Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi! I am new to this group (haven't actually joined yet) but not new to DS. I have a host of stuff going on, like you guys, and wound up seeing a new rheumy who referred me to a dermatologist who specializes in autoimmune illnesses. I had never even thought to go to a dermatologist, since I had been seeing a rheumy. Go figure!
Well, the dermy (for short, lol) checked my problem areas, namely my "rashes" on both of my arms in the same places, starting where my shirt leaves off and continuing down past my elbows, and also both of my legs, "rashes" that make me look like I'm wearing mid-calf socks. I put "rashes" in quotes because while it is red, to me it doesn't seem like a rash because it doesn't itch and I don't notice any bumps. Definite redness and warmer than the rest of my body. Also, my cheeks are bright red most of the time and hot, including under my chin.
Anyway, she mentioned a few things she wanted to check for by doing a biopsy on my right arm above my elbow. I have never had a biopsy before and was surprised when the nurse said that stitches would be involved! lol! I have never had stiches, except for oral and surgical when I was knocked out, lol! So this was a different experience. As long as I don't look, I'm fine, lol! I did ok, even the shot wasn't that bad. Of course, I give myself shots (which I NEVER thought I could EVER do) so it wasn't so bad. Well, I went out to dinner last night with hubby and felt awful after eating. I feel pretty wiped out today too. Have any of you felt this way after a biopsy or am I being a big baby, lol? I am also tapering Prednisone and not feeling as well in general. I am sooo swollen tonight, it isn't even funny.
So, I was wondering, do any of your symptoms include swelling, mainly in your legs from the thigh all the way to your toes, both legs? My right leg is worse. I also have a lot of pain even though I'm on narcotic pain killers. I'm also on a couple of different diuretics.
My dermy also asked me if I am fatigued a lot of the time. I am sooo fatigued!! I can barely stand long enough to take a shower, so I am down to showering only twice a week and after I have to sit on the bed right away and stay there for about an hour and it still takes it out of me. I have a terrible time just standing long enough to brush my teeth! It takes all of my energy just to make cereal or a sandwich. I also have a lot of trouble climbing our stairs (13) to our bedroom. My muscles feel like I've ran a marathon.
She said about 4 different things it could be, including Lupus. I don't remember the others, but think DM may have been one of them. I'm trying not to worry too much, but on the other hand it will be nice to know what is causing all of these problems, you know what I mean?
Thanks so much for reading all of this, I truly appreciate it!! Any advice or help you can give me would be great!!
Hugs!
Sheri
Well, the dermy (for short, lol) checked my problem areas, namely my "rashes" on both of my arms in the same places, starting where my shirt leaves off and continuing down past my elbows, and also both of my legs, "rashes" that make me look like I'm wearing mid-calf socks. I put "rashes" in quotes because while it is red, to me it doesn't seem like a rash because it doesn't itch and I don't notice any bumps. Definite redness and warmer than the rest of my body. Also, my cheeks are bright red most of the time and hot, including under my chin.
Anyway, she mentioned a few things she wanted to check for by doing a biopsy on my right arm above my elbow. I have never had a biopsy before and was surprised when the nurse said that stitches would be involved! lol! I have never had stiches, except for oral and surgical when I was knocked out, lol! So this was a different experience. As long as I don't look, I'm fine, lol! I did ok, even the shot wasn't that bad. Of course, I give myself shots (which I NEVER thought I could EVER do) so it wasn't so bad. Well, I went out to dinner last night with hubby and felt awful after eating. I feel pretty wiped out today too. Have any of you felt this way after a biopsy or am I being a big baby, lol? I am also tapering Prednisone and not feeling as well in general. I am sooo swollen tonight, it isn't even funny.
So, I was wondering, do any of your symptoms include swelling, mainly in your legs from the thigh all the way to your toes, both legs? My right leg is worse. I also have a lot of pain even though I'm on narcotic pain killers. I'm also on a couple of different diuretics.
My dermy also asked me if I am fatigued a lot of the time. I am sooo fatigued!! I can barely stand long enough to take a shower, so I am down to showering only twice a week and after I have to sit on the bed right away and stay there for about an hour and it still takes it out of me. I have a terrible time just standing long enough to brush my teeth! It takes all of my energy just to make cereal or a sandwich. I also have a lot of trouble climbing our stairs (13) to our bedroom. My muscles feel like I've ran a marathon.
She said about 4 different things it could be, including Lupus. I don't remember the others, but think DM may have been one of them. I'm trying not to worry too much, but on the other hand it will be nice to know what is causing all of these problems, you know what I mean?
Thanks so much for reading all of this, I truly appreciate it!! Any advice or help you can give me would be great!!
Hugs!
Sheri
I have all of the rashes you mentioned as well as the mind-numbing fatigue. Even a couple of months ago, I would have never thought just taking a shower would make me tired! I have lower extremity swelling, but more localized to my feet and ankles. I do not have a definitive diagnosis, and had thought about seeing my dermatologist to see if maybe that was the place to go. All I can get so far is 'in the family of Lupus', which can be myositis, Lupus, sarcoidosis, and I just want to pin it down, treat it , and move on.
