Muscle stiffness / rigidity

[Maria3667]

Who else recognizes this? Whenever I stand still for a few minutes, my leg muscles become really painfully rigid and stiff. I always attributed this to drying of the muscle fibers. Is this typically Sjogren's?

What can I do to prevent or cure it? Ibuprofen doesn't do the trick. Tips and suggestions are welcome 

[meirish]

I am wondering if you need to see a neurologist about this. They deal with muscles and it might be that you have something related to sjogrens or another type of neuropathy. I would wonder if there is some treatment that could be done to prevent it from becoming worse or even make it better.

There are so many inflammatory processes that take place with muscles in autoimmune that we often want to assume it is from Sjogrens when, in fact, it may be some other type of autoimmune issue. We just have to be so proactive with our autoimmune diseases to help us maintain as much good health as possible. Good luck. Keep us posted as this may help others to find out what it going on with you. meirish

[jazzlover]

Also consider stealth infections like Lyme disease.

[Maria3667]

@Jazzlover: as a matter of fact Lyme's triggered my Sjogren's over 20 years ago. After being bitten by an infected tick I got treated with antibiotics within 1 week. So officially Lyme's (should be) dead... And it didn't show up in a recent blood test.

@Meirish: neurologist couldn't find anything off. My rheumatologist suggested it could be SLE as my symptoms started at a youngish age. No one mentioned neuropathy.

Either way, there is no effective medication against the extreme dryness (already on pilocarpine, Cevilimine not available in Europe).

Out of desperation I took 1 teaspoon of baking soda diluted in water yesterday. I'll try to keep it up for 2 weeks (if I can stomach it) to see if it will yield any results.

Thank you for bearing with me, I feel very alone in this...

[meirish]

I have to ask what has caused you to take the soda on a daily basis? Is this a doctors suggestion?? Soda can upset the acid base balance in your body and this can affect your organs, etc. If it was me I would want to check with my doctor about this first. Just a suggestion. meirish

[Scottietottie]

Hi 

I can't stand still for long either. I've come to the conclusion that I'm just too heavy for my feet - but yes it makes my legs sore. Seeing a neurologist in October so will see what they have to say.

Take care - Scottie 

[Maria3667]

@Meirish: I take baking soda to stop burning mouth I've been suffering from for so long and the rigidity of my leg muscles. And it seems to work a little!

The idea is to create a more alkaline environment that should ease up acid accumulation in tissues.

According to a scientific study I read baking soda can be beneficial for us and even decreased inflammation markers in the kidneys.

Also some say it can decrease constipation.

Fingers crossed!

My rheumatologist would probably be okay with it; she doesn't know what to prescribe anymore except pilocarpine.

[meirish]

I was just wondering. As long as you have your blood work and electrolytes checked from time to time as they can get screwed up from the soda. Good luck and hope it keeps on working for you. meirish

[Maria3667]

Hi Scottie,

Then I must also be too heavy for my feet, lol? But I'm not really, BMI is 24. And I also feel the leg muscles hurting when I lie down. I've been wrestling with this progressively getting worse problem since the onset of Sjogren's, how about you?

@Meirish: thank you. At next check up at rheumatologist I'll ask for it.

[jazzlover]

Maria .. same here. I doubt you are truly free of Lyme. It stays with us.

Testing is very flawed.

PS .. I find muscle relaxants to help.

[Scottietottie]

Hi Maria 

I've got to the stage that I don't know if it's SjS or just age!  I think some of it is balance. Standing still involves more concentration than moving!

Take care Scottie 

[meirish]

One can have some strange things happen with our muscles that we can attribute to fatigue and age. I would get so tired---at least I always blamed it on tired but eventually learned that it was fatigue due to the MG. Feel like can't stand in line at the store as could fall down from "fatigue". Muscles can feel sore due to lack of innervation of the nerve endings that produce muscle movement or ability to maintain muscle strength.

Sjogrens does have a lot of neurological things that can occur and can be very hard to diagnose. Also, one of the very first symptoms I had with Myasthenia and probably included the Hashimotos, was the poor balance that showed up so often and soon became a very large part of my life. I also developed the proprioceptive disorder that goes with the sjogrens. The inability to know where your body or a body part is in relation to the surroundings. I wold have trouble knowing where to place my feet when stepping off a curb and also walking in the dark became very difficult. We just blame everything on our age. A good neurologist is worth their weight in gold. meirish

One of the most defining proprioceptive disorders I had early on was when I would come home from work at midnight. I would drive into our old garage which didn't have automatic electric lighting. I would shut off the headlights and proceed to try to get out of the car. Only, I could not find the door handle. This went on for probably months and I would have to feel all around for the handle.  This is one of those tasks that our brain has stored in memory and we should be able to do it without any problem.

With the proprioceptive disorder the darkness proved that my brain was not storing this very often used and learned task. After I figured this out I really did understand what a proprioceptive disorder is. I would find that I would have to turn on the headlights so that I could see and find the door handle. Same thing applies to walking down the hall in ones home in total darkness. The body loses its ability to know where it is in relation to surroundings, or literally the world. I would often not even be able to find the wall with my hand in totally darkness. Very weird sensation.