Hi Desi,

I have a lot of the same problems u have and I am sure if we all wrote down all of our symptons, there would be a lot in common- You are not being paranoid- RSD is just bizarre and the symtoms- well you couldn't make this stuff up! Tell me a little about your swallowing problems= I am a speech therapist and I work with people who have swallowing problems (my speech and word finding skills are totally effected by the RSD so I have to hide it!) Just remember we know what u are going thru and you are not alone!

Debbie

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 hope things get better for you real soon

Please take a couple spoons for strength
Chat room?

Awww, Unrouley... what an awful day/days for you, so sorry

I have had a similar experience. I was at my aids dr. appt, he was also the one who treated my rsd, swore he knew a lot about it. I trusted him.

I went in for an appt, and was terribly down. I explained to him that my aids symptoms were getting very bad and I was sick to death of throwing up and having diarrhea. I was also having horrible headaches, more often and more severe leg cramps, confusion, problems getting the right words out, dizzy spells... all sorts of things weren't working right. He never ONCE said that any of these symptoms were from the rsd, not the aids! He thought I was exaggerating instead.

What he DID say was that I had too many t-cells to be experiencing these severe symptoms yet. I had 300 t-cells, not 250 like the standards say. But now that the genotype has been done, they force the meds at me when I hit 350. This strain is so virulent it scares them. But that day, he again decided my problems were emotional, and once again told me I needed an anti-depressant. (He knew darned good and well I wouldn't take those, but he always pushed them at me anyway).

I was in shock and didn't say anything. But I talked it over with Michael, and mulled it around in my head a lot. At my next appt. I came right out and told him he had hurt my feelings badly, I felt as if he thought I was a hypochondriac or a druggie seeking meds.

His response was "I better go get Michael. You are being over-sensitive". Lord, what a mistake that was, lmao. He brought Michael into the room, having told him who-knows-what as they came. Michael walked in, took one look at my face, and ripped into that Dr.! The dr. had managed to wedge himself into a corner, cowering behind the nurse, by the time Michael's tirade was over. I also left there with some more appropriate pain meds and muscle relaxers, lol.

I haven't seen the dr. since... we now see the PA and like her much better. She of course has to run everything by the dr., he does know exactly what is going on with us.... but I haven't had to deal with him since. He's never even been in the office on the days we go. Michael can be scary when ya **** him off, lol. Many moons ago, before he found God and the right path, he was a cocaine dealer in San Antonio. His story is much like mine... got hurt, couldn't work, couldn't get disability, had mouths to feed. You do what you have to do to take care of your kids.

So take heart, hon... these things CAN work themselves out. If there is any way to arrange it, I would suggest a sit-down with ALL pertinent staff. It would be a good thing to make them all face each other and have to say what they've said before... that YOU said this to this person, that YOU treated this one badly, etc. I'd imagine there'll be quite a lot of staffers exclaiming "I never said that!!" or "She never did that to me!". When they see how they've been used and back-stabbed by their co-workers, they'll be a lot madder at them, and a lot nicer to you.

I have always been amazed at how open and callous dr.s staffers can be. They seem to think they have the right to stand behind their desks/counters and talk really really badly about a patient, in front of all other patients in the waiting room. They think as they say no names, it's okay. No one ever seems to consider what things like that DO to the patients mentalhealth/psyche. We all wonder who they are talking about, and then worry that they do it when we leave too.

But we patients must take some of the blame as well. Do we ever speak up for ourselves? I do now, but I was 30 before I started. Now I tell dr.s if their staff are standing around gossiping about the patients, or bad-mouthing people. I have even heard staff talking smack about the dr. right in front of patients! I tell them how it makes the patients feel, and how unprofessional it makes him/her look to have staff doing this. It makes a HUGE difference if you tell them, it really does.... their brains are elsewhere, they don't even notice what the staff around them are talking about most of the time. But once you bring it to their attention, things change swiftly.

Here are a few spoons and a few soft Take care, and take control. Sometimes you have to force health care "professionals" to look at you as a human being, not a condition or a disease. Seriously, how much do these staff women really know about rsd/crps? Has the complete devastation it brings down upon our lives ever really been explained to them? If they don't know, they need to be educated. If they DID know, and still acted that callously, then they need to be fired.

Hmm, Angie, I can think of at least 20 reasons why I wouldn't do that, but the main one is that I think you need as little stress as possible for a while, I really do.

Rogue, I well take your point about the incredibly bad behaviour of the staff, talking in front of other patients...but sometimes ya just gotta let it ride, you know? Because you absolutely need to be in a very strong frame of mind, or have good strong backup (not many of us here do, you're very lucky there - ex-cocaine-dealer, crikey ) to start anything like that....frankly, that kind of thing would send me into a flare beyond endurance.

Angie, you sound very fragile at the moment, and in need of the doctor's help. We can offer support, advice, hugs, but not real practical help - so just shut your eyes and ears in the surgery next time (take an ipod/walkman, something..and a good magazine) I really believe you need some practical help, rest and as little stress as possible right now,

more hugs, I hope you're feeling a little better now

LOL,Artist... of course things like that cause me to flare too! There are just times when I decide it's worth it. I get flares for all sorts of reasons I don't want to, so it's kind of nice to be in control of them once in a while.

The reason I tell stories like that are mainly out of feeling useless, truth be told. It's all I can do for Unrouley, sympathize and let her know I can relate. If I had any real choices, I'd be at her Dr.s with her next time!

Artist, you mentioned music. Boy, I sure wish I could go that route! I bet there are others like me here.... legs are soo bad I can't listen to music. I have two choices when I do... concentrate and keep my feet from tapping, which makes the muscles ache horribly, or let the feet tap away, knowing that within a few hours I am gonna pay for it. But I substitute hand held games when I am at the dr.s, ones like Yahtzee or Boggle where I can push buttons at my own pace, not some speedy race game or the like.

That's one of the hardest parts of rsd for me... I am not used to sitting still in the quiet. Now I've lost my music and my crafts... wonder what on earth is next? <sigh>