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.
Hey -
I had numerous small symptoms, but was diagnoses based on a skin biopsy of number of crazy rashes i had in the summer of 2010 (fever, bad cuticles, etc.). I had no muscle weakness at the time but a lot of joint pain and fatigue. The skin biopsy indicated either cutaneous lupus or DM - based on the pattern of the rashes and some of the types, I was diagnosed with DM Sine Myositis. I was told to make peace with 24/7 sunscreen, protect my windows, wear a hat, take plaqenil and protopic/topical steroids for rashes. I see a rheumatologist every 3 months who takes blood and looks for obvious red flags and we do some scans to check for cancer at least once a year. All has been good so far - no signs of any muscle involvement. Last battery of tests with that doctor was about 3 months ago.
Last year I started having problems swallowing, and discovered I (suddenly) have severe reflux - I don't feel it, and it hasn't improved with normal GI medication. I've heard it's a common issue with Plaquenil AND with people that have hyper-mobility issues (like Ehlers-Danlos)...but the bottom line is I still have real problems with choking.
I've also been struggling with severe back/hip/SI pain for about 3 years. The kind of pain that makes you vomit and stop eating because it hurts so bad for so long. I do have hyper-mobility syndrome and I was very active up till last year. Periodically I'd wake up and not be able to walk because my hip would be SO inflamed...like crawling to the bathroom to get my prednisone stash and 'self treat' until I could get to a doctor. After a lot of drama, we discovered that I had a thoracic disc herniation (too dangerous to attempt surgery), facet joint problems, and "SI joint dysfunction". We did some RF treatments to a number of the spinal nerves, and when we the RF for the sacral nerves...I stopped having a lot of the hip pain and weird "can't walk" episodes for awhile, although 7 months after the last RF they came back with a vengeance. Not just to one side, not just "occasionally", but now it's almost constant and to both sides. Some days are worse than others but it never really goes away anymore.
Unfortunately, the pain has returned - even with some really powerful narcotic painkillers. I also started having episodes where *I*, as a form elite athlete, felt like my muscles were weak - quads shaking, stumbling on steps, increasing trouble getting up from floor/chairs, etc - but was given a quick once over in the neurologists' office and they said I didn't have any weakness. My doctor finally did an MRI of my hip/pelvis and the muscles are *SO INFLAMED*. The bursa...and the muscles. The hip itself seems fine (no tears, as was suspected). I was sent off to a different rheumatologist, who said that despite the MRI image, doesn't see evidence of muscle involvement - and took some more blood to run some tests I've never heard of.
Pain management says they have no idea what could create an MRI like that other than trauma (been inactive 1 year because of the intense pain, "can't walk" episodes, etc) or DM. It seems like there really aren't many other things that can cause this level of muscle edema and inflammation. You can actually see that one hip/upper thigh is puffy...its disturbing.
So here are my questions:
- has anyone been diagnosed with just skin symptoms/skin biopsy + MRI? I'm wondering...if everything points to something like PM/DM/IBM, but there's no blood markers so far...like, does that it ever happen??
- does anyone have severe pain with the muscle inflammation? Most of what I've read on the subject (and been told) is that the muscle inflammation typically doesn't cause pain.
Thanks for your patience with my little drama here. I'm just...at the end of my rope and still in a horrific amount of pain. I haven't had a vacation in 3 years, because I spend all of my leave on sick time - yet I don't qualify for short term disability. I've hit my out of pocket max the last 2 years - with the health care costs rising next year...I can't afford to have another year like the last two. I'd be willing to sacrifice time and money if it relieved my suffering, but that doesn't seem to be happening. I'm hoping that the MRI is helpful - that it allows doctors to maybe change the treatment and help relieve suffering...but I am terrified that it's just going to be another dead end and at the end of the day I'm still going to be screwed - no answers and no resources left.
I'd appreciate any insights anyone has regarding the pain and MRI as a diagnosis tool for the muscle involvement part of PM/DM/IBM.
I had numerous small symptoms, but was diagnoses based on a skin biopsy of number of crazy rashes i had in the summer of 2010 (fever, bad cuticles, etc.). I had no muscle weakness at the time but a lot of joint pain and fatigue. The skin biopsy indicated either cutaneous lupus or DM - based on the pattern of the rashes and some of the types, I was diagnosed with DM Sine Myositis. I was told to make peace with 24/7 sunscreen, protect my windows, wear a hat, take plaqenil and protopic/topical steroids for rashes. I see a rheumatologist every 3 months who takes blood and looks for obvious red flags and we do some scans to check for cancer at least once a year. All has been good so far - no signs of any muscle involvement. Last battery of tests with that doctor was about 3 months ago.
