Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
I was diagnosed almost 2 years ago and have recently noticed new symptoms. Do they ever stop? Have they always been here but unnoticed because I have so many other things going on? I noticed that I have muscle spasms in the rear, left side of my head. I believe that it is only when I am lying down, but with this memory lost I can't remember how long it has happened. I also hear a knocking sound when I am speaking. A few times I have asked my daughter if she hears the knocking but of course she doesn't. I didn't think much about it until the other night when I thought about my sister's anerursym recently. I don't have a headache, but these 2 things are now concerning me and I will bring it up to my neurologist when I go in for my IVIG, which I feel is a waste of time, but then I am feeling that way about everything these days. I am under pressure to see a mental health therapist or whatever they call them these days. I am being told by my rheumy, my mother and my daughter that I need to talk to someone. I cry about everything in my life, which I have no control of at all and they use this as a reason for my need to talk with someone. They don't get it that I am tired. I hurt everywhere, every second of the day and night. I take so many pills that I can't always remember what I take and when I take them. I can't dress myself completely and most days don't want to dress. I am not comfortable in clothing or shoes. Nothing looks decent on me becaue my stomach is hugh and it has nothing to do with eating, something that I don't do. In fact today I actually ate. It wasn't a true meal, but I ate. I no longer can drive. I have no life outside these four walls. I can't attend the free concerts on the waterfront because I can't wall through the crowds. I can't sit for long periods of time or in the hot sun. I can't plan for today or the next day because I never know what this pain will allow me to do. So what will me speaking with a therapist do for me? I call on my Lord to get me thru my days and nights and to heal my pain. He is the healer and He will dettermine what I need. Another copay for a specialist as well as for the meds that will probably be ordered does not help me.
As far as the tears and being stuck in the house, I can understand that completely. Living with a chronic disease is difficult. I so miss so many activities. I find myself missing out on lots of stuff because it is just too hard. I do find replacing them with other activities helps but there is lots of time I am just alone. I know you are sick of pills but I wonder if it is time to consider an anti-depressant. I have heard that they can also help with chronic pain too. That would be a double bonus. It is very hard to feel happy when you hurt all the time. Have you thought about going to a pain center? I remember I had an employee years ago with RA. She was going to a pain center to learn how to live with the constant pain. She found it very helpful.
And I know what you mean about the tummy. My tummy is huge. I was hoping going off the prednisone would help but so far, it hasn't moved any smaller. I try to dress cute but clothes aren't made for huge tummies. There is just no way to hide it. I have been trying to make peace with my physique. I am trying avoid negative self talk and dress the best I can for my own self. The hardest part from me is judgment from strangers that assume I'm just fat. They don't know I am fighting for my life.
Hang in there Brenda. You know you can vent to us. We know and we understand.
As for being pressured to speak with someone, don't be afraid to do so. Maybe there is someone at your church in whom you can confide, or a trusted friend, or a health professional. At my former church, one of the pastors was a licensed counselor. And there was no fee. Sometimes we just need someone to LISTEN to us, without getting bored, disgusted, or thinking that we're exaggerating. So don't look at it as seeing a "mental health therapist." Think of it as finding someone with a "listening ear," because sometimes we just need to feel that we're being heard by someone non-judgmental.
Chronic pain can get anyone down and discouraged. And the sense of "no control" is really difficult for those of us who were accustomed to being independent go-getters, which I suspect you have always been. Part of the problem is the sense that we can't change our situation. But, remember, the Lord turned around many impossible situations in the Bible. And, He can turn things around for you, too. As you said, "HE is the healer." We all love you here, Brenda. And I know there are answers for you.
The Lord is humbling us to make us strong. I am at a point where I am trying to figure out where to go from here. I know that I am getting this test because I do know how to pass it. You know how to pass it too!
Remember when Jesus was in the storm with the disciples in the boat on the Sea of Galilee? Jesus was sleeping while the storm was raging. The disciples were scared. Remember the words, "Oh ye of little faith?" Well, Jesus created the storm and then He went up to the deck and calmed the storm. The storms are created, controlled and calmed by The Lord. We must have the faith. The Lord always works things out for our good. He gives us opportunities to have faith to exercise for our eternal rewards. Claim your promises in the filling of the Spirit. I John 1:9. Study more promises to build your faith. Enjoy the storm and the calm. Let The Lord provide the solutions when things look impossible. Turn your situation over to Him.
It is good to see a therapist. DM is a rough disease and it does effect the brain. I have abnormal electrical signals in my brain thanks to prednisone. Exercise also helps me whenever I feel weepy. I have a stationary bike that I ride which helps.
My stomach is now big too. I think it is the fatty liver thanks to MTX. I wear wrap around skirts and shorts with baggy shirts & belt. I had to discard all my pants & jeans which no longer fit. I went from 98 lbs to 124 lbs. I have small bones. I am a tiny person but my stomach is big for my frame.
Brenda, you are in good company. Keep us posted!