Rubbing the eye has not caused it. If you rubbed it I am sure it was to try and ease the pain. I have had this 4 times since 1993. When I was in my 20's it was bad too. As I've gotten older the steroids effects have been worse. It,has also became chronic for me this year.

Hi All,
I am 25 year old female suffering from orbital myositis from past 3 years. This is my second time .Earlier I had it in 2010,At that time with steroids only it went away in one year of time span.Now from 2013 My doctor is giving me steroids and from past 9 months I am taking cellcept also. when I am on higher dosage of steroids pain gets reduced and eye lid also lifts up but as I taper it to 5mg pain reoccurs and eyelid also droops with swelling.
I want to know If anyone got permanently cured from this problem. Is there any best doctor fot it. I am from India and really tired of it. I am in pain If anybody could help. Thanks in advance

Hi, Thank you for your post of orbital myositis.  It started in March 2014 with right eye pain and pain when moving the eye. The ophthalmologist diagnosed me with scleritis and put me on Naproxen. A couple of days lated the pain had been radiated to the right orbit and then to the left orbit and gritty feeling in the right eye. In May the same doctor diagnosed me with dry eye and put me on Restasis. i've developed headaches and sinus pain in my forehead, nose and cheek bone and also ear, jaw and teeth pain. When I stopped Restasis some of the sinus pain disappeared. I've done brain MRI and CT, Brain arteries and veins MRI, CT of sinus, blood tests of all kinds, All tests returned negative. I have been in several doctors, neurologist, internist etc for 5 months and still I do not have a diagnostic. At this moment I have mainly a gritty feeling and pain in my right eye and in the orbital bones around the R/L eyes, eyebrow headache in my temples. I've found by myself, just reading medical articles about "Trochleitis". I believe my symptom match with that disease. I really think that it could have already radiated from the eye trochlea to the muscles of my face because I feel pain in my cheeks when I smile and I feel pain in my jaws when I talk. The ophthalmologist has suspected of trigeminal syndrome, but my type of pain is different. Then the neurologist suspected of "atypical facial pain" that it is a diagnostic when the doctor do not find the cause of your disease. I brought to the doctor my findings of trochleitis and he said he has never heard about it but he agreed that it fits my symptoms and prescribed 5days 60 mg oral prednisone and then star tapering 5mg per day until zero. I did not start yet because I do not have any confidence in the doctor. My family doctor told me to try advil 400 for few days before steroids. I have a 2nd appointment with neuro ophthalmologist next  wednesday August 27 and I will ask him about orbital myositis, trochleitis etc. My eyes are swollen only a little. I am 62 canadian recently retired and ready to enjoy life after so many years of hard work. Now I found myself trapped in this everyday all day terrible pains. Please let me know how much prednisone is enough and any other details that may help. I really hope that you have recovered completely. Thank you for your kindness taking the time to read my post.

Glad I'm not alone with this awful condition. Mine started with headache 7 years ago then eye swole and hospital said it was allergic reaction. Happened again 2 years after and finally a eye doc said it was o.m. but didn't give me more info. r another 2 yrs and it flared up again (2010).  Had all symptons together was passed between docs who all thought something diff till I said to my gp about o.m. and he then sent me to eye specialist who finally done ct scan and confirmed o.m. but this took months and meantime I had nothing but pain tablets. Has now been three years and I have had it most of that time in various levels and both eyes. Have had 2 seizures prob due to pain med ( tramadol). At mo I am seeing a new specialist in belfast who is great. He keeps doing tests and sees me reg and actually seems to care I am down to 15 mgs of predisolone and no pain in 2 wks so fingers crossed I get a break now and get preg without having this to worry about. Was preg jan to mar & had no trouble with eye but still worry my miscarriage was due to med on at the time

I feel sorry for anyone who has this condition.
I'm on my first lot of oral steroids and they're already having an effect.
I've been suffering from tension headache in my right eye for a week and it developed into a full blown migraine by Sunday. Admitted into hospital Monday morning from severe debilitating pain and nausea from the pain.
Had a CT scan that showed nothing but after a MRI 5days later, it confirmed it was myositis. It was my first MRI and I got to see the actual image and yes, it looked like a nasty bulge in my right eye. This isn't my first case, I was 15yrs old, I am 29 now and they didn't know what it was - small country hospital. I was given morphine for the pain and admitted overnight. Swelling went down with some ibuprofen. Wasn't till three days and two nose bleeds latter did the swelling completely went down and pain stopped.
It seems like doctors are more aware of O M these days so seek one out immediately when you feel any symptoms. Catch it early.
My heart goes out to anyone that suffers from it regularly. It's dreadful.
Western Australia

In the last 5 years I have had 3 boughts with pain, swelling, sensitivity to light, etc, everything Orbiatl Myositis brings along.  I have been on Prednisone, several times, with the short doses (3-4 days) and a long term (over 6 months).  The horrible side effects that have left me with little immune system, fat, and still in pain.  All of the doctors I saw had no clue of what was wrong and much less of how to treat it.  I was given Methotrexate and the first week was great because it helped but then the crossed eyes and double vision started.  I couldn't drive, read, walk straight and was now miserable with a different set of problems.  After endless appointments with the eye doctor and his suggestion that I start Prednisone again I gave up on their lack of thinking outside the eyeball.  When I asked about getting a B-12 shot to boost my immune system he said that it could cause more inflamation and pain. I didn't listen to him or my regular doctor.  I would rather suffer pain than to get back on Prednisone!  

So, I hit up a healthfood store that offered B-12 shots and I also started taking some generic brand allergy pills and I'm very happy to say that after 3 weeks and counting I have been at 75 -80% better!  This worked for me and hope others suffering with OM will find some relief quickly!  It's horrible to lack the full use of one's vision!  

