Has anyone found the magic cure for the chronic fatigue? Occuvite helps tremendously with the chronic dry eye and I can deal with the joint pain. The fatigue though is debilitating and leads to depression. No amount of sleep helps. Fortunately, in addition to finding a fabulous primary care physician just recently, also within the last year I also stumbled upon a fantastic dentist. She has been able to help with some of the dental problems this has led to!
I’m Recently diagnosed too, but just remember to put your self first and talk to me or others here. The support makes me feel validated. You are not alone. Also, I’m on prednisone short term and that is helping me a lot.
Hi aa5261,
Yeah, I know exactly what you mean about the horrible fatigue...that was what hit me first. It was the worst symptom. I didn't get dry eyes and dry mouth until much later. The fatigue is what ruined my life. I felt so tired all the time that I was practically bedridden. And the stupid doctor I had at the time wouldn't listen to me. He kept trying to dismiss it as being from "anxiety." I'm too young for this! I'm a 37 year old guy, and I had to take naps all day and I could barely walk down the street! I mean, does that sound normal to anyone?! Then my feet started getting freezing cold all the time and my toenails started turning purple. Then all my joints started hurting. I felt like I was falling apart. All these problems starting hitting me one after another, and I knew something was seriously wrong. I started getting horrible headaches everyday. But the fatigue was the worst. It got so bad that if I left the house, I could only be out for maybe 30 minutes to an hour at the very most, and then I would have to go back home and lay down. I couldn't hang out with my friends anymore or do anything. I mostly just laid down and read or watched tv. It was very depressing. I felt like I was dying.
I finally switched doctors because the one I had just wasn't listening to me. The one I have now is much better. She referred me to a rheumatologist, and he is the one who finally diagnosed me with Sjogren's.
The rheumatologist put me on Plaquenil and that was a HUGE help. It took a little while, but I noticed a major difference with the fatigue. It actually worked faster than I expected. I would say that within about 2 weeks, I started to have a little more energy. Every day, I started getting a little better. I didn't have to take naps anymore. I was able to leave the house and stay out for longer times. I felt so much better that I was able to go places again. I was actually able to have a life.
I was diagnosed in October, and that's when I started taking the Plaquenil. It literally saved my life. I'm not going to say it magically "cured" me...I still get tired sometimes and I have to pace myself and not overdo things. And I still have some other symptoms. But the horrible, totally debilitating fatigue is gone. I am MUCH better than I was a year ago.
So you might want to ask about Plaquenil, if you're not already taking it. I don't know exactly how it works, but I think it's supposed to reduce the effects of inflammation. It's a "disease modifying" medicine. All I know is that it does work. It helps to keep systemic autoimmune diseases under control. As you know, there is no known cure for AI diseases, but Plaquenil can definitely help keep it from getting worse. It can take a little while to notice a difference, so you have to be patient. For some people, it can take up to 6 months to get the full benefit. Although it started to help me pretty fast - within weeks.
Thank you, Gatewaycityca. I've had the chronic dry eyes for over 10 years now, but was only finally "DX'd" about a year ago. The Occuvite helps quite a bit with that. My eyes burn, but the Occuvite helps with the redness quite a bit. This fatigue. Depression from it . . . can't even begin to explain. I just don't do much of anything anymore. I go to work, come home to do my part-time job, then collapse in bed at 9:00.
I'm hoping to see the Rhuemetologist this week; although when I called to schedule today I was informed the doctor reviewed every referral before scheduling. I was a tad irritated. My life have been spiraling downward for four years and when I can see a little light at the end of the tunnel I have to sit and wait? So frustrated. No one in my family understands any of this. Chronic fatigue is so debilitating.
If I don't hear from the Rhuemetolgoist tomorrow, I am going to call my primary and ask for a RX for the Plaquenil. I have done a lot of research on Sjogrens in the last few days and see that it can help. I need help soon. I just sat and cried all afternoon yesterday.
Thanks for understanding!
Hi aa,
I was to start Plaquinil when my latest MRI results came back with substantial increase in joint damage from my primary Psoriatic Arthritis, so my Rheum told me to forget that and had me start Humira. So I personally cannot tell you how it worked for me, as I never started it!
