I can so relate. I have been sleeping at the drop of a hat. I too work from home and found myself taking a little nap during a conference call yesterday!! While fatigue is part of this lovely disease, I see you are on Prednisone which is known to give you insomnia. Do you sleep okay at night? If not, I suggest a sleep aid. I was told to take "Simply Sleep" which is an over the counter medication. It is basically Benedryl. It is non-habit forming unlike the prescription items.

As far as the metal mouth, I am so sorry you have an infection. I have not had that one yet but I am going to go ahead and knock on wood because I see to get the weirdest things. As our immune system gets suppressed, our bodies can do strange things. In fact, having an infection can make you more tired too. I hope the antibiotics work quick and you are feeling back to snuff quickly.

Brenda you make me laugh. If ladylikeness is not a word, I think it should become one... let's put it on the list of symptoms for DM/PM...sorry guys you will have to coin your own word... maybe manlilikeness?? I am turning into a different person, with all the things I used to do to make myself 'look good' I find I am no longer interested. I went to get my hair cut and colored today and on the way I decided I didn't want to color it anymore. So I sent my boyfriend a text and said will you still love me if I don't color my hair? His response was perfect... just what I needed to hear. I have had metal mouth too, I think it was a side effect of the MTX shot, it was worse the day after the shot.... it felt like I ate a bowl of pennies! Even water tasted like metal. I wonder if that is an infection? It comes and goes, seems to be much less lately. I hope you enjoy your nap and have a sweet dream.

MaruskaPogo, I have to post my picture soon. My daughter is going to take a new one for me. I am a Black female and about a year ago I cut my hair to a very short afro. I refuse to continue to spend money on my hair that I could use on good meals. I have never been a big eater, but I like good food. Then when I became ill I stop applying make-up. It was becoming too much of a challenge to find a product that I like and again it was money that I could use for good food. I feel that if someone doesn't like the appearance of my unmade up face, which is not ugly, that is their problem. I like me just as I am. I have found that with this illness if I don't laugh I would cry and I refuse to feel sorry for myself.

When I first got out of the hospital I was unable to carry my purse, so I used a small little bag that I could hang on my back and I walk around with my walker. There was a time that I did not think that would ever be me. I was a everyday wearer of at least 3 inch high heels. And I would never have left the house without makeup. I had already started to feel differently about some of these things as I got older and especially after losing my job in 2009. But now I notice even more just how special life is whereas things are not. I also stopped coloring my grey and love my salt and pepper. It is going to be okay.

The antibiotics seems to be helping with the metal mouth. I have to take it for 10 days. I slept great and woke at about 4:30 this morning without morning pain for the first time.

lexisgirl I normally wake up every 2 hrs for a bathroom break. It could be annoying, but I am use to it now and normally fall back to sleep quickly, except for this morning. My last bathroom break was at about 4:30am and I was going to be getting up at 5am anyway so I was okay staying awake. I took that time to have a conversation with God. I have taken sleep aids before, but didn't know if I could take them with all of the RXs that I take. I normally try to take a short nap after work, because I like to be awake when my daughter gets home from work at about midnight, but then on the nights prior to my 4 work days I don't get but a few hours of sleep. I am okay so far with sleep. I am about eat my dinner and then take a nap.

Thank you Brenda! I am already feeling better about my grey roots. I've earned each and every one of them. High heels.... that ended for me years ago, unless of course I have to get really dressed up and I even have some cute flats for that. You are so right, so many other things are more important, like good food and a good sleep and waking up without pain and not having a metallic taste in your mouth. I'm glad your doctors are helping you and your medicine is working. Take good care and yes, post a photo of your smiling face soon!

You sound like a fun person to be around! Hope you'll soon be able to not just eat, but TASTE the good food.

I was once a very serious person, always caring about others, but never really laughed at life and then after mothering 3 sons for a while, God Blessed me with a daughter who continues to allow me to laugh at myself and not take myself so serious. I even think that I am funny. I took a class once a few years ago where I had to write a paper about my life and the instructor who was a psychologist told me that if I didn't not change my life I would have a heart attack. I was a total A personality; always in charge whether I wanted to be or not. I thought about it. Gave up my supervisor position, sold my condo and moved. I now work at a less stress position in the same field and never bring work home (mentally). Life is precious. I have 12 grandchildren and 1 on the way. I need to be here.

As for my metal mouth and yes it felt as if I was licking a metal pipe or some, the antibiotics that my doctor put me on seems to be working. I have 7 more days of treatment. I can even taste some things a little bit.

Ewww. I clearly remember that "bowl full of pennies" or "licking a metal pipe" taste. It made me so nauseated.

The only thing I ever found to help was Biotene mouth rinse. Of course it's only temporary, but you can safely use it anytime you need to. It's technically for dry mouth, which I also have but really helped disguise the metal taste. They also make a spray that I carry in my purse, and a gel which is good to use if your mouth gets dry at night, but I don't know how they work with metal mouth.
~Lucky

I so understand about leaving the stress and professional grooming behind. It takes too much effort and energy these days. As for the purse, I used to carry a very heavy shoulder bag. Now I either use a fanny pack or simply carry a small wallet in one pocket and a cell phone in the other. A few years ago I learned to carry a phone everywhere, in case I fell, got stuck, etc.

I've never had the "metal mouth" except after a dental visit. But I'm so glad that you think the antibiotics are helping you. I will say a prayer that you (and the others) get rid of it completely. Wishing you "happy eating."

I was telling my sister last night that it is a shame that I have to take the cell phn into the bathroom with me. Not that I think I may fall and can't get back up, since my bathroom is so small and has a lot of things that I can grab, but because if my daughter happens to call and I don't pick up on the first ring she panics and thinks that I have fallen and I don't want to worry her. Hope big brother can't see me on the toilet thru the phn..lol.

The other day I wanted my much needed nap and turned the volume down on my phn. I then sat on the phn and when she called I didn't hear it and when I finally did I couldn't figure out where it was. By then she called my son at work and told him to get over and check on me. When I told her that I was sitting on the phn we both laughed and of course Miss Bossy ordered me to turn up the volume. We laughed so hard that I did almost fall. I feel like a child again, but in a good way. I have to laugh at myself.

Enjoyed your story, and it gave me a chuckle. Thanks for sharing.