Tuesday, March 8, 2016

Dr. Sarah Schafer: Exercise and Sjogren's

Ohio : WPA Art Program, 1940 found here

Once again, Dr. Sarah Schafer has shared with us her unique perspective as both patient and physician dealing with Sjogren's syndrome. In this article, she addresses the benefits of appropriate exercise on symptoms of Sjogren's syndrome. It's a great reminder to get moving!  

There is much evidence to support that exercise is beneficial in Sjogren’s, some of it indirect (RA studies), inflammation studies, etc.  One study with Sjogren’s patients showed benefit, but there is only one so far that I know about. I can tell you first hand that it helps me immensely.  

The problem with exercise is many of us have flu-like malaise, fatigue and all sorts of pain.   It seems counterintuitive to add to the feeling that you are stressing your body.  Exercise when you have the flu is a bad idea.  But with Sjogren’s, despite the fatigue, it is a good idea, if you don’t overdo. 
Exercise needs to be customized to your needs, and graded  (start small, trial and error).   I have learned to calibrate what I can do  and how long I can go based on an internal sense of energy.  I swim every day, and it does wonders.  I don’t function well  in the evenings without my afternoon rest followed by my swim.   It has to be in water that is not too hot, and I actually need to push hard enough to get my heart rate up.    Swimming works far better for me than walking or other exercise, but I do walk some mornings to get some weight bearing in. 

A fairly recent study has shown that > 50 % of primary Sjogren’s have abnormal heart rate/ bp responses to being upright.  This adds to fatigue.  Exercise helps this problem.  This is due to abnormal autonomic nervous system function.

In extreme forms, this autonomic nervous system dysfunction becomes POTS (Postural Orthostatic Tachycardia Syndrome).  Less extreme forms are noticing fatigue when upright ,  “shopping intolerance”.  I do have POTS.  It became  quite severe starting 6 years ago, staying severe  for several years. It turns out that interval workouts  (don’t try this on your own without consulting your provider! ) make a huge difference in controlling POTS symptoms.   

I started interval training based on studies a few years ago by a cardiologist in Texas, who figured out it was a good therapy to re-set the BP receptors and heart rate.   POTS is actually neurologic problem, not a heart problem, but sometimes cardiologists take an interest.  Others know nothing about it.   BTW, the study author kindly communicated to me by email when I had questions about how to go about this with Sjogren’s and POTs.  

I still have POTs, but greatly reduced symptoms.  This helps me be much more functional, and get through the grocery shopping!   

  It took more than 2 months to build up with my interval training to the point where the exercise started to have a positive benefit with fatigue and POTS symptoms.  Prior to this I was exercising for pain control, but not as vigorously.    I was so dizzy from POTS when upright, that  during those first months of interval training,  swimming was my only option to start pushing harder for a few laps here and there.  Now I push hard for nearly half of my laps.     

  Swimming is perfect for POTS- it is exercise lying down.   The recumbent bike also works for many who cannot tolerate upright exercise.  It bothers my back a bit.     Note that I  exercise 25-35 minutes at the most.  Sometimes only  15 minutes when feeling especially lousy.  Before  Sjogren’s , I would go much longer. 

Other benefits to exercise are so numerous, such as: 

Decreases inflammation in the whole body 
Cardiovascular risk reduction  (we are at increased risk heart disease due to systemic inflammation)
# 1 priority for Alzheimer’s prevention (aerobic exercise)—more protective than those  unproven brain games.  
Bone density benefits
Mood regulation
Mental clarity improvement (great for brain fog) 

And so on…..

I can tell you it is sometimes not easy to get up and “Just do it”.   But I have a habit, and give it no more thought than brushing my teeth.  I almost always  feel better once I get going.  The more strenuous interval training was very hard to start, but the benefits were great.    

I am lucky to live in CA, where I can swim outdoors year round, rain or shine.  Indoor pools are usually too darn warm, which is bad for POTS.  In case you think I am not that sick, I would say 
I am on the severe end of the fatigue spectrum for Sjogren’s.  I use methotrexate, plaquenil and now Rituxian.   I am unable to work due to physical fatigue, pain and frequent migraines.  I need to rest every afternoon because I just “tank” after noon,  but my “up times” are much more functional and higher quality.  

Any more exercise testimonials???

P.S.   NOTE;  Qigong, Tai Chi and Yoga beneficial for the body and brain, but in a different way…   Although be careful, I injured myself  years ago with Yoga due to joint hypermobility.  Now I do a lovely Qigong practice in the mornings.   


Unknown said...

I walk for exercise, and am certainly not able to "push" it, but I can see how it might be possible if I was horizontal. Logistics are a deal breaker right now, but this is something that I intend to work towards. Thank you Julia, and Dr. Schafer for this information.

Marion said...

I am a walker and if weather doesn't allow me to walk outside I do an indoor workout of some sort. I often say I don't go fast and I don't go far, but I go. My dog is an excellent motivator and walking partner. Even if I can accomplish nothing else in a day, exercise gets done.

Sue said...

I enjoy walking outdoors but if the weather is bad I use my treadmill.

Unknown said...

An interesting article, thank you for sharing. I also suffer from joint hypermobility and I think I also have mild POTS too (can it come and go?). I've only recently been diagnosed but have suffered badly with fatigue since I got pregnant about 3 years ago. I'm still able to work part time and be a single mum. I go to the gym once a week to work with a personal trainer and try to do Pilates once a week for core strength (I also have Ankylosing Spondylitis) so feel that this suits all my needs the most. I must say I started exercising about 6 months ago and for the last couple of months my fatigue has been better �� I've also tried eating more healthily with more turmeric and ginger. I hope this improvement in fatigue continues!

Heda said...

Hi Jules, my condolences for your loss and for your Mum's illness. Also apologies for my long silence. I've retired, moved cities and I've walked the Camino. 800 km. The first 200 km nearly killed me but once my Sjogren's bugs got over the shock and realised that their host was not actually going to kill herself they settled down and I was able to make it to Santiago slower than most but in a reasonable physical state. By the time I finished the walk my feet were the best they had been in years, my BP was so good I had to wean myself off the beta blockers, my gut issues were much improved, my mental health was completely turned around, and my aches and pains didn't seem any worse than lots of others doing the walk. I felt normal for the first time in years. Heck I almost felt strong. Since I've been back home I've taken up swimming and gardening and love doing both. Yay for exercise.

Anonymous said...

I've had good success with Pilates.

Sofia said...

Have you heard about Coimbra protocol for autoimmune diseases? It allowed me to exercise again and quit methotrexate and Deflazacort.

Sofia said...

Have you heard about Coimbra protocol for autoimmune diseases? It allowed me to exercise again and quit methotrexate and Deflazacort.

Anonymous said...

I have to tell you that your blog is my bible. Whenever I have a new symptom I check with you first. Thank you so much, you save my senity.

Anonymous said...

I have two great suggestions for those of you with migraines, which have plagued me as well.

1) I cut out dairy and this alone helped immensely! You can easily do a 4-week trial and see if
it helps you

2) I started doing TM (tm.org) which is the best-studied form of meditation and has alot of research backing its benefits. It's easy to learn, and has helped immensely in reducing my stress level, which in turn reduces my Sjogren's symptoms. I highly recommend this!

Good luck to everyone!

Ellen said...

I joined the swim club in Sun City, Hilton Head island. I went to a swim meet in Feb.2019. I swam in 8 events over 2 days. I have not been the same since. I have been in a Sjogren's flair ever since. I didn't know that this was too much. Anyway, I still am in a flare and I am on Prednisone. I keep getting sinus infections, which I see is normal for Sjogren's.