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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deleted_user 08/16/2011

Of course, as we all know with polymyositis (and perhaps DM. I don't know), the Quad muscles are generally affected (which affects getting up and walking, etc). Well, I'm no exception to that rule. When I was first in the hospital, my walking was actually fine. Granted, I HAD a few falls (which is what led me to leave school and come home to the hospital)...but I walked normally with proper knee extension and all. As time progressed, my walking had gotten worse (this was before they doubled the dose of methotrexate and added azathioprine). My knees now lock when I walk (which isn't good for my hamstrings I'd imagine). I think it's half mental (afraid of knee buckling) and half automatic because of the weak quads...that's how my body has learned to compensate. Has anyone else had any problems with their knees in terms of walking or bearing weight? My therapist is looking into getting me leg braces as a way of helping me walk (of course as a supplement, not as a way of fixing anything. We are still going to work on getting the strength back in my quads but the braces may provide a way of me at least being able to walk more when I DO walk). Man, if I can't even be comfortable with walking...not sure how I'll manage to go upstairs. But I hear stories of others with PM that can go up and down stairs, maybe not many but some. I hope that can be me.

Also. I'm curious. My CK started at 18,000 and is somewhere between 2000 and 3000 (I go to the Rheumy friday, so I'll have an updated CK then). I'm unable to get out of the chair on my own and my walking is as I described. How is everyone Else's mobility?Are you able to get up at all, or walk at all (with or without aid). I have met a person who has DM and isn't able to really get up well on her own, so she transfers...but her shoulders weren't as affected by myositis as mine were. Thanks~

brendacaytonwhite 08/16/2011

I had less pain and was better able to walk in the hospital because they had me an a very high dose of Predisone via IV. I thought that once I got home I would be able to walk as part of my therapy. At first I was able to walk ok and when I went to the doctor or store I would take my walker and sometimes use a grocery cart and still be able to walk slowly, but now that my Prednisone has been cut down I hurt so bad that I can barely stand up and it is weird because the muscle biopsy was taken from my right thigh, but the pain is as pain in the same place in my left thigh and my left knee hurts even worst. I don't get it.

deleted_user 08/16/2011

Odd...I hope they can do something about that and the pain. I guess I got lucky because I don't have any pain with my PM. I didn't even know those with PM experienced it until I started researching more. But again, I hope they can help you so you can walk more again.

lexisgirl 08/16/2011

The highest my CK was is 1500. At that point, I couldn't get out of a chair or off the couch. I had to really struggle to get out of bed. I could walk but it was very slow, with a limp, and I could do stairs but it was very slow and had to have a handrail.

Now my CK is around 130. I still walk slow but I can get out of chairs with a little rocking motion. A big success was when I could get off the toilet without hands. I still struggle with stairs but as long as their is a rail or a wall, I can do it. I can do a single "floating" step (steps with nothing to hand onto). I walk but not far. I haven't fallen for almost 2 years....knock on wood.

I talked to my Neurologist last week and asked her if this is about as good as it gets. She felt I was doing great. I don't know if that is the answer but I got out of it that it might be.

I went to PT for 6 months and have been going to the gym for 2.5 years now. Slow and steady wins the race.

luckybee 08/16/2011

Hi Medoriko
My DM became evident when I woke up one morning and my arms and legs were basically paralyzed. I had to be physically transferred and pushed in a wheelchair for a couple weeks, but it didn't take long for me to be able to get up and walk again when the prednisone started working. My CK was around 10,000 but I've read about and talked to people with a much lower CK level who had much worse problems than I. So, actually your CK level does not correlate well with your degree of disability.

I work in a rehab department with a bunch of PTs, and right away they recommended that I use a cane to overcome the "mental" effect you described, which is simply fear. It gave me enough confidence to unlock my knees and walk more normally. It also helped prevent some falls when the weak quads caused my legs to just suddenly collapse or I didn't lift my feet high enough and tripped on flat ground.

A walker would probably be even better, and either a cane or walker would be easier and cheaper than leg braces. If you have a good response to meds, your strength will probably improve enough that you might get over the fear and be able to walk without support in a few months. Braces seem like an expensive and uncomfortable way to deal with a problem that's likely to be temporary.

I think you should discuss all the options with your PT and hope whatever you choose helps prevent any dangerous falls. Good luck!
~Lucky

MareG 08/17/2011

My PM was caught early. My highest CK was 1000. At that point I was walking with much difficulty, no stairs, and using my arms to get off a chair. That was 13 weeks ago. After being on MTX and Pred since that date I am able to do stairs again. I no longer need my arms to get out of a chair. I am walking very well. I do still have an issue with my knees giving out occassionally, but they have never locked up on me. I am very conscious of this.
We all have different degrees of this disease. You sound as if you are on the right track. I hope this helped.
((Hugs))
Mare

eddiesgal 08/17/2011

My DM began with the rashes for quite a long time and then began affecting my muscles. Couldn't get up from a sitting position, couldn't lift my hands above my head or hold them up long enough to dry my hair. Broke my foot because of my right knee always buckling without any warning and a few other falls that I ended up crawling snakelike to the couch, getting on my knees and then hoisting myself up.
The good news is that I've regained most of my muscle strength through the medications and I feel positive you will too. Blessings,
Kim

deleted_user 08/17/2011

Weakened proximal muscles (core) are quite standard for PM/DM sufferers in varying degrees of severity. Pain is not always involved. Elevated CKs are an indication of muscle loss of function, but every case is unique. Nobody reacts the same way and the same goes for reaction to meds.
It's OK to use walking aids while the meds stop the inflammation, but, as soon as the inflammation is controlled, you should try and get a competent PT put you on a program of building new muscles. Beware of becoming dependant on walking aids.
It can be done; I am the living proof of that. It took 18 months but I am now able to walk, climb stairs, and I am prednisone-free now. I still exercise daily though.
Hang in there!

