I know that DM can sometimes overlap with other disorders and calcinosis is symptoms of limited scleroderma as well. Do you have Raynauds at all? I don't have a DM diagnosis but I have Raynauds & some type of auto-immune condition I an not sure if it is Lupus, Scleroderma, or DM.

Hello. Thanks for replying.

Isn't it weird that if you have an auto-immune condition you usually get or have another?

I do have Raynauds. I know it's weird, but part of me is so glad you said that because most people have NO idea what that even is. :)

Have you gotten a muscle biopsy or anything? Are you doctors trying to figure out what ails you?

I was wondering about Raynauds because I was told to watch for calcinosis in my fingertips when I was given my Raynauds diagnosis. I definitely know what it is...lol I live in North Dakota so it never warms up either.
I also have LIvedo Reticularis that purple reddish mottling of the skin.
My doctor I think is stuck on the Adult-Onset Still's Disease diagnosis but now I have tremors and all of these nail changes she said she wasn't sure about AOSD now. I asked her about slceroderma and DM and she said no no no. I am getting a second opinion on Apr 12th and hoping to go Mayo in Minnesota with this next doctors request.
I also have acid reflux but I had a low CPK blood test but they say that you can have a low CPK in connective tissue disorders. The only biopsy I have had is a liver biopsy because I tested positive for the AMA M2 anitbody (which is specific for Primary Biliary Cirrhosis) but so far no damage.

Well, I do know with my particular case, my CK level was about 10,000 which is REALLY high! And every time I get my blood work done, they check my CK level to make sure it's not elevated. So I don't know that much about scleroderma, but I think maybe you have to have high CK to have DM???? Really not sure though. I hope you don't have DM because it really isn't fun to have at all.

I'm so glad I met you and I hope we can become good friends!! It's soooo nice to have someone who understands things from a 20 year olds point of view. So thanks for messaging me! You're awesome!

I'm glad we met as well! I hope we can become good friends as well. Since I live in North Dakota there is nobody in the state who has a condition similar to mine. It is very lonely! I try and keep my family informed but I don't think they want to know anymore I'm not sure they really can grasp what is happening to my body. I do know that I can thank Raynauds for one thing though it has really helped me boyfriend understand there is something wrong with me because all I have to do is take my sock off and my toes are blue and my leg is purple within a few minutes.
I do think with DM usually you CK is high however I have read that a high CK isn't always neccessary some people have low muscle enzymes because of the weakness and for whatever reason their bodies don't produce the high CK. Another test is the AntiJO1ab but I tested negative for that as well. I've tested negative for everything except Rheumatoid Factor and AMA M2 antibody. but some people never get the antibodies.
Do you run fevers at all? I run from about 99-101 every day for a year already.

Yes, I have the calcinosis. Mine is throughout my body. So I don't think I will be wearing a swimsuit this year. I try to find clothes to cover all of it. I am going to see a Bone and mineral specialist who is know for his specialty in calcinosis. I am hoping to learn more. I will let you know what they have to tell me. So far all I know is the only remedy is removal. However, with removal there is the chance it will come back worse.

Count me in on the calcinosis. I have three alone on the back of my left calf and am finding them everywhere. Not much you can do about them, but I understand how they can make one so self consious. The worst is shaving my legs because it's so difficult trying to manuver around them and not cut them open. It's so frustrating!

i also have developed lumps all over my body but is under my skin,maybe bacause of my weight from the prednisone but they move around and change shape,my husband has to massage me every night before bed or it is too uncomfortable to sleep,the enzyme count i had was only 400 and still have dm with all the symptoms,my count is zero now but stii getting worse with the symptoms

Thanks so much for replying guys!! It's nice to know that I am not the only one this is happening to.
I know what you mean about shaving your legs!! It is hard and pretty much cut myself everytime. So now, I bought a men's electric shaver and use that. Works soooo much better and no more cuts!!

Rave, please let me know if you find out anything from your bone doctor!! Eddiesgal, when you say the back of your calf, do you mean on your muscle? All mine seem to stay on top of bones or tendons. The ones behind my knees are the worst and biggest.
BamBam-What a nice husband you have!! Rubbing you every day!! MY finacee is very nice because he rubs my hands and fingers for me all the time. It sure does help with all the stiffness.

So does anyone's calcinosis hurt?? Or is it just lumps under your skin? I know the ones I have that are VERY large they hurt so much when I whack them on something(I am so clutzy)

I'm so glad to have found this site! Calcinosis has been a "thorn in my flesh" for years. My doctors have told me they've never seen anyone with so much. I've had numerous surgeries to remove the calcium. On the soles of my feet I've had "hokey pucks" removed, Just had surgery May 27 to have the second chunk removed from the sole of my right heel. At the same time I had a graft repair done on my right knee. Have had thick layers of calcium removed from both knees in the past, necessitating skin grafting, so a plastic surgeon did it. Now the Integra used to do that had gone bad, so he had to re-do about half of it. I heal very slowly, but it's looking not too bad. Have surgery on my hands and arms a number of times. After my wounds are healed, I'll have to have my left hand and arm done again. I find that it develops repeatedly on body parts that have pressure put on them, like the soles of my feet, the knees, because the skin tightens when you bend it, the back of the knees because that gets pressure when you sit on a chair, and the palm of the hands where you put pressure when you grip something--like opening a jar. Also, I've had surgery twice before on my arms and elbows, because you lean on the elbows and put your arms down when you write--especially the left one. Haven't had anything done to the calcium behind my knees. Where it doesn't cause pain, I leave it alone. The knees had ulcerated, so there was no choice but to have surgery. Same with the soles of my feet, plus it's so painful to walk on jagged rocks! I had some surgeries with just anesthesia blocking, so the doctor showed me the pieces he removed.

Csullivan, after reading what you wrote, I'm wondering if you may also have Scleroderma. And Eddiesgal, sorry you have to deal with calcinosis along with your other challenges. Sure wish more research was being done on this malady. Wish you all the best. I will certainly follow this site. Lydia

According to what I've read, calcinosis is much more common in people with Juvenile DM than adult onset DM. Were most of you diagnosed when you were younger - in childhood or teens?

I was 49 when I got sick, and have only had one very small calcium deposit on my finger tip. My dermatologist biopsied it to make sure that's what it was, and then froze it with several applications of liquid nitrogen and it hasn't grown back. I would have thought it was a wart it the biopsy hadn't said otherwise.

The most bothersome growths I've had since DM have been benign fatty tumors under the skin called angiolipomas. They're not dangerous, but very painful to touch, and I've had several removed from my arms, shoulders, and neck. My doc says these are usually hereditary and probably not related to DM, but I just wondered if anyone else has had this problem?

Lucky