Are you drinking enough water? I know that sounds weird, but I've had Sjogren's for a good while now, and have discovered that anytime I start to experience extreme weakness, drinking multiple glasses of water and sitting down with feet up for a bit really helps. My hunch is that the dehydration we have goes way beyond just eyes and mouth - it's everywhere. The more you can remember to keep drinking, the better off you'll be. Other than that, it's a question of finding out what your new baseline is for doing active things - and it's a bummer, to be sure - but expecting yourself to race around in your old way is not going to work anymore. You have my utmost sympathy - I was very young when I first got sick; barely older than you are, so I know the shock and grief you are feeling. My very best to you.

I hadn't thought about dehydration but it may have merit. I suffer with a fair amount of fatigue. I have bouts of it and figure it's a flare. I do know stress really drains me.

I am also on Plaqunil and Meloxicam . I was on Celebrex for some time and decided to ask if I can go back on Meoxicam.Just starting the change this week. I don't think there's much difference for me. I am still very stiff . I am much older than you and have only been diagnosed about three years. I have a lot of weakess in my hips and legs. It's a strange feeling . I don't have it all the time but it's a little scary when I do. I don't know what the answer is. I don't think these medications do anything for weakness. I drink a lot of water but next time I'm feeling this way, I'll try drinking more.

I too have bad muscle tone & weakness. I've been losing allot of hair lately & it;s really scaring me. I was on Plaquenil but they had me go off of it to see if that was causing the hair loss. I've been off it a mth now & the hair is still falling out. So don't think it's that. Gonna see my thyroid doctor this week. She did up my med about 8 mths ago & I think it might be that; even though she says my levels are in range. I had been on .075 mg of Levothyroxine forever and this was the first time in yrs the dose had been increased. I'm gonna tell her to drop my dose back & see if it helps. Since being off the Plaquenil I now have new symptoms. When I nap I have burning pain in my legs,feet,arms, hands & sometimes my back. I didn't have this before. I did and still have the stinging bee bite pains all over after I do the smallest task...like washing my hair, vacuuming, or just changing the sheets on my bed. I also get the swallow breathing when I exert myself.

Angellady,

I was allergic to Plaquenil with intense itching. My doctor said he did some research and said depending on the individual it could take anywhere from 12 days to a month to totally leave your system. Given a little more time your hair may stop falling out.

I know it took me almost 3 weeks to completely stop itching. So, I hope it will be a positive ending to your Plaquenil ordeal.

I had the same experience. You might ask your doctor about taking DHEA (an androgen). I take a very low dose (5 mg) a day and really feel the difference. When I exercise, my muscles get stronger. Before they just got tired.

It's not by prescription, but it's more than a supplement. So, it's a good thing to ask your doctor about. Muscle wasting is not a good thing.

And make sure your thyroid is ok. The acceptable range some docs use is too wide. I feel best when my TSH is around 1-1.5.

My muscles burn and sting when I have inflammation from fibromyalgia and MCTD. I agree that drinking water might help. I have no idea why! Best wishes.

I hate the burning/stinging pain Raven. My muscles are weak too. Losing muscle mass too. Guess that part comes with aging. I take a nap in the late afternoon & when I wake up my body is burning all over, until I get up & move around. Scary stuff!!!

I also get this and it comes and goes depending on how active my Sjogren's is at any particular point in time. When it was really bad, however, it turned out I wasn't getting enough oxogyen in my body (and that's exactly what it felt like). I doubt this is what your experiencing but if it is really bad and it doesn't go away, you may wish to get this checked.

Plaquenil stays in your system for 50 days.

As for muscle fatigue get to the gym start with whole body weight lifting and a 20 min cycle or aerobics. Use the full circuit training.
Gradually step it up.
I trained in a gym for yrs with Sjogrens. There will be days you feel like a rag and then there will be days when you feel great. I too am much older than you but my symptoms started in my early 30's.
Looking back I recognize it , then , I had no clue what was going on. If you don't push you turn to mush. You'll get stronger and gain stamina and it comes pretty quickly.
Train in the morning if possible this will help even more.

http://www.ehow.com/facts_7579007_dehydration-causes-fatigue.html

Hydration is huge for us. Fatigue comes from poor sleep and eating poorly and lack of exercise also the immune system overworking for us.
At your age you should be working out and staying active you have years to go.....trust me you'll feel better and plenty of SjS patients do marathons its possible. Mind over matter.....