Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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Muscles & Bones
/ Sjogren's Syndrome Support Group

Exercise and flare up

Achybones22
Achybones22
Hello All,
I have ss. I was inspired by one of the entries on exercise--to push yourself a little farther. So I did, swam an extra 10 minutes.

Boy, did I have a flare up the next 2 days. My flare up was not pain in muscles or joints. But it was extreme "fatigue in the head" and dry eyes.

I usually only need eye drops when I wake up in the AM and when I go to sleep in the PM (2x/day). After the extreme exercise, I needed to constantly put eye drops in. I had thought maybe the chlorine in the swimming pool water cause the dryness, but this is a day afterward, so the chlorine should have been out of my eyes by then.

As for the fatigue in the head, it is this heaviness right above my eyes that makes me have to close my eyes and lie down--all day. I may not be sleeping when I close my eyes, but I need to close my eyes for at least an hour at a time. I hate this kind of fatigue that one can't just sleep off! I'm not fatigue anywhere else except my head. Is this the kind of fatigue you guys get??
deleted_user
deleted_user
I get the heavy eyes. It is awful. I wonder if it is related to sinus pressure or inflammation.
I haven't noticed if I flare up after exercise. I will pay closer attention. I am trying to find the right amount of exercise. It does reduce stress for me but I have to find the right balance. I have to use eye drops more than 2x a day. Good luck.
deleted_user
deleted_user
I swim also and wear a mask, not goggles. That way I get very little if any chlorine in my nose or sinuses. I use zaditor eye drops as soon as I shower off. My eyes get a little irritated-really red even tho I use the mask. I do each stroke for 10 minutes, so as not to over-fatigue any muscle group-40 minutes total. I'm always sore from swimming but think it keeps my muscles strong. I have been swimming laps for about 27 years , so it is not a new activity. I always have pain, so never sure what makes it worse. When I'm not busy with yard work, I swim 2x a week. I hope this is of some help. Good luck to you. BJ
Achybones22
Achybones22
Thank you for the comments.
I get this "fatigue in the head" everyday which leaves me only a small window of time to function. Some days are better than others, as in the start of the week when I'm more well rested from the weekend. So frustrating as I don't get much done! But I can't push through it because the heavy eyes are forcing me to shut down!
Tom59
Tom59
The head thing is called brain fog-

Exercise doesn't cause flares you were probably just going to have one anyway. There are precursors like stress or nasty weather changes maybe diet but that usually causes digestive issues. I've found mostly there is no rhyme or reason for them.
Eye problems generally are just normal parts of SjS. Swimming without goggles is a definite no-no. Any pool with chlorine will hurt like crazy. Unless you keep your eyes shut use goggles in lakes too. Salt water same deal.
We are going to hurt no matter what you do so staying stagnant will just make things worse as you age like any sedentary person they have way more issues than active folks. fact-

Go swimming again and by all means keep pushing the envelope. Takes more than one time , try a year or so....I'll guarantee you start having less fatigue as you get back in shape. Less flares too and much shorter.
Achybones22
Achybones22
What is brain fog? What are the other symptoms of brain fog?
nursea49
nursea49
Brain fog for me is not being able to get my words out or not coming out right.I cannot think straight & my mind goes blank.I forget things & the whole thing is frustrating!,
deleted_user
deleted_user
Brain fog for me is also forgetting things, especially where I put something, but also doing something very familiar, but forgetting what to do while doing it, it's scarey. And occassionally mixing up the words I mean to say, same as nursea49, forgetting conversations. I'm trying to make myself go to collage, but I'm not so sure I will be able to handle it... hmmm
Achybones22
Achybones22
Hmmm....Brian fog does not seem to be what I have then. I don't feel any disturbance to my mental acuity. My "fatigue in the head" feels like a physical heaviness in my head and eyes that forces me to close my eyes.
deleted_user
deleted_user
I'm so sorry to hear about the flare up - and I know it well. The only way I've been able to increase exercise is by working out almost every day and increasing by the tiniest of increments - 5 min a day to start for a week - 10 min a day for 2 weeks - 15 min for 2 wks and so on until I got to 25 min. I have to take days off here and there b/c it is just too much, but overall it seems to be working. Every day (almost!) is key for my body but everyone has their own rhythm I suppose. And I know that I can't do more than 25 min for my body right now or I have a bad spell when I can't do anything. I'm always in muscle and joint discomfort but it doesn't seem to vary depending on the amnt of exercise. Frustrating for sure but definitely better when I'm doing it. Keep up the good work!
deleted_user
deleted_user
Most of us take multiple medications for various symptoms. Do you take any benzodiasapines? Example Xanax? There are about 100 types.They cause 'brain fog'. They work wonderfully at first, but the very original problem comes back so you take more. I'm a week into quitting zolpidiem sleeping pill and have lessened my xanax by 50%. Even without much sleep, my head is already better.
Check out Wikepedia for benzodiasapine.
I take 20mg of pilocarpine for dry mouth. It's a great help
deleted_user
deleted_user
Yes, Tom 59 is right. Excerise is extremely important for anybody not just us. You have to build up slowly though if you feel it is bothering you too much. Also, this heavy head and eyes could be from your sinuses. My doc is off on Fridays so right now I am using a regular nasal spray until Monday and I will ask for something like Nasonex. Summer and high humidity can play havoc with your sinuses.

I also go to a chiropractor which has helped me alot. Might want to think about that if your insurance covers it. I actually go once a month just for maintenance. I learned to do that the hard way. However, we are always going to have some level of pain like it or not. Just got to find the best ways to help yourself as everyone is a little different.

Good luck.