Sjogren's without the fatigue?

[paulc182]

I know there's a set of people who deal with the sicca symptoms(dry eyes dry mouth) exclusively, and probably test positive ANA or antibodies. But does anyone know someone with those symptoms and maybe more(skin, neuropathy, joint/muscle pain), but DOESN'T have the debilitating fatigue or any combination of symptoms debilitating enough to really impact their life? I'm curious.

[warmwaters]

From what I've read of medical research, that is true (that there are people without fatigue).  I do think that people may experience symptoms, but until it's disrupting their lives they don't press for a diagnosis. And for people where it's not disrupting their lives, they don't end up spending much time on support boards, because they are off doing all the normal things people do.

For example, when I was in my 40s my eyes were much drier, and I started drinking a lot more water. I mentioned this to my eye doctor and my primary care guy, respectively. My eye doctor said dry eyes were just part of getting older, and my primary doctor tested me for diabetes (as thirst can be a symptom of that). When I didn't show any positive tests for diabetes, he sort of said, "don't know, but if the water helps, just do that".  With hindsight, these were probably early symptoms, but who knows?

[Maria3667]

Hi Paul,

Well I think most of us Sjoggies experience some form of debilitation, but most cope thanks to medication, acceptance and careful planning. I had severe fatigue but now manage due to thyroid hormones and a handful of supplements/meds. I bike, walk and go about my daily activities much as a 'normal' person would. Maybe I have more pain than they do, but coming to terms with it also means scheduling according to my capabilities...

Good luck!

Maria

[SunshineDaydream]

The only time I have debilitating fatigue is when I'm in a flare, which luckily is very rare. Dry eyes have the most impact on my lifestyle and extent of ability to work.

[Pete0211]

Right now, I seem to only be affected by the dryness - mouth, sinuses, eyes, skin, all at various levels of dry at any given time.

Aside from my first 10 days of heck, where I wasn't eating or sleeping, I've not experienced any fatigue that I'd attribute in general to Sjogren's. I haven't had any joint pains, well, aside from joint pains that I've had for ages (aka, my knees when running, so now I've just been walking really really fast) or any other miscellaneous pains that I'd attribute to Sjogren's.

[Judie P]

I do not have the debilitating fatigue most of the time.  When I do, my legs get heavy and I feel like I am walking through water.  My muscles begin to tighten up and really hurt.  I have been diagnosed with Primary SJS for over two years now but had it much longer.

[GgcJap]

My troubles only started 3 months ago, but I have only dryness and had a rash that would randomly pop up in places on my body, but the plaquenil seems to have fixed that. I did have a sharp shoulder pain the other day but that was the first so I'm not sure what it's related to, hopefully I don't get anymore. I'm blood, lip biopsy negative though. I do tire quicker than I used to(I think) but it's. Or debilitating or even annoying really. But like everything else that can all change in a flash.

GgcJap

[Jenny]

I rarely have fatigue. My main symptoms are joint pain, dry eyes and dry mouth.

[Wal]

I have mild fatigue and have had two flares  of joint pain (which was in the same 4 weeks last year). M just dry...mouth nose and eyes but mostly my eyes. They are the most bothersome.

[Judie P]

Thought I would drop another note today.  I had a lot of mental and physical rushing around yesterday at work.  We had a last minute party to go to afterwards.  From rushing around and doing a lot of physical activity Friday through Tuesday, I am starting to get my fatigue again.  This is how I feel:  I am sitting here in a total brain fog and feeling like I don't WANT to move or think, but I know I can.  I am like wired-tired.  My nose is very dry and I feel warm, yet my temperature is fine.  Hope this helps.

[MAT51]

 I started with RA like symptoms six years ago - no fatigue and little visible swelling - my doctor thought I had post viral arthritis until my sed rate came back at 70 and my RF positive - then he referred me straight to rheumatology who eventually diagnosed me with seronegative RA. I still didn't get the brain fog or fatigue others spoke of but one day I read about Sjogrens and knew immediately that it was my primary disease rather than RA. I'd been dry since infancy and used eye gel  even in my teens.

Now I'm rediagnosed with pSJS and the fatigue has hit like an iron rod! It's like walking through cold water a lot of the time. I think my Sjogren's is quite advanced and shows more in my peripheral nervous system and joints and tendons and as fatigue than it does in sicca symptoms. Or maybe I'm so used to the sicca that it's no more than a nuisance although I use drops hourly.

Looking back the Sicca came long before the RA like pain or neuropathy.  Even as a kid I was unusually dry and autoimmune-ish. Fatigue is relatively new but then again my Hypothyroidism accounts for some of it I'm sure.