[penney]

Hi I have had RSD since august of 09 it started after surgery on my foot, it has spread to all limbs, both hands and feet, I have awful headaches. I use to be able to eat anything I wanted and when I wanted, and did'nt have stomach trouble, but now so many things I cant eat any more and I throw up alot now. Also when I wake up if I'm lucky enough to get any sleep I can hardly open my eyes, its not my eyes its my eyelids, it is so painful until I pry them open I.ve never had pain in my eyelids before. Has any of you had the 3 day ketamine infusions done, I just got home a week ago from having it done in Fl. I don't know yet if it is going to work or not, the Dr. said it may take up to 3 diffrent tries before it really works I sure hope not it is a horrible thing to go through just to try to get out of the hell of all this pain. Oh also are any of you on the new drug Nucynta it helps me sleep a little better and does help with the pain some. I think it is in the morphine family. I know RSD effects everyone diffrently but any advice or comments would be so appreciated. Thanks and rest well Penney

[reruho]

Penny,
It s good to hear from you, it has been a while since you last posted. RSD can affect your internal organs. I will talk to a friend of mine that has RSD in her stomach. and see how it affects her. I do know she only eats about once a day and has a lot of problems with reflux and GERD. I think she takes Reglan.

I have dry eyes too. I have times where I Have been awaken at night because can't open my eyes because it feels like my eyelids are glued to my eyes. Check your medications, almost all of them list dry eyes /mouth as a side effect. Anything that drys your mouth will dry your eyes. I use a couple of different eye drops and an eye ointment at night. I use Systane, Optiva and Blink eye drops. I use GenTeal eye ointment at night and in the morning. I like the GenTeal because it has a longer lasting effect. It does blur your vision for a minute or so.

You need to use some eye drops because this condition can affect your vision.

I hope the ketamine coma helps you. I have friends on another forum that just went through one and is reducing her meds as a result/ I hope it works for you.

I have not tried nucynta. My PM prescribed it earlier this year but I could not take it because of my problems with my gallbladder. I returned the prescription and explained my reasons. I had asked for something else since the Vicodin makes me feel like I have a hangover. I am happy to hear you are getting some pain relief. If it helps you to sleep, that is GREAT because we all need sleep.

Did you see Dr. Kirkpatrick in Tampa? I have seen videos of him. He looks like he is a nice guy.

Reta

[penney]

Hi Reta Thank you so much for your response, I will try the eye drops you suggested, your right it does effect your vision mine has gotten worse. First my neuro Dr. sent me to Philly to see Dr. Robert Swartsman he told me since it has spread all over my body the treatment would not work for me, and that I would have to go to Mexico to do the Ketamine coma to get enough of the ket. to do any good. I'm scared to do that at this point. So I went to Florida and was seen by Dr. Kirkpatrick he is great always in a good mood, always laughing, so we agreed to the 3 day Ket. treatment he told us sometimes it takes 3 diffrent times for it to help. It is a very difficult treatment to do due to the hullinations, that part was awful and after you leave each day it takes about 1 to 2 hrs. to wear off. Thank God my husband was by my side the whole time. If you have ever watched it on the internet (his 3 day treatment) it is exactly like that. We actually video taped the last 2 days of treatment, it was kinda hard for me to watch but I wanted to know what all happened while I was in a totally different world. So much confussion, cant process thoughts right, and when you want to say something you are so disconnected you cant get it out. But the sad part is that it helped a little at first I could touch my foot, not burning, I actually wore my tennis shoes one day. But it is slowly creeping back, cant wear shoes again, the burning, the aching in my arms, the tiredness. I would do anything to get this to go away, but it kills me all the money I'm taking away from my family, I always worked but now due to this monster I lost my job, dont know yet if I'll get disability. It cost 50,000 for the coma(in Mexico) that is just for the Dr. then the cost of flying there and food, somewhere to stay. It cost 10,000 to do the 3 day in Fl. and insurance wont pay a penny of it and we have really good ins. they say there is not enough proof that the Ketamine works. So as hard as it is and the expense I would do the 3 day again and pray to God it works. I look forward to hearing about your friends stomach I have the same problems as her. Thank You for listening it helps just to talk about it to someone who totally understands. Hope you have a pain free day today. Gentle Hugs Penney

[glaserandglaser7]

Hi Penny = there is a web sight and I have to find it but eventually RSD does spread (especially if you injure a different part of your body w/nerve damage. According to this sight as I think I remember - it is the table cloth effect and it will effect other parts of the body. It could also be all the meds that we have to take who knows why. I too have stomache and digestive problems but nobody can find out why. I am now allergic to the sun, have anxiety disorder, have had blood clots in my lungs, am anemic which effects my breathing, and my back is so bad it needs surgery but I can not have it. The docs all say I am on too much meds but only one doc is really incontrol of them with exception of two and he knows what they are!

My RSD started in my left foot after surgery and is now in my right shoulder , my right arm and my left leg. My kidneys and liver are fine (thank God!!) I know I am a mess and I am much better than 4 months to 1 year ago that is why you guys have not heard from me!!

I am not whining but cureous to hear that someone else is suffering from the some of the same things as I..