Hi - I was diagnosed with polymyositis at the end of October, less than a month ago. My doctor has me on disability until the middle of January. I have had rheumatiod arthritis for over 8 years and fibromylagia for over 3 years. Those I can deal with. They have the good days and the bad. The bad days come with bad weather. The PM was diagnosed, I would say by accident, when i went into the emergency room for what I thought would be a pain shot. They did give me toradol and dilodod (not sure of the spelling) and both barely touched the pain. I ended up being admitted because my heart rate was a steady 150, even though I was laying there watching the world series (I don't remember who won). I was also diagnosed with a staph infection in my blood. The next week was basically a blur. I had been home for a over a week when I was at the pain management doctor's office when I asked what I was diagnosed with. I was told but it wasn't explained. The next day I googled it. Boy was I surprised. I think the doctors (I am currently seeing 4 of them) wanted to take care of the staph infection first before they tackled the PM. The IV line was removed from my arm four days ago. I have an MRI scheduled this Wednesday (3 more days) for my neck, chest and shoulder. The Monday after Thanksgiving I have an appt with the rheumy.
I felt I should give you a history so you can understand. This just has me devistated. Yesterday, for the first time, I had a hard time getting dressed. Then I wanted to change my clothes because I didn't like what I had on, and I struggled again. I teach 1st grade! I have a hard time turning my head. I wake up with screaming pain all across my chest. Today I could not pick up the tv remote. The pain is almost all on the right side. I am even having problems when I pick up something with my left hand. I have plenty of pain meds (morphine, neurontin, etc). I try to take the minimum.
I am trying to accept this but I can barely do anything. I struggle to drive, I struggle to pick up a dish or a glass.I have lost more than 10 pounds since coming home from the hospital. I really don't know how to deal with this. Nobody knows what it is. There isn't much to read about. When I do find something to read about this I read things like "remissions are rare". I can't do this! I am only 46. Even crying hurts the muscles in my chest. I don't want to do this. How do I handle this? How do I live my life? What will my life be like? I live by myself. Please help
Please know that your first flare is always the worst. You are dealing with a whole new energy level and ultimately understanding yourself all over again. I'm sure you went through a stage like this with fibromyalgia. Please know that the meds, while they can be a beast in and of themselves, they WILL work. You WILL feel better. Believe that. It does take time. It brings a whole new meaning to patience. . . . but it will pass. You will regain strength and mobility. Gotta keep positive though. Letting this overwhelm you is not going to help. I felt like that at the beginning and it was a very dark place. I had to focus on all of the positive around me even when I didn't see it really. This will get better :)
Thanks Selina. I found out this week that the joint where the clavicle meets the sternum(sternoclavicular joint) is infected. One of the bones is also infected. I have been so very tired. I will have another MRI in about two weeks to see if there any changes in the bone and joint. I have a dr appt on Dec 22 to get the results of the MRI. I met with the surgeon this week. If there is fluid he will remove it and culture it. Depending on those results he may remove the joint. Not looking forward to that. But at least I know what could happen. It would be hard on me id they all or the sudden said, we have to do surgery tomorrow.
On the other hand I do have some good news! My muscles are calming down. I am off the morphine. I am on oxycontin and lidocaine patches. I am off of work until mid January, that is unless I have surgery, then it will be longer. Driving can still be a challenge as well as getting dressed. I have given up vacuuming! I have slowed down but only to a slower speed, not a complete stop. I rest when ever I feel the need and take naps when I need to. I am definitely not feeling young, like I used to.
So funny you mentioned vacuuming. It was something that bothered me at the beginning too. . . I used to try but pushing and pulling the vacuum was just too difficult. . . I gave up too. I realized it didn't matter.
So glad to hear that at least you have a treatment plan. It's nice when the doctors know what is going on and are ready to fix it. It sucks when they're clueless. So, I'm glad they are helping you.
Also nice to hear your muscles are calming down. Things will improve slowly, but they do get better. At this point, it's just appreciating pain free minutes, hours, days. . . soon they will be weeks, months. . . We will get through this :)
Yes, Selina - We WILL get through it. It may take a while but once I have my mind made up, I am pretty determined! I just need to work on being patient.
Life does get much better as you learn to live within the guidelines that your illness sets out for you. Getting onto a good medication therapy program that works for you will help you to feel better. Also researching and knowing as much as you can about your specific form of myositis helps.
I have been ill with jo1 antibodies for 27 years, and although my illness is chronic, I have learned to exist within it.
I am a teacher as well and my first flare kept me out of work for two years. But I am happy to say i am back teaching and I made it through the first semester. Although it wasn't easy, I made it! You also are entitled to accommodations at your place of work. I know typing was hard for me when my arms and hands got really bad. I hope you get help in the classroom from a classroom aide or parent volunteers. Hope you are feeling better.
