Hi I have been diagnosed with Sjogren's and I feel a little scared. I'm 53. I'm very uncomfortable. I've had the dry mouth, dry skin and aches and pains for years. I always thought it was menopause. Starting this year around January, my dry mouth became almost unbearable and my eyes got infected and red, and my pain just increased, especially in my back. I also have constipation and stomach pains and I have kidney damage.
The doctors think I might also have Lupus or some other autoimmune disease. In one way, I am relieved, because I have felt so bad for years, but in another I'm terrified. I don't know what the future holds, and so far, none of the doctors seem too concerned and have given me only minimal help. They act like it's no big deal, but my whole life has changed and I can't do anything.
Anyone else with this problem, and what do you do? I used to work out all the time, 5 days a week, now I am lucky if I can walk my dog with the pain I have every day. My mouth is dry as a desert and I cough and feel like something is stuck in my throat all the time.
Bless your heart. I know exactly how you feel, but don't be scared. There is a lot of treatment out there for us. If you are not happy with your current DR, please find another one. I too have kidney damage, but so far they have it under control. Are you on anything right now? Your DR will help you with the aches and pains, fatigue (which *****!) and the other stuff. You will also become very good friends with a naste little pill called steriods. No one likes to take them, but they save our lives. I have dry mouth ( like a desert), dry eyes, and swollen salivary glands. I had to quit working last year, and I am now navigating through the terrible world of SSD. I finally had to hire an attorney, but she seems to be doing a lot for me. I just went back to work, just 10 hours a week, this last week. I am exhausted and I don't know if I can continue, but we need the money. My husband doesn't want me working, but he has to pick up the slack and work two jobs.....I can't watch him do that anymore.
Just hang in there, this site has wonderful support on it. If you want to talk some more you can send me a message.
Good Morning!!! When I was dx with ME-CFS, I was just as scared. The future looked so bleak and hopeless knowing there's no cure for it, the best I could hope for was remission which never came.
I've decided then, my illness is not goign to define me and I will do my damndest to overcome my fear and occasional blues. I had to make myself adapt to new way of thinking and not allow my illness to eat me whole.
It has been a tough fight, but hold on to your spirit, you must. Please know that you never have to deal with it alone......you have lots friends here willing and ready to support your whenever you need a lift.
Pam.....if you are applying for SDI,. it will defeat the purspose if you go back to work ever for only 10 hours. One of the preliminary requirements for qualifying is 'total and complete unresolved disability that keeps you from earning a gainful living'. Please check with your atty. on this.
You have a loving husband......you will make him feel a whole lot relief knowing you're not trying to tough it out with your health, if he is anything like my husband.
Please hang in there, both of you as I'm hanging in there with you. You're both welcomed to message me whenver you need a friendly ear.
When my previous employer called and begged for me to go back to work, I called my attorney....they advised me that I could work up to 930.00 per month without hurting my case. If I can't stay with it I have an even better chance because it showed I tried and failed. The key word is gainful employment. I hope they did not steer me wrong....I have been in this for over a year now. My attorney just filed and OTR for me an hopefully I will hear something very soon, without a hearing.
Boy, have you come to the right place!! The people here are so caring and supportive...I haven't been Dx'd yet, going to the Endo next Wednesday, but, I can sympathize with you soooo much...I too have the Sahara in my mouth, wake up with my tongue stuck to the roof of my mouth! And the aches and pains...I'm right there with you and you & I are the same age!! Please know that you are not alone and that you HAVE a Dx and are hopefully on your way to feeling lots better!!! I am hoping for the same...hang in there and come back often and let us all know how you're doing and what medications are or are not working for you...just by sharing your story you can become a valuable member of our MH family...Welcome! ;)
Thank you all so much! I am going to a new rheumatologist on Monday, and I'm looking forward to possibly getting more help. The only thing I take now are muscle relaxants (sometimes) and a sleeping pill. But neither of these does a thing for the dry mouth or eyes. My tongue and the roof of my mouth bother me the most. Today a choked on my salad (with lots of low-fat dressing so I can get it down).
The only positive thing I can think of is that I lost 3 lbs. because I just can't eat as much and that's good because I need to lose about 40 lbs.
I really don't want to take steroids. The last thing I need is to gain more weight. Bad for my high blood pressure and cholesterol, too. There must be something else?
I have been using Biotene mouthwash and it helps dry mouth, it also helps if you have sores in there. My tongue gets it the worst. Try it, it is a little expensive but worth it. I know you hate the steriods, believe me I do to, but they work. I woke up yesterday with my glands swollen again. I just finished huge round of prednisone 2 weeks ago. I have been on them since November of last year. I hate to call the dr, because is going to put me back on them. I have gained 22 lbs, on an already ample frame. Before I got really sick in Apr. of 2007 with AIP I had lost 84 lbs with Weight Watchers. At this rate I will have it all back on. I understand where you are coming from. Just hang in there, and come here for support.
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