Feeling lost

Since my first signs of Sjögren’s (swollen glands like a chipmunk storing her food for the winter), I have not had a common cold or flu. Until now. About a week ago I thought it was just my Sjögren’s flaring up, swollen glands, face pain, body pain, fatigue, etc. It’s not unusual for me to have a lot of congestion, every morning as a matter of fact, it’s like I’m always on the verge of coming down with a nasty head cold. I’ve been taking meds which help for the most part, but I’m at a loss with this. Christmas morning it hit me hard, severe congestion, fatigue and body aches. I started taking mucinex daytime and then night to sleep and just when I think I’m feeling better, my face is swollen and the pain is 10x’s worse than normal. Even my pain meds aren’t helping. I can’t sleep, I’ve been drinking hot green tea and been in bed since the grand kids left Christmas afternoon. I finally took time off of work as I have friends coming from California tomorrow who I haven’t seen in almost 3 years and I just want to cry. But I can’t because my face will swell up and hurt more. I’m thinking, am I doing something wrong? Is there a different way I should treat this cold because of my Sjogren’s? I know I’m pretty lucky that I don’t suffer as much as others I’ve read about. So I don’t want to sound like a baby about it, just hoping someone has suggestions.

Merry Christmas Shakey Lady! I’m so… sorry for your painful “cold”. My theory is that your immune is on very high but busy with our “bacteria ongoing battle” I call this my B.O.B.
So most of our viral problems are “somewhat” addressed. This accounts for the ongoing almost sick status. I believe if we can address our raging bacterial ongoing battle (B…O.B.) we could then bring down our painful exhausting inflammation. Hence swollen everything, ongoing flu like symptoms. There is a way!

I am so sorry to hear you are having problems right at the time you want most to feel better. I do not have any real great fixes. The only new thing I have been trying is boiling a pot of water, moving it over to the counter on a potholder. Then I put my head over the pot to breathe in the steam. To make the effect even stronger, I sometimes take an apron and put it over my head when I do this to make a steam tent of sorts.

You're not doing anything "wrong." You're suffering enough. Remember that everyone is different, and don't diminish you're suffering or feeling good.

When the immune system is upside down, so is every other part of the body tissue upside down. When there's an infection with autoimmune disease, viral or bacterial, the rest of the immune system is going double duty, and can cause various sorts of inflammation: joints, skin, eyes, nose, lungs, etc. I caught a cold last October and with my weak lungs (from Sjogren's), ended up with pneumonia and landed in hospital. Hadn't had a cold or the flu for 10 years.

When I have upper respiratory symptoms and sometimes when just my nose is stuffy, I use that "NeilMed" nasal irrigation systemn (from drug store or Costco) and irrigate my nose. You can also do it with a 1/4 teaspoon of salt in one cup of water and snort it and spit it out. This helps me. If your joints hurt put warmth on them--take a hot bath.

If I'm tired, it's useless to push myself. My body just cuts out. I go rest.

Just letting you know some of the stuff I do. Just might help.

You got to hold on.

Hang in there…. one of my docs explained it to me as things that set off the immune system can set SS into a flair making an extreme reaction instead of a normal one. Though it may not be what's happening for you, it kind of sounds like it. I work very hard to stay well (wash hands, be aware of people that come to work sick, etc) because I know how incredibly sick I'm going to be if I don't.

I'm sorry you're hurting so badly with this though. Sounds like you are doing whatever you can. Just be aware that the fluid build up and inflammation can bring about sinus/respiratory/ etc infections. If you don't start getting better, go see a doc. Sending good thoughts.

Dear Shark, just because there are people who are feeling worse than you doesn’t mean that your pain is not significant and hard to deal with! As well as the suggestions above, I would add my favorite “trick”–I can’t stand to do the standard sinus wash so my Dr showed me how to do the same thing with salt water over the counter sprays like “AYR”. Much easier, works just as well for me, and helps with stuffy sinus crap. And I, like the people.who wrote before me, know how it feels and care-- so hang in there girl friend!

Maybe an herbal tea like ginger or peppermint would be better and the little bit of caffeine in green tea may not be helping you rest properly. At least during the evening. Also, try adding some sage and garlic to boiling water and breathing in that steam too. This can offer relief and help fight viruses and bacteria if there is anything bad. Turmeric can be added to ginger tea and a dash of cinnamon to help relieve inflammation too. Just don't do too much of anything, especially if taking other meds without discussing with a medical professional. Help you feel better soon.

It sounds like you are doing the right things, hon. There are other great suggestions here. I use a saline nasal spray for a lot of my nasal infections. If I suspect it's bacterial - usually a really bad taste in my throat, I will swap that for silver colloid nasal spray. I have an echinacea tea that seems really good for me.

The biggest thing is giving yourself permission to rest. If the mind is fighting your body's need to rest, you will just be pushing yourself to get up and do things sooner than you're able to. If your friends are coming to visit, just stay home and visit with them. No need to go all over town making yourself exhausted. If they are good friends, they will understand and will be happy to visit with you at home. I hope you feel better soon.

Thanks everyone for the great suggestions and support. I do tend to push through my fatigue and know it’s not the best thing. I didn’t think about how bad a simple cold could be with SS. It was really bad yesterday but I have been using a cool mist humidifier in my room at night and got some good rest last night. For the first time in several days my face doesn’t hurt. I’m enjoying the visit with our friends. Happy New Year everyone!

I'm glad your face is feeling better and that you got some rest. Happy New Year!