Just checking in and saying hi. I was diagnosed in 2010, though I had suspected the diagnosis before then. Been reading about SS for years, online postings/articles, just recently though came to the conclusion it was time for me to join a group. Been struggling lately with accepting "my new normal" and feeling isolated so here I am. My son is grown and those people that once called me friend seem to have disappeared (didn't have many to begin with though).
I don't 'work' - though I do attempt to keep up with what housework I can accomplish, and I take care of my 2 cats , 5 birds (cockatiels), 1 bunny rabbit, numerous house plants and my husband... these things and playing games on Facebook keep my alive and occupied. Sjogren's is not my only health issue (as with so many of us) and of course I've taken (and take) several different medications.
I'm open to chat with all of you, hope I can answer some questions, learn to post questions instead of just researching on my own, and maybe along the way make some friends.
it's nice to 'meet' you too! This is a very helpful community, so hopefully you'll get some support. If you look through previous discussions you can find out info, and as you've been diagnosed a while, I'm sure you'll be able to help a lot of us too!
I have had Sjogren's for over 29 years, but was diagnosed about 10 years ago. Up until now, the only medication I was taking was for my eyes. Now I need to take pain medication as well. I want to share a quote from my sister who has Perkinson's. What we have is not life threatening, it is life altering. I know that her quote has helped me through so much, and I hope that it can be of some help to many of you trying to deal with the day to day struggle of of Sjorgens.
Rae
Saw your post, I to have ss but I also have pm, that keeps me hoping more than the Ss does. I guess it could that the meds I take for Myositis helps keep my Ss at bay too. Who knows, the human body is such a mystery, even to the Drs that try to help us. Have a great day
I started out with chronic fatigue syndrome in the 80’s and have gone whole hog now to sjogren’s and lupus. Between them, I’ve had change my lifestyle in that I don’t plan all day activities and allow myself zoning time whenever I need the rest-rarely sleep, just need the quiet time. Autoimmunity diseases run in both sides of my family so I wasn’t surprised about my situation, just took a while to get treated and used to it.I was very depressed at first, but am ok now.Anytime you want to chat, I’m here.
Sarah
You will be amazed about some people's journies. I have three major autoimmune diseases: lupus, autoimmune hepatitis, and Sjogren's. The SS gives me the most grief because it has literally caused dry lungs (bronchiectasis). All three syndromes cause severe pain and I was almost unable to walk. I was about to give up. However, my psychiatrist prescribed effexor which has relieved 90% of the pain. I can walknow. SS takes us many places.
I haven't been diagnosed with PM, but after looking it up I'm wondering if that diagnosis isn't in my future- I'll continue to read about it. My rheumy at the moment is just labeling everything as bursitis or tendonitis: shoulders, bicep area, upper back, upper legs, hips... ? Of course I also have inflammation and pain in other areas too. My rheumy is great, but she tends to wait to diagnose things, and I tend not to complain. May I ask what you take for the PM?
Wendy8091 said:
Rae Saw your post, I to have ss but I also have pm, that keeps me hoping more than the Ss does. I guess it could that the meds I take for Myositis helps keep my Ss at bay too. Who knows, the human body is such a mystery, even to the Drs that try to help us. Have a great day
I have read many journeys and you are correct- I am amazed. I've had one dr. suggest that I have SLE, but my lab numbers didn't agree (it was 1 number less than what was needed for confirmation and I don’t know if they’ve tested again or not). Of course a lot of my lab tests are similar, 1 or 2 numbers under what a lab report states is needed to diagnose. That's good and bad, most everything would just say- hey dr, pay attention to the following a little bit more than you have to pay attention now. Like: kidneys, liver etc... Personally I'd rather have the dr. paying extra attention before something critical actual shows up, then say: well, we didn't think that would happen to you, you didn't have _________according to tests.
