worst flare of symptoms - could it have been caused by gym workout?

[lj]

Hi!  I'm still new to this diagnosis (3 months) and I'm trying to figure out what my triggers are.  I've had some relief of fatigue symptoms since Plaquenil and making a change to a different anti-depressant.  I recently felt good enough to try working out at the gym again.  It's been about 4 months since I've been able to do any workouts (fatigue was sooo bad), but I used to go to the gym a lot.  I thought I was taking it slow, but I must have overdone it last Thursday.  By Friday night, I felt like I had the flu.  My muscles were extremely sore and my whole body ached - felt like I'd been hit by a truck!  When I went to bed, I slept so hard it was like being in a coma.  Muscles were sore yesterday, but I was able to function at work.  Then again last night I had the flu-like symptoms to hit before bed.  My body hurt everywhere and I had a bizarre case of chills with no fever.  My body shook uncontrolably and my teeth chattered.  I finally fell asleep but woke up several times needing water - I felt so dry/dehydrated and my head was pounding! It hurt so bad to move!  I'm better this morning, but still sore.  Can someone tell me if you've ever experienced this?  Could all of this be related to my workout?  I was doing so good before that!
Thanks for your help!

[finallyadx]

Welcome to the board - sorry about your diagnosis 3 months ago but glad you found us.  Everyone on the board is great - knowledgeable, kind and supportive.

Unfortunately I am not sure if your workout caused these symptoms, but it certainly sounds like a flare.  What I can offer you is this...when I overdo in any way, shape or form, I feel as you describe for a few days to weeks.  Your workout you are doing may be too much to start with - if you are working out really hard you may want to try to start slowly and work your way up. 

I am sure others on the board who exercise more frequently or with more intensity than I do will be able to offer you some words of advice.

Sending positive thoughts and prayers your way and hoping you feel better soon.

[lj]

Thank you!  I'm glad I found this forum too.  There are no local support groups in my area and I don't know anyone else with SS.   I guess the timing of the flare made me wonder about the workout.  I did push myself a bit, but I felt good at the time.  I guess it makes sense that if I stress my body (even with exercise), it could cause a flare.   The extreme chills actually scared me - I've never felt like that without actually having the flu!  Kinda scared my husband too.  This has been so hard to figure out! 
Thanks for your advice and kind words!

[Joe S.]

lj welcome.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[quietdynamics]

Hello lj...

Yes, you overdid it...ding-dong.
Kind of weird when you can't get enough blanket on quick enough to begin to warm up.
Hint: next time tell hubby to assume the "spoon position" like in winter to warm you. Socks help too. So next time you see those fuzzy ones....grab em...actually get two pairs. Cuter the better.

Keep a diary and jot down this event...and learn to adapt to your situation...sneaky thing...LOL
The diary will help you learn your triggers...pre-flare..so you can avoid them and what your patterns are. This will help your Drs. and your husband as well.

You will learn to pace yourself more gently and build yourself back up.

When I feel really dehydrated sipping chilled Gatorade helps.

[lj]

Lol, Quiet!  I needed to laugh!  Not only is it weird to be so chilled that I couldn't find ENOUGH sweaters/blankets to put on, but since I've been in surgical menopause for 4 years, I'm a living hot flash and almost NEVER get cold... EVER! 

I have just started keeping journal of symptoms and hopefully will be able to prevent flares in the future!

I keep a large bottle of water with me at all times, but the Gatorade is a good idea.  Thx.

Joe - thanks for the info/advice.  I've been adding supplements with Dr. approval and will ask about some of the ones you mentioned. 
I'm currently taking flax/fish oil, Buffered Ascorbic Acid, Probiotics, D3, B-complex injections...in addition to the Plaquenil.

[paisley62]

Hi and welcome to the community,

Physical activity is absolutely my number one trigger for a flare - it is predictable.  And yes, chills and fever, and flu like symptoms are part of a flare.  If I went to a gym and worked out like I used to it would throw me into a horrible flare - sometimes the next day following activity is the worst.

I can also get bad flares for no apparent reason though.  In general, the less physical activity I do, the less I flare though.

I hope you are as well as possible.  Keep asking questions - the people here know quite a lot about Sjogren's.

I hope you have a good Rheumatologist.

paisley

[Sadie2013]

Yes when I would go to the gym, the next day I'd have a low grade fever, joint pain and muscle pain. I will say *just my experience here though* that I have to hydrate with water or Gatorade hours before and leading up to and after my gym work outs. It seems to be the only thing that helps me. Sometimes I even take some Advil prior to working out. I still work out now but I am super careful and go slow. Eventually in time your body gets use to it enough that the flare ups are not as bad.

Hope you feel better soon!

[Tharrell]

Hi lj, welcome to the forum I can relate. After two days of moving my son out from one house back into mine I'm in a major flare. i do martial arts three times a week and do well as long as I remember I'm no healthy spring chicken. You might have to reduce the length and intensity of your work out and raise the level in increments. It would be easier that way to find your max level. Then once in a while go past your max level to see if you can.
Excersise can be very helpful if you can tolerate it.

[lj]

Thanks everyone!  THis is all still so new!  I'm so glad I've found you guys!  I was so much better last night and today I'm almost back to normal.  I'm going to pace myself - realize that what I used to be able to do (even 4 months ago) I can't do right now.  I'll slowly build up.
Therrell, I think you are right about raising level of increments and reducing intensity/length.  I'll just have to experiment with it. 

I have a rheumatologist and she's ok, but not a Sjogren's expert.  I can tell you that if I had asked my original question to her nurse, she would have just referred me to my primary physician or another specialist.  That seems to be what the standard response alway is no matter what my symptoms are. They don't deal with the individual symptoms, they just treat the overall autoimmune issue (prescribe meds like Plaquenil or Prednisone).  It's so frustrating!

Thanks so much for taking time to respond!  It's been a great help to talk to those who can relate! 

[lj]

Something new.... 2 nights ago I developed a skin/tissue infection (cellulitis) - skin red and hot to touch.  yesterday, was given IV antibiotics and given Rx for oral antibiotics for 7 days.  Good new is the infection site is greatly improved today after the IV alone. 

My question is..... have any of you seen connection with autoimmune flare and this kind of infection.   Just seems like too much of a coincidence that all these things have happened back to back like this! 

Thanks!

[KS123]

sorry to say but yes.. i used to be a personal trainer so i am pretty fit and i sometimes like to try and workout like i used to-well whenever i do i sometimes pay for it and other times no--but i can tel you this--i think if you start to feel tired during your workout slow it down and don't push it like a "healthy" person would. It is so hard for me to do this but i have learned.. 

and today i worked out after working out yesterday and i am very fatigued from it..not horrible but just really really sleepy/lethargic..  i need to vacuum but have been putting it off for weeks..

ahh.hope you get to feeling better soon and maybe you just totally overdid it! you will know for the next time!