Myositis symptoms and conditions

I am 16 years old and i have an orbital inflamatory psedotumor myositis, which causes me to see double. It is a condition the doctors are kind of just playing a gussing game in how long i will have to take the steroids. Everyone is different., i have been to many doctors and they have described it to me as an autoimmune disease within my eye and not my whole body. I was put on 60mg of prednisone. I have been taking it for over 3 weeks now. I was sapost to be symptom free within 2 days, but it took me 9 days before i noticed a difference in my vision. I am going on my fourth week now and still see double but not as bad. The prednisone has been absolutely awful. i handled it farley well the first 2 weeks and since then it has been pure hell. I do get bad mood swings,and i really don't mean to act the way i do. People i was once really close to don;t want to be around me anymore. Mostly i think i am frustrated with the acne it has given me. I am completely plastered now all over my face neck and chest. It is really embarrassing. I just wish other people realized how frustrating it is. Its like i wake up every morning and take an UGLY pill. I am really self conscious to begin with and was actually feeling pretty good about the way i looked until i had to start this medication. It really does suck. I can't even imagine what some of you are going through right now after reading everyones stories. My heart really does go out to everyone who has to deal with this, and i will pray for all of you. If any one has the same diagnosis as i do or knows anything about it and how long it takes to be treated please let me know. I am begging to worry because i don't think the prednisone is going to work for me. the doctors are thinking about putting me on methotrexate which i am also concerned about but it is not sapost to make you break out which is really all i am worried about right now. I have already back down from prom after working my but off to pay for my dress,and i really don't want my summer to be ruined. i wake up every day and want to hide in a whole were no one can see me. going to school is really hard to. The girls love to make fun of me and the guys are just kind of turned off from how i look.
How long does it take for the acne to go away after getting off the prednisone.and does it go away as you taper the drug down? also how long does it take before most people develop a moon face? i have a range of being on prednisone anywhere form 2 months to a year. There is a possibility that i will never be able to be off of it.

