Hi there rsdfree, I sent you a message. To access it go to the top right of any page and you will see your user name. Click on that to open your own home page.

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

The forum just seems slow this week. Some people might be having good weather and just enjoying it or busy.

I have been busy this week with taking the boys to get hair cuts, and helping them get ready for Homecoming dance tonight. I swear sometimes I think they don't have parents. They call me for everything.

Today I have to help a friend and then I have to go over and take pictures of the kids tonight and then go pick them up from the dance.

The weather has been cold here of the morning. I have my heat on right now.
It's suppose to get to 70 today though. Not typical for here.

If you made someone mad here, you would know it. LOL You are fine. I just hope you start getting the help you need to start being more painfree.

Keep looking for that right Dr.

Ada

Hi Ada, I want to thank you for answering me---I really appreciate. We havent had the heat on yet---just extra blankets. Ive always been cold, hubby used to ask me when we were sleeping in the same bed---if I had just taken my feet out of the freezer, cause they always felt like ice cubes. Im just really glad that I didnt upset anyone. that makes me feel so much better. I hate to say it but I thought that I knew "alot" about rsd/crps---that is until I came here---then I realized that I didnt know anything compared to ya'll. It sounds like you've got a really busy day. We were 40 degrees this morning---it felt good as long as you were under the blankets. lol lol Im sure not looking forward to winter this year, but then I never do. You would think that as much as my left leg is always burning that it wouldnt feel like it was put in the deep freeze, but it sure does. I cant wear anything on it either, because that causes me extreme pain, so how do you keep a leg warm that feels like its on fire but cold? Sounds strange I know. I havent even looked at weather underground to see what its supposed to be here---that way I will be surprised. lol lol I hope that you have a good day & thanks again for answering me. I hope that you have a warm day. Where exactly are you from because you said that 70 was not normal for you?
I keep hoping that I will find a doctor that actually has a heart & that its in working order so that they will be able to treat the whole pain & not just half of it.
Thanks again,
Janet

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

Hi tiredofPain
The joy of wheels have brought new possibilities to me as well!! I understand your elation and independence that your Jazzy chair has brought you!! Something as minor as going to the mailbox alone is cause for celebration.
I've had my mobility scooter (Go-go Elite made by Pride) for over a month now and an automatic lift that lifts it in and out of the back of my van..(W.C. covered it..after many letters from me and the support of my doctors... it has given me a renewed independence and a way for me to make plans as long as my pain level is tolerable.
Things I've done!!

1. Taken a long "walk" on the bike path along the ocean with my son and daughter who live in Santa Cruz (Cal)
2. A trip to the mall just to ride back and forth on the smooth flooring and look at the store windows and get a coffee..(alone!!!)
3. Gone for a walk along the path at the state park! (oohhh,I had been waiting for this for a long time!
4. Rode the mobility scooter from my car to my Saturday class today and therefore had a tolerable pain level.last week I walk from my car to the class..and paid dearly for that with horrible pain..

I share your joy about your new wheels!! I'm so happy for you! Happy trails!!
Hope4thebest

Hi Hope4thebest,
You are right about having a little independence, I didnt think that I was ever going to get it. I wasnt able to leave my front porch unless I was going to a doctor. The maual chair doesnt get around to well with the gravel driveway or the hilly yard too well but the jazzy sure does. I absolutely LOVE it!!! I dont know if I said anything or not but my insurance wont pay for the lift, so Im unable to take it anywhere around town like the doctors, grocery shopping but I sure would love to be able to do that. Maybe then people wouldnt be so eager to run into me. They dont even say that they're sorry after they do it & wal-mart employee's seem to be the worse. They know that they've run into me because I say "excuse me" & they just go on their merry way. They dont realize the pain they cause me when they do that. I just hope for the day when I can do some of what you have been able to do. Something to look forward too!!! I just wish that I could attach a "cattle prod" to my chair ---maybe then they wouldnt bump into me anymore. lol lol Just something that would let them know that it hurts when they dont look where they are going. Its even bad in the doctors office---where you would think that people would be more careful. Its like my leg sticking out is a neon sign saying "hit me--it doesnt hurt". Yeah right!! Its definitely a whole new world for me right now & it really feels great.
Thanks for the encouraging words & it definitely gives me something to look forward too.
Janet

Hi again, its me again---lol lol
Since Im still a "newbie" here, I was wondering if any of you could tell me how to add albums, picture or an avatar, I just cant figure it out. I would really appreciate it very much. Im surprised that I figured out how to reply to private messages---lol lol . Hope that some one out there is having warmer weather than we are, its just down right cold here. Im unable to wear jeans or anything like that so I get cold rather quickly. I have to wear dresses or my jammies ( atleast they're flannel) & we have to go grocery shopping today. Thats one thing that I just dont enjoy as much as I used to. Look out wal-mart---please dont run into me today. Thanks again---will appreciate any & all help that you can give me. Stay warm.

Janet