Polymyositis

Just checking to see if anyone else has polymyositis that I can compare notes with. I tend to be very fatigued and it does not take much to weaken my muscles again despite the rest I get and the meds I take. Anyone else going through this frustration?

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I was dianosed with the disease over three years ago and have the same problems and worse. In the beginning I took azathiraprine and reacted to it and wound up in the hospital with a 103-104 fever for a week. My joints all hurt and my legs and ankles swell like they are trying to blow me up for the Macy's parade. I have been on prednisone for the entire time in varying doses depending on my ck level which has gone between 200 and one thousand depending on how much it flares up. I have yet to speak with a doctor that wants to do anything but try other drugs on it. It seems there is no one to turn to for absolute answers it seems to be a best guess situation

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HI, I have dm it is the same thing but it affects my skin. I was dianosed in April of this year. I have been on most of the standard drugs that they try. I have been on cytoxan (chemo) for 5 months now, one more to go. Now I am trying IVIG three days in a row once a month for 6 months. I am on a lowered dose of prednisone 10 mg a day. I had to get 2 Monday thru Friday pills bottles for all of my meds. It doesn't take much to make me want to go back to bed. This disease has even attacked my lungs. Thay are working at half of what they should. A lung transplant has even been brought up. There are more bad days for me lately then good. Believe me it is very frustrating!! It does help to come on this site. My family tries to be supportive but now it has gotten to much for them to handle. My kids are also trying to stay strong for me. It is hard to try and stay strong for everybody else and not break down. I don't know how much more I can take before I completely loose it. Sorry for rambling, and complaining.

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OH JENNI PLEASE COMPLAIN HERE TO JESUS ANYONE CAUSE I DON'T THINK MY FAMILY GETS IT. THE PICTURE YOU KNOW. I HAVE NO DIGNOSIS YET AFTER 3 YRS OF CONSTANT BONE, JOINT, AND MUSCLE PAIN. YOU MENTIONED DM WHAT IS THIS? I GET A TIGHTNESS AROUND MY CHEST WALL WHERE IT IS HARD TO EXPAND MY LUNGS AND I CAN'T SEEM TO GET THE DRS TO UNDERSTAND WHAT I AM TALKING ABOUT. IS THIS SOMETHING TO HOW YOURS FEEL? THANKS AND GOD BLESS

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OH HEY BRIDGET I AM BRIDGET TOO. I JUST NOTICED. I KEEP PUSHING MYSELF TO KEEP GOING AND I AM REALLY PAYING THE PRICE FOR IT. FOR THE LAST MONTH OR SO I FINALLY REALIZED I DO NEED TO REST THEN GET UP AND TRY AGAIN. AS YOU I DO A LITTLE AND THEN HAVE TO REST THE MUSCLES GET TIRED, BONE PAIN ALWAYS THERE WHERE I REST OR NOT. BY NOON I CAN'T GO ANYMORE. I HAVE THIS PROBLEM WITH FALLING ASLEEP ALL THE TIME EVEN WHEN DRIVING DAYTIME. I WAS PUT ON PROVIDIL TO KEEP ME AWAKE. DO YOU HAVE THIS PROBLEM WITH SLEEP ISSUES? THANKS AND GOD BLESS EVERYONE HERE.

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I too have Poly along with systemic scleroderma and 5 other auto-immune diseases. I have TERRIBLE pain and have tried the cytoxan, IVIG, pain meds, methotrexate, fentanyl pain patch, pain meds. I now see a pain specialist who is exploring with my neurologist and rheumy a spinal block that would stop the pain. I just received the DVD and info on it and haven't looked at it yet. I just can't stay on the pain patch and meds forever as I keep having to take more and more and my body gets so used to the new doseage and then it's not enough again.

I have pain the worst in my legs but also have it all over. They say I also have fibro and osteoarthritis along with the poly. The IVIG did bring my CPK muscle numbers down to normal but didn't do anything for the pain.

The fatigue I have is terrible too. By Noon it's like my body hits a brick wall and I'm done for the day. So mornings are my good times.

The methotrexate treatments have been terrible in that I do the injection on Tuesday and by Wednesday evening I'm sick and spend all day Thurs and Fri in bed so sick its terrible. So I haven't done the treatments for the last 2 weeks as I'm giving myself a break. It gets to the point where you ask yourself about the "quality of life". I know when I go to my apt with my docs in May he won't be happy.

Next week it's an endoscopy for all the esophagus and gerd issues from the sclero. It seems there is always something and lately all of it has been in full roar.

I will be posting separately to see if anyone else knows about this spinal block.

Warm hugs,
Peggy

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I was diagnosed first with Fibro early last year. Went on Lyrica, Tramadol, Flexaril which provided some relief but things still didn't feel right and my hair started falling out by the handfuls. So late last year they did the huge blood work-up and diagnosed me with PM. Then we added Methatrexate, Vit.D, Folic Acid and Prednisone. If the Lyrica hadn't already done enough of a number on my weight, the prednisone finished me off! All of the drugs DO help, but at what a cost! I'd like to hear from others of you who have PM and find out how you were diagnosed. Was it by the blood levels only or with the addition of neuro tests and biopsies?
I'm grateful to have found this forum!

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By the way, Bridget, I'm jealous... we used to live in Lakewood! It was the best year we've had as a family!

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Hello. I too have polymyositis. I was diagnosed in 1997. I am a 52 year old female. My main problems are
not being able to get up from a chair, going up stairs, and even stepping up onto a low curb is impossible.
I also walk with a limp on my right leg. I feel this is due to an old herniated disc and the weakness of my hip
from the myositis. I don' t have a lot of pain anywhere, but I do notice a bit of arthritis starting in my left hand.
I just feel weak in my legs and upper arms. I do fall a
lot due to weakness and not being able to catch myself.I take methotrexate and imuran. Hope this helps. What are your symptoms?

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Tend to get tired as we;;. but I work at a job 8 hrs a day. Doing pretty well, all things considered. I also have an added problem of Diabetes. More problems arise from the diabetes than the polymyositis.

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When stepping onto a curb, I make sure that there is something around so that I can help myself over a curb by using a car, of any stationary object, that might be available to help myself over that curb. I sometimes have stiffness in my hands as well. Used to have dysphagia, but getting better. Some breathing problems, but getting better as well.

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