John Waite
12-20-2000, 07:26 PM
Hi, i'm new to this board. I was interested in what people can tell me or share w/ me about experiences w/ dermatamyositis. My wife was diagnosed w/ it in the last 30 days. She's on 60mg of prednizone a day. She's been on it for 2 weeks and while she's able to get up in the morning (as opposed to 2 weeks ago) she's still very tired. Also are there any sites I can visit that focus on it? Thanks.
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ralphb
12-21-2000, 11:37 AM
John,
I'm sorry to hear about your wife's dx. I hope she is responding well to treatment and is tolerating it well.
I have a website set up that details our experiences with JDMS, the juvenile form of DM. Perhaps you can glean some useful information from it.
http://www.ralphb.net/JDMS/
You can also look into joining the Myositis Association of America. They have many resources for Myositis patients and their families and caregivers, including a newsletter, local support groups, and an annual conference.
http://www.myositis.org/
You can also look into this list of online Myositis support resources. These include chats, mailing lists, and bulletin boards like this one. Please check these out:
http://dmoz.org/Health/Conditions_and_Diseases/Immune_Disorders/Auto-Im mune_Disorders/Myositis/Support/ (http://dmoz.org/Health/Conditions_and_Diseases/Immune_Disorders/Auto-Immune_Disorders/Myositis/Support/)
Good luck, and thanks for posting.
Ralph
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[This message has been edited by ralphb (edited 12-21-2000).]
I'm sorry to hear about your wife's dx. I hope she is responding well to treatment and is tolerating it well.
I have a website set up that details our experiences with JDMS, the juvenile form of DM. Perhaps you can glean some useful information from it.
http://www.ralphb.net/JDMS/
You can also look into joining the Myositis Association of America. They have many resources for Myositis patients and their families and caregivers, including a newsletter, local support groups, and an annual conference.
http://www.myositis.org/
You can also look into this list of online Myositis support resources. These include chats, mailing lists, and bulletin boards like this one. Please check these out:
http://dmoz.org/Health/Conditions_and_Diseases/Immune_Disorders/Auto-Im mune_Disorders/Myositis/Support/ (http://dmoz.org/Health/Conditions_and_Diseases/Immune_Disorders/Auto-Immune_Disorders/Myositis/Support/)
Good luck, and thanks for posting.
Ralph
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[This message has been edited by ralphb (edited 12-21-2000).]
Takbeer
04-19-2004, 01:41 AM
Hello,
I have DM. Have had it for about 17 years(undiagnosed until Sep of 2003)
As far as the fatigue is concerned, I'm under the understanding that this may not go away. The muscle that has been affected will remain affected. Eventually, Physical Therapy might help w/stamina. But everything will feel like a marathon. However, there are certain things she will have to pay attention to. For instance, she should keep herself warm. DM affects involuntary muscles, shivering works those muscles. Therefore, making you tired. Like a work out. And the thing is, she doesn't have to get cold enough to shiver. Shivering is a reaction to the slightest chill.
She will need to rest a lot as well. Another thing that takes getting used to if you've been active.
Since most of my pain is in my back, neck, and shoulders, sitting up, as aposed to standing or laying down, works those muscles. A long car ride wipes me out.
I do hope your wife will go into remission shortly.
She is very fortunate to have someone show interest in, and seek information about this. The more you know, the more you'll be able to understand and help her. Just having someone understand what you are going through is a big help. Help her to think positive. You will have to be patient as well.
Some other sites you might visit:
http://www.myositissupportgroup.org
http://www.mdausa.org/disease/pmdm-d.html
I have DM. Have had it for about 17 years(undiagnosed until Sep of 2003)
As far as the fatigue is concerned, I'm under the understanding that this may not go away. The muscle that has been affected will remain affected. Eventually, Physical Therapy might help w/stamina. But everything will feel like a marathon. However, there are certain things she will have to pay attention to. For instance, she should keep herself warm. DM affects involuntary muscles, shivering works those muscles. Therefore, making you tired. Like a work out. And the thing is, she doesn't have to get cold enough to shiver. Shivering is a reaction to the slightest chill.
She will need to rest a lot as well. Another thing that takes getting used to if you've been active.
Since most of my pain is in my back, neck, and shoulders, sitting up, as aposed to standing or laying down, works those muscles. A long car ride wipes me out.
I do hope your wife will go into remission shortly.
She is very fortunate to have someone show interest in, and seek information about this. The more you know, the more you'll be able to understand and help her. Just having someone understand what you are going through is a big help. Help her to think positive. You will have to be patient as well.
Some other sites you might visit:
http://www.myositissupportgroup.org
http://www.mdausa.org/disease/pmdm-d.html