Just know that you should be cleared by a retina specialist before Plaquinil is prescribed.
As for the fatigue, there are a few instances when a Dr will prescribe a med similar to Nuvigil for fatigue, it's worth looking over and asking about.
https://www.google.com/webhp?sourceid=chrome-instant&ion=1&...
Welcome to the group!
Wishing you well,
SK
Here is an interesting article on the subject of Sjogren's fatigue
http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue
When I started drinking ONLY mineral water, my fatigue left. The kind of fatigue that makes your legs and arms weak, etc. I still like to sleep 9-10 hours, but when I'm up now, I don't get fatigue since I switched to only mineral water. The only other things I'll drink are fresh-made juices, rice milk, and maybe a tea (made with mineral water).
Great article!!! Thank you for posting this. Also found the 30+ pages of comments wonderful.
Thinking about sending the article to my son and d-i-l who do not understand why I can't visit or have
them come to me w/ the 3 kids. I use my cancer as an excuse but the real reason is the Sjogrens
which no one outside understands. (Do have a new oncologist who acknowledged my saying the Sjogrens
was worse than the cancer ever was).
SK said:
Here is an interesting article on the subject of Sjogren's fatigue
http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of...
Prednisone is a miracle drug. On a 12 day taper right now and I feel better now with bronchitis, a sinus infection and an asthma flare up than I do on a “normal” day. It’s pitiful when you look forward to being sick so you can feel better. Nothing else has even come close.
Amazing article! Actually cried knowing someone put into words what I’m feeling.
I posted that article a while back, but couldn’t find it in the archives, because I found it so relatable.
Andrea, sorry to know of the big C, that’s certainly a battle you didn’t need!
Holly, hope that pred knocks all of that out of you for good, and you can finally get out from under all of the illness.
Hope we can all get a leg up since the weather is finally heading in the right direction!
been on prednisone many times in past because docs did not know what was causing all my pain and fatigue and told me to use refresh eye drops for the dry eyes and use biotene tooth paste and biotene mouth spray and biotene mouth wash for dry mouth issues. but keeps saying something is wrong with you but we dont think its sjogrens but we dont know what it is. in 2010 they did a eye test, something starting with a s and i made tears then so they dismissed sjogrens. when i go off prednisone several months later pain comes back, so i just put up with pain, now more problems arise, 2013 blood clot in lung, and 2014 blood clots in brain, after seeing neurologist and psychologist i see reumotologist in may, looked him up, he diagnoses and treats 53 different problems, among them is sjogrens, lupus, dry eyes, joint pain. so hopefully we get to bottom of problem. all docs now agree i have either some kind of blood disorder or a auto ammune disorder. one question i have, i have never ever sweat in my life, i can go outside in 90 degree weather and mow a lawn for an hour and get overheated but not one drop of sweat any where not even under my arms, is that a symptom worth talking to reumotologist about?
Thanks for the link. I know I pretty much have all of those. I know that some of my (soon to be former friends) don't understand why I'm not socially more active. I'm either tired from lack of sleep or fatigued period. It's good to know I'm not the only one. It's been rough around here lately.
Andreajd said:
Great article!!! Thank you for posting this. Also found the 30+ pages of comments wonderful.
Thinking about sending the article to my son and d-i-l who do not understand why I can't visit or have
them come to me w/ the 3 kids. I use my cancer as an excuse but the real reason is the Sjogrens
which no one outside understands. (Do have a new oncologist who acknowledged my saying the Sjogrens
was worse than the cancer ever was).
SK said:Here is an interesting article on the subject of Sjogren's fatigue
http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of...
Andreajd:
I completely understand how you feel. I am pretty much isolated from this. I try to stay active with my family, but at times it's difficult / almost impossible. I work two jobs, so it's hard enough to manage both of those. Once I come home I just want to curl up and read a book. Unfortunately, I'm so tired I get through about two pages of my book and fall asleep. I see the rhuemetologist on Tuesday. I am praying he has some answers, even if it just lessens the symptoms in some way.
Stay strong!