Hi, my name’s M. and I posted my story on here about a month ago. Unfortunately, I’ve made no progress. I was hospitalized again mid-October for numbness and tingling sensations in my legs, which is a symptom of guillian-barre syndrome and supposedly needs to be treated very carefully. I had an mri of my brain again, this time including my spine to check for possible tumors. I was sent home the next day, negative for guillian-barre, but having received no answers. I was crawling up the stairs by this time, and was too weak to walk without holding on to furniture to support myself. My legs felt like cement blocks, and the neurologist specifically said, “I don’t know why you can’t walk.”
Since then, I’ve developed acute mononucleosis, which increases my fatigue and muscle pain, and causes me to sleep about 15 hours a day. Recent blood work also showed I was positive for an autoimmune disorder called Myositis, which is a painful disorder that causes the body’s immune system to attack its muscles and connective tissue. I was referred to a rheumatologist, who was the least sympathetic person I’ve met in my life, and told me my physical exam was perfect, so she felt the Myositis must have been a false positive. She re-ran the blood work, and the Myositis was negative. This is of course a relief, but how we’ll ever know which test is correct, I don’t know. The rheumatologist did notice the weakness in my legs and my difficulty walking, and suggested physical therapy to help gain my strength back. She also prescribed an anti-inflammatory medication that took away almost all of my pain. Thank God, something finally worked for me. We then saw the physical therapist who said, “We can probably make you stronger, but I’ve never seen anything like this before.”
I’m seeing an osteopathic specialist who is convinced my illness is directly related to Gardasil. Through ancient medicine methods, she introduced a vile of Gardasil to my system and noticed an immediate weakness. I’m not sure if I totally believe in her practice, but the fact that she noticed a rejection to Gardasil the minute she introduced it is enough to convince me. She believes that my immune system was basically poisoned by the vaccine, which is causing it to fight off things I need. She also said it probably doesn’t recognize the mono as an infection, and decides not to fight it. For a normal, healthy person, mono can last up to 3 months. For someone like me, no one knows how long it could last. It was my immune system’s weakness that allowed me to develop mono, and it was the Gardasil that weakened it in the first place. So thank you Merck, for yet another thing I have to deal with.
And that brings us to today. I’ve missed about 30 days of my freshman year, so I’m assuming summer school will be necessary. My high school won’t provide a tutor, so I can only take my core curriculum classes, and am having difficulty keeping up with just those few. I’ve gained some strength in my legs, and it’s a little easier to walk with the anti-inflammatory, but I still can’t walk very far without resting. I’m also taking an anti-depressant to help me focus-hopefully it’ll lift my spirits. Since I received the vaccine, my periods have been painful and irregular. The constant nausea, headaches, and occasional stomach pain/joint pain continues, along with extreme fatigue.
The doctors make me feel like a crazy person who faked this to get out of school. How could I possibly fake nausea for thirteen weeks straight, and pain that kept me up crying almost every night? How could I fake my difficulty walking while it’s causing me to miss both of my volleyball seasons? Before this, I had hardly missed a day of school in my life, and refused to stay home whenever I got the flu because I hate falling behind. I’ve played volleyball tournaments with sprained ankles and chipped elbows, I can handle pain, and I’m not a baby. If the doctors would take five minutes out of their time to try to get to know me, maybe they would see that. And the few who actually take the time to be pleasant don’t listen. They tell you they know, that they understand, but they don’t. They won’t drag themselves out of bed in the morning feeling nauseous and half asleep; they’ll be able to walk into their office without feeling like they want to collapse, and they’ll go home to the people who care about them and will actually be awake long enough to enjoy their company. No one will tell them they’re insane, and the worst part is that most of them won’t take the time to realize how blessed they are just to have the ability to do those things. How can the doctors not have sympathy when they’re the ones who put this poison inside of me?!
I know I’m very lucky compared to girls who have experienced more serious side effects, and am thankful that we were able to make a connection between my illness and Gardasil after the first shot. But I’m living proof of what just one stupid shot can do to you-how can you put yourselves or your daughters at risk of what I’ve gone through? The benefits are not just worth the risk..
My 15th birthday is coming up in just a few weeks, and all I want is to be normal again.

Hi there... I have just found this site and I'm very grateful to everyone who has taken the time to sit down and tell us their story mine is very similar. BELIEAVE me I feel like I am pushing my family away and I'm losing my relationship with the one person who used to make me feel like I was the most beautiful woman in the world.
I'm a 40 yr female have or maybe had a great job that I loved... On April 12 I noticed a small red rash on my lower right leg no big deal went to the Dr. gave me some cream and sent me home well I went to work and by the afternoon things just seem to get bad my legs began to swell and little blisters started to pop up so I went to the E.R. they had no Idea what was wrong with me got me an appointment to see a skin DR. so I went home but the pain from the swelling was so bad I could not walk any longer went back to the E.R. they gave me some pain meds and called in some other DR. things had gone from bad to worse my feet had gotten to big I could not put on shoes and I had bruised completely across the bottoms of my feet they put me on 30mg of PRED. and it seem to be under control sent me home after 3 day in the hospital things were good for about a day or so I thought I would go back to work well that was not a very good idea.... My sister had to come and take me back to the ER where they did 2 biopsies and still have no idea what is wrong with me. so now they put me on 60mg of PRED the rash has gone, lots of scaring on my feet because of the blisters once they broke and dried out but I can live with that....
It's the side effects that they don’t tell you about,
MOON FACE I can't look at myself cause really that’s not me anymore,
WEIGHT GAIN I have always been thick but I can't handle the extra 30lbs I've gained,
MOOD SWINGS are unbearable,
PAINFUL JOINTS, CAMEL HUMP, BLOODY NOSE, BRUSING, SORE TEETH/GUMS, DRY EYES, FAITIGE, and worsted of all
I don’t have a support systems in my life so I'm fighting this by myself everyday, I have 3 kids that I have tried to explain all this to but they don't get it and well my boyfriend he tells me he understands that its the meds pushing him away but if I can't figure away to control this I will lose every thing including my job. I cant even get the energy together half the time to make it up and down the stairs which also comes with the pain of just trying to lift each leg up to climb the stairs, I also have the camel hump which I find very painful, The acne and the hair growth that I have to get wax off once a month cause I feel like a man I feel like a loser and as of the last couple of days I just want to give up I am now down to 20mg per day but I find that I am feeling so sick I cant think straight I hope and pray for each and every person out there that has to take this MED that you get better and I do hope that my symptoms wont come back. Thanks for being here and I’m glad I found this site. I know now that I’m not losing my mind completely. Elizabeth.

