If my enthusiasm is a bit much since I joined, please have a mod send me a "shut the hell up for a while" DM and I'll throttle back. But. I found this forum then wifey took a tumble the last night of VBS, sooooo. I've been mother hen, hovering hubby, lifted caregiver for the last few days and i've had a lot of free time. I did a search and the frbro posts had some age on them and I didn't find anything on Sjogren Syndrome . Ms. DB's a long time fibro suffer and I'll claim the sjogrens. (One too many hard landings @Beth Gallagher ?) For those that suffer would you share tips and tricks that may help your day be a little brighter?
Hey DB... what are you talkin' 'bout?? We like newbies; they bring a fresh perspective to the forum. (My fascinating posts in "What's for Supper" just don't cut it when people are bored.) Sorry to hear of your wife's tumble; hope she's feeling better. I have a good friend who has fibro but I'm not familiar with Sjogren's. Several of the SoC members have health issues so we can commiserate. "Getting old is not for sissies," said Bette Davis.
I've been here a little over 2 years. I post a lot. Someone once sent me a message saying "Throttle back," and I responded "I didn't even know it was gone." They left me alone after that. You're absolutely fine. I'm sorry about you and your wife's ills. I've known a few folks (all women) with FM. I don't specifically recall reading about it from anyone here except maybe in passing. I know it's no fun. I guess you know there have been more strides in diagnosis than there have been in treatments. I hope she (and you) find comfort.
@Daniel B Cooper I should probably just keep my fingers still and mouth shut, but every time I read or hear about fibromyalgia given as a diagnosis, I get steamed remembering how doctors gave me that label as a dx and had me on dangerous meds. FM is a syndrome which means it is not a diagnosis but a lack of one. It is given when your doctor sees you have certain symptoms and testing doesn't reaveal another diagnosis based on medical science. The underlying medical reason for your pain is unknown. So you go to your doctor and complain about how bad certain areas hurt in your muscles and soft tissue and they give fibromyalgia as a diagnosis. Myalgia means muscles and fibro means fibers. So the doctor is telling you that your muscles have chronic pain. I knew that before I went in. They don't give you a muscle pain dx because that doesn't sound as sinister as fibromyalgia. FM was a term invented by a chiropractor. It kept people coming back for treatment. Tell someone your muscles hurt in a chronic fashion and it is, "take an ibuprofen or suck it up buttercup." Tell them you have fibromyalgia and it is. "oh you poor dear!" .
Faye, in one paragraph you pretty much nailed it! One especailly frustrating day Cindy told me.........How do you expect your friends to understand when the medical professional doesn't?
So what gives with the tv commercials that claim to finally have a test that yields a definitive diagnosis? I don't recall that they also recommend a treatment path, but the "Now we can test for it" caught my eye.
Tell her I understand completely. I went through years of testing including several painful MS tests. My diagnosis was nerve damage (causing muscle pain) from the Varicella Zoster virus that they refer to as Herepic Neuralgia. It left me with brain nerve (including inner ear) and facial nerve damage that would be hard to deal with if I didn't know the medical science behind it.
Fake advertising John. FM is given as a diagnosis based on symptoms. Chiropractors can give you this "diagnosis" just by doing pressure points. My beef with this purely symptomatic diagnosis is most times an underlying disease can be found and sometimes treated. One might be leaving lupus, rheumatoid arthritis, Lymes, MS, virus, chemical contamination, etc., untreated. The thing is if one is on medicare, tests to look beyond the obvious may not be paid.
I had a friend a while ago with Sjogren's Syndrome. He worked successfully but only on the night shift as the natural light bothered his vision. He was still working nights when I left, and I don't recall his therapy and I don't know how his condition resolved. He wore special glasses all the time, but otherwise he seemed fine.
I was also diagnosed with Sjogren's since I have chronic dry eyes, dry mouth, dry female parts, and a persistent dry cough and I do have another documented autoimmune disease. I use special eye drops in both eyes twice daily and many times have to use the dry mouth pills before bed. My cough has so far been untreatable since some of the meds that might help would affect my glaucoma. Sometimes the honey Ricola Swiss herb blend drops help my cough and get me to sleep. @Daniel B Cooper have you found anything that helps relieve the consistent dry cough?
The dry cough is the one symptom that has escsaped me. The dry eyes and mouth are a real PIA but manageable . Pain and fatigue will suck the life out of a person and we had this under control until the virus hit. It was no joke, both of us with auto immune issues and contracting covid when it was fresh out of the cage! We were / are long haulers, but that's a whole nuther thread.
DB: I was told I had FM back in 1999 when I was searching to get support for what I believed was a sluggish thyroid...long story, but once I got the RIGHT thyroid med in my body so much worked better. Thyroid is so missed and often a person is not given the best med for their support. We're talking HypoT.... I question the FM stuff as I've found it's a basket of stuff gone wrong and docs don't know what to do so give the Fibro dx....I take no drugs and do take a thyroid support since 2002 and otc pain med every 6 hrs with food in stomach... Low dose med as I know all drugs can cause side effects. My major issue is OA and damage from hip replacement. Good Link on Sjogrens and you might do some research on Grape Seed Extract for this issue. https://palaknotes.com/blogs/news/dry-eyes-and-dry-mouth-cure-sjogren-s-syndrome-with-diet
On the Sjogrens, have you looked into homeopathic remedies .. I would think most do not but I've been working with homeopathics for many years for other issues. Look at the recommended remedies and go with a couple for a starter, or if you can see a homeopathic doctor for guidance and advice on this disease.. https://www.rajeevclinic.com/disease/autoimmune-disease-501/sjogren’s-syndrome-511.html