Last year I started having problems swallowing, and discovered I (suddenly) have severe reflux - I don't feel it, and it hasn't improved with normal GI medication. I've heard it's a common issue with Plaquenil AND with people that have hyper-mobility issues (like Ehlers-Danlos)...but the bottom line is I still have real problems with choking.
I've also been struggling with severe back/hip/SI pain for about 3 years. The kind of pain that makes you vomit and stop eating because it hurts so bad for so long. I do have hyper-mobility syndrome and I was very active up till last year. Periodically I'd wake up and not be able to walk because my hip would be SO inflamed...like crawling to the bathroom to get my prednisone stash and 'self treat' until I could get to a doctor. After a lot of drama, we discovered that I had a thoracic disc herniation (too dangerous to attempt surgery), facet joint problems, and "SI joint dysfunction". We did some RF treatments to a number of the spinal nerves, and when we the RF for the sacral nerves...I stopped having a lot of the hip pain and weird "can't walk" episodes for awhile, although 7 months after the last RF they came back with a vengeance. Not just to one side, not just "occasionally", but now it's almost constant and to both sides. Some days are worse than others but it never really goes away anymore.
Unfortunately, the pain has returned - even with some really powerful narcotic painkillers. I also started having episodes where *I*, as a form elite athlete, felt like my muscles were weak - quads shaking, stumbling on steps, increasing trouble getting up from floor/chairs, etc - but was given a quick once over in the neurologists' office and they said I didn't have any weakness. My doctor finally did an MRI of my hip/pelvis and the muscles are *SO INFLAMED*. The bursa...and the muscles. The hip itself seems fine (no tears, as was suspected). I was sent off to a different rheumatologist, who said that despite the MRI image, doesn't see evidence of muscle involvement - and took some more blood to run some tests I've never heard of.
Pain management says they have no idea what could create an MRI like that other than trauma (been inactive 1 year because of the intense pain, "can't walk" episodes, etc) or DM. It seems like there really aren't many other things that can cause this level of muscle edema and inflammation. You can actually see that one hip/upper thigh is puffy...its disturbing.
So here are my questions:
- has anyone been diagnosed with just skin symptoms/skin biopsy + MRI? I'm wondering...if everything points to something like PM/DM/IBM, but there's no blood markers so far...like, does that it ever happen??
- does anyone have severe pain with the muscle inflammation? Most of what I've read on the subject (and been told) is that the muscle inflammation typically doesn't cause pain.
Thanks for your patience with my little drama here. I'm just...at the end of my rope and still in a horrific amount of pain. I haven't had a vacation in 3 years, because I spend all of my leave on sick time - yet I don't qualify for short term disability. I've hit my out of pocket max the last 2 years - with the health care costs rising next year...I can't afford to have another year like the last two. I'd be willing to sacrifice time and money if it relieved my suffering, but that doesn't seem to be happening. I'm hoping that the MRI is helpful - that it allows doctors to maybe change the treatment and help relieve suffering...but I am terrified that it's just going to be another dead end and at the end of the day I'm still going to be screwed - no answers and no resources left.
I'd appreciate any insights anyone has regarding the pain and MRI as a diagnosis tool for the muscle involvement part of PM/DM/IBM.
I am sorry about your pain. I know you probably wanted results weeks ago with a diagnosis, and correct meds. I will put in a prayer for you. I hope your doctors will steer you in the right direction and help you with the pain.
Keep us posted.
I couldn't get a definite diagnosis until I got a muscle biopsy. I was scared, but got it November 2011. I was full of Polymyositis. Afterwards, I wondered why I was so scared, and I was relieved it wasn't MS (I fell off a curb & couldn't get up on my feet without being lifted up by a strong man).
I didn't do a local anesthetic. I had a general, and woke up feeling okay with a few stitches. Good luck with your rheumy...my is a very good one and works with me in this fight.
Hope this helps a bit...Purr
BK
Treat the DM and all of them may go away. I have no pain unless i am in a flare and for me flares include choking, weak quads and weak hips and hip pain. I get low back pain too. then at my worst i get diaphragm weakness and trouble breathing.
What is the goal of the MRI?? are they looking at muscles?? My muscles didn ot show it either, so we stayed with skin biopsy and at a myositis center they did not do Biopsy of muscle the story told it all.
best of luck to you,
shawna