I am curious who on this board has eyes as there worst symptom. To be honest I read this board and have trouble relating at times since despite my eyes and mouth I am normal. I do have Raynauds which is annoying but livable. Just wondering how many people are like me out there with bad eyes but really nothing else.
Kim
Hi Kim, my eyes are my worst problem. I have others though and am taking Plaquenil and Methotrexate, also Lyrica. Just weaned off prednisone for two years. Lucy
Hi Kim :)
My eyes are annoying but not my worst problem. My worst problem is stuff like sore tendons and fatigue.
Take care - Scottie :)
Hi Kim,
I'm sorry to hear that your eyes are giving you lots of grief, and I can certainly understand. My eyes are not good, but not as bad as yours.
But for me, it's a toss up between the brain fog and the pain of the stiffness as to which one is the worst. There are days I can barely stand the pain, and others I can barely remember what I did a couple of hours prior.
Hang in there and take care -
Patze
My eyes and mouth are nothing compared to the joint pain, body aches, nausea and FATIGUE.
However they are definitely worse this last week or so. For the first time I'm actually noticing pain in eyes and tongue.
I have Reynaud's also but not real bad.
Janna
My symptoms are still fighting for the whats the worst title. they change every week. I have had a run with the eyes though where they just wanted to fall out my head and the pain was unbearable.
This week its arthur. he's taken up residence in my wrists and seems quite comfy there
Pud
My worst symptom changes at times too but I think that its the fatigue by far although the muscle, tendon and joint pain is right behind it lately (thus my reason for going into physical therapy which has been a god send for me). Living in pain every day no matter where, is something many people don't understand.
Kim....I'm sorry that your eyes are so bad right now......sore, tired, and dry eyes can be extremely painful!
I wish I could go back to the days when the eyes were the worst symptom I had but now the the joint pain, and the nerve pain..burning pins and needles(definitely SJS related)..plus this new extreme muscle weakness and fatigue that has come along(but may be something else who knows right now) is way worse. When they get it all figured out and under control I will be a happy camper but right now I am pretty miserable. Unbale to function and trying hard to keep my job. I am really grateful I work for a church and I have such a wonderful Pastor because believe me I would have been a gonner long before now in any other environment.
Hi Kim, I'm more like you. I'm so fortunate that I don't have the continual muscle and joint pains that many members have so in the Sjogrens category (I'm sero-negative), I have mainly dryness issues (they're moderate) with bits and pieces of other symptoms thrown in that do the rounds from time to time. I also have CFS (symptoms other than fatigue,mainly neurological)
Sometimes it's my right eye...it's drier than the left plus I have a pinguecular in it (small benign growth) but generally it's my nasal congestion (allergy and dryness) at night. This can really disrupt my sleep >:( When I go to bed, it's always a decision what I'm going to use...saline spray, Butacort or if I want a semi descent sleep, a squirt of junior strength Otrivin!!!
I count my blessings,
Lesley (New Zealand)
Chronic sinus infections that make my face beet red all the time,, or the uncertainty of where all this will lead
Kim
Its easy to say they rank equally...I used to think my eyes and mouth were the worst...(I go through 30 Vials a day..despite quadra occlusion) yet Fatigue and bodily aches and pains have made me forget mostly about my eyes.
Thinking again I reckon its all the same. meaning overall its tops when all happening together.
All me best
Ron
Yes, the Dr thought my eyes were the worst, but for me it is the fatigue, nausea, IBS and infections. I can live with the dry eye, but not with the fear of how ill a simple cold makes me feel.
This whole Sjogrens thing!!! Dolly.
Kim,
For the first year I was diagnosed my eyes were my worst symptom. Aches, pains, stiffness, fatigue have all taken over of late, but I do think we all fluctuate a great deal. It's like a performance, every symptom needs its time in the limelight, then it bows and allows another one or two their moment of glory! Never say 'only' - there is no aspect of Sjogrens that warrants the description of 'only'. Whichever symptom is giving you grief at the time is just as disabling, annoying and frustrating as any other. Hope your eyes are more comfortable soon.
Beverley
Couldnt have put it better myself beverley
Pud
My eyes and mouth are the least of my problems. Fatique and CNS involvement are the worst for me.
Steve
Kim,
Sometimes my eyes are my worst symptom. They may be "just dry eyes" for a week or two at a time. Then on bad days, they sting and ache in addition to the dryness. Sunlight is painful to them, and I feel like crying. The discomfort in my eyes overpowers joint/muscle pain and makes me even more fatigued. Sometimes it lasts for several days.
Cheryl
My eyes are my worst symptom by far. I do get fatigue, but I also have a two year old to chase, so I don't know if that's the SJS or the toddler. I also have occasional dry mouth. My eyes hurt non-stop.