I am still around.  My son was getting better - he was able to stand by himself for a few seconds and then actually walked from his bedroom to ours putting his weight on his commode and we were all very excited.  Then, a few days later, the RSD went into his right arm and the week after that into his left arm.  It was pretty devastating.  He was having injections twice a week that I thought were stopping the RSD spreading (and had done so for 18 months) and now he is unable to have the injections bc it is too painful.  Also, just getting out of the house is a nightmare because he has to go down 2 flights of stairs and we only have a stairlift on one of them.  

Right now, he transfers from his bed to the floor, goes along the floor to the top of the stairs and goes down each of the 14 stairs to the fist floor on his hands, bottom and heels until he gets to the wheelchair on the first floor, then he wheels himself to the top of the stairs to the basement, transfers from the wheelchair to stairlift, goes down to the basement on the stairlift, transfers from the stairlift onto the wheelchair in the basement, wheels out of the basement down the ramp into the garage and down our sloping driveway and transfers to the floor of our mini van then from the van floor onto the back seat, then when we get to the doctor's office he transfers from the van seat to the van floor, from the floor onto the wheelchair.  Getting back up to his room is much worse of course and he now has to rest because he has too much pain in his hands and arms from lifting his body up each of those 14 stairs.  Our house is the worst possible one for someone disabled.  We have 3 flights of steps up to our front door.  It is even getting difficult for him to wheel his wheelchair up and down the sloping driveway.  I am wondering whether we have to move to a ranch-style house but there are not many of those in the NY area.  Many houses have a maid's room on the first floor but my mother-in-law who is 99 years old sleeps in the maid's room in our present house and would have to do so in any new house (and it looks as though she will be with us for a few more years).  But at least we could get a house where the front door is on street level.  However, just the thought of moving from a house in which we have lived for 20 years seems like more than we can handle at this moment, let alone the cost.  Worker's Comp paid for us to put in a new bathroom with a roll-in shower.  I wonder whether they would pay for a second one in a new house.

 

There are people on this list serve who have RSD in all four limbs - how do you manage to get around?

I haven't written in awhile for many reasons. First, the last thing I posted was my big announcement about graduation and no one ever responded. Then when I was going to write again my health took a turn for the worse. Not so much because of my rsd but because I now have gastroparesis which means that my stomach is slightly paralyzed so my stomach doesn't digest like it should. It takes me 422 mintues or more to digest, and it should only take 180 at the most. So I feel sick to my stomach all the time. I never ever feel like I can eat. I'm on a medicine, and a strict diet but i still feel really sick most of the time. It's a struggle each day just to make myself eat, and it's like you will feel hungry, but at the same time it's like there is this wall there preventing you from ever taking another bite of food as long as you live. I just hope things balance out or else I might be forced to get a feeding tube. I am barely eating cuz it's like you can't, and I've already lost a ton of weight. Other than that I am just in pain. We just got back from vacation and my dad wouldn't let me get a wheelchair at knotts berry farm or sea world so I am now in a ton of pain. I am working on my pain levels. So that is why I haven't been on.

Hi rat_lover,

 

I am so sorry to hear that you are still having such a bad time with your stomach. I am also sorry that no one posted a CONGRADULATIONS FOR GRADUATING!!!!! I thought I did but I guess I didn't. I did read your announcement though. I must have been going through some things of my own and not posting. I am so very proud of you to have worked so hard on your academics and through everything you have to deal with you accomplished a huge milestone in your life. Now you can focus on taking care of yourself for a little while before college starts. Don't be affraid. College is much more interesting and fun than high school was. It is a lot of hard work but you enjoy it more because you have a choice to go instead of having to go.

We have a member here who's husband was going through the same thing with his RSD and was throwing up constantly. He got the Katamine treatments and is doing a lot better so far. He has only been getting the treatments for a few months now so I don't know how it will all turn out in the long run but for now he can accually enjoy his life and his family. I will try to get in touch with them to get some information from them about where to go or who to contact. I think that since you are having such a hard time eating anything that this treatment should be considered for you. There are a lot of risks but if you are starving your body already then it is definately worth checking into. I will post what information I get so that you and your parents can make some calls and talk to someone educated about it.

