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!

I was born in Ky. but have spent the last 36 years in Colorado. What I meant about the weather not being normal is that we usually don't see this fall like weather until Halloween. The kids around here maybe have one good Halloween without rain, sleet or snow once every 10 years but up until then we usually have great weather. It was 39 this morning but got warmer. I had my heat on 2 times in August. Who does that accept maybe in Alaska.

As far as the cold feet and legs, I deal with the same. The kids got me an electric blanket for my birthday and I am already using it at night. It does help but I will say that my legs still take forever to warm up. I also have Plantar fascious in my feet. They burn on the bottom if I am on them too long but they feel cold. Like you said, it's just too wierd. This new med my Dr. put me on, so far isn't doing anything for anything. It might take time though.

I am tired. I just got home, I have to go down in a bit and take pictures of my boys ready for the Homecomeing dance. I will put their pictures on my album tomorrow. I have to go get them and take them home after the Homecoming dance so I am probably looking at midnight by the time my day ends.

I think you will find that right Dr. Most of us do on here but I will say Janet, it is sure not an overnight thing with most of us. I have my PCP but I saw over 50 Drs. before he finally just said he'd take care of everything.

One thing I learned also is how to present yourself to Drs. My PCP councelled me in how to talk to them and how to act when I saw one. I learned there were certain ways a person don't want to come off as when they see the Drs. You have to make them think that you aren't crazy. LOL When I first started out with the RSD, I thought I was going crazy. I think too you have to make them think that you are agreeing with them but then say, you know I agree with you but could we try this too. Give them ideals and make them think they are right. Don't show anger either. I did that at first. After awhile you get frustrated with seeing so many and then it turns to anger. It sure did with me anyway. Don't mention the forum either. If you present any info just tell them you read it on the computer on a Medical site. They aren't too crazy about forums due to none of us being Drs. so they think we don't know anything.

I'm not very smart on RSD either. When someone asks me what it is, I can't even find a short explanation for it. I just know what my Dr. did for me to get me to where I am today. We learn as we go.

Ada

Hi Ada,
We live in TN & even thou it doesnt get as cold here as where I grew up (PA) it still gets cold. We havent had the heat on---we normally build a fire in the fireplace, but hubby hasnt been able to do that yet, because of having to take care of me 24/7--he hasnt had the chance to cut any firewood yet. Besides he hurts from his RA.
I guess that in the last 7 years Ive seen probably close to 50 doctors---they just dont know what it is here so they pawn you off on someone else & on & on & on.
Even though most of the ones that I have seen have been either in Knoxville or Chatnooga---which are alot bigger cities than where I am---they still dont know. Most of them are like its "all in my head, you need to see a shrink"for awhile there I thought that I was going crazy. I mean if you hear it enough, you start to think that way.
Ive had alot of "dark, dark days", its a struggle every day, especially when I hurt really really badly & nothing works at even taking a "little" bit of the pain away. Now that I got my jazzy & Im no longer confined to the front porch, its getting a little bit better. Today I went down to the mailbox all by myself--well my dog (Grumpy) followed me, I cant tell you how "wondeful" that was. Ive not gone anywhere by myself in 2 years & 53 days. I enjoy when hubby goes with me too, but just being able to do it "myself" was wonderful, because I cant do anything else by myself. Im in central time, so how far ahead of me time wise are you?? Do you do daylight savings time where you are? Hopefully when you get home from getting your boys from homecoming you will be able to sit down & relax.
Hubby built me a rack to keep the sheets off my leg cause nothing can "touch" my leg so that leg doesnt really get too warm, even though it constantly has that "fire" feeling, but being in the sun too long makes it feel like a volcano has hit it.
Its supposed to be another cold night here---I would love for it to be around 70 all year long. lol lol With no rain & no humidity---that would be great. lol lol
Well thats all I know for now. Thanks again for your wise words.
Janet

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.


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

(Below the line, I respond to the following comment.)

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The tests check for circulation, the lack of which causes pain. You can almost instantly check this out yourself. Wrap a rubber band around your finger so it cuts off the blood supply, and your finger will turn purple and hurt. Lack of blood and oxygen cause pain.

Tests include:

--standing on a black thermopad that registers the warmth of the soles of your feet. If, after you step off, the pad is still black, your feet are too cold to have proper circulation. If the pad turns lighter colors, your feet registered circulation.

--taking the temperature of the pads of both thumbs and the bottom of both big toes. Research shows that the body's left and right plantar temperature should be within one degree of each other and should be in a specific range, just as the internal body temperature should be within a certain range. If the readings are off, you have a problem.

