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.
I've had DM for a little over two years primarily with skin symptoms, joint pain and fatigue. ANA negative but a biopsy showed DM.
I've had the healthiest couple of months since being diagnosed. I have had almost no skin flares, and my 3month long fever finally broke in early May. I started working from home a few days a week and have only been taking Plaquenil + topical steroids as needed + protopic as needed for symptoms.
The last 3 weeks or so I noticed I have had some trouble with choking on food and pills I have a crazy gag reflex...I almost never choke. But it's become like a once every day or two having a major choking episode type of thing. Twice now it has been violent enough that I vomited. The worst was tonight when I had a total air blockage (alone at home, wonderful) and to give my self the Heimlich. I was seeing black spots and on the verge of passing out before i managed to force the pill out and start breathing.
This has been accompanied with a feeling like something is stuck in the back of my throat, or sometimes when I eat I feel like I still have something in my esophagus. After 10-15min it usually goes away. It's not a consistent thing...maybe 2-3 times a week over the last 2 months. A lot of coughing and clearing my throat.
I am pretty mindful when I eat, and I eat small quantities frequently during the day...so I don't think I'm bolting my food and causing myself to choke. I actually might not have noticed the symptoms as significant except a friend actually said to me yesterday 'you've been choking a lot lately. Are you in a rush? Is everything ok?' and I realized OMG, it is happening sort of frequently.
Is....is this significant? I have a regular appt with my rheum at the end of August, but I'm starting to wonder if I should see her sooner. I am too scared at this point to get my meds down. I don't know if it's coincidence and now I'm scared to swallow pills/food or if this is a DM symptom. I have never had clinically significant muscle weakness before. I have felt like I've lost some strength in the last 3-4 months, but that could be age/being a little out of shape (which admittedly I am a little bit out of shape at the moment).
I did take a look at the back of my throat and one of my tonsils is bigger than the other...but its' not like they touch or are obviously obstructing my air way. At least not that I can see.
So am I over reacting? Or is this the 'trouble swallowing' I have heard about with DM? I always thought trouble swallowing would have presented after loss of strength in the shoulders or hips...but maybe I'm wrong.
Would like to hear of other people's experiences before trying to worm into my rheumy's schedule before the end of august.
I've had the healthiest couple of months since being diagnosed. I have had almost no skin flares, and my 3month long fever finally broke in early May. I started working from home a few days a week and have only been taking Plaquenil + topical steroids as needed + protopic as needed for symptoms.
The last 3 weeks or so I noticed I have had some trouble with choking on food and pills I have a crazy gag reflex...I almost never choke. But it's become like a once every day or two having a major choking episode type of thing. Twice now it has been violent enough that I vomited. The worst was tonight when I had a total air blockage (alone at home, wonderful) and to give my self the Heimlich. I was seeing black spots and on the verge of passing out before i managed to force the pill out and start breathing.
This has been accompanied with a feeling like something is stuck in the back of my throat, or sometimes when I eat I feel like I still have something in my esophagus. After 10-15min it usually goes away. It's not a consistent thing...maybe 2-3 times a week over the last 2 months. A lot of coughing and clearing my throat.
I am pretty mindful when I eat, and I eat small quantities frequently during the day...so I don't think I'm bolting my food and causing myself to choke. I actually might not have noticed the symptoms as significant except a friend actually said to me yesterday 'you've been choking a lot lately. Are you in a rush? Is everything ok?' and I realized OMG, it is happening sort of frequently.
Is....is this significant? I have a regular appt with my rheum at the end of August, but I'm starting to wonder if I should see her sooner. I am too scared at this point to get my meds down. I don't know if it's coincidence and now I'm scared to swallow pills/food or if this is a DM symptom. I have never had clinically significant muscle weakness before. I have felt like I've lost some strength in the last 3-4 months, but that could be age/being a little out of shape (which admittedly I am a little bit out of shape at the moment).
I did take a look at the back of my throat and one of my tonsils is bigger than the other...but its' not like they touch or are obviously obstructing my air way. At least not that I can see.
So am I over reacting? Or is this the 'trouble swallowing' I have heard about with DM? I always thought trouble swallowing would have presented after loss of strength in the shoulders or hips...but maybe I'm wrong.
Would like to hear of other people's experiences before trying to worm into my rheumy's schedule before the end of august.
This feels more like it's....lack of coordination? at the end of the swallowing phase. Higher up in the throat I guess.
Regardless...the more i read online the more i get freaked out about cancer or something, too.
So i guess these feelings/episodes *are* defined as 'difficulty swallowing'? I mean how frequent does something like that have to be before it is a 'symptom' and not something that just happens to everyone once in awhile?
...for people that have DM and trouble swallowing, what did that feel like? Do you also have muscle weakness in other parts of the body??
I would talk to your doctor. It could be related, reflux, inflammation, or ? If you are uncomfortable, I would try to get into the doctor sooner.
Wish you a speedy resolve of the problem.
i also had trouble with my voice getting tired, and now that is all gone too. Get it checked, it may be related.
It does not sound like allergies and you know and have an epi pen so i am less worried about that. I too am a nurse and use an epi pen.
Good luck. Shawna
I did contact my doctor (my GP - my Rheum is out for another week). She said to keep an eye on it and call back when the Rheum is in town. She didn't seem overly concerned.
In the meantime, I've continued to have some issues but no complete obstructions. One instance where i could feel it stuck in my upper esophagus and just....would not go anywhere. after a few min (and tons of water) it went down. Or at least I stopped feeling it. I've thrown up twice in the process of getting out an...'erroneous swallow' but I was able to get out, which is good.
I understand the dangers regarding aspiration - I have a sister that choked on a lifesaver as a young kid and my mom had to do the H maneuver and she developed pneumonia 3 days later.
I've been watch for symptoms but so far I seem to be OK, other than hungry and irritated since I can't get much of my meds in ;)
Been sticking to things that are easier to get down, smaller bites, lots of water, etc. Always have 911 punched into my phone just in case, and have tried to make sure i'm taking the pills with someone else in the room. Just in case.
I will keep trying with my rheum to see if I can get in before the end of the month. Or even with another GP who seems to actually care/think that choking is an emergency :: rolls eyes ::
Thyroid is totally fine - I have an endocrine condition and I am checked regularly for that and a few other things. I also took a look at my throat...one tonsil is slightly enlarged compared to the other, but not hugely. Not enough that it would cause choking (IMO - I've had enlarged tonsils before where they were practically touching and never choked).
I had no idea about the voice component! Mine is definitely a little lower and kind of raspy. I've lost the ability to really belt it out, but since I don't have a job that requires me to shout all the time I thought it was just an issue of not practicing ;)
Yes, go see your dr asap. I had this as well and it is very scary. . Everything would get caught in my throat. It is muscle weakness in your throat from the DM/PM. The Dr. put me on medicine that helped. It took about 2 months for all of my symptoms to go away from this.
I understand the difficulty of this and it is very uncomfortable. I would go see a Dr. before it becomes too serious. I was lucky to have my swallowing issue taken care of early on. Go get an endoscopy- I had to get that done and they also noticed thrush.
Good luck! and I would move your Dr. appointment earlier so they can take care of this. It can turn into a serious issue if not taken care of asap.