The dermatologist I went to in June after the heliotrope rash started treated me like I was crazy. He actually rolled his eyes at me and would not give me steroids. He thought I was lying about the rash getting worse when I went off the steroids I had been on.I told him my skin burned and tingled. He said it was a yeast infection from lotion I was using. He dx'd me with sebhorric dermatitis. He was a horrible doctor. The next derm doc new automatically it was some type of auto-immune disease. It has been a long time coming. I have not had trouble swallowing, but do feel like I'm walking through water sometimes, like I'm having to work the muscles harder. I haven't had any paralysis either. I've had a lot of joint pain. When I push myself, I turn brighter red, start running a low grade fever, and sleep, sleep, sleep! I see that you are in Australia. I hope you can find someone there that can treat you and has actual knowledge about DM. The Cleveland Clinic in Ohio actually dx'ed me with the DM. They were very knowledgeable and thorough with screening me. I was dx'd with the Lupus in WV first, but the symptoms just kept getting worse. Turns out I have responded to methotrexate better than the plaquenil I was first put on. Do you get sore/red/raw feeling around your fingernails? I have to put bandaids on my fingers sometimes to protect them. My skin on my thighs, back, arms, breast still get red and sore, not as bad as when I was working though. Are you working now? What kind of meds are you on? On the website I wrote about earlier there are a lot of people who have problems swallowing. It is very common for DM. But I guess you know this. Too bad your docs aren't up to date. There are a lot of good websites out there, but there is still not enough known about DM. We'll get there one day, I have faith. Hope to hear from you soon! : )

hi again :-) actually i did not know about that support site till i read your message. i have not looked deeply into it yet, but so far have not been able to find the swallowing problem posts in the dermatomyositis section. maybe they are in the myositis part. my hands got red along the backs, especially the right hand - weird- and especially on the knuckles. i also got a lot of gottron's papules along my fingers. the damage that was done initially hasn't worsened and neither has it gotten better. i don't get soreness around my nails so far. the calcareous lumps around my hips and thighs make me look slightly asymmetrical and are painful on contact with the surface tissues that overlie them. the skin on my face has got a lot better, though it still tends to be thickened and as if sunburned in the area around the centre of my browline and just above, and the areas where the sides of my nose flatten out into the cheeks. the heart problem has been affecting me for as long as the swallowing/choking thing- even longer actually, and i've twice had it investigated and had to wear a holter monitor. one good thing here is that they DO take heart stuff seriously. i only wish someone would realise that this heart thing is part of the DM, and think up some way to prevent me from possibly dropping dead. they gave me plaquenil. but i don't like its side-effect of possible blindness much. i avoided the cortisone because of the facial oedema. i looked bloody awful enough already with the thin patchy hair and red face and puffy eyes! which caused me not to renew my driver's licence for fear of the camera, for several years. the muscle and joint pain has been pretty bad with me. i had joint pains, mostly in my hips, that made me walk bent over like an old woman. that would come and go. there was never any diagnosis for those. my GP at the time said he thought it was automimmune, but didn't refer me to anyone to have it looked into. many years later, i noticed that my arms would get very tired and that i coud no longer reach behind me in the car for the street directory. i couldn't sit on the carpet as i had been used to doing, and couldn't cross my feet under a chair- in fact couldn't bend my knees more than 90 degrees at all. it was hard to pin my hair up. my own approach to dealing with this has been to try to stay strong, to resist it as much as possible. it has made me extremely tired, but i think has been helpful. another thing i do is try as much as possible to stay away from any environmental toxins. i don't use insecticides or herbicides anywhere around my house and try not to be around heavy exhaust fumes. try to eat well, though i love chocolate too much. this i think gives the body less damage control stuff to do. i hope it helps. one strange aspect of the swallowing problem has been the onset of a weird kind of spasm thing. i first noticed it when i was in a cocktail bar one evening and had a taste of 'absinthe' i almost never drink alcohol, but i had never before had a problem knocking back a shot in one go before, the few times i'd tried it. however with this absinthe, after just one tiny sip i instantly had the worst hiccups ever. my throat closed up and i felt that i was choking. the feeling stayed for several minutes. i have since noticed the same problem with wine. and recently, a tiny bit of water went down the wrong way while i was laughing at the new coen bros film, and my throat closed up almost completely, so that i really REALLY got a fright. i could neither draw nor expel more than a very small amount of breath for a what felt like much too long but was probably only less than a minute at its worst. thta experience put me in a total sweat. my companion put a hand on my back and found me saturated. this aspect of it frightens me very much, and i wish i could banish it completely and forever. i hope it never gets worse. as it is, i am becoming cautious and nervous. i never go out without water to sip and something to relax me if the throat obstruction sensation stars worsening. the sense of choking brings on instant fear (NOT VICE-VERSA, for any medical types reading this. if you don't believe me, i suggest you try it) well i can't say i'm 100% yet, but i am hopeful. considering some kind of voodoo or maybe exorcism as a next plan of attack. just kidding :-) thanks christy for your messages. you are the first other person i've ever met with this condition, and i really appreciate your telling me how it is for you. stay in touch too :-) when they eventually put in some kind of private messaging facility on this site i'll give you my email addy and other contact details.

