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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okapi2 03/29/2011

I'm wondering if anyone else has this problem, and if there's a way to stop it?

I have always had problems with my hands and feet getting extremely cold, even when it's not very cold outside. My right index finger will turn white and get so numb, it gets in the way of things I want to do! Lately though, this has gotten worse, and now my toes will turn white and purple and feel like they are FROZEN! Last night I couldn't even sleep because my toes hurt so badly! They are also really sensitive to heat, I have to hold them out of the bath.

Just wondering if anyone knows what to do? For all I know, this is completely unrelated to the disease. I tried socks, they sometimes help, and I tried wrapping my feet in a heating pad, which usually just hurts.

Oh by the way, unrelated, but-- I was watching a rerun of the show House the other day, and they mentioned polymyositis.. haha! That's the first time I've ever heard someone (besides me) bring it up.

jfreeze0 03/29/2011

First off, I too heard that on House and I thought wow, I have a disease that gets on House! How cool is that? I always thought Dr House could have diagnosed me sooner.

But in relation to your concerns, that is called Raynauds (the whitening and freezing fingers/toes). It is definitely related to your disease and as far as I know, no, there's nothing you can do about it. When it happens, gently warm up your appendages (that's why the hot bath bothers you). My fingers and feet are purple most of the time, though my Raynauds is actually not as bad anymore. I used to get the white/purple/red fingers quite often, and now I don't. I have no idea what changed.

deleted_user 03/29/2011

I have the same thing. Yes, it's called Raynauds and your hands and feet can turn white and can go numb. I've had it since last April. This was the first indicator of dermatomyositis. There is not much you can do except for staying away from cold things. I take a pair of gloves wherever I go, but my feet are usually always cold. I heat up my beanbag in the microwave and use that on my feet, it does help!

cocowyo 03/29/2011

I agree that it sounds like Raynaud's, but I want to encourage you to see a doctor ASAP. I don't want to scare you, but it sounds like your circulation is severely compromised and you could be facing amputation if you don't get this taken care of right away. Here's a link to a discussion on the Raynaud's group that made me think you should see a doctor ASAP: http://www.dailystrength.org/c/Raynauds_Disease/forum/11386574-really-overwhemed

cocowyo 03/29/2011

P.S. - A doctor can prescribe blood pressure medication to improve circulation.

deleted_user 03/29/2011

I have it too and mine was diagnosed as Reynauds. I take a blood pressure pill but I don't really find it helps all that much. I live in Canada and were I am it is fricken cold. I didn't even go out much this winter cause I freeze so fast :(. I always wear mittens and boots but have had a lot of trouble this winter with my toes. They look like they have frozen and all the skin peels off the tips. I too cannot put them in the hot bath. It sucks I know. I am counting the days til summer arrives and I don't have to dress like a bloody eskimo! (nothing against eskimos :)

jfreeze0 03/29/2011

You mean the Inuit, right? :o) You should move to sunny (well, not in the winter - rainy?) Vancouver, my friend. I don't think blood pressure pills help with Raynauds. It's never been suggested to me to take anything for it, but it's severe or painful then yes, you should consider having something prescribed to control it. I'm assuming everyone is talking to their doctors all the time. :o)

deleted_user 03/30/2011

Yes, I have this. My toes get so bad I lose the skin off the tips. I have asked both my docs and they blame prednisone... What type of doc do you see for Raynauds? BTW, mine comes and goes, much worse on colder days.

deleted_user 03/30/2011

Is this strictly a dermo thing or do any of my poly friends suffer from this? Prior to me getting poly I was on and I'm on thyroid meds. However ironically it has improved greatly. Who would have thought? My hands and feet seemed to stay cold and sometimes my feet felt like they were frozen from the inside out. I haven't felt that seems I was put on prednisone or at least that's what it seems like. I will be posting a one month update to my nopaela blog shortly.

jfreeze0 03/30/2011

Hi, I had Raynauds for years before the PM surfaced. I think I had it for about 4 years beforehand. I was told not to worry about it (by my family doctor).

jfreeze0 03/30/2011

CaptBob - I don't know why your doctors would blame prednisone - it has nothing to do with the prednisone. Like I said, I had Raynauds for years before I ever was symptomatic of anything. It is something that comes part and parcel with these stupid autoimmune diseases.

deleted_user 03/30/2011

Raynaud's almost for sure. If you have an autoimmune disease already, it's very common. If you don't and you're experiencing this you should definitely be worked up. You could have a vascular problem. It's pretty easily treated with BP meds. If your pressure is already low, you may not be a candidate...but, most folks do well with meds.

WEAR GLOVES and SOCKS!! I hate that ...but, it's a necessary evil. The key is to keep your hands and feet warm all the time so they don't reach the point of white and numb. Mine used to turn the most god awful color of dark purple. Started in my left index finger. I got really bad after about a year after my polymyositis/mctd diagnosis.

okapi2 03/30/2011

Thank you everyone for the suggestions!

Hmmm I have had this for as long as I can remember, and I got PM about 2 years ago. I also have thyroid disease and always figured it was related to that.

I am doing the Marshall Protocol (MP), so I am already on blood pressure medicine (benicar). I noticed the cold fingers/toes got worse when I began the benicar. Actually, my blood pressure is super low right now (around 90/45). I'm sure it's connected.

So far, socks and gloves seem to be working the best, and since I have to avoid sunlight anyways (also part of the MP), it works. I wonder why Raynaud's occurs with these diseases?? So weird.

pluggingon 04/03/2011

Not only do your fingers and toes hurt from the cold, but if you don't get your circulation going you can get digital ulcers. I know whereof I speak! They can take months and even years to heal. One website that describes them says: "If you haven't experienced digital ulcers, you have no idea how painful they are." Blood pressure meds, particularly calcium channel blockers like Nifedipine, open your blood vessels and are supposed to be helpful. But the medication that is most effective is Revatio (Viagra). It works.

We had 97 degrees temperature yesterday, but I still have to wear a mitten on my left hand. Air conditioning is awful! I sleep with mittens on my hands. You have to keep your whole body warm when you have Raynauds. I could not deal with Canadian winters anymore. Hope you get relief soon.

pluggingon 04/03/2011

deleted_user 04/03/2011

Since I started getting sick and they suspected DM my Rheumy kept asking me if I had cold hands and feet everytime I saw her. Funny thing is I am now starting to experience the coldness in my hands and feet. Sometimes they hurt so much too!!!! It was Raynaud she mentioned. I am already taking meds for high blood pressure and thyroid so not sure what will work? I see my Rheumy on friday and I will mention this too her and let you guys know what she says!!!!

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