I 'm a grandmother who was diagnosed with Sjogren's in the middle 1990's. The symptoms were mild and I never paid much attention to it. I used Restasis and Biotene toothpaste but nothing else seemed important enough to continue. I even dumped my rheumatologist and all the blood tests and no treatment. Two years ago I tried Savella and then got an allergic reaction. Following that I started on Lyrica, but now my prescription costs $400.00 and I am in the hole on prescriptions. Now I am having signs of interstitial lung disease. So NOW I am taking notice of what is going on.
I didn't understand that all my symptoms were Sjogren's related - the fatigue, the dry eyes, the sore throats, the constant cough and drinking things, etc., the muscle pain, now called Fibromyalgia, and the loss of breath, hypo-oxemia, the use of oxygen at night and on and off during the day. My learning source came from reading a comprehensive guide to Sjogren's from www.medifocus.com. Now I know it is not all in my head, nor just "getting old" but that it is my personal chronic burden.
What is it that keeps a person pushing forward to understand, to cope, to try to move or live? Sometimes my mood plummets and I just have to go to bed and let my husband take care of me. Somedays I think it is not worth it. What keeps you going on?
Sorry,I didn't mention my name. It is CLRday
I know how you feel. I was diagnosed with sjogrens 9 months ago though looking back the symptoms had been there for at least 3 yrs. I just turned 37 and have been using the same walker you have as I can't stand for more than 5-10 mins. I also have neuropathy in hands/arms and legs, very severe. My kids are 3 & 6 which makes it extremely hard with my limitations thank goodness for their dad. He is a huge help but also gets very overwhelmed doing everything. I get down a lot and feel like a burden. If it weren't for my kids some days I don't want to go on they are the reason I get up and fight this disease everyday. I also have constant fatigue, muscle pain and weakness, joint pain, etc. The only thing that keeps me going is my family. I'm sorry you are going through so much. I wish I could give you more advice just know you are not alone in this.
hi i m new also i under stand what your going through its an awful illness i have the fibromyagia dry every thing fibromyalgia is most painful blisters on eyes my eyes doc said has now gone systemic also have bronchiechasis inflamation of lung pockets causes cough lots of phlem and a feeling of not feeling well i understand what your going through im 65 yrs old didnt expect this in my young age lol but it good how peole adapt dont thingk your getting old your still young at heart i bet keep your pecker up we will all help each orther sending best wishes maggie may
Keep your pecker up is the best recommendation I could get. Special thanks to you!!!
It helps to know that other people with Sjogren's go thru the same thing I do. My husband is fighting Kidney disease so we have to take turns taking care of each other. What with my pending knee replacement I feel bad about requiring more care then he can offer. Our son is coming for a week to take care of my husband while I am in the hospital and rehab. I don't want the operation but our children and my husband are pushing for it. I keep thinking that it won't mean much given all the other symptoms but family prevails.
Sometimes it is just too much to deal with all the symptoms and the rest of life. I suggest HUGS as a way to get thru things. My family is big on hugs.
Welcome to Sjogren syndrome support! I’m sorry that you’re going through such a rough time. Reaching out for support is a great step. How soon is your knee replacement? You’ll want to communicate some of your concerns re. Sjogren’s to the surgeon and medical staff.
Well I flunked Surgery 101 with the knee dr. He said I have to lose AT LEAST 50 lbs before he will operate on me. So now I have that to deal with along with the Sjogren's. I knew I felt too big to "join the party" but I hadn't fully faced that reality until yesterday. I am supposed to swim AND bike for an hour on my recumbent bike EVERY DAY. I can't do much else beyond that. I can't even walk for 10 minutes at this point because of my knee, which is bone-on-bone, and because of degenerative disc disease. I am overwhelmed with this new goal to work on. Yesterday I swam with our grandson for an hour and this am my whole upper back is hurting. Which NSAID to take now?
Learned Reality: Lose the weight now before something else happens to you!!!!!!
CLRday- really sorry to hear that you're not going to be able to have the knee surgery for a while. It is tough to lose weight when you're not able to help things along with exercise- I know! I know they've said that you need to exercise for 2 hours every day, but that sounds an awful lot to suddenly start doing- probably good to work up to it. Swimming should be good in smaller doses! We had a discussion on here recently which Enjoylife started about exercise, and quite a few people have found that pilates can help get you moving- there's lots of videos on youtube so you can start with easy ones. It will help your joints in the long run to lose weight, but easier said than done! Good luck!
Honestly, I m not that good at coping. When my SS flared back in March I got so depressed because I felt like everything I liked to do was gone. Its not though. Its a struggle each and everyday to focus on the things you find important, at least I do. My 4 daughters, 2 granddaughters, focusing on their lives and helping them when I can. My husband and I have gotten closer since my 1st flare up. He is more understanding...I guess I cope. With my faith in God, and I slow down more and enjoy my moments. See before SS I used to think I needed the big moments for them to be special. I've learned little moments are truly the big ones. I look around more, I appreciate a few hours on a good day. I try and find a positive (Its the hardest part) in every situation. I wake up and say TODAY is a good day and I move on from there...