I go back to work on March 1. I have anemia from chronic inflammation. Because of the recent infections, I am only on pain meds. I am currently in water therapy, which helps, but sometimes I hurt like no other. I am afraid of going back to work and the demands. I am good for a few days and then I crash. I have been more than exhausted. I sleep 9 to 10 hours a night and sometimes take a nap when I over do it. I am trying to get the endurance back to be able to work. I have been trying to stay busy but it is hard. I have a physical a week after I go back to work. I should be completely exhausted then. It will be interesting to see what happens then. I just can't go on with this fatigue
I hate that there are people feeling the same things (and much more) than I am feeling, but it sure feels better not to be alone. I was diagnosed this month and before I was, it hit me hard. I was 6 months into a tough Radiography program at the local college and doing clinicals at a local hospital two days a week all day. I waited for 2 and a half years to get into this program so when I had to quit it was very emotional for me.
So now I'm on Prednisone waiting for it to work. I hope you guys don't mind me tagging along on your ride :)
Nicole - I am GLAD you are tagging along. My sed rate had been in the high 90's and then it went down to the low 40's. A week after going back to work it was up to 67. I am exhausted but it is slowly getting better. I can't take prednisone because of prior damage to my adrenal glands from being on prednisone for the RA. I am waiting to hear from my rheumy about starting on methotrexate. She wants ok from the infectious disease doctor. I don't want o be on it again but I need something. If we stick together we will be ok.
Denise how is the classroom going? As a fellow teacher I sympathize with you. I hope you have some amazing parent volunteers. Thanks for keeping us posted on how you are doing. I hope your SED rate goes back down again.
I hope the methotrexate helps you, I've heard good things about it. I'm with you, stick together, because I'll tell you, nobody else seems to know exactly what it's like unless their in it!
Denise Hribar said:
Nicole - I am GLAD you are tagging along. My sed rate had been in the high 90's and then it went down to the low 40's. A week after going back to work it was up to 67. I am exhausted but it is slowly getting better. I can't take prednisone because of prior damage to my adrenal glands from being on prednisone for the RA. I am waiting to hear from my rheumy about starting on methotrexate. She wants ok from the infectious disease doctor. I don't want o be on it again but I need something. If we stick together we will be ok.
The methotrexate hasn't done much yet. I am so past exhaustion. I worked yesterday, took a nap, went to therapy and then took another nap. Tonight was Open House. Boy, am I glad that is over. A few weeks ago, while at water therapy, i was in the pool and the back of my ankle hit the safety bar in the deep end. I have tendinitis in many places, including my Achilles tendon. Well, I smacked it hard and strained it. It swelled up and I was unable to wear shoes. The ortho doctor has me in a walking cast because I have a hard time putting weight on it. I say the rheumy two days ago and I continue to be anemic. I have been anemic since October. She says it is from the inflammation. She said that the iron level in my blood is good.
I just wish I could climb in bed and sleep for a week!
Sorry to hear the methotrexate hasn't done very much to help:( Always thinking about you and am amazed you've been able to stick in there and work with 1st graders! I hope your achilles heals quickly. Thinking about you in Cali.
Just checking in on you! Did you start the methotrexate yet? I started a little over a month ago on the pill form and my prednisone has been tapered down to 15mg/day now. Still week and have some pain and major fatigue, but I know it's helping because my numbers are way closer to normal now.
I did start the methotrexate in April. I had a massive flare at the end on July/beginning of July. I went back to the doctors and she put me on the medrol dose pack and added leuvacorin. In the mean time, something has happened to rt right foot. I thought it was broken. I had an x ray yesterday and it is not broken. It is quite painful and has obvious swelling. I see the ortho doctor tomorrow. My prednosone use, the medrol dose pack, had now triggered my endocrinologist to be back on board. I was supposed to be off steroids for a minimum of a year, from last August. I have been on steroids twice. The concern is my adrenal glands were barely functioning a year ago and the fear is they have stopped working, causing me to be adrenal insufficient. That appointment in on Thursday, two days. In the meantime, I am trying to rest with my foot up to decrease the swelling. It is hard sitting and resting, it is a challenge to my personality! . Thanks Nicole.
Nicole - How are you handling the prednisone? It is a wonder drug with horrible side effects. What else are you taking?
Oh wow, I'm sorry to hear that!! I hope for the best with your appointment!!
I'm doing great with the prednisone, the side effects have decreased a lot since I've tapered. They were horrible, my face was HUGE! I still have a lump on my upper back, lower neck area. I'm taking the prednisone, methotrexate, andronate (I have bone density loss since being on the prednisone), and folic acid.