denial of rsd
 

Did any one here go thru denial of acceppting that it is rsd and there is no cure.Typical in a hard head yes:rolleyes: I read the post here and my heart
goes out to each and every one.I have been diag many docs .
Initial dx sprain strain then tos then rsd.WC surely has something to add to this but..Block..Did any of you go thru this?Curent doc says he cant beleive how fast its progressing.I have had alot of test for tos prior to surgery.
I look at the pictures of effected limbs and atrophy is there,swelling a minimal
at times ,but pain is horrific@ c level spasms jerks skin rough.,body temp. sweats.Am I just hard headed??

Hi siccy!
I don't think you're hard headed.
I too was originally diagnosed with strain/sprain. Then TOS. And now post surgery for TOS I'm being referred to a doc who specializes or is familiar with RSD.
While I'm not in denial and am aware that I could be living with the pain and symptoms forever, I still hold out hope that there is a fix for me.
Right now at this moment I'd love to tell all the docs, pt's, surgeons, W/C, and my attorney that I'm all done. Goodbye.
As of yesterday I've had it with explaining my symptoms over and over again.
My ortho bent and twisted and pulled on my arm/shoulder yesterday trying to determine the extent of SLAP lesion.
I hurt from my neck to my fingers. Feels like someone used my shoulder and neck for a punching bag. And to further confuse me......my hand on the opposite side is all tingley. Never had that issue before surgery and yesterdays exam with the ortho flared that up.

I thought at the start that I couldn't possibly have it. Denial, I was the Queen for awhile. :D I think all of us went through it at some point. Who wants to believe that they have something so painful that there's no cure for?? Not me!! But I got it so, I live with it.

The reason I denied it to myself was because I didn't feel any kind of burning. I had cold leg/foot, color changes, massive swelling and pain but that's it. As if that's not enough! Cruising the net and reading though the one thing that's always mentioned is the burning. Soooo, figuring if I didn't burn, then this wasn't me. Oh boy, took I think 4 to 5 months then one day.....I felt the burn. OMG!!! So wish it would go away and I never feel it again.

Another reason was that some days I'd feel so good, pain so low and I'd think, see I'm fine. *looking down at my purple legs and feet* Yeah, the next day I'm miserable and thinking how could I doubt it??!! It's normal to feel denial, anger, grief, etc. Just like mourning a loved one.

Hugs,
Karen

*HUGS* gbsb. Sorry the doc made you hurt like that and I hope the tingle stops!

denial is all part of the grieving process ... some stay at that level for years. i still get surprised when i look down and see the purple swollen foot and feel the pain ... and it has been well over 20 years.
any way you get through any day is a good thing ...
joan

You spoke some of my thoughts...
 

Thanks, Karen. You summed up some of my thoughts! :hug: It is hard to believe on some days, "yes, I have this. I really have some chronic pain syndrome that practically no one has heard of. Naw... not me. It can't be so!".

For a while I too did not have burning pain. But that has changed as well. Now I have the burning pain, stabbing pain, crushing pain...

:grouphug: Hugs to you all... hoping you have a pain-free or less-pain evening!

:hug: No day seems to ever be very easy but we make it fine don't we? :D Got to really.

I take every opportunity to educate others on RSD. Some days I feel like it'll never be well known. I get down a bit because I think I'm only one person in a small part of the world. What good am I doing?? Most of the time though I actually feel better for telling others about it and think, even though I'm only one there are many others and I AM making a difference no matter how small. I've told one or two people and they have gone to someone in their family or a friend and find out that their friend or family has heard of it and knows about it and tell them even more and then it goes to a friend who's never heard about it, etc. It really doesn't end. One little ripple on the water from a stone keeps going outward from there. Each of us are a stone making a ripple.

I find it helps me stay focused and not feel so bad some days. :grouphug: for us all and our strong will that keeps us fighting everyday no matter what. We all have something or better yet, someone to live for, if only ourselves. We are strong individually and a wall of steel together!

Hugs,
Karen

Hip Hip Horray for you Karen! Your right - It is VERY important to educate others. I've made it my goal in life to explain to anyone and everyone I can about my husbands condition. KNOWLEDGE IS POWER! As a matter of a fact I recently explained to a few of my co-workers about what he has. They were suprised, amazed, dumfounded and sympathetic. They also learned something - Which is a GOOD thing. I know now in my heart that if the day comes where they ever run across someone with the same condition they will remember my words and what I tought them.

I recently saw too - to my amazement a bumper sticker that read something to the effect of "RSD Survivor" and had reflex sympathetic dystrophy around the edges - I LOVED IT!!!! I feel for the woman who was driving the vehicle BUT I thought....What an awesome way to spread the word!!! To let people know that there IS something out there called RSD!

I know its frustrating sometimes to talk to others about you or your loved ones condition - That people find it hard to understand BUT with your words and even the help of an website link or two the more people we can tell about this horrible condition the better it will be understood by others.

Successful treatment of RSD (aka CRPS or RND)
 

Dear Hands,

I just sent a long message about our daughter's experiences with RSD, but I'm not sure it got sent. I'll briefly re-state the message just in case. Our daughter was tremendously helped by Dr. David Sherry of the Children's Hospital of Philadelphia. His waiting list was too long, so we bought his DVD and gave it to a local physical therapist in our (large) city. Dr. Sherry graciously offered to have his staff and him consult with our PT. Our PT put our daughter thru 3.5 gruelling weeks of full-time (9AM - 4PM) physical therapy. Some improvements started after a few days. Dr. Sherry recommended that she not have any pain meds or anesthesia, so our daughter toughed it out on her own. Full function returned by the end of treatment. Her pain decreased during treatment, but didn't fully dissapate until several months later (after her treatment had already ended). About one year has passed and our daughter is symptom-free. Hope this is helpful.

*hugs* Yep, all that fire we got needs to go somewhere so what better way? :D I have 2 things on our car, one is an RSD sticker in the window and the other is a car magnet with RSD on it. Hubby has gotten asked if he has RSD in the parking lot before and then he tells them no my wife does and then I've heard, My son has it, or my daughter or my spouse. They know they're not alone in this town, there are others here with rsd too. If you want magnet or sticker to to rsdhope.org. They sell all kinds of RSD stuff on there, it's where I got mine. :D

Hugs,
Karen

Thanks bunches!!!
 

Wow! Thats awesome to know! I'm gonna head over there this week (gotta wait for payday - lol) and pick up somethings...Hubby will be excited - He had asked me before "I wonder where they got those things" so I'm sure he'll be surprised when a package shows up at our door! :)