Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Sjogren's Syndrome AND Fibromyalgia

Dec 17, 2014 10:07 PM

So frustrating. Every day it seems like there is a new or different symptom. So many doctors appointments, so many medications. It's easy to get down and depressed. Please don't give up. I won't ever stop "fighting" these debilitating illnesses. I have learned to accept them but I'm not laying down for them!

Dec 19, 2014 8:26 AM

Good for you! I agree with you, and refuse to give up. Im not asking for sypathy, just giving an example of what my life has been like. In my lifetime I've had 11 surgeries, the last being the worst because its caused a continuation of deteriorating health issues & more diagnosed illnesses. Ive had fibromyalgia over 5 years, and may have Raynaud's & Sjogrens. I've got some tests to go through. I also have pelvic floor dysfunction & pelvic floor congestion, DDD, osteoarthritis, osteopenia, migraines, just to name a few. Recently they diagnosed a genetic defect where my body doesn't metabolize B vitamins, an issue for many illnesses. But the most depressing issues came about 3 weeks ago when I was told I have dementia (unknown cause yet) & motor deficits (multiple balance & strength issues). They're sending me to a psychoneurologist, to check for MS, mini strokes, or early Alzheimer's. I was told to start using a cane or walker, to keep me from falling; I'm 53. Am I depressed? Yes. Do I get frustrated at my own limitations? Absolutely. Do I question why me? No. I say why not me. I'm no better than anyone else, and I don't deserve any special healing over others. Children born with defects learn to deal with their limitations, and remain meek, loving, and gentle. They had no choice. I can only hope my attitude about my medical issues set an example for the grandchildren, on how to handle adversity in their lives. I would recommend others to find something or someone to be your listening ear & support system, who can also lift you up when you feel down. Other than my husband, I spend a lot of time talking to God, reading His words, and listening to Christian music. It helps my body relax, because being tense or in stressful situations causes all my pain to increase.

Dec 19, 2014 8:35 AM

Nice people, nice! Positives are good! I have recently been listening to native flute music and just trying to relax or meditate for 15 mins a day.

Dec 19, 2014 2:01 PM

I too, appreciate the positive thinking. It is so crucial for people like us. The worst is always "well you look like you're better!" I just had yet another lung CT today. Next week, heart ultrasound and stress test, then to the Rheumatologist. Sjogren's has affected my lungs, kidneys, not possibly my heart. Oh and my feet from the Fibromyalgia. Stress is a major player for flare ups so please, let's all keep our stress levels down, learn to smile more (put Vaseline on your front teeth to help you smile..an old cheerleader trick!) I have partials on my top and bottom teeth/gums. Ugh! I'm going to find the Vaseline now..for my teeth! 😁

May 30, 2015 7:40 AM

SjogrensFibrojunkie, I meant to ask you a question about your lungs? How did they know it had affected your lungs, what symptoms or test result?

I've had asthma since 2001 with a sudden status asthmaticus episode. Talk about scared! They thought it was my heart that caused me to collapse and did a heart cath. I'll never forget the shocked reaction of the cardiologist when she saw everything; "There's absolutely nothing wrong with your heart, it's beautifully healthy." Fast forward to now and for the first time ever I had a nodule show up in my left upper lung on a different test (also saw thyroid abnormalities). They did a follow up CT right behind the Myelogram CT. He said we'll do a follow up this year and if no changes we won't need another. That was before my Sjogrens diagnosis. I also have a low ejection fraction of the left side of my heart & a slight valve leakage.

I'd like to know any symptoms you had so I know what to be wary of. I've got bladder issues with minimal protein showing up in urine samples.

Thank you & I Opie you have a blessed weekend! 🙏🌼

Ready to start relieving your pain?

Join Community