hi unrouley1

I have merged your three threads into one for you as this way, as artist explained, you will have all your answers and discussion gathered on one thread

hope that helps
Cheri

Have had RSD for several yrs. now. Went for experimental alternative treatment which involved an IV push. The nurse stuck the IV in my right hand (hand I always use). I immediately felt pain there which soon spread into my wrist and up my entire arm. I phoned the dr. and explained what happened. He said "why did you let her put the IV in your hand. You should not go near RSD patient's hands for IV insertion." How was I supposed
to know that information. Apparently the hands are extremely susceptible to nerve injury as there are numerous nerves in our hands. My Pain became excruciating for a while. Now the
pain has subsided and is tolerable but I must restrict use of my hands for typing, etc. as it causes pain again.
Just rest your hands and if necessary you may consider TPI's if it does not subside.
Good luck. Hopefully, like mine it should resolve itself in time. Mine did not turn colors but it was freezing cold.
Good luck,
Sydney

thank you all for being so kind. i want to answer some questions. first, to debbie, i have had swallowing problems as far back as a kid - i can remember telling my mom my food kept getting stuck and it wouldn't go down my throat. when i went to the dr., he said that i was eating too fast. now, i do admit that i finish my meal before most people get done cutting their meat. i do try to slow down, but it keeps happening. i've been to the ER several times and they say that i am having a panic attack. the last time it was so serious (last fall) i went to the ER and the doc had me do a barium swallow, but it showed no obstruction. they wanted me to do a "cookie" swallow but i just didn't go in because i didn't want to know what was wrong. i was bulemic for many years and the doctor said that was my problem. something about esophageal (sp?) erosion.

i have never been able to drink regular pop because as soon as i swallow it, it comes right back out as thick foam and slime. recently, when i drank a diet coke i had the same reaction. the foam choked me. would that be acid reflux?

i still have that feeling that everything gets caught in my throat. i can feel it when it finally goes down and it takes more than 20 seconds sometimes before it finally goes away.

ok. the next thing i want to say is for sydney. when i went to my pain doc last friday he told me the same thing you were told. "don't ever get anything done on your right side because that will instantly trigger your RSD." like i knew that????? nobody told me. very frustrating.

anyway, i feel better today. i got a good nights rest.

thank you all again.

angie

You should go for the "cookie" test- I think what he is referring to is a Modified Barium Swallow- It should be done with a speech therapist who works in a hospital or a place where they can do X-rays- Its a very simple test- they just give a small amt of food/fluids and watch it go down via flueroscopy- Its really simple!

You should definately slow down when your eating if you are having difficulty!

Debbie

Hi Deb.. this is Desi.. you need to respond to Angie! LOL

i am in really bad shape and i am letting you know now that i am going to make a lot of typing errors so bear with me.

i cancelled my appointment to my pain dr. for today because my legs were acting so funny. it's like i try to take a step and my knees lock and my heel hits the ground, but i cant feel the balls of my feet hitting it or at least they dont touch firts like they used to. i am a toe wlker.
anyway i asked fo rthe nurse to call me back and she never did so i called her and she was being nasty to me and telling me that i keep cancelling my appointmetnes and with RSD it has to be treated immediately and i have to have shots every other day. well my dr. told me that he thought the shots had reached their maximum potentnal andi did not get one on friday when i went in. but he scheduled one for today and thrusday.
i told the nurse that i couldnt find anyone to drive me and i couldnt find a bagysitter for my kids and she said i wasnt taking my illness seriously.

what am i supposed to do! i was never given any tests. they did not bloodwork and they didnt do an mri on me. what if it isnt rsd?
i am really scared and my body is going craxy and i cant stop the spasms. i am taking my medicine as prescribed but its nothelping anyhmore.
please somebody give me some encouragement because i am bawling my head off. i am weak and shakey and tired. please someone help me.

Hi Angie,

Hmmmm, sounds like you need to get some rest; I've just clicked on before going to bed (it's past midnight here) but I saw your post, and wanted to send you hugs

So here are my suggestions; first, go and read some e. e. cummings. Then, if you can, may not be possible I realise, try to get some sleep now, take a tab if necessary. When you're feeling a bit better, call the doctors office back; tell them you weren't thinking straight when you spoke to them before, because your legs had/have stopped working for you and you're terrified. You don't need to say more than that, hopefully they'll take it from there.

If it ever happens again, tell them the truth - this time, at least, the truth would have got their attention (it's no good giving nurses excuses, just makes them bad-tempered, lol - but occasionally they will understand a good reason).....

But for now, go read and try to get rest. Here are some more hugs

and a bit of cummings:

who knows if the moon's
a balloon,coming out of a keen city
in the sky--filled with pretty people?
(and if you and i should

get into it,if they
should take me and take you into their balloon,
why then
we'd go up higher with all the pretty people

than houses and steeples and clouds:
go sailing
away and away sailing into a keen
city which nobody's ever visited,where

always
it's
Spring)and everyone's
in love and flowers pick themselves

all the best

Hi Angie,

Firstly, huge hugs, I know how scary this whole thing is.

