Just Maybe
 

Hi Their,

Maybe on a serious note, I am only the one that has beat this.

Really what are your thoughts? Hugs, Roz

i might get really bad replies for this but maybe it is a mind thing? you seem to been a very strong person and you say you have been cured? i dont know but my thoughts are if you are living the way you want and are happy who cares what anyone else thinks, if you say you are cured and then someone says there is no cure does it really matter? what matters is that you are happy. that rsd has not gotten the best of you and it sounds like you can put rsd behide you and move on right? one thing i always tell myself is that we always have something to learn from someone or we can teach something to someone else with our experiences in life, it sounds to me that you are saying you are cured that is great move on with life and teach people that you have had pain and overcame it give them strength when they feel weak. i wish many days of being cured from this monster they call rsd and i hope one day i can say to you all that i am cured? take care michelle

I saw what you posted here, and on the "managed" thread.
Which, of course is raising some serious questions!
(Not that you're not believed, we want to know your secret!)

Would you be so kind as to tell us your story?
How you got rsd/tos, how long, and what do you think is the "secret" to your cure?

I think we've all been close to, or probably hit that "10" on the pain scale, I know I have. I used to say, hmmm, I can't say 10, because I've witnessed childbirth. Then I thought, no, we came away with a beautiful baby after that pain. And, we all know it's the CHRONIC/ENDLESSNESS of RSD that's the killer, and the damn thing won't even kill us!

So, Roz, think it over? You must have a good story.

Thanks,
Pete
ASB

ditto .... to what pete said. there are so many days when i wake up and set my feet over the bed and in a instant my feet turn blue and feels like i have just stuck my feet in a bucket of bees. i look at my husband and sometimes looking back he will have tears in his eyes and say its ok and i love you BUT he cant help me, i want this to go away if you can PLEASE CURE ME tell me what did you do how did you do it. i want to be the person who says i am cured like you. i want to be the person who can help someone else endure the pain they feel day in and day out without myself being in so much pain i want to say it used to be....

Dear Michelle & Pete,

If I can help you in anyway I will, I had every SX. Please feel free to PM me.

Much Love, roz

I'm not sure if I am "cured" or not; but I am certainly not affected by RSD the way I used to be. When I was diagnosed after foot surgery in August 07, I had all the classic signs--couldn't miss it. Swollen, discoloration, bone loss, hurt like heck (but not to light touch), deep bone pain, muscle pain, muscle deterioration, cold temperature, sweating, depression. The only thing that I am still a little bothered by is the temp (although it is nowhere near as bad as it was; but I have a feeling when summer rolls around the air conditioning will bother it some--we'll see). My secret? I don't know--I tried so many things. Nerve blocks (8 plus an ankle block), meds, nutrition, laser, ultrasound, mirror therapy, lots of PT including pool therapy, HBOT, TENS unit, STS therapy, massage, epsom salt baths. I felt like I was constantly treating it in one way or another. I also got the screws removed which were bothering the nerves in my foot. I think what probably helped me the most was PT, especially pool therapy, and massage. But I don't know; I think the mix of everything together helped. Just giving my nerves "normal" stimulation to help rewire them, if that makes sense. And I think catching it right away in my case was really helpful. I am back to a normal life. I hope the same for all of you; I know how much it sucks. But please believe there is hope. :hug:

You can also click any members username on their posts and select the option from the list that appears- find more posts by buckwheat
{or which ever user you clicked on}

all their posts will come up and you can scroll thru the list to find specific topics. It saves a lot of typing unless you don't find what you are looking for.
I'll see if I can locate a few of Roz's main threads about what helped her.

Dear Miller,

I am soo happy for you. I was not DX with RSD tilll I was nearly 2 years into it. I suffered for seven years no short of being tortured.

Is the inflammation gone?

The sweating SX you have troubles me some. Is it night sweats?

