Hi everyone, well been down with my eyes again, a Flare from hell!!! have been getting a series of stellate ganglion nerve blocks which are helping, my neck is so sore but heck I will take that over the eye pain. Had my 4th block yesterday. Am hoping that the eyes stay calm for a while, Ithink that for me, those hurt the worse of all my other RSD spots. I wish there was something else for us, the not knowing when I am gonna have a bad flare is the worst. Anyways just wanted to leave a quick note, say hi, and hope everyone is coping.
The following user gives a hug of support to kelly4004: Angelrsd (12-03-2011)
So, why didn't you have the blocks before when you had the bad flare? Did you still have the same symptoms with the starfish iris? OR was that something else? I'm so sorry. I know how much you were suffering last time. Is there anything else they can do? Are the blocks working? How many/how often do you have to get them? When did it start?
Before, I went to a doctor for my eye, and that doc said it was pink eye, and if it didnt clear up in 2 weeks then to make an apt with optomotrist. So after 3 weeks I got into see the eye doc and he said no not pink eye at all but uveitis iritis, gave tons of eye drops, and when it didnt clear was discovered that the irits was caused from swelling in my optic nerve caused by RSD. So after prob 2 months from being mis dx with pink eye, the flare started to calm down, then when it popped back up the end of july, we knew what it was and started with the blocks. One block every 3 weeks, doc still wants to do a few more next one set in the first week of November. Also during all this I lost my health insurance and applied for medicaid, and am so thankful that my pm takes medicaid for existing patients. My PM doesnt want to put in another stimulator because my RSD spread to my incision sites from the last one. So I will just do the nerve blocks they are now finally working.
The following user gives a hug of support to kelly4004: Coffee4J (10-09-2011)
I began having pain, swelling, blurry vision and sensitivity to light about a year ago. It has not been constant thank goodness. I went to the eye doctor and told me that the RSD is affecting my eyes causing the pain and swelling putting pressure on my optic nerve, causing blurry vision. He prescribed eye drops and reading glasses to use when I have the flare ups. Now if I where them during my flare ups everything is close and blurry. What have you been told and prescribed?
Sorry to hear of all the problems. Thanksgiving is usually a happy time of year. Have a question on the eye flare? Woke up this morning with feet burning in...well. You know. This evening my left eye started to hurt on the outside edge. Nothing major at first, thought I had a lash in it. As the night as worn on the pain has increased. Feels like I have a bruised area there that hurts everytime I blink. Nothing looks out of place. Just wondering if this sounds familiar to anyone.
That said, I wish one and all Happy Thanksgiving. I know it gets hard at times to remember what I am thankful for, but I know there are people, starving, freezing, living in pain and fear out there. I am thankful, for what I still have. My friends and family. And the warm people I have met here, that sadly are taking this journey with me. Your words of support and the information here has truely been a blessing. If I could have asked for any blessing with this curse, it would have been all of you.
The Following User Says Thank You to knave For This Useful Post: Angelrsd (12-03-2011)
Hi everyone, sorry ive been gone so long but things are going from bad to worse for me really fast. I have been getting stellate ganglion nerve blocks for my eyes. Well the last block was horrble causing severe pain which put me in the ER, they did a cat scan and I had gotten an infection from the block, oh lucky me, the cat scan also found a mass in my chest, which iam having surgery at moffit cancer center to see whats going on, this wed. I cant have an mri because of my stimulator, so now I must risk more spread of this beast to see if on top of all else I have cancer also, am so tired of being tired I dont think I can deal with another disease rsd is all consuming, and now my blocks have been stopped until the mass issue is resolved, if only I had this kinda luck when I play the lottery hope everyone is well and had a good thanksgiving
Hi klana, yes the infection has cleared up, my eyes are not so good my pain doc stopped the blocks until all this mass stuff is cleared up. The mass is behind my collar bone, between my coratid artery and my subclavicular vien the docs need to see if its growing around these two viens but since I cant have an mri they need to go in and look, and they need to biopsy it to see if it may be cancer.r I will let yall know what they find, how have you been?
The following user gives a hug of support to kelly4004: Shelbie (11-27-2011)
Well, I've been doing better than you, but have had a rough month crps pain wise. It has calmed down the past 4 or 5 days which has been good. I am getting ready for my ankle replacement a week from Tues. Going in a day before to get the epidural started to hopefully help the crps from wreaking havoc post-op. I feel like my pm dr. And OS have a good plan. A bit nervous about what could go wrong type of things since this year I've had blood clots, osteomyelitis, MRSA in the back from the SCS, spread of crps after the osteomyelitis surgery, that kind of stuff.. Excited about a new ankle and hoping it will help reduce my pain significantly. I figure the crps can't calm down if my ankle is so messed up it is constantly sending pain signals.
Keep me updated when you can. I will keep you in prayer. ( hugs)
hey kelly. its been awhile. i see that you are still having issues with rsd in your eyes. If im correct dont you also suffer migrains ? I do and also suffer eye issues. when i sw PM like you advised they said it could be RSD. I take anti inflamatories (sorry rsd has killed part of my brain so spelling stinks) it helps calm my eyes down, and it hasnt gotten worse.(thanks). I was just wondering if you take any anti inflam.... and if so does it help at all?? ohh and to clear up previous comment . i see a pain shrink and he is sending me to a neuro shrink and they said that RSD or mostly chronic pain causes parts of the brain to die .. i confirmed this with a popular rsd help foundation.. (just another gift from the beast that is rsd)
hi pain man yes I have anti inflamitory eye drops, plus the nerve blocks would help, the drops not so much, they have stopped the blocks until this mass is figured out, I was suppose to have a biopsy guided by ultrasound, but the mass is to far bhind bone, the cancer doc now thinks the mass is in my lung, I am goin for a new cat scan of my lung on monday, ugh I just dont know how much more of this I can handle before my mind snaps, my mind is swimming, my beau tiful husband is scared and worried, I see it in his eyes how he looks at me just a little longer than normal, it breaks my heart to see him scared, but trying to hide it from me, I feel like I am in some kind of crazy limbo, one step away from total insanity, sorry so dark, I seem to have run out of silver linings,
The following user gives a hug of support to kelly4004: K_Lana (12-03-2011)
Kelly, I am so sorry to hear that you are in so much pain. I just joined this message board and hope that I can help just by listening. I have had RSD in my right foot and ankle for a few years now. It is such a evil disease. I am hear to lean on if you need to vent. I know that once in a while it is nice to talk to someone who understands what you are going through. I truly hope you have a good day. I will keep you in my thoughts and prayers.
Kelly, I am so sorry that you are still in limbo waiting to find out what is going on. Why can't they just do a biopsy already? I know they thought it was too far behind, but can't they figure out how to get to it?
(((hugs))) I will continue to pray for you. Thanks for keeping us updated.
Originally the docs thought it was a mass in my tissue, but when they saw it on the sonogram, they now think it is actually in my lung, the want to do a cat scan of my left lung, with contrast. The first cat scan was actually done in the er wen I got an infection from the last nerve block I had. It just happened to pick up part of the mass. The sonogram allowed them to see it was much different then they first thought. So monday I will find out if its lung cancer. And nice to meet you angelrsd, thank you for your support
The following user gives a hug of support to kelly4004: Angelrsd (12-04-2011)
kelly. so sorry to hear about this mass. it must be putting you in a great deal of stress and therefore flares to cause pain.. I will pray for you. as if this beast called RSD isnt bad enough. we are here for you. if that is any comfort. and dont fret about not seeing silver linings all the time. its not always visible . never apologize for how you feel. this is what this site exists for..... good luck tomorrow soft hugs a lotsa love