In December of 2011, I developed what the doctors thought was a sinus infection.  I was put on medication for a week but the severe pain above, around and in my right eye was horrific.  I went to another dr and he ordered an MRI.  He thought I had a brain anuerism (negative).  I went to an optomitrist, neurologist, opthomologist and finally a neuro-opthomologitst who diagnosed me with 6th nerve palsy.  No medicines were perscribed and I was told to wear an eye patch (to eliminate the double vision) for 3-4 months.  Thats how long is takes to heal.  Then in September of 2012  got a cold and by the end of the month my left eye was now hurting me.  I went to my opthomologist and she ordered up another MRI with orbital contrast (she asked for a copy of the 1st one also).  She told me that I indeed had orbital myosistis and I didn't have 6th nerve palsy earlier in the year.  I have had every blood test and all comes up normal.  She put me on 60 mg of Prednizone for 2 weeks and has been reducing it each week.  I am down to 20 mg a day.  And will continue to taper off for another month or so.  I started feeling a cold come on the other day and I'm so fearful that the eye pain will come back even being on the steroids.  It's like others have stated.  When you wake up each day...you're never really sure if it will return.  Having 2 bouts of it, in seperate eyes within 1 year makes me wonder.  Good luck to all out there who have this evil disease.  Only us that have endured the pain that comes with it can truly understand.    

I've had eye pain, pain in my eyebrow and forehead, swollen and droopy eyelid, blurry near vision, pain moving my eye and sensitive to heat and sunlight since having a strep infection in March 2012.  It came on the exact same time as the strep throat.  I've been passed from doctor to doctor with no one knowing what is going on.  I'm in so much pain but there is nothing wrong with the eye itself.  Has anyone else's ocular myositis been triggered by an infection?  

Hi, I had idiopathic orbital myositis for a few months and went to like 9 doctors until it was diagnosed via an MRI with Contrast of the Orbits; a CT scan without contrast missed it by the way.  It is just about cured now.  I was on prednisone for a couple months and am down to just 10mg a day for my last week.  Also, your doctor must be up to date and know that you MUST slowly taper off the prednisone.  If the Doctor stops you cold turkey then there's medical evidence it will flame up again.  Go on it high dose for 2 weeks, then slowly taper as slow as possible, which is key to preventing another flare up.  And I did some other things as well that I really believe helped.  First, whatever direction you look that causes the eye pain, you must try your best not to look in that direction if possible. So, if looking up causes pain, try not to do it b/c it can irritate the sensitive eye muscle kind of like you're overworking an already inflamed muscle; you gotta let it rest to help reduce the swelling.  It sounds simple, but I believe many will find there is an activity that some people do that makes you look in a certain direction that causes pain and possible started it all. Mine was working out on a treadmill and looking up and to the right at the TV's at the gym.  It was weird b/c my pain was ONLY when I looked up and/or to the upper right. So I figured out that while I was doing 30-40 minutes on the treadmill 3-4 times a week, I was straining the heck out of my feeble little tiny eye muscles.  2nd, try Allegra 180mg once a day (I used the Wal-Mart generic stuff). It is an antihistamine. By blocking histamine it will reduce the influx of white blood cells and swelling in the eye muscle and the tissues around it.  Look up "histamine" and how it works to make the capillaries more permeable thus providing a way for the immune cells to get to the muscle. Well, an ANTI -histamine should help block some of the swelling.  Next, try Selenium 200mcg Twice a day religiously.  It was published in the New England Journal of Medicine (prestigious medical journal) that it helped orbital myositis after months of being on it.  It tastes funny, but hey it's worth it. And if you're not allergic to fish, take 4 fish oil pills at night.  The reason at night is because it can make you kind of sleepy.  Fish oil has anti-inflammatory effects.  The Omega-3 is what's in it that helps.  It tips the scale towards your body making natural anti-inflammatory molecules.  Without enough omega-3, your body will use omega-6 and omega-9, which will tip the scales making more inflammatory molecules. The more omega-3 you have in your body, the more anti-inflammatory molecules your body can make.  You can look this up too; the relationship btwn omega-3, omega-6, omega-9, and which one is inflammatory and which one is anti-inflammatory.  Also, it can thin your blood a little, so if you're on a prescription blood thinner just keep a look out for any signs of excessive bleeding, if any.  Also, try to eat healthier.  Saturated fats will increase inflammation in the body.  Fruits are a good choice.  Apples are pretty cheap so that's a good place to start.  Also, black plums are high in antioxidants. Try to eat at least a few fruits a day.  I'm not sure if this sounds like a lot to do, but really I think the hardest part was incorporating fruits into my diet.  Popping pills/supplements was easy though.  Really hope this helps everyone.  

I finally got diagonsed with orbital myosis..  It took several doctors after months of predizone... I also felt like they had no I Idea how to treat it..  The predizone did help but everytime I got off or tapered down.. Had flare ups.. Finally after 7 doctors the eye plastic surgeon suggest a ruematolgist.. I have been on Immuran for 3 months Not as much pain as before.. However it is frustrating living with the pain and every doctor telling you how rare it is...  You kinda of feel like your in a freak show..  No autoimmune diseases or ms all the blood test came up normal and the mri except sweeling of the muscle behind the eye...  so now im waiting and Hoping the immuran will do its magic... I want to get on with my life tired of putting it on hold not knowing how you are going to feel when you get up...  At least i Know I am not alone ...  If someone else  had this and took a different drug please let me know..

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.

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. :(

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.

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.

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

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.

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???

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.

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

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

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