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.
Hi all!
I apologize if this has already been discussed, I didn't see too much when I did I search. I wanted to ask you all if you have any suggestions or experiences that work for you when it comes to energy.
I have a wonderful, full time job that I am very thankful for and proud of. I've only been here a couple months and I have never once felt overwhelmed or stressed. They are very flexible and very understanding, and thankfully I can come and go as I please and the nature of the work is all administrative stuff, so it doesn't require too much physically. However, I do feel tired most of the day like I want to take a nap. I am not doing/taking much of anything to help specifically with energy. I drink coke for the caffeine (not a coffee drinker) but would like to stop drinking it for the obvious health reasons. [I keep telling myself I should have stayed off of it when I couldn't swallow for 4 months and had a feeding tube!]. I don't like tea, although I would like to train myself to like it. I guess I could just force myself to drink tea or coffee in the mornings for my morning drink, but I can't see myself staying too motivated to do that. I want to stop drinking coke but I know the energy drop I will feel to my already low energy will be difficult! Are there particular foods that you eat, supplements you take, etc that help with energy? Taking a walk in the morning or evening? I am not doing much in the way of exercise either, which I would like to also change...I know for healthy people (without DM/PM) exercising in the long run helps with energy, so I don't know if that would help me. We are going on our annual trip to Canada in July and I'll likely be hiking a little bit (don't worry, I've hiked every year since my diagnosis-very thankful and very careful!) so I want to build up my muscles/energy for that as much as I can.
Sorry if this all seems jumbled...just trying to spill all my thoughts so I don't forget anything. I'm just hoping to find something that helps me not be so "i want a nap" at work, 'worthless' when I get home,etc. my husband is very very kind, understanding and patient--will do every house chore without saying a word or me asking, doesn't complain when I go weeks without energy for sex (sorry if TMI), and is constantly asking if there's anything I need or that he can do to help. Last week I was blowdrying my hair and my arms got so tired, without me even saying anything he grabbed my blowdryer out of my hand and held it for me so i could keep brushing while drying and it was much easier. very thankful for him!! but would like to have energy to help him out more/spend quality time with him!! THANKS for all your support
I apologize if this has already been discussed, I didn't see too much when I did I search. I wanted to ask you all if you have any suggestions or experiences that work for you when it comes to energy.
I have a wonderful, full time job that I am very thankful for and proud of. I've only been here a couple months and I have never once felt overwhelmed or stressed. They are very flexible and very understanding, and thankfully I can come and go as I please and the nature of the work is all administrative stuff, so it doesn't require too much physically. However, I do feel tired most of the day like I want to take a nap. I am not doing/taking much of anything to help specifically with energy. I drink coke for the caffeine (not a coffee drinker) but would like to stop drinking it for the obvious health reasons. [I keep telling myself I should have stayed off of it when I couldn't swallow for 4 months and had a feeding tube!]. I don't like tea, although I would like to train myself to like it. I guess I could just force myself to drink tea or coffee in the mornings for my morning drink, but I can't see myself staying too motivated to do that. I want to stop drinking coke but I know the energy drop I will feel to my already low energy will be difficult! Are there particular foods that you eat, supplements you take, etc that help with energy? Taking a walk in the morning or evening? I am not doing much in the way of exercise either, which I would like to also change...I know for healthy people (without DM/PM) exercising in the long run helps with energy, so I don't know if that would help me. We are going on our annual trip to Canada in July and I'll likely be hiking a little bit (don't worry, I've hiked every year since my diagnosis-very thankful and very careful!) so I want to build up my muscles/energy for that as much as I can.
Sorry if this all seems jumbled...just trying to spill all my thoughts so I don't forget anything. I'm just hoping to find something that helps me not be so "i want a nap" at work, 'worthless' when I get home,etc. my husband is very very kind, understanding and patient--will do every house chore without saying a word or me asking, doesn't complain when I go weeks without energy for sex (sorry if TMI), and is constantly asking if there's anything I need or that he can do to help. Last week I was blowdrying my hair and my arms got so tired, without me even saying anything he grabbed my blowdryer out of my hand and held it for me so i could keep brushing while drying and it was much easier. very thankful for him!! but would like to have energy to help him out more/spend quality time with him!! THANKS for all your support
Our disease is well known for effecting the filtering systems of the body too. Lungs, liver, and kidneys have difficulties with the quality of blood in our systems. The heart also is a major issue for many of us with DM/PM. Heart issues will cause big fatigue.
I know Shawna will be able to contribute well to this issue. I know she uses oxygen and this has helped her. I am also thinking about looking into oxygen supplementation for alertness too.
Don't worry about discussing sex. This site IS for discussing DM/PM health issues, and I would never consider this TMI. I am not married. I am glad that I am not married with this DM. I am too dry with all my body parts. I also get female infections thanks to Prednisone. Once every three months, I must see the OBGyn for medication to clear up a yeast or a vaginitis from meds or DM. I am glad you brought up this topic. This disease can effect "down there." I am sure others will have something to share on this issue too.
I drink entirely too much coffee due to being tired. I also lose interest in doing tasks. Drinking some Gatoraid does help to restore some energy for me.
I hope this helps.
I'm single too so I don't know the sex things anymore. I'm really glad to be single because it is all I can do to take care of myself. I think a guy would consider me "lazy". You are blessed to have an understanding husband.