RSD AND THE EYES, MY EXPERIENCE
Message from KeithMany people ask about my personal experience with RSD and the eyes, which is how my RSD started. Unfortunately there is not much information out there concerning RSD and the eyes. Dr Hooshmand wrote a puzzle on it but I have yet to see any real studies on it or any in-depth articles on RSD and the eyes. In 1974, when I was 14, I developed an eye disease called Uveitis. Very soon after this disease started, I was hit in the nose by a baseball while I was pitching, and it shattered the bone. I know, it‘s a big target, lol. Of course they had to set it and I wore a nose cast for a few months, yes there IS such a thing and it ain‘t pretty. It covers the nose and both cheekbones. It was a wonderful look let me tell you, especially as a High School Freshman, no one worries how they look as a teenager do they? Hmmmm.
Very soon after I broke my nose I started to have severe burning pain in both eyes, especially the left side, as if they were two burning hot coals instead of eyes. If someone came to now and explained the pain that way of course I could tell him it sounds like RSD. It was constant severe pain and my vision was also affected adversely by light, causing me to wear dark glasses a lot of the time and during the worst of times forcing me to sit in a darkened room. This, the nose fracture, we found out later looking back; was the onset of my RSD. Way back in 1974.
My vision had gone to from 20/20 to 20/450 in my left eye and 20/200 in my right. Needless to say this made doing everything much more difficult. Reading and schoolwork were very tough, as was playing sports, but I refused to let it stop me. Not so much out of bravery but out of a desperate need to feel like a “normal” teenager. I know there are a lot of teens out there with RSD who can relate to most of what I was saying. I didn‘t realize at the time that memory problems, concentration difficulties, etc., were part and parcel of the disease that I didn‘t even know I had. I saw all sorts of specialists, all of whom told my parents that burning pain was NOT a symptom of Uveitis and said I was making it up for attention. Fortunately for me my parents never once doubted what I was saying and feeling. I know how lucky I am on that score. Then my sister got the same eye disease but fortunately she did not have the burning pain of RSD. This only served to reinforce the specialist‘s opinion that I was making up the burning pain. (my sister has since had Drs confirm that about the same time her uveitis started, she developed relapsing/remitting MS), I can‘t tell you how often I wished that those “specialists” could feel what I was feeling, if only for a few minutes. Then we would see if they thought it was in my head!
Over the years they got my vision to improve to 20/40 in my right eye and about 20/250 in my left. I had cataract surgery and a cornea transplant eventually but it did not improve the vision. They said it was sort of like putting a brand new blanket over a pile of rocks. And none of these things made the burning less. It actually seemed to make it worse, which now I understand was due to the fact that surgery in or around the RSD site can worsen the RSD. Bright light, overcast days, time on the computer etc., all can make it worse. There are days when I have flares just in the eyes.
Does this sound like anyone else out there? Unfortunately I would imagine so. The eye pain has never subsided and of course the RSD spread after I broke my back in 1985 and the subsequent surgery caused scar tissue which then pressed on the sciatic nerve; causing the RSD to start in my left foot on June 10th, 1992. By April of 1993 it had spread full body or “systemic”. So I have had CRPS for over three decades. Yet I still remember how it felt to grow up as a teenager and then a college student with it. That is why the kids on RSDHopeKids and the teens on RSDHope Teen Corner mean so much to me. I have been where they are but had no one else to talk to.
I have found a couple of other people who have RSD in the eyes. It seems to be pretty rare. I thank God for that because, despite having RSD full body, and as excruciatingly painful as that is … the pain of RSD in the eyes is beyond anything I have ever experienced. It is truly beyond description. Understand that I don’t mean to diminish anyone else’s pain by saying that. The pain ANY and EVERY RSD patient experiences, no matter how widespread or localized it is, is horrible. It seems to stretch us to our limits. But I have learned that that old expression, “God never gives us more than he thinks we can handle” is a lousy one. A better one is Mother Theresa’s answer to that, “I just wish God didn’t trust me so much”.
In March of 2003 I had the Low-dose Ketamine Infusion treatment, the Awake Technique, done in Arizona by Dr Ronald Harbut. This is the method that is done over a period of four or five days in-hospital and so far has the highest success rate of all the ketamine treatment methods. It was amazing. I didn’t expect much going in since I had had this awful disease for almost 30 years at that point, and it was full body, but we wanted to give it a try and he had had pretty good success. I was blessed with 85% relief from my RSD pain and allodynia (sensitivity to touch) !
It didn’t affect my Fibromyalgia, degenerative disc disease, failed back syndrome, etc., but we did not expect it to. We were thrilled with what it did to the RSD. Unfortunately the eyes got no relief at all. They even got worse over the next couple of years. By February of 2005 the relief I had gotten from the treatment had dropped to about 50%. At this time we are contemplating doing a second ketamine treatment, which should occur sometime in early or mid 2007. (I since had a second in-patient ketamine treatment in April of 2007 and then 35 HBOT sessions in 2008).
Since we began American RSDHope my family and I have talked to tens and tens of thousands of RSDS patients and it has always amazed me how strong so many patients are. It is vital at any age to have someone else who knows what the pain and problems are like.
Remember, CRPS affects EVERYONE in the family. It is a wonderful feeling to know that even though our bodies aren‘t perfect, we still can be full of wonderful qualities that we don‘t see but others see in us. Never give up on life just because you have CRPS. There are so many things you can still do, even if you end up on disability; from volunteering at your local animal shelter to working with kids struggling to read, you name it. There are organizations to suit every interest out there all screaming for volunteers who would love to have you come and help for as little as an hour a week even.
Peace, it is all we seek,
Keith Orsini
(written in 2006)
