Dermatomyositis is a rare autoimmune connective tissue disorder related to Polymyositis.
|Photosensitive erythroedema||Photosensitive erythroedema on exposed areas of the skin. Skin rash usually present on the face, back of the shoulders, upper chest, hands and joints|
|Muscle weakness||Muscle weakness|
|Palpitations||The sensation of the heart racing, fluttering or pounding strongly in the chest or the carotid arteries|
|Difficulty swallowing||Difficulty swallowing|
|Myalgia||Myalgia is muscle pain|
|Gottron's papules||Small vesicles along the sides of the fingers|
|Alopecia||Hair loss, either localised and concentrated, and/or generalised and diffuse.|
|Renaud's Syndrome||Acute constrictive reaction of blood vessels of the extremities in response to cold, causing hypoxia, ischaemia and utimately gangrene if severe and untreated.|
|Calcinosis/Dystrophic Calcification||Deposits of calcium phosphate with a very thickly paste-like or snow-like texture in the tissues, up to several cm breadth. These may remain inactive, or may ulcerate and be resistant to healing.|
|Investigate All Possible Drug Side Effects||Carefully investigate the possible side-effects of ANY drug you are prescribed. You cannot rely on doctors to adequately inform you. Then any deleterious effects can be assessed for their rate of incidence and weighed against the severity of the symptoms.|
Hello all, I just wanted to post that my DM activity drastically decreased to the point of near remission by going on a vegan diet and detoxing my life. It's a huge topic and lots to discuss, but it was the miracle of my life, and I wanted to share in case you are interested in seeing how it improves your life. Almost 5 years now of feeling great - unfortunately my skin rash only calmed down and the rash is still here, but other than that my health is great. Flexibility and strength is normal. If I were to eat a burger, the next day I would for sure flare up - so indeed the diet is controlling the majority of my disease, or at least activating it. I'd love to answer any questions. I mainly just wanted people to know in case they wanted to try it out. I was at my wits end when I tried going on a whole foods diet. It took a week to notice my disease was practically gone. Wishing you all the best, Deanna
I think the tingling is a DM thing.
7777, I do still get the rough bumps on my knuckles (grottons papules). And sometimes the skin around my fingernails is so sensitive and hurts so bad to the touch,even just typing. I have noticed lately that I have had tingling in my fingers and hands sometimes, just within the last couple of months. So do you think that is a dermatomyositis thing? It doesn't happen all the time, but seems to come out nowhere when it does happen. People look at me really weird when I have gotten really hot because I am so oddly red. I have to fan myself a lot too. It's kind of become my trademark at work. I try to laugh at myself!
Christy, My hands do the get rough bumps and my finger tips split. My hands ache and sometimes they feel ice cold and tingly. The rest of me so far is pretty good. The throat thing is there usually when I get tired. Its my indicater that I need to rest. Heat is horrible, no other words can describe it.
Hi Ria, I am on Immunogobulin, I have been on it for 3 years. I have a infusion nurse come to my house every 3 weeks, it takes 2 days to infuse. It has really helped me. My insurance covers the cost. I highly recommend it. Good luck to you and your mom. Kim
Hi guys.. thanks for thr reply. Its really fustrating because DM is such a rare disease and even doctors are not familiar with it. She was initially diagnosed with allergies and had allergy patch test done. And few months she was on antihistamine and steroids. By the time she has gotten worst the doctor was already looking into DM. But it was to late already she cannot move anymore. She is on her 3rd day of Immunoglobulin she seems responding to it. Last sunday we almost lost her but now we are able to talk to her. But she's still in the hospital and she is tube feeding (NGT). Well I do hope she's going to get better. I really appreciate knowing you guys it gives me hope that my mom will get better. I do hope both of you will have worry free days. I hope you could update me in case you find some miracle drug in your country or any suggestions to make my mom feel comfortable.
Hi Ria, I was dx'ed with dm last year after many years of health problems, last year the problems got a lot worse. I have been on prednisone and methotrexate. I am starting to finally get better. I have never had the immunoglobulin treatment but have heard very good things about it. You can also check out another website for DM. It is myositissupportgroup.org. I'm pretty sure that's the correct address. There are a lot of people who have had the IVIG on that website and share their experiences with this situation. I pray your mother gets well, and you are holding up as well.
Hello Everyone, Anyone living in the Maryland, DC area I would just like to invite you to the Myositis Awareness Walk this Saturday, October 9th at Centennial Park in Columbia Maryland. The walk will begin at 8am. Hope to see you there.