It really sounds like you have had it really bad. I don't have the calcinosis. I have had some minor problems breathing, like I just couldn't breathe air in, like breathing through a wet towel. That has happened a few times. It is scary though. But I did smoke for 20 years too, so that could be the reason. i just quit last March. As far as the red hands, my right hand gets more red also, especially my knuckles and index finger. Maybe because I'm right handed, I don't know. My face stays red or a light reddish purple all the time anymore. i'm also red around my hip side of my thighs too, and knees and elbows. I was out a couple weeks ago and noticed some kids staring at me, my Mom noticed them staring too. My face was really red at the time and some of the skin around my nose was peeling, just like a sunburn. But they were just kids, what are you gonna do? Thank God my license doesn't need renewed yet, I never thought about that! Luckily, alcohol doesn't affect me in any adverse way. I do get redder when i drink, but i do love the stuff. I've never had absinthe, it has been illegal here. i just saw some in Kentucky, where I'm originally from. I don't know if it is just legal there now or in the whole United States. I haven't seen it in West Virginia. Everytime my arms or legs get sore I am terrified I'm starting to get muscle paralysis. But i'm trying to keep a positive attitude. Sometimes, I get really depressed. By the way, it seem like you have a really great positive outlook. I appreciate that. My main problem that frustrates me is trying to have kids.I have had a lot of problems with that. They think it is the lupus that has caused that. The Cleveland Clinic said I don't have it, but my rheumatologist and dermatologist say i have both the dm and lupus. Who knows, I think the medical field is all one big guessing game. I have a hiatal hernia too, nothing to do with the autoimmune, but I get bad pain from it occasionally. My doc prescribed hyoscamine because it relaxes the esophagus. I just wonder if something like that could help you with the swallowing? I really don't know, just thought I'd throw it out there. Anyway, it was nice hearing from you again. Talk to you soon!

hi :-) many thanks for the hyoscamine suggestion. i will check that out for sure. you know, about the positive outlook, i think that maybe it might be more simply denial. with all the symptoms i've had, my main reaction has been just to feel vindicated- there was a name for the reason i was having these things happen. the satisfaction of that has just about cancelled my fear of the long-term possibilities. i have thought only in the short term, until now. now, this throat thing is scaring the hell out of me. i get depressed too, and it was mooted as a possibility among the docs that i might have gotten the DM in the first place in reaction to stress. i certainly have had a lot of that. when i started having alopecia, i went to a dermatologist, in fact the same one that years later was part of the group who diagnosed me with DM. but when i initially saw him, it was just the hair falling out in patches. he'd look at my fingernails and ask me what had been happening in my life- had i had any recent trauma. and invariably the answer was yes, and my time-frames for these occurrances matched his estimate of when they'd have been. he could tell by the fact that i had these horizontal grooves in my nails representing periods of time during which the body had shut down protein synthesis in response to trauma. as to the lupus question, the rheumatologist i first went to told me that my horrible (peeling and sore like yours) butterfly rash wasn't a lupus rash because my rash crossed the naso-labial fold, meaning that the rash went over that crease from my nostrils to my upper lip, and could be seen on the upper lip. apparently the lupus rash is more circumscribed, more clearly delineated. that could be a question you could bring up with your various docs and compare the responses. what we need is a meta-doc :-DD to sift thru all the dross info and distil for us that info that is valid. hey i have had that red hip thing too! a great huge disc of red the size of a bread plate. i did not know about the possibility of actual muscle PARALYSIS- i thought inflammation and pain and loss of flexibility were it! i will try to forget that asap :-). there is another thing i've had, which i originally took to the one GP who had a clue on my first consultation with her, but she had no idea about this. it was strange sensations like electric shocks with numbness in my toes, but only if i remember rightly either the second smallest, or the smallest toes. it was bilateral and intermittent, but very noticeable when it was happening and very strange. after the GP and then the first rheumatologist didn't know what that might be i stopped ever mentioning it. i wondered whether it might have had some other aetiology. i now think it was the DM. i bet my inflamed muscles were pressing on nerves and blood vessels, as in compartment syndrome. it must be confusing having several possibly ocasionally overlapping conditions or at least diagnoses, as in the possible case of the 'lupus', christy. it's no wonder you feel overwhelmed sometimes- surely it's natural. i hope you can get to the bottom of it before too long, and have a doc whose knowledge and common sense you can respect and rely on. meanwhile it seems you are doing extremely well in getting on with life. i envy you being in a position to try for a baby

Hey! My hair is falling out too, not in patches, though. I think mine is because of the methotrexate. If i didn't have very thick hair in the first place, it would look very thin by now. As far as the paralysis, I've read some of the blogs on that other website where people are saying they were in the hospital and could not move at all. Talk about getting depressed after reading that. With the lupus thing, I have symptoms from that too, like getting sores in my mouth and nose. They are always in my nose. And also with the miscarraiges, I have had a total of 4. I had a son in 1999, but he passed away at 4 and a half months old, bless his heart. The pregnancy was very messed up. I have pretty much given up on trying again. Plus, the methotrexate I'm on now will cause miscarraiges or birth defects. I have yet to have any tingling anywhere. Somtimes I feel like when I pick up something it is heavier than usual, or when I walk its like walking through water. I have been getting a lot more charlie horses lately, do you get those? I get them on my side and my legs. I get jittery a lot. The prednisone only makes it worse. Before I knew I had all this I was getting a lot of what I thought were anxiety attacks, but now I'm thinking it was the DM or lupus. Now when I get jittery I recognize it as muscle or nerve problem. Before I interpreted it as anxiety. I cope better thinking about it that way. In the past I have felt like I am on the verge of a nervous breakdown, seriously. But like you said with the vindication thing. I have been able to deal with it a lot better just knowing what it was. Also, another one of those esophagus relaxing drugs I take is reglan, it has worked well for the hernia also. Talk to you soon!

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.

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! 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.