Some days I just don’t want to fight Sjogren’s any more. I don’t have anyone to talk to who understands either. On line chat groups are nice, but not the same as actually talking to another human being. I found out after I was diagnosed that my Mom had the same disease, but she died almost 3 years ago. I can’t even call Mom for support. My husband who is never sick doesn’t understand why I get all weepy some times. He accused me of wallowing in a pity party once. I don’t expect to wake up magically well one day, but I would like one day to go by and not feel sick in some way. It is always some sort of attack on my body. Dry eyes, dry mouth, achy joints or muscles, sore feet, stuffy nose that never ends no matter what I take, a cough that never ends, head aches, poor vision, foggy brain that won’t let me stay focused on my tasks, chills, weakness, dizzy spells. I don’t have a soul to speak to that understands. Not even my doctors. They just want to give me prescription after prescription thinking they have given me some wonder treatment. I have been taking my Plaquenil now for 6 months. I haven’t noticed it doing anything at all for me. My eyes are a dry mess. My corneas are scratched. I had all my lower teeth pulled because of inflammation and bone loss. I will have my upper teeth pulled next summer. Chronic illness isn’t the only indignity Sjogrens dumps on you. You lose all sense of who you are inside. I feel like a decrepit old lady who is losing her mind as well. I hate life and don’t want to fight any more. My MD wanted me to take antidepressants but that isn’t a fix, it is just one more toxin in my body I don’t want. One more thing to fog my brain. He said to get out and work to not sit home and feel sorry for myself. How can I leave the house and go work when I am always sick? When I’m on a job and feel fatigue, is an employer going to let me go sit with my feet up curled under a blanket trying to get warm again? I am always cold, even in the summer. Winter is twice as worse. In not afraid of death. Death would be a welcomed relief. I would be free of this sick body and in my Mom’s arms again. She got her blessed relief. I can’t afford to stay home and take care of my ailing body but going out to work is damn difficult. If I don’t work, how am I supposed to afford all this “wonder” care that doctors think they can give me? I thought getting a diagnosis for why I was feeling ill all the time would help. Until I found out the illness I have has no cure and very little help or care. Why should I fight it? If I had cancer there would be people fighting to help me. With Sjogren’s other are no people fighting to help me and most people just look at me funny like I’m making up something to get sympathy. It isn’t understood or looked at favorably. I’m just a sick person who might give them a cold or worse. Sjogrens isn’t one of the diseases that garners the worlds attention or sympathy. We are alone who fight it!
Hello, I didnt realise that having sjogrens had so many symptoms. You have opened my eyes as to how you feel! I just didnt realise how similar I have felt. My brain keeps telling me I need to rest, just to get away from it all and rest.
It hasnt been long since I was diagnosed. I have been given Hidroxicloroquina sulfate 300 mg x day and I can take paracetamol 1g every 8 hs for the pain, although I haven really found relief from this. What I have started doing on my own is medicating myself with Homeopathy. I have a friend that has a book about it and she looked up reumatoide arthritus as it seem that the sjogrens has caused that and I am getting relief of pain. It has settled in my feet which makes it very painful to walk, but it is slowly getting better. Maybe you could try that rather than more drugs.Do you use artificial tears in your eyes? I have found that that helps a little.
I’m sorry that you’re having such a rough stretch. I don’t know how you’re managing in terms of meds and other management tools. You said that your doctor recommended antidepressants. You might be interested to know that the same inflammation that causes many of your symptoms is also associated with depression.
I would encourage you to speak to your rheumatologist about whether a disease modifying med might be appropriate. Truthfully, an antidepressant might be something worth considering, or at the bare minimum to consider seeking counseling.
This is a chronic illness, but that doesn’t mean that you have to be suffering so greatly.
Hi there, I hear ya! It can be rough and we need to afford health insurance. We need ourselves to be strong and go to work. It something that some people can take for granted but we feel it. It can feel even more so when you feel you don’t have the emotional support from the people closest to you. I am sure there is a number of us here can relate to that. Like Stoney said, counseling and possibly antidepressants might help. It is something I have done to help myself. We have to be strong for ourselves and you always have support here.
I am going to second and third what everyone has said. We are in a catch-22 where it can be hard to stay active when flared up, but being active can hold off flares or make them more manageable. The constant changes are hard but flares don’t last forever. There are times when the symptoms back off some. I try to hold on to that reminder when things are bad.
You do have support here but I hope you also reach out to a professional. It may not seem like it now, but it really can help.
Please keep us posted on how you are doing.
I am so sorry the way you feel like. I do really understand you as I am going through the same. I have been 9 months out of work and all I hear is that is all in my mind. But I pray and listen a lot to christian music and I find peace and hope. Just like you all I get is different meds every time I go to the dr. Try listening to music you like or do something that can help you a little to feel about about your life. I might not be given relief on your pain but I hope I can give you a little hope.
God bless, I’ll be praying for you and all of us who suffer this terrible disease and pain.
How are you feeling?
We are thinking about you.