Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-04-2009, 02:43 PM #41
bobber bobber is offline
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Janet
Holler away,,everyone is wired differently,here,,you are welcomed,,ask anything that you want and have fun doing in life what ever you enjoy,,Im on board with you at being instores,,like walmart,,i just had a THR done,,i done need any shopping carts whacking me in the hip,,,,,,,ouch,,but i still need to get out of the house,,i enjoy working with my hands,auto mechanic,,but mostly i sub myself out as a machine man,,,more tedious,,i seemed to be attracted to it more,,more headaches,,but,,it keeps me moving,,i wish you and evryone here a painfree day,,,,,,,,,,,,,,much love with prayers ,,,bobber
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Old 10-04-2009, 03:08 PM #42
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Quote:
Originally Posted by tiredofpain07 View Post
Morning all, I was just wondering if I upset any of you. The reason why Im asking is because I havent heard from anyone. I really hope that Ive not said something that was out of line or anything like that. Finding this site has been a lifesaver for me & I really look forward to all your wisdom. When it comes to this disease I feel like a rookie compared to all of you. I really hope that Ive not mispoken or upset any of you. I really hope to hear from you soon. Its down right chilly here this morning, I think that winter is on the way. Janet
Dear TiredofPain,

Hon, you do not upset people. People just get busy or, like me, they retreat and stop posting when their depression, or their back pain [from the computer chair] gets too bad. We have monitors that keep out offensive posting here, so you don't have to worry about it. God Bless You, My Dear, and I hope I have not offended YOU! Caring About Your Feelings ~ billie
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Old 10-04-2009, 08:45 PM #43
tiredofpain07 tiredofpain07 is offline
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Originally Posted by bobber View Post
Janet
Holler away,,everyone is wired differently,here,,you are welcomed,,ask anything that you want and have fun doing in life what ever you enjoy,,Im on board with you at being instores,,like walmart,,i just had a THR done,,i done need any shopping carts whacking me in the hip,,,,,,,ouch,,but i still need to get out of the house,,i enjoy working with my hands,auto mechanic,,but mostly i sub myself out as a machine man,,,more tedious,,i seemed to be attracted to it more,,more headaches,,but,,it keeps me moving,,i wish you and evryone here a painfree day,,,,,,,,,,,,,,much love with prayers ,,,bobber
Hi Bobber,
It seems that the employee's are the worst when it comes to bumping into a person too. Thats why I would love a cattle prod---bet they wouldnt do it as often. lol lol It wouldnt be so bad if they would atleast say that they are sorry for doing it. Also the ones that are talking on their cell phone in the middle of the aisle---like they are the only ones in the store. I would love to be able to go there at 2-3 in the morning---there isnt anyone there but the other grocery stores arent open then. Its been raining here all afternoon & getting in & out of the car was worse today---the rain hitting my leg sends me overboard on the pain. I really hate crying in public, but sometimes it just cant be helped.
I love working with my hands---doing woodworking & stuff like that. Hubby & I used to build cabinets---we even built 2 houses---the first one caught fire. One thing we learned from that is that those fire safety boxes DONT with stand a fire---so if you have one---bury it outside somewhere--it would be alot safer. Well its been an extremely HIGH pain day for me so I think that Im going to call it a day. The rain is supposed to stop somewhere around midnight---I sure hope that it does. Am starting to feel like a duck.
Hope that someone had a pain free day. Hope to talk to you soon.
Janet
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Old 10-04-2009, 08:59 PM #44
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Originally Posted by billie View Post
Dear TiredofPain,

