New to Forum...Sjogrens and Muscle Soreness

[Adaashl]

Hi all,

32/F. Long time lurker but first time posting. I've been diagnosed with Sjogrens as well as an immune deficiency. I notice that when I try to do healthy good things for my body such as exercise it makes me feel really bad. I'll walk the dog for a few miles and when I'm done I have muscle soreness all over as well as a flare of my symptoms of dry eye and terrible fatigue.

Does anyone else have problems with sore, tight muscles all over after moderate exercise? I feel like I've been hit by a bus and I'm feeling really, really discouraged.

I should note that my rheumy has noticed slightly elevated ck levels for my muscles (300-500 range) but doesn't seem too concerned at this point. My father also had these elevations. I'm seeing Dr. Vivino at Penn and on Plaquenil. Thanks.

[CureSjogrensNow]

You have a great doctor.

[SjoGirl]

Yes, muscles seem not to recover after use the same way that they do for other people. I am fine if I exercise, take a hot shower, then relax, but even with that by a few hours later or the next day I experience more muscle soreness than seems normal.

I chalk it up to SjS being a connective tissue disease, meaning it attacks my body were muscle and bone meet. Seems a likely leap, though I'm not a doc or health expert, that muscles might not recover like those of other folks.

[AnneNeville]

This whole experience is eyeopening. I consider myself to be a reasonably fit person, and I build muscle quickly, but I've always gone through cycles of exhaustion and it can take a long time to get my endurance back up. Interesting to consider that these cycles may be part of flares rather than a failure of willpower (which I always assumed) and laziness.

Right now I'm having one of those low periods. Arms ache from carrying my groceries home. Not too long ago I was dancing for 10+ hours per week, or running regularly, etc.

Guess I will try to be kinder to myself for having low periods and taking time to rebuild my strength.

[trc1962]

I also notice the muscle soreness after exertion, something I never felt before all of this autoimmune stuff and it is extremely frustrating. I think a massage every week or so would help and I am going to check if my insurance will cover it. I am hoping we can find a med that can put the autoimmune stuff in the background. Imuran was a godsend and for many years I was pretty much normal, unfortunately it caused liver issues and I had to stop it. Wishing you well tonight!

[Sharon]

I get the exact same thing- I flare with any exercise, even the slightest.
Whatever muscles I use will ache- sometimes for days afterwards, I'll get horribly fatigued, feel ill, and my eye dryness will worsen.

[irish]

Muscle soreness can be from any of the autoimmune diseases. I learned the hard way that muscle aches can also be from increased TSH. I was really suffering from intense muscle issues in back and hip and had asked for a script for a walker with a seat. I thought it was from the Sjogrens and that I was doomed. Was due for my TSH blood work a few weeks later and it was 14+++ and I was so surprised. Had increase in my levothyroxin and in 2-3 weeks all my bad pain disappeared. Always be sure to have thyroid checked on regular basis.

The other thing that blew my mind with all this muscle and tendon pain that I had the past 1 1/2 years was that it seemed to disappear when I had my IV iron. The pain is still there off and on, but I am not as incapacitated as I was. God Bless my great neurologist who after seeing me in Feb and checking my hemg, etc. said. Enough of this already. You are going to get IV iron and you will feel better. I thought she was a little crazy---but she was not. Many years of low ferritin and hemg and didn't respond well to oral iron was resulting in lowered oxygenation of my muscles and my brain. My brain fog is improved, Weakness and fatigue is improved, blurry eyes are better, bad balance and dizziness is improved. I was getting so I could hardly walk and going to the doctor was getting really hard.I could go on and on. All of these symptoms could be blamed on my myasthenia, sjogrens, hashimotos and my right labyrinthectomy. No longer will I complain about having so many specialists. It takes a lot of docs to pick out ailments in people with autoimmune disease. Many eyes are better than just a couple. Just for your information. Irish

[AnneNeville]

I'm gathering from my reading today that tapering off Prednisone can also cause fatigue, soreness, and even joint pain... Makes it hard to tell if I'm getting better!

[irish]

Yes, Tapering off prednisone causes the symptoms of inflammation to rear its ugly head again. Sometimes the symptoms we have that caused the doctor to put us on prednisone in the first place can be much less or they can still be miserable.

I am having a terrible time getting off of my prednisone and getting back to my dose of 10 mgm prednisone every other day. This has been going on for quite some time. I have to add that every doctor has a different way method for tapering off of prednisone. Some doctors do it quite fast and others do it very slowly. I have tried it both ways.

Generally, if the symptoms show up when tapering it is felt that going a little slower on the taper helps. Such as going from tapering a mgm every 4 weeks every 6 weeks. There are many ways to do it. Maybe talking this over with your doctor will help you come up with a method. Also, if you are having so many issues with the symptom it might help to ask the doctor to put you on methotrexate or cellcept to see if this will help to slow the autoimmune attack on the body. Good luck. Irish

[AnneNeville]

I will be seeing my doctor on Monday. The fatigue this week has been really, really dreadful.