Good luck with your biopsy, let us know when you hear back.
deb g
You are not a wimp. DM (and many autoimmune diseases) create fatigue. I was sleeping 16 hours a day. Before I knew what I had
I hired a personal trainer (I thought I was a wimp). As luck would have it I went to the doctor the next day who finally diagnosed me with DM. At the appointment I asked if I should exercise and sit in a sauna. He said I was already inflamed so no exercise, but lots of rest until we could get the meds going. I canceled the trainer.
Regarding your biopsy - I think anytime our body is cut open it
affects the whole thing. If you are exhausted your bod is trying to tell you to rest.
As you read more posts here you will notice this disease affects us all differently. My rashes are on my hand, my scalp (with hair loss) and my upper outside of my theighs. (Very odd)
If you have DM it is very treatable and not a death sentence. Right now try not to worry (easily said for me) and rest rest rest. I have known since April that I have DM. I found a lady at church that had it right after the birth of her third child (can you imagine DM with a baby, a two year old,and a four year old?!) She is now running marathons.
We are here for you
Debbie
Unfortunately, most autoimmune disorders are not easy to diagnose. Most people don't present with all the clinical symptoms right away, and it takes time to sort things out.
I just wanted to let you know that in many cases, trained pathologists can't tell the difference between dermatomyositis and lupus by skin biopsy. Here's the abstract of a study:
http://journals.lww.com/amjdermatopathology/pages/articleviewer.aspx?year=2009&issue=02000&article=00012&type=abstract
Blood tests, muscle biopsy, and electromyography (EMG) will probably be necessary to make a diagnosis. Frequently they can identify antibodies that are specific to a certain autoimmune disorder or a muscle enzyme (CPK) that spills into your blood when you have DM. There are also characteristics of DM that can be identified in muscle fiber. And the EMG frequently shows abnormal muscle activity in DM.
Many of the people here have had long and frustrating diagnostic experiences and can relate to your worries. Good luck for a speedy diagnosis!
Lucky
Fatigue can be a huge part of the disease. I too get very tired taking a shower, And it isn't just the shower. Drying off makes me tired. Then the lotion (I live in the desert) and then doing my hair. Well that feels like running a marathon to me. I usually try to allow time to rest after. If I have time, I do it in pieces too. So wash and dry, then rest. Then lotion, then rest. Then hair, then rest. I've found not pushing through and getting too tired allows me to keep going.
I'm sorry to say, the best way to control your "flare" is medications. Most of us start on a high dose of Prednisone (60 mg) for a period of time. Then they add another medication and try to taper the Prednisone. We all hate Prednisone but if you tolerate it and it works, it is better to take it than have the symptoms come back. We often take lots of other medications to counter the side effects.
I have my fingers crossed for you that you are able to find a diagnosis and you get some relief soon. It does get better when the medications help control the disease. I take it a day at a time. Some days are great and some days....well I take it easy.
Hang in there.
Welcome to this group of great people. As Lexis has mentioned, they are knowledgeable and helpful. Early in my disease process, I had experienced swelling--first in my joints, then my legs and arms. I was finally diagnosed with PM in 2008, but was told a few months ago (after 2 skin biopsies) that I have overlapping DM and lupus. Fatigue is definitely a part of PM/DM and other AI diseases. As difficult as diagnosis can be, it's a relief getting a name for our problems. Also, if you respond to treatment, you will feel better. Please know that everyone's journey with myositis is different. Best wishes to you. Here's hoping that you get an answer soon.
Blessings,
Kim
I didn't read it all, but the part about the biopsy! If your on high levels of prednisone, the biopsy might be a waste of time. I hope it reveals enough. I was told I have PM with lung involvement. One year now, but I'm on a low does of prednisone, now with antibiotic treatment. Yes I had swelling that got better because of the drug. I understand about feeling fatigued. My Vitamin D level was also very low. Time helps for sure, but I now think the antibiotic treatment and supplements are making this whole thing better. I had a weird IgG pneumonia count which I was told could be the cause, but is also treatable with the antibiotics that I am taking twice a week.
Welcome to the group, they are a bunch of great people.
Barb
I take growth hormone shots because apparently my autoimmune illness attacked my pituitary and my body no longer makes it naturally. I take insulin now because I have recently been diagnosed with diabetes. Prednisone may be the culprit for my developing it. I have been on it for several years now, always tapering trying to get it lower. I tapered again last Tues. from 18 down to 17.5 and will go down to 17 in three more weeks. I had been down to 8 and my body totally freaked out with really bad swelling in my ankles and legs and big-time pain. So, my other rheumy put me back up to 20. So, now I'm trying to get back down again. We'll see how it goes I suppose. I already am swelling quite badly and had quite an increase in pain, but the pain is better now.
Also, I had to go to the dentist today and have my bridge re-done and a filling in a huge cavity in my anchor tooth for the bridge. Out of all of my teeth, I got a cavity in that one. Figures, huh? lol! So, I am very tired and am headed for bed. By the time I finish taking my meds, giving myself my shots, brushing my teeth, etc. It will be very late, lol!! To top things off, I have to do an overnight breathing test where I wear a monitor on my finger and it is attached to a machine that measures my oxygen level and heart rate during the night. I wear CPAP and oxygen at night for severe sleep apnea. It should go ok though, I am so tired tonight I probably won't even notice, lol!
Okay I said this would be short, didn't I? Thank you so much again and I will write again when I'm feeling a bit better. I hope all of you are feeling as well as you can. One day at a time, right? :0)
Hugs!
Sheri