Anyone else have Myositis? Discouraged

[littleone]

Has anyone else been dx w Myositis? Dr called yest to tell me I show specific positive antibodies.  It would explain my muscle fatigue.  I know many of us have coexisting clusters of AI disease and bc we are fierce and resilient we adapt. 

But for some reason I'm feeling SO discouraged ab this one.    or perhaps the stress just aggregates???

Love to know if anyone has it?

Chin up, right!?!?

Littleone

[shea]

I too was diagnosed with Myositis, simply from presentation.  She never mentioned bloodwork markers for it.  For a long time I've had weakness/fatigue in my arms.  I can barely fold a load of laundry without having to take a break.

[littleone]

Thank you, Shea. I'm sorry.

Yes, there's a specific antibody panel. I was having trouble holding my ph up to text.  Crazy. But the treatments are the same.  Methotrexate. Imuran. Etc. have u improved w treatment?

Feel well and thx.   

[jazzlover]

Been tested for Lyme disease and its coinfections?

[littleone]

I have only been tested for Lyme. I will request the others. My mom has had a few of them. Good call. Thx.

[finallyadx]

Hoping you can get to the bottom of this and find some answers and some relief.
Sending positive thoughts your way.

[Cassi307]

I was also treated for myositis last year. I could barely comb my hair or get dressed. Walking across the room was problematic. I started a course of prednisone and finished up after four months. It helps at the time and I was feeling pretty good. But after I stopped the prednisone my difficulty with mobility returned. I have to discuss this with my doctor when I see her next month.

I understand that it's discouraging. Talk to your doctor about what's going on and talk about a treatment plan. With the right treatment things should improve. Ask her about physical therapy to help you with your muscles.

Sending support your way.

[LucyD]

I am so sorry Littleone. I hope they can help you with the myositis. It is hard to adjust to more unwelcome health news.
Keeping you in my thoughts and prayers.
LucyD

[SjoGirl]

Yep I have bouts of it off and on, particularly if I am coming off of a cold or other illness or if it's very hot. I do try to track my water intake as I sometimes think it's a bit of dehydration (I have a hard time telling when I'm thirsty anymore).

Frustrating because I can't exercise like I used to. Miss yoga and would like to strengthen my upper body more, though my rheumy says I'm plenty strong.

Sorry that you have it to.

[daisymae]

I haven't been diagnosed with it but I seem to have the symptoms of weakness, although not as bad as most.  It started after I had a horrible but very short term viral infection last spring. It seems to come and go with stress and flares, although it can come out of the blue too.

I just started physio today to help strengthen the muscles. If my appointment was yesterday, I couldn't have done much of anything as my weakness was so bad I could hardly walk or stand. It seems to affect my thighs the most.

Having yet another diagnosis is the pits, Littleone.  I'm sorry you have to adapt to yet another Sjogren's "gift"!

[jazzlover]

Get Lyme and coinfection testing through Igenex lab. Go to Lymenet.org for help.

[susie]

Hello, yes I also have myositis. I was just confirmed dx today of sjogrens. In fact I asked my rheumy do I still have myositis, he laughed and said yes, I was just hoping, lol. but I have a handful of autoimmune diseases along with sfn/pn so I know sometimes when they tell you that you have one more thing going on it is a bit over whelming, but then I think we get use to the idea and move on with our lifes. I just wish sometimes that others could understand how we feel, one disease is bad enough but then add a couple more on with different symptoms and it sure is a lot of fun. NOT

[Gingersnap]

So sorry you are having to deal with this!

I haven't been diagnosed with it but I think I have it too. My muscles are my biggest issue for almost the past year. My muscles feel very weak and fatigued and I can't do anything that involves holding my arms over my head and it really hard to even lift my arms against any pressure when my palms are facing the floor. Often I get terrible bouts of muscle pain and stiffness in my neck, shoulders, upper arms and thighs and the muscles will become hot to the touch and even turn pink during those times. It can be totally debilitating and it totally sucks. My rheum keeps saying he will order a muscle panel but I always get my labs in the mail and it's not on there. Next time I'm not leaving the office until verifying that he's ordered the panel. I have to get answers soon as it's so hard just living like this.

[littleone]

Thank you for the support, guys. Cassie, that's exactly how I feel during parts of the day. But it ebbs/flows.

Susie, can I ask what you are being treated w? Is it helping? I also have PN.
Geeze, these guys love to hangout together, huh?

Gingersnap, insist on that panel! I'm frustrated but at least happy I'm not going crazy. 

Hope everyone is having the healthiest day possible. 

[1722Mich]

I have the symptoms too but all the blood work is negative. The docs all ssy it is purely peripheral neuropathy related.Of all the ways Sjogrens has affected me this has been the bitterest pill to swallow. I too find that certain things seem to make it worse but then there are days it seems to flare up for no other reason than to make life just a little bit harder.    Having everyone's support & comiseration is priceless! It is what makes it bearable for me.