Hon, you do not upset people. People just get busy or, like me, they retreat and stop posting when their depression, or their back pain [from the computer chair] gets too bad. We have monitors that keep out offensive posting here, so you don't have to worry about it. God Bless You, My Dear, and I hope I have not offended YOU! Caring About Your Feelings ~ billie
Youve not upset my feelings at all.
Hi Billie,
I know how easy it is to be depressed, especially when I hurt really bad---I just want to curl under the covers--as best I can & shut out the world. The computer is right beside my hospital bed or I wouldnt be able to be online at all. Hubby moved it over when I got my bed---which it is easier to post & stuff, so Im really glad that he did that for me. Hubby is from Texas---he grew up in Hitchcock---do you know where that is?? Im really glad that I didnt upset anyone, because this place is the only one that Ive found where people know the kind of pain that Im in constantly---I appreciate you saying that though---it really does mean alot to me. Well Billie, its a high pain day for me because of the rain so Im going to say good night to all & I really hope that someone had a pain free day--they are so far & in between for me. Hope to hear from you again. Sweet dreams to all. Thanks for caring about my feelings--that means alot.
Janet

Last edited by tiredofpain07; 10-04-2009 at 09:00 PM. Reason: forgot something.
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Old 10-04-2009, 09:52 PM #45
Raging Inferno Raging Inferno is offline
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IMHO You have the wrong PM doctor. U need a Doc that specializes in RSD, or at least one that knows more than yours seems. Your body naturally builds up a tolerance to opioids, so eventually it wont help as much, not to mention RSD is a permanent and progressive disease, so it basically gets worse as u have it longer (most of the time). As far as the Doc pressuring you or telling you that u HAVE to have the stimulator, u need to tell him to shove it. YOU are the ONLY person who makes the decision for that ,and DONT LET N E ONE TELL YOU WHAT TO DO! You can ask peoples opinions, but its up to u. Your Doc may just be looking for another quick pay day. My Doc says the stim is the next step for me, but from doing alot of research online and talkin to some people Id say just from my research, 80% of the people who have had it implanted have had to have it removed for 1 reason or another. So for me what may as well be a heart transplant with an 80% failure rate aint gonna cut it!
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Old 10-05-2009, 08:03 AM #46
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Originally Posted by Raging Inferno View Post
IMHO You have the wrong PM doctor. U need a Doc that specializes in RSD, or at least one that knows more than yours seems. Your body naturally builds up a tolerance to opioids, so eventually it wont help as much, not to mention RSD is a permanent and progressive disease, so it basically gets worse as u have it longer (most of the time). As far as the Doc pressuring you or telling you that u HAVE to have the stimulator, u need to tell him to shove it. YOU are the ONLY person who makes the decision for that ,and DONT LET N E ONE TELL YOU WHAT TO DO! You can ask peoples opinions, but its up to u. Your Doc may just be looking for another quick pay day. My Doc says the stim is the next step for me, but from doing alot of research online and talkin to some people Id say just from my research, 80% of the people who have had it implanted have had to have it removed for 1 reason or another. So for me what may as well be a heart transplant with an 80% failure rate aint gonna cut it!
Hi Raging Inferno,
I KNOW I have the wrong PM doc & I KNOW that hes an IDIOT. I also KNOW that he sees me as a PAYDAY!! The only problem is that Im having a problem finding a good one that takes my insurance. I had a doc years ago for my rsd--he said that the SCS wouldnt work for either that or my back---but this doc is so full of you know what C--- that he thinks that hes going to get that 30,000. Im still looking for a new PM & WILL NEVER give up until I find one. Love your comments. My PM doc told me that he had over 80% success rate with the stimulator. Which if you read just one article on the internet then you know that hes LYING!!!! Even though theres no rain on radar its been raining here all morning so my pain level is pretty high but I really wanted to answer you. Thanks. Janet
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Old 10-05-2009, 08:55 AM #47
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Quote:
Originally Posted by rsdfree
Just an afterthought. Dr. Rhodes does testing that objectively indicates that you are in pain. Who else knows how to do that? You can't see pain. If your limb is not swollen or purple or black, and believe me, even that is not enough to convince some doctors that you have a problem, then most doctors have no way to determine if you are really hurting. Dr. Rhodes does. Not only can he test you for pain, but he can tell you through follow up testing if his treatments are reversing your nerve problem. This doctor is w-a-a-a-y ahead of his time. Or else everybody is way behind. Dr. Rhodes is one of those genius pioneers who is forging a trail for everybody else. One of these day he will be a household name.


