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Old 03-19-2009, 02:48 PM   #1
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polymyositis in remission but still having pains

Hi, i was diagnosed with Polymyositis when i was 11, 15 years ago now. When first diagnosed i had terrible muscle wastage as it took so long to diagnose. I was put on a high dose of prednisolone and gradually weened off them. I have always still had pains in my legs, arms, back and neck and gone back to the gp for repeat bloods to see if it has flared up again time and time again. My bloods come back normal and i am given different anti inflammatories. Recently i have put my foot down and requested more tests done and referred to the rheumatogist. I have had all my bloods done and an mri and everything has come back normal, even tests for lupus are negative. I wondered if anyone else with polymyositis in remission still has pains sometimes very severe and normal bloods, this is very frustrating!! Ive recently been told exercise should help??

 
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Old 06-10-2010, 08:33 AM   #2
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Re: polymyositis in remission but still having pains

I was told I was in a phase of remission and in the last month my blood work has come back normal. I still have a lot of joint and muscle pain as well as being very tired. My muscles also get very tired. I understand your frustration because if this is remission, it's not what I thought.

 
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Old 06-10-2010, 08:46 AM   #3
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Thumbs up Re: I was diagnosed a year ago.

I was diagnosed with non specific interstitial pneumonitis secondary to polymyositis last year. Big fancy words for polymyositis with lung disease. My first symptoms were swollen knees with lots of pain. Within a week the joint pain spread through every joint. I had been to hospital 3 times with 6 weeks and my GP as well as clinics. No one knew what was wrong and just kept prescribing meds. I went for a pulmonary function test and was admitted to the hospital right away, then transferred to a different hospital. I was in a month. They couldn't figure out what was wrong. Finally they figured it out and I was put on tons of meds including prednisone and cyclophosphomide (chemo). Needless to say I'm still struggling. Unable to work, I can excersise but only about ten minutes. I've had one flare in the year and have recently been told I'm in remission. I'm glad I'm in remission but it's certainly not what I thought. I thought I would feel a lot better. Remaining positive has been very important. I may have the disease, but the disease doesn't have me.

 
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Old 07-16-2010, 09:07 AM   #4
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Re: polymyositis in remission but still having pains

Hi,
I have had polymyositis for 8 years now. Have finally found a drug called Cellcept. I am down to 6 mg of Prednisone, and blood levels are finally normal. I started exercising and it has really helped in the pain. So I agree with whomever said this. I feel so much better exercising. I have never been one to to it, and was sort of forced to go to the gym with my 13 year old daughter, but I am so thankful. It has changed my life. I have lost almost 20 pounds in 3 months and my stamina has increased so much I cannot believe it is me. Good luck in your life. I am so sorry that you are so young to have this horrible disease. Take care..

 
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Old 07-28-2010, 08:06 AM   #5
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Re: polymyositis in remission but still having pains

Yes, I have severe pain, worse due to cold weather, and my CPK levels are normal. The pain was also in the same areas as you. I found out that it is common to get another or more auto immune disorders when we already have one. Found out I have psoratic artheritis, and osteo artheritis in neck, back, lower spine. At one time they were prescribing high levels of morophine, almost 300mg a day. I was out of it, tired and sleeping all day, no way to live, husband died suddenly and I decided to ween down on the MS contin and now take only 30mg a day, and something for breakthroug pain. I live in a cold climate, and the Canadian winters take a real toll on me, the pain is much worse, but while it is not so bad I reduce my pain meds significally. I was diag. in 1995.

 
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Old 07-29-2010, 05:35 AM   #6
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Re: polymyositis in remission but still having pains

I don't take anything for the pain but tylenol. I try to stay away from any other meds because I'm on so many. I was also diagnosed with fibromyagia and I'm not sure if its the poly or the fibro that is giving pain because they both affect the muscles. Lately I have had no energy and can't seem to stay awake. I still try to do some sort of exercising everyday even bad days. I really did think reemission would be different and I'm a little disappointed.

 
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Old 07-30-2010, 12:06 PM   #7
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Re: polymyositis in remission but still having pains

pattianne24 how were you eventually diagnosed with your other conditions? I have had so many tests and everything comes back normal. I can be fine for a while and then i can have really bad weeks which is frustrating I have been reffered back to my gp now as the rheumatologist cant do anything more for me at the mo, i have o wait until i have a bad spell again for them to tell me my bloods are still normal! Its like going round in one big circle!
danni j what is tylenol? I am just taking anti inflammatories at the mo but when i have a bad spell sometimes these arent enough.
I too believed remission would be different - i thought i would be pain free!
My rheumy did say that because the polym had destroyed so much of my muscle i still get pains as i need to build them back up! I was diagnosed when about 16 yrs ago! And have 2 little girls to run around after i thought that my muscles would have repaired by now??!!
Has anyone else had this said to them?