deleted_user 08/17/2011

I noticed last April that I was walking different than normal. I'm usually extremely light footed and I felt heavy footed while walking. My arms gave away before my legs did though. Mother's Day I was at the park with the kids and decided to cart wheels with the girls and as soon as my hands hit the ground they just gave out. I just sat there stunned because I'm very active having done years of martial arts, there was no reason to me why it should've happened. In June is when it was affecting my legs more. My knees felt like jelly and had swollen up along with my feet. I was tested for all kinds of things but not myositis at that time. I was referred to a specialist and put on a waiting list on given minimal amount of Pred, 5mg, which did nothing. I fell alot, off curbs, walking across a parking lot, picking things off the floor. I can wobble walk through the house slowly. I can't pick myself up from bed or a chair or toilet, only the couch with alot of pulling on the back of it to get on my knees and slowly step down. When I go out, I use a wheel chair. My arms are very weak still. I had to chop off my waist long hair, it was too heavy to wash and brush out, but some kid out there will be happy since I donated it.

deleted_user 08/17/2011

Thanks for everyone's replies. My PT was looking at it as an option, of course temporary but we are looking at all options. We both agree that if we do go that route, we are still going work on building muscle strength back (not going to depend on the braces, if we do go ahead with that). Turns out, after we did some exercises today...my quads are weak of course but not as weak as I had originally though. It seems the bigger issue would be my hip muscles, my glutes and my abdominals. I did a lot today that I didn't know I could, so I guess I should give my quads a bit of credit lol Either way, she has great ideas for different things I can do to get my strength back and so far I at least feel like its more of a challenge than what I was doing at the PT at Rush months ago. So, I'm glad that the therapy is actually intensive. Thanks everyone for your comments and hugs :)! I will keep you all updated on what actually happens.

deleted_user 08/17/2011

Interestingly enough...my proximals are still weaker than before...but, my actual core is fine. I do core classes and exercises almost daily to keep it that way. I lost a lot when I took the prednisone. The down side is...the prednisone will actually cause myopathy that's irreversible. My doc says it happens to professional athletes who are on corticosteroids for extended periods of time...yet another side effect.

My cpk was 3000 when I was first diagnosed. Keeping in mind that I was trying to fight through it by powerlifting...I was actually exacerbating the disease process. I felt like I could hardly keep myself upright on any given day. I would run (or try to) down the hall of my office and almost fall. I thought honestly that I was over training. WRONG. But, with treatment and time...don't forget time! I'm stable and doing great most days. I'm sure I posted this before...but, i've even started spinning!! I do advanced step aerobics and kick boxing...all incorporate core strength training. I think I have better balance than before...LOL!

Hopefully, you'll respond well to treatment and you'll be back to as close to normal that you can be!!

N

deleted_user 08/17/2011

Wow. Sounds like your active, well more active than I am. I have to remember that I've only been sick for 6 months and I HAVE shown improvement since we changed my meds :) So..I am giving it time. If I wasn't showing any changes then I'd be a bit more worried, but I have been so...I'm trying to be optimistic that it will continue. I'm so glad that you're able to do spinning (that sounds like fun) haha

deleted_user 08/19/2011

I can relate to your problem with weak quads and problems walking. I dread getting up from a seated position because I know its going to be a struggle.

My CPK levels started out higher than 40,000 and right now I fluctuate between 10,000 and 12,000. I am not walking well right now. Although my legs and arms are really weak, I feel like the biggest problem is with my hips. Its almost like when I tell my hips to move the message doesn't get from my brain to my hips... I don't know if that makes sense. I cannot lift my legs at the hips and I cannot bend at the waist. But on a more positive note I do feel better today than I have in long time. I know we have some good days and some bad days. But I hope you are getting better as well.

deleted_user 08/19/2011

I see. I have a bit of a problem with my hips as well. Turns out, it may be more of my hips than my quads. I seem to have more power in my thighs than I thought...but it's a work in progress I guess. I guess that's what the therapy is for lol

deleted_user 08/19/2011

I was one of those "unremarkable" blood work and CK...it delayed my diagnosis for years as the doctors hesitated doing the muscle biopsy because my CK wasn't very elevated..thus by the time I had the muscle biopsy I was also dealing with denervation issues...

My hips are give me the most trouble right now, even though I've been in PT since March...I do have quite a bit of pain and it is most difficult to do simple thing as rolling over in bed...I can walk up stairs slowly although it's fairly exhausting....

Hang tight! I'm sure your PT is very dedicated to helping you improve...one day at a time!

deleted_user 08/20/2011

Regarding climbing stairs, I overcame that barrier by buying a foam yoga block called "Danskin Now" at Walmart. It's 3 inches high and big enough to be stable on the stairs with your foot on it. How it works is, tie a string on it and pull it up one stair at a time as you go up so when you step up you're using half steps instead of full. It was still a chore but I was always able to climb the 15 stairs to get upstairs to bed. It took 10 minutes sometimes but I did it'. I also had a spare I took with me when I went out to help me get in the car and up stairs in non handicapped accessible places. You can also use a couple of 2x6 wood blocks glued together but they're much heavier to carry for a PM sufferer.

To ease getting out of chairs I used a foam boat cushion to sit on to boost me up higher. When people looked at me funny I'd mention I had a fear of tsunamis and wanted to stay prepared :). Hope this helps.

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