Secondly - I am rewriting this for like the third time or something as I can't express myself today. I know how scared you are and how you are reacting to the fear by wanting to hide from everything (so cancelling drs appointments/ cookie swallows) because they scare you. I know that feeling totally. There are times I don't want to know test results, just looking at the dr tells you what they are and that's that. However, if things like the cookie swallow could either show you what was wrong or show you that it is from eating too fast/ not chewing then it would mean that is one less problem to deal with. I can't drink things like coke for a similar reason - they end up regurgitated - nice!

MS - is 50 years ahead of RSD in understanding. At the moment we all are all lumped together into a "syndrome" as we all have chronic pain, we all have alloydinia and some SNS symptoms eg colour change (at some point). Doesn't mean that we have the same disease processes or that every individual with an RSD diagnosis will be the same. (I know you didn't say that, but it was more about the random variety of symptoms). It is scary when you sit down and think how much your body has changed, such as ability to eat, see, hear, communicate, think clearly, breathe clearly, swallow, walk, stand, move, jump, grip, go to the bathroom, not regurgitate food etc and in many ways you don't realise at the time that the deterioation has occured.

I agree with Artist that you should try and get some rest and then phone the nurses and tell them. What exactly is up with your legs? (I am impressed you managed a bike ride at 100 degrees! impressive!). Nurses always respond better to the truth - and I live with 2 of them!!!! (although if I am deterioating then no one will ever talk about it and the RSD then becomes an abstract concept which can only be talked about in code) - but, I digress. Either give them a ring or give the dr a ring, because then you can get some help from them - it does sound as if you need someone to look at the new pain. With the icy burning - it's been another sx I have had for ages, and it sucks. Well. The whole disease sucks.

How long have you been studying psychology? It's my major at college at the moment. I love it.

So, have a rest, then pick up the phone. We are all with you in spirit even if not physically - and you know we are all supporting you to go and find out what is actually going on with the swallowing etc.

Love ya

Froggsy xxxxxxxxxxxxx

Hi Angie,
I agree with advice that has already been given but will add my 2 cents. In the almost 4 years that I've had RSD, I've panicked many times. I know the feeling and it's awful but we have to try & calm down because the stress makes the pain and maybe the symptoms worse. Do whatever to make yourself feel better.
Someone suggested to me that I get a med alert bracelet with no BP/VP on left arm (where my RSD started).
The docs keep checking me for MS since my sister has MS. They do MRIs and I get regular eye exams since I have "weird" eye problems. My sister has had it for 20 years and is still not in a wheelchair. MS, like RSD, doesn't affect everyone the same way, so please don't panic that even if you do have it that you will be in a wheelchair. (Montel Williams has MS & look at him.)
My pain doc told me that my nervous system is so ramped up that something that wouldn't cause alot of pain in a "normal" person causes me much more pain. So, I'm sure you're in alot of pain from that needle poking. I also have a permanent red area on my left hand where I got a cortisone injection before the RSD was diagnosed. I never used to mind needles before but am now scared of them.
Hope you are getting the help from the doc today.
Wish I was there so I could drive you or babysit for you.
Linmarie

i am incredibly sad and i don't want to even be awake right now. but i am going to take my time and type properly and tell everyone what happened to me today.

the nurse called me back to tell me there was an appointment at 1 this afternoon and i told her that i could get a ride and my dad would watch the kids. so i went. as soon as i got in there and signed my life away i sat down next to 2 women in the waiting room. then i hear the nurse saying (to the doctor):

...well i think you are going to have to be really tough on her because she is very irresponsible and doesnt take things seriously. she's made excuses for missing appointments like she's sick, or she can't find a driver or someone to watch her kids. so i told her that her illness required shots every two days. so if she isn't going to show up then she can live with it. HA HA HA. so then she started crying and making excuses and telling me that i didn't think she was taking it seriously...

at this point i stood up and marched over to the door and she stared at me as she continued to talk and said "THAT'S RUDE" and i went back to my chair and started weeping. i went up to the scheduling lady and said that the nurse was saying awful things about me. as i was walking out to my chair, my doc walked by with his phone up to his ear.

so then a tech walked me back to my room and asked me if i was ok. i said no and started to tell her that the ***** nurse was saying awful things about me that weren't true and she told me to calm down so the doctor could see me.

the doctor came in and he proceeded to tell me that the staff members have said that i've been short with them and then he said that the PT department said i was saying bad things about him.

first of all, i have NEVER been anything but sweet to his office because he has been the only one who has helped me. secondly, the PT people don't like it that his patients just show up without appointments or if they do, they are late most of the time. so i blew up and said that i would NEVER say something like that and they are liars and i asked him why didn't he come to me. he said that he trusted his staff but he trusted me too and that he was caught in the middle. i was f*ing hysterical! i couldn't believe that someone would lie about me to him. i felt like my hero was spitting on me!

so after all that he told me that it was going to be ok and he gave me a hug and told me again that everything would be ok. he walked me to the scheduling room and my friend was there waiting for me - ****** as hell. she waited for him and told him that she didn't know what was going on, but whoever was saying these things was lying. she has been to almost all of my appointments with me so at least i have a witness.

i am a good person and i am in disbelief.

so anyway he ordered brain scans, i go to the neurologist and the psychiatrist. he said it sounds like...............ms.

i cant cry anymore. i dried up.