Please don't get discouraged when no one answers your posts, since most of the members here feel like you do most of the time. It is hard to keep up with things when you're feeling so bad. We all care about you a lot and are glad to read your posts. You are like one of our children here. Life just gets too hard to keep up with sometimes. I am so happy that you graduated and are thinking about College. I know it was so hard for you to keep up with. You were haveing such a hard time with pain in the last part of your school year.

I will do what I can to help get you and your family some helpful information. There is hope out there so don't give up.

BIG gentle hugs.

Tami

 

 

sorry I haven't been around

I read all of the post but lately they seem to be about treatment which other then what they are I know little as I am either too young to be eliguible to get or sdon't work on me and I don';t want to write about what I don't know out of respect..

 just like rat my health has become worse that and I was battling to finish school  which I did only 2 weeks ago,which when every day getting out of bed and getting dressed makes you cry is not pleasent  is no help as you all know.

There is something majorly wrong with my back  appently non rsd related and according to the specialist it is very serious since  the amount of pain it causes is to much for it to be non serious as well as my failing a neuro exam  and I have been waiting to see the speciaist since october and gotten much worse since I'm quite scared because  have three pain sites makes it impossiable.For those of you who have full body rsd or close to it I admire you guys imensely as between my back both legs and my head I am going crazy here but my app is finally next week. now that school over I can post more

Hi Ratlover(Rebbeca),

 I answered your graduation anouncment  and if I could I would take your illness for you, RSD has put 70 pounds on me in 8 years....is that almost 10lbs a year? Wow!Really tho, I am very concerned about what is going on with your stomach, I have not heard of anybody else having this kind of problem but I have things going wrong with me now that I just wouldnt have ever believed. I simply and lightly hyperextended my knee in Feburary of this year and the outcome of that was blood clots in both lungs and all the way down my right leg...the legs knee that I hurt! Now getting the upper eppidurals that have been helping me so much just became a nightmare because of the clots still in my system that are not completely disolved from 3 months ago. Morgan; my daughter says Hi! I want you to know that since Morgan met you she is more aware of my illness and for a teenager is a lot easier on me...I thank you for that! Teenagers believe eachother...just not their parents...LOL!

With a small prayer for you

Franklin (Franknberrie)

 

PS my children gave me that nick name 30 years ago, I have 6 of them and Morgan is the youngest 

Hi Normalee,  It's Sylvia, and I'm still here.  My RSD is much better since I've done the ECT treatments.  I just went again for the first time in 3 mos.  I don't even feel the RSD anymore in my hands or arms, just my legs once in awhile, and I do still take 2 meds when it flares up.  This morning I feel great.  The ECT has eliminated all of the swelling, discoloration, and that kind of stuff.  I was able to return to work part time and keep my SDI and Medicare.  If I did it, so can many others.  My doctor in Sacramento asks me if I have any other friends with RSD who want to get better.  I tell him yes, but they're afraid to try the ECT.  I'm living proof it works.  Hang in there and keep in touch.

 

Sylvia

I'm still here... not like I was cause unfortunately I'm not feeling to well.... my RSD is getting worst at the current time... I know it's probablly the weather.  so once it stops raining, stays humid or what ever it's going to do... I "hope" to be back in the swing of things.

 

Michelle

Hello everyone! I just wanted to make sure that no one thought I sounded like I was complaining when I said that few people responded to my grad announcement. I didn't mean it that way at all, but when I read back through it I guess it kind of does sound that way. My pain may not be as bad as a lot of the people on here, but I think that my new stomach problems are doing there best to make up for it. I can hardly hold any foods down at all anymore. My mom says I'm wasting away, you wouldn't believe how much my clothes hang on me now that fit before. I mean at this point I'm not complaining, I've been wanting to lose some weight anyways because I have gained alot since I've had RSD, but I know that this isn't the way to do it. I'm a bit worried, i seriously feel like I have the stomach food all the time. If it wouldn't kill me, I'd give up eating all together because I'm tired of feeling like this. Anyways just thought I'd post.

Hi Rebbeca,(Rat Lover64)

 Im sure no one here thinks you are complaining, all I read was a well written letter to the group telling us about your concerns...and serious ones too! Thats what this group is for. There are a great many of us here that really care about you and others on the groups as well. Do not hesitate to write to us what ever you want, thats what the group is about so please keep us informed about your current health problems or what ever you want to talk to the group about!

We all care a lot

 asst. manager, Franknberrie