I've been diagnosed with too many things (well, too many different things that basically say the same thing: autoimmune, vascular, and so on- I'm fairly certain it's all connected)! Started off with Chronic Myofacial Pain. Years go by with little things being added. Finally we got to some major issues: Sjogrens, Arthritis, Buerger's Raynauds, EDS III, Vasculitis, Hypertension, etc... etc... I'm fairly certain that there's a dart board somewhere in the office and when I say: this hurts- they simply throw the dart and diagnose me with something else.
I'm going to look into effexor (visit rx page) and see if that's something that should be considered instead of some of the meds I'm on. Can't afford a psychiatrist otherwise I'd certainly be seeing one. I'm so glad to hear that you have a medication that is helping you.
Bronchiectasis sounds freaking scary. I googled of course. I so hope this never happens to me, sad to hear that it has happened to you.
I know what you mean about almost giving up- please don't do this. SS does indeed take us many places, of course life takes us to many interesting and wonderful places- here’s to the journey!
(Sorry my response is so long... ramble ramble ramble).
Sorry I missed you in the Main Room chat box- my cat (Sparkle) had gotten very pushy about wanting my attention demanding that I pet her instead of use my fingers on a keyboard of all things. Let me know how the Abalation treatment goes, I have not undergone this.
I attempted to visit your page, noticed a posting about hair and nails- yep, was definitely a problem for me too, getting better in some ways though. I'm still figuring out how this posting adding friends etc... all works. Today has been a good brain day for me, but it's time for me to head off to bed in hopes that meds let me sleep again tonight.
Nana D said:
Hi Rae, sounds like we have several things in common, I too live in isolation, here if you feel like chatting.;-)
What is PM? I have pain in shoulders, arms, calves, upper thigh, and hips too, not sure what it is. Thought maybe bursitis or tendinitis. Curious about PM. Thanks, Drygirl
Rae said:
I haven't been diagnosed with PM, but after looking it up I'm wondering if that diagnosis isn't in my future- I'll continue to read about it. My rheumy at the moment is just labeling everything as bursitis or tendonitis: shoulders, bicep area, upper back, upper legs, hips... ? Of course I also have inflammation and pain in other areas too. My rheumy is great, but she tends to wait to diagnose things, and I tend not to complain. May I ask what you take for the PM?
Wendy8091 said:
Rae Saw your post, I to have ss but I also have pm, that keeps me hoping more than the Ss does. I guess it could that the meds I take for Myositis helps keep my Ss at bay too. Who knows, the human body is such a mystery, even to the Drs that try to help us. Have a great day
Hi Sarah, I too have sjogrens and lupus and suspect I've had them for about a good 25 years but only technically diagnosed in 2012. These diseases are not only life altering but they are life threatening. Both of these have affected most of my organs and I have experienced most of all of the symptons of both. Kidney disease, autoimmune hepatitis (PBC), major GI issues, IBS, allergies, asthma, barretts, neuropathy, fibro, extreme dryness everyhere, discoid and cultaneous lups has severly scarred every part of skin on my body. It just doesn't stop. appointment w new rheumy in July. Nephrologist said breaking thru meds and they are not working, major fast decline in kidney past 2 months, lupus very active.
sarah said:
I started out with chronic fatigue syndrome in the 80's and have gone whole hog now to sjogren's and lupus. Between them, I've had change my lifestyle in that I don't plan all day activities and allow myself zoning time whenever I need the rest-rarely sleep, just need the quiet time. Autoimmunity diseases run in both sides of my family so I wasn't surprised about my situation, just took a while to get treated and used to it.I was very depressed at first, but am ok now.Anytime you want to chat, I'm here. Sarah
PM (which I have not been diagnosed with, but another posted about) is a form of Myositis known as Polymyositis. Myositis, according to www.MDA.org :
"Polymyositis is one of the inflammatory myopathies, a group of muscle diseases that involves inflammation of the muscles or associated tissues, such as the blood vessels that supply the muscles. A myopathy is a muscle disease, and inflammation is response to cell damage.
Another word for inflammatory myopathy is myositis. Themyo root means muscle, and the itis root means inflammation; so a myositis is an inflammatory muscle disease."
You can read more about this at www.myositis.org as well. I actually found this site fairly informative.