Hugs, Roz

Jo mar,

If your up for it, maybe you could find the TOS ones. This surgery could of been avoided for me. I came up severe, I had no choice but to have it because of high risk of loosing my right arm. I also want to say I believe people can have TOS for different reasons. Hugs, Roz

i sometimes wonder if it isnt the hardware that is in my foot that is the cause of this? i dont know i have been through pt 3 lumbar blocks and 2 beir blocks and waiting for ketmaine may 1st. i am going through a hard time because i used to be a very active person and having kids as younge as 6 they need me but yet the pain runs my day to day life it is not what i am going to do today it is what will the pain allowe me to do. i will take you up on your post buckwheat and pm you, I NEED TO KNOW HOW YOU GOT TO WHERE YOU ARE
and i think some others would like to know.. like i said we are here to teach or to learn and i want to learn. thank you

Jo*mar,
Thanks for that advice,
after I wrote, I thought I may be asking Roz to re-write something that has already been written. Sorry about that!

This place is truly like an Encyclopedia of experience!

Pete
asb

Roz,
Looks like you didn't post much in the TOS forum here or I haven't came across them yet.
all the old posts from the Braintalk forum were lost in the crash of 06.
I'll keep looking though.

Well my internet has slowed to a crawl, but if you got to Roz's earliest posts you can follow her progress and treatments.

Dear Michelle,

Their is a test called a Neurography, this is like a very detailed MRI. Just a thought but maybe the hardware is causing nerve entrapment?:confused:

Here is a link about it:
http://www.neurography.com/

Most radiologists are not trained to read nerves so have it looked at by a Neuro. MD. If I was you I would go to a different Neuro. not the one that did the OR procedure.

Do you have inflammation?

Hugs, Roz

Dear Michelle,

If you have inflammation. You have a 25% percent infection rate after surgery. You can have an infection with absolutely nothing showing up in your blood work.

On any treatment I have had, I try to balance risk and benefit if that makes sense.

Hang in their, Roz

Hi Jo*mar,

You are very knowledgeable on the computers. Maybe i posted my TOS nightmare on B/T?:confused:

I am living in an apartment for another few weeks. Most of my medical records are in my home. I will look for them. I just don't want anyone with RSD to have to have the TOS surgery unless it's 100% necessary.

Having had TOS/RSD DX is what not like winning the daily double.;) Again I want to add people have TOS for very different reason's, I was Vascular.

Much love, Roz

Dear Pete,

I have alot to say and share with you.

The one advantage I had was I have MD's in my family, so when I got the RSD DX and they could't help me I knew I was in trouble.

I was told to research and research I did. I have never ever cared for the medical field I am a hairdresser, but a creative thinker. Like you I was self employed, so I believe in problem solveing as well.

The pain is worse than childbirth it really is. You must be very strong and brave to have hung on so long.

About 4 years into RSD, my RSD limb began to shake, I started having short term memory loss.
cont..

when i first started to complain about the pain my foot doc knew what it was, he would unwrap my foot and it would turn purple you could see the sweat beading off of it air would hurt it and i would guard it i would cry when he would touch it. one day i ask him how did you dx rsd so fast he said when i went into surgurey i wasnt fully under and they hit the bone and i didnt move or say anything and he said he knew i could take pain and to come into his office and cry by him lightly touching my foot he knew he also said i was text book had all the symptoms. i did have to get a mri and did the alchol test and my foot went 20 degrees colder then the other and stayed that way. i went to see 2 other dr to confirm rsd, by this time 3 months after surgery my foot was blue and atrophy has set in toes ankle are frozen wont move, again rsd was the dx.

I had two PM doctors--both of them told me to get the hardware out. I think it made a difference for me. The screws were literally touching on the nerves, and everytime I bent my toes I could feel the nerves scrape on the hardware. How can that NOT affect someone? So I took the plunge and took them out. The surgeon I had was very knowledgable of RSD and referred by the pain docs. I am very happy the hardware is out. At the same time, I don't know that it is the answer for everyone, and in some cases surgery makes it worse. See what your docs think. In my case, some of the issues had resolved before surgery (it was no longer as swollen, etc.). I don't know if they'd recommend surgery for someone who has very active RSD at the time.