Hi Rachel, I have only had the skin problems so far, no serious muscle involvement yet. I don't want the muscle issues either. My skin was getting better and has recently started to get red again. My fingernails have hurt very badly also. I've also had issues with breathing, a pulmonologist told me it could be from the prednisone and the weight gain from the prednisone. I have been in a flare since May 2008. It has gotten about 80 to 90% better, but gets worse when I become very active. I get exhausted very easy but can manage. I thought I may be able to get off all my meds this year but that was wishful thinking. I was off work for 9 months in 2008 through into 2009. I have been back to work for almost a year now and am managing. I tend to sleep a lot. My advice is to listen to your body and take a break when you need to. Good luck and God bless!
I am the newest DM here. I don't have the muscle thing yet and never hope to have it, But I do have such sun sensitivity that I can not really go out side during the day. It feel like the sun is eating up my nose.ears, throat and chest. Its hard to breathe, not quite a shortness of breath maybe a burning heavyness. My finger tips are so sore that it hurts to type. finding a support group has been hard since practically none exist. I hope to find support here.
Thank you! I've heard of Eucerin and Cetaphil--I've used both at various points several years ago. I'll try them again and see how they work. Yeah, I totally understand being annoyed with the redness. One of my cheeks was fine, while the other had an omnipresent flushed look and rough-looking skin. Both the color and texture have evened out since I started taking Plaquenil. Now I'm focusing on finding a moisturizer that'll help the dry skin without irritating the DM-affected cheek. Thanks again, Christy, and I wish you good luck as well!
Hi Laura! I have had luck with fluocinonide 0.05% cream for the red rashes on my body. I use it when my skin starts feeling raw, about every 3 to 4 weeks. For my face I have not had a lot of luck. I have used desonide cream, but it didn't really help, plus it can cause premature wrinkles and thin your skin, and I don't want any part of that! I have also used Verdeso foam for my face, and it did absolutely nothing for me. But they may work well for you. I did just get some Bare Minerals powder that has real gold in it. I read that some autoimmune diseases, like rheumatoid arthritis, are treated with a gold derived medication called aurolate. It's supposed to reduce inflammation. So when I saw this gold Bare Minerals powder I thought I would try it, maybe it would help with the redness of my face. I have only used it three times, and my face still has the typical heliotrope rash, no change at all. The color of my face ranges from a pale reddish purple to a bright tomato red, which I'm sure your familiar with. I have had it since May 2008, and it just won't go away. It has gotten better, but it's stubborn. My dermatologist said Eucerin, Cetophil or Aquafor moisturizer lotion is ok to use for moisturization. I have more problems with the color of the rash than the dry skin. My skin does get dry, and it will peel probably once a month, but is has the various shades of red all the time. Let us know if you do find anything that works for you! Good luck!
Hi all, My name is Laura Conway, and I'm a Chicago native. I was actually diagnosed with the juvenile form of DM several years ago. I was wondering if you have any recommendations for a non-alcohol based skin moisturizer? I have a mild rash on the face, but am prone to dry skin anyway. Thanks!
Hi! My mom has said the same thing about changing the way I eat. I would say out of all my vices--alcohol, smoking (quit last year), shopping, and food--it is the food vice that I have the least control over. I have always had a love/hate relationship with it. It's like an obsession with me. I, too am a chocoholic. My husband has been saying we need to start eating healthier too. It would definately be a lifestyle change, and I have been thinking of doing it. I've thought about chemical exposures also causing the autoimmune diseases, I'm a chemist by profession, so I'm around them all the time. But I have been having health problems with my skin and joints since I was 18. Almost all the women in my famiily have hypthyroidism, and my mom has fibromyalgia. I also have Hashimoto's thyroidism, and a blood clotting disorder. I think I get diagnosed with a new disorder or disease every year. My body is just the gift that keeps on giving! : )With every pregnancy except the first I have taken injections of Lovenox, a blood thinner. When I am pregnant, I eat very healhy, and was always able to quit smoking asap. Of course after the miscarraiges I would start smoking straight away (stress). I don't know if we will try again or not. We've also thought about adoption, but right now I feel so scarred from it all I just can't focus on having kids. What's weird is that I didn't take any meds at all when I was pregnant with my son, and I was able to carry him for 7 months. Now I can't carry past 11 weeks. I think I had age on my side, I was 25/26 then. I did not know Australia was in such a drought. I am a big animal lover too. It's awsome that you are giving them water. That koala bear that the fireman found is all over the news here. I will bring up the food allergy thing to my doctor. I would love for all this mess to go away. For the past week my face has not been as red as usual. I'm hoping the methotrexate is finally starting to work. I'll defiately find out next month when I retun to work. Have you had any luck with finding out about your heart palpitations? I do get them occasionally, and I hate when it happens. It's nerve racking. Did you like living in Ireland? My great great grandparents were from there. I have always wanted to trace my family tree. It was good to hear from you again. Talk to you soon.
