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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joyforalifetime 02/06/2012

can those who have had swallowing issues tell me about their experience with it? i completely lost all swallowing ability in November (when i was in the process of being diagnosed) and didn't get anything down my throat until the first of January. then it was mostly soup and hot chocolate and TINY bites that i had to "force" down. i had big victories this weekend-went out to wendys and had 4 chicken nuggets and some fries :) took me a while but i did it! ate a bowl of spaghetti in about 20 min, when i first started eating food again (mid-lateJan) it took an hour to eat 20ish pasta noodles. so i'm noticing that the speed i can swallow is getting faster..and i was a slow eater to begin with! anyways, i'm just wanting to hear from others who have dealt with it and maybe get some encouragement. i wasn't expecting progress to be this slow and i'm wanting so badly to be eating normally so i can get rid of this feeding tube, and well enough before my wedding in 4 months!! i also want to be on a good diet rather than just eating whatever i can get down. i'm still noticing slow improvement in other areas too (just noticed yesterday that i can lift my left arm up much higher than before!) so i'm thinking the swallowing will keep improving with time...

trpt1 02/06/2012

Joyforalifetime, I am sorry to hear you are having difficulties with swallowing. I am having some difficulties but I am not on a feeding tube at this time. I think when your medication kicks in better then things will improve for you. Swallowing problems are an issue for everyone with DM/PM as the disease progresses. I think our illness is a matter of adjusting to whatever circumstances that we find ourselves in at the time. Congratulations on eating the chicken nuggets and fries! I do not know if doctors can recommend a type of physical therapy for strengthening internal organs like the esophagus, lungs, and heart, but this would be nice to hear about if it is possible. I wish you the best and hope your swallowing continues to improve.

joyforalifetime 02/06/2012

thank you trpt!! there are some exercises that the speech therapist gave me for strengthening/opening up the espohagus, but i honestly haven't done them in a while because i figured swallowing things was the best exercise-i should really continue doing them even when it feels like it's not doing anything

lexisgirl 02/07/2012

I had swallowing issues. Years before I was traveling on business. That night in the hotel, I felt like my throat was narrow. I was sure I was going to die in my sleep. When I got home, they decided I had a reflux issue and told me I was a "lazy swallower". I was given some exercises to try to strengthen my throat.

Fast forward to my PM days, before I was diagnosed, I found myself choking on food. There were some close calls. I found myself not eating dry things like bread, toast, meat, etc. When I did eat, I kept lots and lots of water close by so I took a drink with each bite. When I started my high dose Prednisone, it got better. I still have to pay attention when I am eating. I do not eat and talk at the same time because I tend to choke then.

I was very relieved when I learned it is part of myositis. No one had told me that. I learned it here.

deleted_user 02/07/2012

I'm currently on a feeding tube and can't swallow at all. I was looking around to see how long it takes for this to come back. Looks like its very slow. I really miss my mexican food.

deleted_user 02/07/2012

Did you guys have dysphonia as well? I sound like the lead singer for Pearl Jam gone mafioso. Does it go away along with the return of the ability to swallow?

nanny1611 02/07/2012

Hi, Bruce, and welcome to this PM/DM website. You will find lots of nice people here, who hopefully encourage you in your myositis journey. My voice is very weak and strange-sounding because I have a paralyzed vocal cord since before my PM diagnosis which will never get better. So I'm not able to answer your question. But I do understand some of your difficulties, as the voice issues can be very frustrating, especially when you're in a noisy place and cannot be heard. I also had swallowing issues before my diagnosis, which have improved some. The paralyzed vocal cord brings its own swallowing issues, so I'll always have some difficulties. But there are others on this site who have struggled and seen improvement. Hopefully they will jump in and answer your question. Again, welcome, and best wishes!

lexisgirl 02/07/2012

I've never been told I have dysphonia. But my voice has changed. It is softer and not easy to be loud. I can't scream anymore. I guess that is good and bad. Haha. I think the Prednisone has made my voice deeper. I often tease if I need a part time job, I could be a phone sex operator. My voice is so low and soft. Hahaha.

deleted_user 02/08/2012

for me the swallowing comes and goes. The voice comes and goes with it. When i swallow it sometimes goes up my nose some. Not out my nose, but up into my sinuses. The speech path gave me a bunch of exercises that are hard to do but she told me to sing and sing loud and high as often as i can. like make the dog go hide high when it is squeaky and harsh, this puts the adams apple up high and the motion of up and down and holding it up are good for us. Exercise in any area for me has helped re-energize the muscles and get them moving, it is not comfortable for me or my kids to listen to but i try to do it daily if possible.
Good luck,
Shawna

joyforalifetime 02/12/2012

bruce, be encouraged! it will come back. i was beginning to think i would never swallow and enjoy food again, and it finally did. suddenly it just started happening, and is continuing to get better. it took a while and was frustrating but i just kept the best spirit i could and kept waiting. it's still not to the point where i can eat meals normally and who knows when that will happen, but i'm confident it will. hoping to get my tube out in a few weeks. my voice was horrible at first. sounded so nasal-y and couldn't pronunciate certain letters well at all. SO thankful that has improved. i think my voice is still a little off but i've had a lot of people comment that they can't believe how much better i sound and almost completely back to normal. hang in there!! i know exactly how you're feeling

deleted_user 02/12/2012

When I was very sick I had choking problems, I was choking of food and liquids, even water. THey did a swallowing study and said it was fine, but I knew it wasn't and as I got weaker I was choking more. I just had to be very careful and deliberate while eating slowly and not talking for sure. As my medicines kicked in it got better, that took about 3 months. Now, almost 8 months later I have an occasional choking episode and my voice gets hoarse, but it is infrequent.

me3mae 02/12/2012

i had swallowing issues. I went for a month or more eating mostly mashed potatoes and chicken nuggets. Also my mouth couldn't open as wide so I couldn't eat big sandwiches. And I ate slower too. I have never heard of dysphonia, but I did notice voice changes. Before I got really sick I went on a trip with friends and was able to sing loudly in car to songs on the radio, but as I got sicker that was not the case. I started to whisper everything. I used to be so loud! but everything is getting better. good luck to you and everyone else

deleted_user 02/12/2012

I knew I had swallowing issues with dry foods (bread, pretzels, chips, etc.) and always kept a glass of water handy. Actually, chocolate milk was the best wash down because of it's thicker consistency. Swallowing those nasty tasting prednisone pills was better with milk also. I really noticed a problem when i could down a piece of greasy pizza with small bites, chewing well then couldn't get the crust down no matter what I did. It got better gradually and am back to normal now after a year.

deleted_user 02/13/2012

I too had swallowing issues.They eventually went away thank goodness. I lost a lot of weight .I have scince been able to put back on thanks to prednizone lol. I never thought i would be able to speak clearly again but gradually it has come back. Fingers crossed it stays and never goes away again.

deleted_user 02/14/2012

I never had a problem with food, but when my ck's go up I choke on my saliva and liquids. Also, I have voice problems when they go up my voice gets really hoarse and its hard for people to hear me even though I'm talking as loud as possible.

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