Sjogrens World Forums

Hi, hoping someone can give input to what I am dealing with. For the past few weeks life has been too busy. Im a teacher, Christmas and everything piled on and I just kept pushing. I have felt this weird exhaustion that sets in late in the day, usually after dinner and I feel nauseas, chilled and achy, when I go to bed I feel better and somewhat rejuvenated by morning. I am now on Winter break and it has worsened, I also have a tender area on my spine between my shoulder blades and it feels warm and again the weird nausea, muscle pain and fatigue. I have been awakening at 5 am sometimes, which is frustrating as I can sleep in some. Today I woke up because the sore area on my spine was bugging me. Any ideas?

Just posting to say that I think this has made a difference to my eye dryness.   I am vegan so never eat fish, however several months ago I started taking algal oil, which is rich in Omega 3.   My eyes used to end up red every evening, however they are much better these days.  I still use eye drops (Evolve), and Xailin at night.   However I think the algal oil has made quite a difference.   Just mentioning this in case some of you might not be getting enough Omega 3 in your diet.

I hope you all have a happy and peaceful Christmas.

Has anyone tried it? 

Thanks Linda! I just did my second injection on Friday. No real side effects except for a little upset stomach today however breakfast had more sugar than I normally eat. My rheumy started me on the .06 as well. I'm glad there's been no side effects as I travel on weekends sometimes for work. I appreciate the feedback

Welcome back! Sorry it's because your health has taken a downturn.

I've taken MTX for 20 years, the first year was by oral ingestion, and I had no problem with it, but also didn't have the positive effect we were looking for , so I was switched to injectable, and I've taken 0.6 ml the whole time, with minimal side effects. In fact, probably no side effects, but I sort of got in the habit of allowing myself to feel the fatigue, nausea and mild headache I almost always have, but letting it take over a bit the day after my injection, effectively giving myself a day of rest.

The fatigue is almost impossible to deal with sometimes, and as I said, my way is to allow it for a defined period, and then just trying to push through the rest of the time. I try to keep my overall health optimal; eating well, listening to my body's demands, avoiding all the things we know aren't good for us (smoking, drinking, excessive sugar/fat/additives, ect).

It's taken a while, but I now realize that falling into a nap as I sit watching TV or whatever isn't a failure, it's a necessity. If I can't get all my housework done every morning, it will still be there in the afternoon or the next day. Doing several small jobs is just as effective as doing it all as one big job, just takes longer and is less stressful. When I can, having a helper is a good thing, not a weakness. That also involves realizing that not everyone does chores in the same way and getting used to having things done, just not in "my" way.  And none of these changes are "giving in" they are adapting to altered circumstances.

Hi everyone,


I'm not new to the forum yet it's been awhile since I've been here. 34 years ago I was diagnosed with Primary Sjogrens and Mixed Connective Tissue Disease. I have all of the markers for lupus and RA. Things have been pretty good until this past April. I ended up having a major flare up, couldn't walk, use my hands, hardly anything. My old rheumatologist did barely anything. My family doctor put me on Prednisone, 40 mg and I started getting my mobility back. I saw a new rheumatologist last week and he has put me on methotrexate injections since pills made me sick. I'm taking .6 CC's, 3 mg folic acid and 7.5 mg Prednisone. My question is how do you deal with the fatigue? My job requires travel, usually on a weekend. I took my first injection Friday evening. Any and all suggestions are greatly appreciated!

Deb

Hi, Linda!  Thanks for responding and keeping me updated on the Chat situation.  The problem that I have, which unfortunately is quite common these days for many, is trying to get in to see someone quickly.

I originally went to State Med Urgent Care on a Sunday to have a possible abscess on my chest wall (bottom of breasts by sternum). They prescribed Cefinid, which I could not take because I am allergic to penicillin. My primary care physician prescribed Batrim for me. After five days of taking Bactrim, my abscess was getting larger.

I decided to make an appointment with my primary care physician but he was booked out until November 22.  We decuded to go back to Stat Med Urgent Care that day (Friday).  However, they closed hours earlier for a meeting.  So, my hubby and I headed down to the John Muir Emergency Department to have them look at it.

After waiting in ER for 6 hours, they made an incision and drained the abscess.  They packed it with a cotton wick that I needed to pull out one inch every day. The ER Doc said that if Urgent Care had drained the abscess on the past Sunday, the Bactrim might have had a chance.  So, she gave me another week's worth of Bactrim. Boy, did I bleed for two days!  The first night I bled all over my pajamas and bed sheet.

ER told us to go see John Muir Wound Care in 3 days.  Called Wound Care and they can not see me until tomorrow (Friday, Nov 1).  So, we went back to Urgent Care to have it checked out.  It seems to be doing nicely.  However, the Urgent Care doc decided to pull the rest of the wick out and told me that Bactrim doesn't work on 96% of women.  What?  There were two reasons why the wick was in there.  1) to help keep the incision open so that another abscess does not form; and 2) to keep things draining because I have Sjogren's.

So here I am now.  I will go see John Muir Wound Care tomorrow at 12:45pm.  The incision is still open and seems to be oozing clear fluid with a tinge of blood.  I guess that is a good thing.  We will find out tomorrow.

I agree with you.  My neck surgery healed very nicely.  I think it was because I had in home support services coming to check my blood pressure and wound a couple times a week.  I was also on Vancomycin as an antibiotic. The only time one course of antibiotics did not work was when I got C-diff from the last MRSA abscess I had (years ago).  They gave Bactrim, which did not work, so they put me on Clyndomycin which gave me C-diff. It took 3 months of Vancomycin to clear that up.  I wish I could take Vancomycin for all my surgeries and wounds.  I also wish I could see my primary physician when I need him.  I trust him and he has my back on the healing processes of Sjogren's.

Happy holidays, Linda!
Judie (Sjoggiemama)

My healing process is all over the place! Small lesions, like insect bites and bumps or bruises, seem to take forever to heal, meanwhile something like a surgery I had on my forearm a couple of years ago healed extremely quickly, to the point that the surgeon questioned my dates when he re-examined me. I also find that burns (which I have more than my share of because of chronic clumsiness) not only heal quite quickly, but with little discomfort and minimal scarring. I've rarely had anything progress to needing antibiotics, but when it has happened, one course has worked.

Regarding our Chat evening, sadly, the platform we had been using, KIWI, was, as you know, very undependable, and getting worse! AlienDog, our IT wizard, has been trying to find another one that meets our requirements, is compatible, and fairly easy to use, but so far , no luck. The hosts still sign in, and we try the KIWI connection from time to time, and it occasionally does work, so if you try, and are lucky enough to find it in a cooperative mood, someone will be there!

Sound off any time you want! That's why were here isn't it? to share each others concerns and suppost each other.

The most frightrening time in any disease process, I find, is the period of uncertainty; waiting for final results, clarifying things, meanwhile worrying worst case, hoping for best case, and hopefully preparing for anything in between!

Hi ...... I went to my GP last week because I've had a stomach for a while.
He arranged a speedy blood test, a 'poo kit' from the local hospital and an appointment for an ultra sound that I am waiting for a letter for.
Got the blood test result back. The test was for CA 125. Result - abnormal.
I know what the test is for and I know it's not definitive as it can indicate a number of different things. I just need to switch my imagination off now.
Really hoping the ultrasound appointment comes soon.
Thanks for listening - Scottie.