 
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Old 07-30-2010, 02:29 PM   #8
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Re: polymyositis in remission but still having pains

I went through a very stressful time, my husband died suddenly and I was stressed to the limit. Years ago I had gone to a dermatoligist to see if I had skin involement. Turns out I has psoriasis. It was not a big problem. I had pain in my joints really bad. Then I could see my fingers and toes changing, the top joints in my fingers were swollen really bad and a few fingers started to turn to the side, my rheumatoligst diagnosed psoratic artheritis. I feel the stress of my life had caused more damage to my immune system. Also, I found that I had alot of pain in my neck and back. My rheum. sent me for xrays and he could see I had artheritis in these areas. I started to feel really sick, my mood was bad and I felt so depressed, I was told I was hypothyroid, took meds and now I am hyerthyroid, it can go either way, you have to have your doctor do regular blood work. My blood pressure soared at the same time after my husbands death. All my life I had normal blood pressure, it got up to 182/108, I could of stroked out. I am now on pills for that condition too. I do have a medical background and so do my girls, so when things aren't right I insist on blood work, ultrasound or whatever to find out what is wrong. Yes, we do go round and round in a circle, what I have found may help me now is to try and live a life as stress free as possible. One has to listen to your body, you can feel when things are not right. I was in perfect health until I was 48, never even taking an asprin. Now I have to try and avoid stress as much as possible. Stress caused more autoimmune problems for me, and can be a killer in other ways. I hope that i have been of some help.

 
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Old 09-03-2010, 05:57 PM   #9
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Re: polymyositis in remission but still having pains

To Meg82X. Tylenol is just acetaminophen. I take it for the fibromyalgia pain. It helps for the most part. I was finally diagnosed after being in the hospital for a month. Prior to that I woke up one morning with a lot of pain in my knees and they had doubled in size. I went to clinic and he put me on anti inflammatory, it did nothing. Went to hospital 3 times for excruciating pain because it had spread through my whole body and I couldn't move. Every time they sent me home with new meds. They had no idea. I finally had an appointment with an amazing rheumatologist and right away she said I had a lung disease, but that was the result of not catching the polymyositis in time. I don't understand why you are seeing your gp. I see my rheumatologist monthly and resperologist every 4 months. You need to see a specialist because you need someone more qualified to monitor your medication. You should also look into doing physio therapy. They can do excersises with you to help with muscles. My doctor suggested accupucture for the pain. I haven't tried it yet but I will. Good luck

 
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Old 09-03-2010, 09:31 PM   #10
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Re: polymyositis in remission but still having pains

Quote:
Originally Posted by meg82x View Post
Hi, i was diagnosed with Polymyositis when i was 11, 15 years ago now. When first diagnosed i had terrible muscle wastage as it took so long to diagnose. I was put on a high dose of prednisolone and gradually weened off them. I have always still had pains in my legs, arms, back and neck and gone back to the gp for repeat bloods to see if it has flared up again time and time again. My bloods come back normal and i am given different anti inflammatories. Recently i have put my foot down and requested more tests done and referred to the rheumatogist. I have had all my bloods done and an mri and everything has come back normal, even tests for lupus are negative. I wondered if anyone else with polymyositis in remission still has pains sometimes very severe and normal bloods, this is very frustrating!! Ive recently been told exercise should help??
Hello, I am curious if you have had your Vitamin D levels check. I am trying a alkaline diet. Fig juice, watermelon, etc. There are lots to choice from. I am also interested in finding by if I have Celiac Disease. This checks whether I can handle Gluten products or not. The answer's are probably in your blood work? I've only started out and still need my confirmation on this disease, probably on the 16th.
Please let me know.
Thanks in advance.
Rhonda

 
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Old 08-24-2011, 12:03 PM   #11
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Re: polymyositis in remission but still having pains

I was just wondering if anyone would give an update on their pain? Im not yet on remission my cpk numbers are still too high from the normal value but it has gone down significantly from what it was. I hope to hear im in remission when i visit the rheum next month...

 
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Old 08-26-2011, 10:31 AM   #12
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Re: polymyositis in remission but still having pains

My pain is getting worse. I also have psoratic artheritis and osteo artheritis, so not sure why I am having so much pain. I just had blood work done yesterday, the doctor suggested going back on methatrexate or prednisone for awhile.

 
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Old 08-26-2011, 12:44 PM   #13
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Re: polymyositis in remission but still having pains

First thanks for the reply and i am sorry your pain has gotten worse. I think the reason for your pain is because of the damage this disease does to the muscles. Exercise seems to help the ache of my muscles.

 
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Old 08-26-2011, 01:00 PM   #14
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Re: polymyositis in remission but still having pains

In my case I have many auto immune conditions. When I think back I have had flares of these conditions due to added stress. This weekend is the anniversary of my husband's death. He was the one who cared for me, I miss him terribly and that has added to the pain issue in me.

 
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Old 08-27-2011, 03:56 PM   #15
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Re: polymyositis in remission but still having pains

I am sorry to hear about your husband. It is depressing to lose your life partner. do you mind telling me a little background about your health? did you learn about polymyositis and then later other auto immune diseases that you have been diagnosed with?

 
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