what is causing my orbital myositis?

my pcp diagnosed me with orbital myostis. i have had 2 bouts with it in the last 5 years. my symptoms include severe pain above my eye and forehead and extreme sensitivity of the eye. The areas above and below my eye, including my eyelid become extremely swollen. he treated me with oral steroids which seemed to take care of the symptoms but he does not know what causes it. i have suffered from seasonal allergies my whole life and my eyes become very irritated, a common symptom of seasonal allergies. i noticed that each time i developed o.m. i had rubbed my eyes over and over because they were irritated, does this have anything to do with it? please help!!!

[Quixotic1]

I don't believe minor trauma is a trigger for orbital myositis.  Has your pcp done a thorough work up for the many causes like thyroid disease, autoimmune diseases, infections both viral and bacterial and the main cause "idiopathic" of unknown "  (out of the blue) origin, or the idiots don't know the pathology, lol.

Beyond recommending this I don't know anything about the illness., Sorry, Quix

[LV159]

I have been diagnosed with orbital myositis twice, ten years apart, once at Columbia Prespeterian in NYC (while nine months pregnant) and once at Wills Eye Hospital in Philadelphia. Both times, after exhaustive testing, the results were that this is an auto immune disease that is "idiopathis", cause unknown.

I know that this is of little comfort, but I have not had a reoccurance since 1993. While 1980 an 1993 were very bad experiences, I cannot complain about the last fifteen years.

Find a very good expert in the field, online, and prepare in the event yo0u have another bout. Then, hopethat you do not.

Best of luck.

LV

[montypie]

Hello, I have had this condition for 15 years and i have also been told by the doctors that there is little research going on with this condition in the UK. I have also been in so much pain and also having to deal with the looks you get when your eyes look so bad is hard too but you have to carry on with life. I have been up and down the country (UK) trying to find someone that can give me a cure but the only person that understands me and is still trying is my doctor (GP). Having a Doctor that whats to help i think is the best way forward. She has screemed down phones, written hundreds of letters just to get help.  I Have never had any eye allergies before this eye condition started but i have always wore glasses and to be honest i did not wear then for a number of years and i think i strained my eyes for many years and was always rubbing my eyes too.  

Try and find a very good expert and keep positive

montypie

[3gals]

I was just diagnosed today with orbital myositis.  This is the second time that I have had it.  The first time was 4 years ago.  Last time, and today, they said the same thing.  They really don't know why I am getting it.  It could be viral.  They gave me a 5 day prescription for Methylprednisolone and told me that I should feel a little better each day.  
The symptoms this time are exactly the same as before.  Extreme pain in my left eye whenever I move my eye (use the muscle.)  It doesn't hurt to touch the area and I have no swelling.  To look at me, you would not know that there is anything wrong.  But, if I move my left eye at all, I feel like someone is stabbing me with a knife.
Right now, I just want to close my eyes and nap, because that is the only way I know that I won't move them!
Good luck.
3gals.

[nonnac]

My daughter (20 years old) was recently diagnosed with orbital myositis after much investigation which proved extremely worrying. Her symptoms were blurred and double vision, extreme eye and head pain and generally a feeling of being unwell and lethargic. I was interested to read your comment about having not wore your glasses for a number of years, my daughter too refrained from wearing hers for a number of years. Makes you wonder???

[JaySue]

I had orbital myositis in 1992 at that time no Dr in my area knew what it was.  I was seen by every type of Dr around. Felt like no one knew what to do for me so they just continued to pass me around.  One Dr even told me he did not know if I would live.  For over 6 months I suffered with severe, severe head pain. (felt like someone cut a hole in top of my head poured gas in threw in a match and put the top back on.) I prayed to dye because I felt like I was just a burden on my family.
I had this in both eyes.  It finally went away.  In 2007 it returned in my right eye, I got lucky and seen a dr who said he had heard of one case of this and sent me to a specialist who knew to give me predisone. It returned in my left eye in October 2010 and I am still battling this.  I am on high doses of predisone now. everytime they try to lower the dose it returns.  I also have paid with eye movement.  I have worn glasses since highschool (I am now 48 yrs.) I always wore my glasses and continue to wear them any time I am out of bed.  I dont know if that has anything to do with it or not. There seems to be more of this now or at least more people who have it.  But like your Drs. mine has no answeres what causes it. I feel for anyone who has to go thru this and wonder what the long term effects are since it continues to come back.  If anyone knows of the long term effects I would love to hear them.

[abbasi17]

i also was diagnosed with orbital myositis in nov.2010. they admitted me to the hospital for three days and they didn't know what was wrong with me. it took three ct scans to diagnose me with orbital myositits. i  too had the sever pain and swelling of the eye lid and under the eye. i have seen 5-6 different doctors and specialest. they had me on predizone 60mg for 2mths. and the predizone did a number on my immune system and my body plus my mind. i might have diabetes due to being on the predizone to long. they still want me to take them but i refused to take them. i  have 2 more wks. left before they think that the swelling may come back. they think that because i still have some of the predizone in my system. i had an appointment with the radiology department and the doctor said that he doesn't think that i have a bad enough case to have radiation.i know sit at the fact is i have eye pain that is diagnosed as orbital myositits and i don't know what to do or how to deal with it.



                                           worried and wondering
                                               claremont,nh

[knapster]

It's actually very comforting to read that other people have been dealing with the same thing I have, as unfortunate as that sounds. I'm 19 and was diagnosed with orbital myositis three years ago. Like the rest of you, I suffered the agony of MRI after MRI and the uncertainty of what I had. When I was diagnosed with orbital myositis in my left eye I was prescribed to 50 mg of prednisone. The tapering of the prednisone did not go well however, and each time my doctors tried to taper me off from 10 mg, my eye will inflame again. Obviously prednisone is not a medication people should be on for long term treatment so about a year ago my doctors put me on 17.5 mg of methotrexate. I haven't had any problems since being on it. They are looking to taper me off of it this summer, Hopefully it will all go well and my eye wont re-inflame. Again, the glasses comment, I too didn't wear my glasses for a while and I have pretty terrible vision. I wouldn't be surprised if eye strain was a common factor.

[thekaskid]

I am currently going through my 4th bout with this horrible beast. I am a 24 year old male and my first occurrence was 7 years ago, it was so bad that I had to be hospitalized for 5 days because nobody knew what it was or how to treat it. Since than I have become familiar with the symptoms and how to treat it. My symptoms are, horrible pain, immense swelling, sensitivity to light, & restricted eye ball movement. Prednisone eye drops 4 times a day for a few days than ween them back as the swelling and pain decreases. I have horrible vision (-7.5 in both eyes) and I am a graphic designer, so I spend the majority of my time staring at a computer screen (which I know doesn't help). I hope this helps anyone who suffers from this, or can help someone who is.

[amschaar]

my 13 yr old was diagnosed with Orbital Myositis. It is not just eye strain.... she has perfect vision and has never worn glasses. It is an immune system mistake and a condition that is chronic. no cure. just ways to reduce the inflammation. She is having her second episode..she is now 14... she is miserable and wishes it would all just go away. I wish I could tell her it would. :(

[vonda1965]

I had orbital mytosis 3 times in my life, the first in Dec. of 1993, the 2nd in July of 1996, and the 3rd in April of 1999. The first and third lasted 4 months each time and the 2nd time lasted 8 months. I was told the 2nd time there were 6 known cases,,,I guess there are a lot more now ,,,,I always worry every time I have pain right above the eye.