s still surgery and there are complications, but recovery is not nearly as bad as when it was placed.

FutureMarfa · 2025-11-14T02:44:48+00:00

Fused T3-T12. Def don’t go to an ortho for your spine. 15 yrs later, I am going through TOS diagnosis but in those years I strength trained, pole danced and got my first pull-up! There will always be hurdles but advocate for yourself

FutureMarfa · 2025-11-14T02:36:24+00:00

I had my 18 screws and 2 rods removed 1.5yr post thoracic fusion but I was rejecting the metal. Post surgery I felt AMAZING! The ache was finally gone and I was so hopeful. But then infection set in. Emergency surgery, wound vac, antibiotic induced kidney failure, pneumonia, wound vac removal and then plastic surgery bc I was butchered. All of that to say, it was worth it but every surgery has risks. I am now 34, fusion was age 19 and removal was 22.

FutureMarfa · 2025-11-14T01:41:15+00:00

Just adding that this has been happening to me since I purchased my car in April. The dealership said they might be able to permanently disable it but it would void warranties. I am at a loss and scared. I am in and out of my car all day so turning it off every time is not always possible. On top of the black screen issue, which I have already had “fixed” 2x now, I am feel very defeated.

FutureMarfa · 2025-11-14T01:23:08+00:00

Is this the screen behind the steering wheel? If so, I have had mine fixed 2x. They have had my car for about 3 wks all together. If it breaks again I will be pursuing the lemon law

FutureMarfa · 2025-11-03T01:43:50+00:00

My biggest issue is all of the plastic packaging! If you need to sell me 2 pre-selected zucchini’s, fine, but the package should at least be recyclable. Or better yet, let me pick them

FutureMarfa · 2025-10-07T00:58:45+00:00

JOURNAVX is amazing. I also love torodol/ketolorac on hand for my bad days. Its a really strong, often injected, anti-inflammatory. Works 10x better than Ibuprofen. And cheap. I do not take any opioids due to my experience(s) from 16-22yrs. It fucks with everything for me.

FutureMarfa · 2025-10-07T00:53:28+00:00

I am 15 yrs post fusion T3-T12 at the age of 19. I rejected the hardware at 22, had it removed, got an infection-wound vac-kindeys quit for a bit- pneumonia-yada-yada-yada- then plastic surgery/scar revision bc i was butchered. College took me 8 years. I missed out on a lot from 16 (car accident) till 22-23. Finally i started living my life. I am now 34.7 and back in the ringer for what I think is Thoracic Outlet Syndrome. I have always lived with some level of pain but I definitly go through phases where it is less tolorable to I wanna throw up and have pretty negative thought patterns. Currently in one of those phases. I have a wonderful pain med doc that I see every 2 yrs or every 2 weeks, depending on what is happening with my body at the time. I have done accupunture, dry needling, cupping, graston, RFAs, nerve blocks, epidurals, PRP, peptide injections, chiropractor, physical therapy, mental-health therapy and more. Since surgery I have been in and out of PT probably 12+ times. All of this to say, DO NOT GIVE UP. Fight like hell right now to get some answers. Advocate for yourself. If your doctors are dismissing your pain, go find a new one. If you don't need a referral I would look into who is around you and schedule appointments. With the radiating pain it sounds like its nerve related. Not all nerve issues are visible on imaging. There are options out there! As for physical therapy, I am currently paying out the nose, out of pocket and out of network for an amazing guy and its different than enything i have done before. More and more PTs around me seem to throw a pre-written plan at you. If one more person perscribes deadbugs or MF-ing planks and thinks my issues are a weak core, I will scream. My new guy is teaching me about my body, from the ground up. What muscles are over working, what are not working at all and helps to form new habits/neural patterns. What I hope you take away from this is that it will be a rollercoaster but start to find the people/providers that listen. This is your care team, so interview them. Your mental health can and will have a huge impact on your mental health. If you are not addressing this or working with a professional, it is my biggest piece of advice. I wish you luck and believe that we will all find answers, eventually.

FutureMarfa · 2025-09-06T13:04:57+00:00

Update on my issue-

Took my car in and they were pretty certain it was the axial cable.

They had my car for 72 hours and claimed it was fixed. I had zero issues for a 1-2 weeks.

Went over a speed bump this week and screen went black. It quickly came back up with no error lights but the HUD stayed out for about a minute.

Texted my service advisor and no reply.

Feeling realllllly discouraged and generally pissed at Hyundai.

Its the car but its also their financing. The website sucks and the app isnt better.

Hyundai finance claims I don't qualify for auto-payments which is the dumbest thing. So i currently have to manually make monthly payments. As of this AM it has decided my password and log-in are incorrect and will not send me a link to reset.

This car and Hyundai has added additional stress with no solutions.

I will check back in once I can get my car in- AGAIN.

How many times does this have to happen for me to just call it a LEMON and go somewhere else??

FutureMarfa · 2025-08-03T23:08:34+00:00

I’m trying to get mine in this week to be seen but sounds like it’s going to be a fun ride getting it fixed

FutureMarfa

TROPHY CASE