Hello Christy dear, Thank you very very much for your kind hope and prayer! I’m not directly affected by the fires, and no-one I know has been either. But something strange; I feel I am part of a huge tide of pain and compassion that has risen across this whole country. I have been trying over this last month to help the wild animals who are dying of thirst as week after week go by with almost no rain. The grass is dying and the leaves are falling from the trees as if it were autumn. I was told that the first day of the fires here in Melbourne it was 48 degrees. So I am putting out water around the two parks I walk in with my dog, for the animals to drink. Please forgive my tardy reply. Reading your last post also I felt a lot of sadness for you. I am sorry that you have had such difficulties with having a baby! I really hope that this will do a complete about face for you and that you’ll be a mum soon. Reading about lupus, I see that on at least one site they say there’s no reason you shouldn’t conceive. I wonder what has been going on with that. I read something encouraging on an Australia site birth.com.au that causes for miscarriage can include “…autoimmune diseases (for example Lupus), blood clotting disorders, diabetes, hormonal imbalances, kidney disease or low thyroid function. These may be the reasons for 'recurrent' miscarriages, meaning 3 or more consecutive miscarriages. However, when some of these conditions are treated or well controlled, the chances of miscarriage will tend to be no greater than any other healthy woman.” It also says on the site that “Women who experience one miscarriage are not more likely to experience another (unless they have a medical condition that is likely to cause recurrent miscarriages). Up to 97% of women who experience one miscarriage will go on to have a healthy baby with a subsequent pregnancy and up to 75% of women who have had 3 or more miscarriages will have a subsequent normal pregnancy and baby.” However, the sources for this info are not cited. Nor is the author credited on the page I looked at. I don’t wish to raise this up when you are putting it to rest for now. Of course you know you own condition best, and the pros and cons. You know, the only differences I could see between Lupus and DM in my very brief skim of descriptions is the mouth and nose sores and chest pain due to pericarditis. I do not get the sores, and the chest pain I occasionally have is not beneath the sternum but behind it, and up towards the left. It was this pain that sent me to the ED last time (after trying to ignore weeks of palpitations that increasingly came in clumps), to get looked at, hoping it wasn’t the beginning of some atrial fibrillation, which my dad has. Heart disease runs in the family. It’s so boring grr. I look at my dog’s clear eyes and expression of total enthusiasm and think it’s better to be without these stupid problems. Which should earn me a phd for stating the @%&* obvious. I have been looking at some of the given causes for Lupus, which look of course a lot like the tentatively suggested causes for DM. They mention UV exposure, diet, hormones. I’m pretty careful of my diet except for the chocoholism, and I minimise my time in the sun- which action has its own risk. And I’m concerned about my hormones because after years of dysmenorrhoea it was found I’ve got uterine fibroids. GRRR. But I’m wondering…I know most lupus sufferers are women of reproductive age, and that we can’t do much about, but what about the UV and the diet? Would it be worth having a bit of an experiment with those? When I had the initial joint pain I mentioned before, the GP had me tested for a few common allergies, and egg and dust mites came up positive. So I naturally thought that if I eliminated these things from my environment I’d get completely better. And maybe this thinking was right. I think it’s well-worth eliminating all excessively processed foods from the diet; no ready-made stuff, and just work with raw materials; veges/fruit, wholegrain products, as far as possible not just concentrating on one single type such as mono-crop mass-produced wheat, trying instead to take in a variety of seeds and grains. (I admit to being in the middle of a packet of twisties as I type :-S but it’s a blip- usually I’m an abstainer from that kind of junk). It’s just habit and habit can be broken. But I have a feeling that there is something environmental that contributes to this/these that we have. The minimal chemicals around the house I think is important too. I was fine before I went to live in ireland for 2 years in the late 80s. there, I spent time on farms, working with vegetable crops and chickens. I once had a pretty dramatic exposure to an organo-phosphate in the form of Tixol. Within a minute of dipping my dogs in this stuff I had a truly violent headache, double vision and was on my hands and knees in the field being sick. Tixol was withdrawn from use in 2000/2001. I wonder now whether my DM prob could possibly have started with something like that… What if you try going organic and fresh food and no chemicals? And see what happens?