--testing your nerve conduction by placing electrodes on each toe of each foot, running a mild electrical charge through the electrodes, and noting the intensity of the frequency before you feel any tingling. High numbers mean your nerves are malfunctioning, which causes nerve pain.

--taking your blood pressure on each arm and each ankle to determine the difference in the readings. If your ankle readings are different from the expected difference between the arm and ankle, then you may have a blockage that makes your feet too cold. If not, then foot pain is most likely caused by nerve problems.

--taking x-rays of the feet to look for subchrondal cysts. These are cysts that result from lack of proper circulation that eats away at bone. Bone needs a good blood/oxygen supply to stay healthy. If you have these cysts in your feet, you have them in other places in your body.

These tests add up to a clear picture of whether you have chronic pain. When the body begins to heal, and that can take time, the above readings begin to change. Periodic retests indicate whether the treatment is working, sometimes even before the patient's subjective pain level drops. When it begins to drop, the above tests become even more normal.

Yes, the goal is to reach millions of people. There is something in the works that is a step in that direction. Everything takes time and research and development money. As I said before, grant writers are busy trying to find those funds.

I am so sorry to hear about your Smokey. Losing a pet is so hard on us. Bill's dog died about a year after he did. We had a hard time dealing with it. The kids had gotten him the dog so my Grandson's had a really hard time with it. Devin had Scooby's picture on his cellphone for a longtime. They are part of the family.

As far as the chair, I am so glad you got it. I do want to mention that when you go outside, make sure you have your phone or cellphone with you. My daughter takes care of a friend with MS and she went outside in her chair, got hung up in a big ditch and sat there for over 3 hours until Susan got there to find her. They don't always go where people might think they will.

As far as Drs. I have seen more then my share too. I donot like PM Drs. at all. I realize some people have good luck with them but I sure didn't and won't go to another one.

As far as my timezone. I think I am an hour behind Tennessee. I talk to Carrie and she told me that. Ky. is 2 hours ahead so I thought it was different that Tennessee is only 1.

It's cold here girl. We are breaking some records. It is suppose to warm up to the 60's here in the next few days though.

Don't give up on trying to get the help you need. You will finally find that right Dr.

I did want to say too about the SCS. Don't let a Dr. tell you that you have to have the SCS if you don't want it. Don't hold back on your pain level just to keep him from pushing it. I would just sit down with him and say, this is how it is, I don't want the SCS even though my pain is through the roof. There are other things out there that I am sure he hasn't tried yet. There are too many Drs. out there to have one push something on you that you don't want.

Ada

Hi Ada,
I really want to thank you for your kind words about my Smokey---it really means alot. My grandsons would lay their heads on him when they would come over. Its just like loosing a family member---he's been here so long that there isnt a time when he wasnt here. This is really hard.
He was sick for a couple of days, & he had arthritis really bad, but the strange thing is that he looked so peaceful when he went---like his suffering was over & he could run again. Im happy that hes not hurting anymore---& I know what Im going to say sounds selfish but I want him back. I hated to see him hurt, but he was our "baby" & it just doesnt seem right ---him not being here to eat with us---if you know what I mean.
It took me a long time to find a pcp that actually cared about you as a person, but I found one that is really great, I just wish that she was able to give me the meds that I need for the pain. I did find another doctor thats in Knoxville so hopefully they take my isurance & I can get away from the one that Im seeing now. I havent actually seen the "doc" ---its been his staff & I really dont think that they know what they are doing. I had to see their shrink about the SCS surgery & I showed him all the information that I had gathered & no matter how hard Ive tried to show it to the doc---he doesnt give me the time to do that. Ive even had it on the table & he just ignores it.
He doesnt want to hear about my pain---he wants that 30,000---thats all he wants to hear---thats why Im trying to see someone else.
Ky is one hour ahead of us---thats the eastern part--I dont know about the rest of Ky. Im in central time. Carrie is the one that is trying to get her doc to see me, so Im praying that shes able to do that. But if not---then Im going to see about the one in Knoxville. I just want a doc that is going to listen to me. I dont want the pain meds for the high---I just want a life where I dont hurt like this.
Ive only gone down my driveway with the chair but hubby normally goes with me---Ive only gone down twice by myself but there are people near by in case I get stuck.
Thanks again for your kind words---they mean so much.
Janet

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

Physicians, no matter their education or lack of do not have patience for CRPS patients. Its easier for them to write an RX. Too bad they cannot be honest & say, "hey, let me research who would be the best pain management physician for your condition". It's maddening & undeserved.