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.

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Out of remission....AGAIN

Hi everyone, have been suffering on and off for 14 yrs with DM these days seems more on then off. Last Rhuemy appt. my ANA was positive again, its disappointing when you are in remission for a long time, and then that happens.I would like to list some of my most recent symptoms just to see if any other DM people experience what I do. I was classic DM eye lessions, skin rash, hand and cuticle rash, muscle weakness, etc. but as time has gone on I know experience.
Burning mouth - mouth sores
Uncontrolable scalp itch
lessions on my knuckles
hip and shoulder pain(not weakness)
IExercise twice a day, still bike, walk, areobics what ever I can incorporate, feel it helps keep me strong. I also am a true believer in the power of prayer and try to be a positive thinker. I welcome any comments or advice that you are willing to share. Thank you and God Bless!
D

Replies

lexisgirl
lexisgirl

I wanted to say I am sorry you are slipping out of remission. I am sure that is very disappointing after feeling good for so long. I have PM so my symptoms are different but I do think your symptoms sound very similar to the other DM people express. I am sure they will be responding soon.

Hang in there.
deleted_user
deleted_user

I am also sorry to hear..I know how frustrating it is. With my PM I have more of the muscle and joint problems rather than the skin issues. The only skin issue I've developed with PM is Livedo Reticularis.
But it is frustrating, just when you think you are feeling better or getting good results, something happens physically to bring you down and make you frustrated. I hate these diseases.
deleted_user
deleted_user

Thanks ladies for your supportive comments, as rare as I feel this illness is, and how sad I feel when others share these auto immune disorders. It is comforting to have a site to go where you can share your ups and downs with people who understand.
deleted_user
deleted_user

hi @deeanngi i also have dm and have for quite some time. i know how horrible that can be to come out of remission and i totally impathize with you. i have had the same syptoms as you. shoulder pain can happen especially if you've felt weakness in those joints before. i've not had the mouth sores before. i know that can be a symptom of lupus or of some medications used to treat our auto immune disease.

i think exercise is incredibly important to keep us going, but if you're just recently relapsing i'm thinking you might want to stick to gentle exercise for right now and you might want to reduce your time spent exercising by a little. rest and recoup time is so incredibly important for us.

did your rheumy put you back on medications to help with all the symptoms and to reduce them?

you're definitely in my thoughts and prayers!
nicole
eddiesgal
eddiesgal

Take comfort in knowing you're not alone. I too have been slipping out of remission after a few years of controling the DM. We'll travel the road together:)
deleted_user
deleted_user

@ Nicole Thank you for the kind words, also empathize with all on this site, it was so hard first coming on a reading the stories, especially for people who have just been diagnosed. The road is long, it is often hard, but I have Faith, and alot of new friends to walk with on our road to good health. My Rhuemy increased my plaquinill intake, often wonder if that med bothers my mouth. I have cut down on my weight traing, see if I can heel my shoulders a bit. I go back to my rhuemy on Feb 21st, I lldef keep you posted.God Bless and good health.

@ eddies girl, I feel you, slipping backward is never easy, my face today is as red as can be. At least im not having to wear so much blush. haha. I ll keep you all posted on my Dr. visit on the 21 st. God bless, thanks for the encouraging words. As Ive always told my daughters. "if you're ever going to see a rainbow, you have to stand a little rain."
deleted_user
deleted_user

hang in there, don't let it get the best of you. i have had to deal with many of the symptoms, but refuse to let it hold me back. keep smiling and best of luck!
deleted_user
deleted_user

Thanks Hoops, I always try to keep a positiive ,happy attitude.I do believe that it helps me mentally and physically. Be well!
deleted_user
deleted_user

I'm with you girl..it's quite a cycle isn't it? Just when you feel you are semi normal..you take a small slide downward...but you WILL get back up!! Prayers and positivity your way !
deleted_user
deleted_user

Thanks Brandi, one day at a time.
deleted_user
deleted_user

Hi, I know the feeling. I've had DM since last 13-14 years too. I was dx way back in March'97. But do remain positive, "tough times never last but tough people do".

I have the skin rashes/muscle weakness off and on..its worse during winter. Also, do consult your doc/physio before going ahead with your workouts. Since it really helps conserving your energy for more important tasks ..for me its work, travel to work. I workout abt 2-3 times in a week mostly on weekends.

Also joining a site like myositis.org(TMA) really helps. They do send out useful articles.

Prayers & positive attitude always help ! So hang in there and things will be fine soon. All the best ! Ciao.
deleted_user
deleted_user

Today I went in the shower to wash my hair and that old feeling came back of not being able to lift my arms up for long. I have been in remission for about 1.5 years and am freaked out that it is coming around again. I never thought it would. I searched for a site about not being in DM remission anymore and you came up. You are so positive. Thank you for posting. I know now that I can go in and out of remission without my life being ruined again. (First time ever for blogging)
deleted_user
deleted_user

I am sorry to hear your flaring up again, I can't imagine the trial, I have DM but I am working on my first flare, I am a new DX back in Aug 2012.

Bible says " And we know that all things work together for good to them that love God, to them who are the called according to His purpose." Romans 8:28

He is working on you, it says in the bible also trials work patience.

Hang in there keep your eyes on Jesus and HE will give you strength to walk through this again ( because he has helped you before.)

God Bless, I have prayed for you.

Mike
trpt1
trpt1

Hi Deeanngi.., Your symptoms sound exactly like mine. I have dermatomyositis with overlap CREST scleroderma. DM does not have the mouth sores and burning mouth. Itchy skin is liver issues. Have your doctor run a centromere autoantibody test. A high ANA titer and centromere antibodies is scleroderma. Many people with DM have a scleroderma overlap and do not know it. Check out: www.sclero.org

You can pull up pictures on google of the sclerodactyly and telangectasia to see if your skin looks the same.

I am on the prayer list at my church and I know that it helps a lot. I believe in thinking positive too. I know that my doctors did not give me all the information about my disease at first. New things do pop up over time. The medications for autoimmune diseases are the same. I hope this helps. Keep us posted.