Hi Joy, I hope you or your loved ones haven't been affected by the fires going on down in Australia. I'm praying for you if so.
hi christy, thanks for writing back :-) what a great site, although I wish they hadn't moderated out my treatment summary. i can really relate to your feeling of relief at finally getting diagnosed! when i first had all the loss of flexibility, the weakness and pain in my joints and muscles, my family and partner told me a lot of things that were NOT "wow, that sounds weird and bad! go and see a doctor and if he can't work it out, see another until you find one who can work out what is wrong, because it's obvious something is wrong!" i am still angry after all these years that even afflicted as i was with that ridiculous inflamed huge red rash on my mug, i wasn't taken seriously by those close to me. but, then, they also didn't heed the fact that their dog was cold and tired and had dry crusty skin and a strange expression from all the oedema around her face. i had it looked into and she has hypothyroidism. now, the uphill battle is the swallowing thing. it makes me feel as if i'm about to choke. my throat is so weak that i can't easily swallow away the normal mucus that everyone swallows without thinking. it takes me several tries to rid myself of whatever is there, and sometimes i don't manage. that's where the choking feeling comes in. sometimes drinking a little water helps. i did a barium swallow x-ray and it seems i have gastric reflux, which is a bit of a drag from the prognosis point of view. i hope it won't get very severe. i don't know whether the reflux is a function of the 'deglutition (swallowing) disorders' they talk about. i have no doctor here who recognises swallowing problems to be an aspect of dermatomyositis! almost none of them even know what dermatomyositis is. i had a GP who was clued-in; she was the first to tell me she had any idea at all what my rash was. previously i had been told it was seborrhoeic dermatitis, or quite openly 'i have no idea whatsover'. this good GP (who has unfortunately moved away) referred me straight away to a rheumatologist on the possibility i might have lupus, and she's the one who set me at ease about the huge red burn-like mark on my hip and the calcium lumps in my muscles. i really wish i had a reliable doctor, because i am afraid of this. anyway it's good that you got in touch and that you understand when so many medical people just don't, the amazing tiredness you feel with this condition, and the weakness. to this day my parents have no idea what it is i actually have. i'm glad i don't see much of them.
I'm glad you posted a message! I was dx'ed wth Lupus and Dermatomyositis sine myositis in 2008, but have been having problems for years. I have had mechanic hands since I was 18 years old, now am 36. No doctor ever recognized this as a DM symptom. I have had numerous miscarraiges (lupus), horrible skin for years. I was finally able to get dx'd because I got the heliotrope rash on my face, and itchy rashes and sores all over my body. They did a skin biopsy to dx. Even though you don't want to have diseases, it was actually a relief to find out. I was tired of not knowing why. I have had some muscle soarness in my shoulders and thighs. I have had a horse voice for no reason also. I get jittery sometimes, even when I haven't been on steriods. I get exhausted easily. The rash has made my body a furnace. My heart has also been beating irregularly so much it feels like its hitting my esophogas. It scares me and makes me feel like I could throw up. My doc says it could be the prednisone, but I also have Hashimoto's thyroiditis which can affect the heart. Who knows?? So, I have been in a flare since May 2008. i had to take sick leave in September because my job is very physical and is in a hot dusty environment. My skin couldn't handle it. i started making mistakes I normally wouldn't make, or forgetting things. I started running low grade fevers, and was just exhausted. I'm now on prednisone and methotrexate. It has gotten better, but not all the way. I am going to try to go back to work in March. I'm nervous about that, because I still have a lot of bad days. But i love my job and don't want to take a chance of losing it. I think its great to share experiences and have someone o talk to. There is also another website for myositis, it is myositissupportgroup.org It was nice to hear about your experience, keep in touch!
hello comrades :-) i hope you're asymptomatic and having a great time. i'd love to know where in the world you are and how life is going for you. we could exchange experiences about this condition we have. or just generally talk about anything and keep in touch. keep away from stress, eat well, have fun :-) see you here, i hope
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