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Originally Posted by mrsD View Post
Well, I would like to know what these "tests" are. I have never heard of them before. Pain management doctors don't test for pain.

Seems Dr. Rhodes needs to get more involved. Get his testing accepted by mainstream doctors. If it is so wonderful, he could reach millions of people and that I would think would be an admirable goal!
Mrs. D,

I agree with what you are saying. Unfortunately, there is no real objective test for pain. For proof of that, go to the courthouse and see all of the people suing for accident injury. There is a whole law field built around them.

Some accident victims are truly in pain, and others are simply looking for that big paycheck. It is up to the jury to decide who is telling the truth. There are plaintiff’s attorneys, defense attorneys, private detectives, plaintiff’s doctors, defense doctors, and “experts” of all types. All of this to either prove or disprove that a victim is in pain.

PLEASE, everyone – don’t think I am saying anything against people who sue to get their just due following an accident. Those who are injured should be compensated. My point is that there is no 100% guaranteed test to show a person’s pain and how severe it is. If there were, such lawsuits would be easy to settle.

Our doctors (just like the justice system) have to rely on what we tell them. We can help ourselves the most by being honest about our pain and not exaggerating. An accurate description, including defining your personal 1 – to – 10 scale, will help the doctors to understand just how we feel.

Mike
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Old 10-06-2009, 10:31 PM #48
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Exclamation We need a machine

My husband says they need a machine you could hook up to the doctor and they'd be able to feel exactly what we feel. He thinks they'd all drop dead from the pain. I agree. Why are they all so worried about addiction? I'd rather be a functioning addict then what I am with all this pain.

Yet they all roll their eyes thinking we're exaggerating or we're trying to get more meds or we're somehow playing them. I wake up in pain, I go to sleep in pain and I will probably die in pain.

And until the DEA and other idiots are taken out of the doctor/patient loop we'll continue to have problems convincing our doctors of the level of pain we have. Or until we have the machine........How many doctors would continue to tell you "You'll need to learn to live with it"
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Old 10-06-2009, 11:46 PM #49
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Here's a suggestion, that I think I've posted before, but I find it useful.. Unless I'm just feeling too badly to do it... And, my doctor understands that! I'm lucky, that I have a great doctor, who has known me since the early 90's.

Keep notes, (or your pain journal), a WP document, short and sweet.
You can edit it as you go,
but, you print it, and hand it to your doctor. It's saved on your computer, and Now, it's part of your doctors file!
Do that every visit if you can, and make note as to what has improved, what hasn't, what's new, etc.
This way, You'll be creating your trail of 'bread crumbs'.
(If you ever need to change doctors, you can reprint them, and give them to him/her).
Be sure you date them.

Your doc will have your own words (and records, with his) to refer to, whenever he needs to write a report, for instance.

This has helped me a few times, when I just felt so badly, seeing the doctor, I just wasn't up to talking much.

If you get a Dr. that's say, like mine a Neuro / Ph.D, they can tell by looking at you, how you respond, like that. (BTW, That's a good way to find a GOOD neuro! Check to see that's he's got some letters behind his name, in other words, he did some extra schooling).

Nobody should have to ask for meds, in todays world. But, if you're with a dr. that doesn't know you well, or, worse, doesn't know what he's doing, or about this disease, and is worried about his license....... it can and will be a problem.

Good Luck!

Pete
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Old 10-07-2009, 12:35 AM #50
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Dear Janet
I like the cattle prod idea,,,,,Their isle 14 in walmart for $27.50 Prod away,,,,,,God bless you janet ,,bobber
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