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04/23/2012 05:06 AM

rsd in the eyes

215
215Posts: 16
New Member

Hello , I have not posted in a long time I know everyone has enough to deal with and negativity would not serve a purpose I was starting to accept my disease up until a few months ago . The new opiod medication " nycenta " was keeping the burning in my foot under contlol I began a consistent exercise program of swimming . The endorphins lifted my mood and kept my wieght in check . Then all of a sudden my eyes started to burn and and it only has gotten worse . My gut feeling is I got an infection from the pool and hot tub . Somehow perhaps due to my weekened immune system it was a catalyst to spread to me eyes Feels like shampoo or suntan lotion is in your eyes . Sometimes even on heavy medicine it gets so bad I really cannot take it Makes my foot pain seem like nothing Initially my rsd specialst a neurologist told me it was not rsd and this was just not how the disease spread . He started with 'everyone feels pain differently anxiety make it worse etc . Basically minimizing my symptoms This guy is known as a top rsd guy and to me he was inferring some of this was " in my head . My eyes BURN !! I use eye drops 30 times a day They do nothing for the pain but they feel cool when they hit my eyes so I get a few seconds of relief . Went to a neuro opthomoligist who diagnosed RSD I am sliding downhill , gained 30 lbs a good candidate for a heart attack . I am feeling sorry for myself and consumed most of the time by my eye pain . I truly believe many others suffer worse than me but apparently rsd in the eyes is very very rare I bet no one else on this board has this sympton I feel guilty posting this less than cheerfull message for people who suffer to read You have your own problems Sorry , Robert
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04/23/2012 07:14 AM
revvanbus
revvanbus  
Posts: 2032
VIP Member

Robert, welcome to the group. Please feel free to read past topics and emails. You will find RSD affecting eyes is not as rare as you now think it is. Comes up here regularly. My eyes are very dry and because of that, they get raw and irritated often and occasionally get very goopy. I found when I was using the pool regularly, the eyes were a lot worse. When I had to give up the pool because my immune system could not tolerate the pool and the lockerroon, my eyes got some better.

But your RSD specialist is not downplaying your RSD by saying we all feel the syndrome differently, experience meds, pain, treatments differently. That is a fact, Makes it hard to treat but also means the docs don't know which meds and treatments will work for you. It is all trial and error. Sounds to me like this neurologist knows a bit about our disease. Don't discount him/her so easily.

Sending hugs and prayers that today will be better than yesterday and tonight you will find rest.

Rev.


04/23/2012 11:25 AM
cfthb
cfthb  
Posts: 872
Group Leader
I'm an Advocate

Hi Robert -

Welcome back! And please, don't apologize for reporting any RSD symptoms here - we all have, and RSD affects everyone differently. My PMD has a useful description of RSD - "RSD goes from system to system, severely damaging them before moving on".

My eyes bother me sometimes, too, a lot - but if I had the scale of pain you describe, I'd see an ophthalmologist before assuming it's solely from RSD. Eye pain can come from many sources, including your optic nerves, and you do not want them damaged at all.

Btw, when you said you were taking "nycenta", did you perhaps mean Nucynta (tapentadol)? It's such a new drug, I don't remember anyone mentioning it here. For those who are unfamiliar, it seems like a great drug - it's both a pretty strong opioid (C-II) and a norepinephrine reuptake inhibitor in a pretty simple molecule, making it almost ideal for chronic pain.

Howard


04/23/2012 01:02 PM
215
215Posts: 16
New Member

Hi Howard , thank you for taking your time to reply I did mean to say nuycenta and I am glad you pointed out my mistake . You are completely right as least as my experience goes . Nuycenta is a new drug . I have heard it described as super trapentdol and it is in my opinion a very good option to treat rsd An aside is I have had depression my whole life and was treatment resistant to any and all antidepreaaant until Nuycenta Of course everyone is different but for me there is no euphoric effect . It helps the pain and lifts my mood so much it is remarkable . Unfortunately even after upping my dose it helps a little but I still have burning eyes . I have been to three opthomoligists , one cornea specialist and a neouro opthomolist He told me he believes it is rsd related. Nuycenta has definately and seriously affected my memory but in balance given the help with pain and mood I am gratefull it is availible . Thank you for your concern . I wish you the best Thank you Robert

04/23/2012 01:47 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi Robert,

First, I'm so sorry to hear how much your eye pain is causing you to suffer and how that extreme pain is also affecting your life. It sounds so very painful, and eye pain truly is some of the worst pain anyone can have. I'm very glad you posted both because you need the support of those who really understand and believe you as well as your post can help all of us learn and know of your experience. I just wish you didn't have this experience.

I know that I've read about at least one other person here who has had RSD diagnosed in their eyes, but I don't remember who it was. Howard mentioned seeing an ophthalmologist and that's what I would also do, as they have the most training with eyes and possibly there is something going on that they could help you with. Once I was at a major league baseball game and they had a fireworks show at the end of it and a tiny ember actually hit my eye. The ophthalmologist I saw said that my contact lens almost certainly saved my eye. The burning was so severe that for days I can say excruciating would be the only way to describe the pain. That experience makes my heart totally go out to you right now because when your eye hurts like that you really cannot think of anything else. I do have hope that perhaps there are prescription drops or some kind of treatment that will help you if you get to a good eye doctor, though. Don't go to an optometrist.

The weight issue is so frustrating, isn't it? I was in the best shape of my life when I got the small injury that led to my RSD. I wasn't the thinnest ever, but both felt and looked good and was truly in shape. It was shocking how quickly that took a turn once I started taking Lyrica and gained a LOT of weight in just a few months. Weight is not anything that daily bothers me nearly as much as the pain does, but like you I am very aware of the possible coronary issues as well as others that can come with this added weight, yet it is so hard to lose any of it when I can't exercise much or walk much at all. Many of us here are in that problem with weight and where the truth is it will be extremely hard to take off.

Please think about hanging around our group more. It can be a good place to get the support that is lacking in many of our lives as others don't believe our pain or as we have frustrating experiences with doctors or just help with coping with daily pain. Also, it's a place where you can use your experiences to lift up others who really need what you've learned, so I do hope you'll consider being here more. I'm just so sorry to hear about how bad things have been lately and do hope that it will turn around for you somehow soon.

Glad you came to the group,

gail


04/23/2012 02:29 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi again Robert,

I must have been writing to you when you replied to Howard that you had already seen an ophthalmologist, so I guess you already have. I do hope that somehow you will find better relief from the eye pain. I'm just so sorry that you have to suffer with it.

gail


04/23/2012 04:38 PM
Fletch2ya
Fletch2ya  
Posts: 3183
VIP Member
I'm an Advocate

HI.. all... well I think I have said this before... but I have been having tons of eye problems... And have been to my eye doctor a lot lately... She is convinced that it is the RSD that is the biggest problem... She says it changing the way my blood vessels in the back of my eye expand and contract... I have been having so much pain in my eyes...mostly my right eye.... But then we also have to take into consideration what my meds are doing to me... A lot of my meds are known to cause dry eye, and eye irritation... So... With all that RSD can do.... like Howard said..... It can effect any system of our body.... And for me...it has done most of mine.....

Craig


04/23/2012 06:23 PM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
VIP Member
I'm an Advocate

Evening everyone

I've had problems with my eyes too. My left eye blinks a lot and all by itself, this is the opposite side of my worse CRPS. Almost like it's winking all the time. I do have mirror spread on my left but it hasn't moved up beyond the highest point of my ankle in 2 or so years. I know I need to have my eyes checked just can't afford it right now.

Reading glasses have helped some since they make images come closer.

Warm wishes,

~Twinkle

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