I went for a physical in about September of 2000 because i was going to go back in the gym and workout.... Doctor said i was very healthy but did prescribe Levaquin for a small amout of Fluid on one lung he said showed up on an Xray... I think i took two maybe 3 of them but was sick the next day... He worked with me for the next 4 months trying to figure out what happend. Then i finally had to go to a specialist/Rheumatologist becuse i was loosing weight, tired and very tired, no appetite, sleepy etc... finally i was diagosied with Lupus Myositis (not sure about some of the spelling). Anyway i have been battleing with this from Sept. 2000 until now... August of 2007... I do pretty decent most of the time but am tired alot and cant do the things i did before... I am now 45 years old...

I'm a 28yo male. my over all cholesterol was elevated at 248. I am a very healthy person otherwise, and active. My HDL chol is very good. My Dr. had me try to lower my chol by diet and excersise at first for a little over a year, but didn't work. About two months ago he decided to put me on Zocor 10mg. The day i started taking it I felt very tired, weak, very dazed. I told my Dr. and he said it was a likely side effect and to keep taking it. After a week I was still feeling bad to the point where I had to call in sick to work. My Dr. finally told me to stop taking the Zocor and come in to the lab to get my blood drawn. A few days later my results showed that my liver and muscle enzymes were way elevated. My Dr. called me and said to drink copious amounts of water to flush out my system. After about a week of still feeling terrible my liver and muscle enzymes were back down to normal range. That was almost two months ago and still feel terrible. I've been very fatigued,muscle weakness,muscle spasms all over my body,dizziness,very sharp headches, stiff neck,but mostly pressure in my head and in my ears which cause them to pop and ring. My back even got really stiff and sore for a couple of weeks. I've been in such a daze. After 8 hours of sleep when I wake up in the morning, I feel like I've only had about two hours. I've been back and forth to my Dr. many times over the past couple months, and he's started telling me that because of taking a low dose of Zocor for only a week, he doesn't think it was the statin that is making me feel like this and said it could be a virus, and has been drawing blood for lyme disease and mono etc., which have all came back normal. I believe this is ALL from the Zocor!! I think I have drug induced myositis. I am scheduled next week to see a Neurologist. Hopefully he can give me some answers. I hope my experiences can help one of you out there. Alot of Dr.'s out there aren't aware of how dangerous these statins really are!.

I have a condition called Myositis and for the past two years the specialists put me on Prednisone, my condition of myositis is an Autoimmune problem that degenerates the muscles and causes artherites throughout the joints in the body.
I am 58 years of age and survive the chronic pain by taking 5 Mg of prednisone each day along with different types of anti inflaminetery pain killers.
Some days are good and other days require a wheel chair to get around but the side effects of this have caused Cateracts in both eyes, fatty liver tissues and other side effects like mood swings and so on.....

I have been off Lipitor for 1 year and I am not better, but worse. I have muscle problems in my left arm and leg. I can hardly lift a 10 pd. weight without shaking. I also have pins and needles at various times and my breathing/speech has been affected. I believe I have Myositis.

Lipitor is a drug from hell. I take Polycosanol instead of Lipitor.