Symptoms:


From head to toe I feel a cold burning, deep bone aching pain-feels like they could explode, muscle cramping/spasms, feels like something liquid is running down the outside of my body.


Very sensitive to all vibrations, music from a passing car...had to turn down the speaker on my side of the car due to the vibrations causing pain. Thunder from a storm will often leave me curled up in a ball. A lawnmower cutting grass in the neighbors yard sends me seeking refuge.


Very sensitive to all touch...light touch and some times a delayed pain reaction to touch.
Very sensitive to cold air even from the refrigerator/freezer. Very sensitive to the heat...my body doesn't always sweat....sometimes it gets very dry and HOT.


I often have changes to skin color...mostly my legs and feet turn purple, mottled. My hands turn mottled when they sweat. When they are really hot they stay bright red and dry!


I have to be careful with water temperature as sometimes my feet are so cold I can't tell the water is too hot. Same goes for the cold... I can feel the cold, I just can tell how cold...it just BURNS.


I also often describe my pain as the pain you feel after hitting your thumb with a hammer....that instant severe pain...but it never lessens or goes away.






Questions

• What is the safety and effectiveness of SCS in relationship to RSD?
  • I've already had 4 Lumbar blocks, with little to no success.
    • Lasted at the most 8 hours.
  • I've tried TENS unit which only added increased pain, within 25 minutes.
  • I've tried STS by Dynatron. Within 45 minutes, this caused increased pain from level 4 to 10 and spread from ankle to torso on right side, turning skin dark purple.

• How many people with full body have successful outcomes with RSD & SCS?

• How many months do you consider a success?

• How many people with full body have negative outcomes with RSD & SCS?

• How long, how many months,of successful pain relief before pain returns to extreme levels the SCS had to come out?

• What do I do if I have intense (10++) pain during the trial?

• What do I do if I have zero relief during the trial?

Does this look good? Is there anything I am leaving out? Is this too much? I go Friday and I need to make sure my ducks are in a row so I can get this printed out and into my folder to take with me.
I already have a list of current treating doctors, addresses, phone numbers, and current medications.

Thanks to all of you for helping me in each and every way!

Abbie

Now REST if you can. Permit your mind to wander to something else, giving permission to experience something...... anything you enjoy as a passive participant.... soft music, gentle wave sounds, gently falling raindrops [ you know, from a white noise generator ].... I find such things together with dwelling on things for which I am thankful divert my attention from the immediate troubling pain even a little pit. Get into your favorite body position, and relax, even for a half hour. If you do something thusly, you will refrain from tying yourself in knots as you approach the meeting for which you are fully prepared.

Praying that you rest,
Mark56

Abbie, the fact that you had any relief at all from the nerve blocks is a good sign. Your body is responding, so there is hope!

I'd really like to know what your Dr would say if you asked about the pain pump.
Really curious!

The nerve blocks were 8yrs ago... 1st one lasted approx 8 hours., 2nd one approx 2hrs, 3rd one approx an hours with the 4th lasting no more than 45 minutes.

I did add the question about the pain pump to my list of questions.
I asked are there any other options.... Pain pump?, Ketamine?, Deep Brain Stimulation? Anything in the pipeline that's not yet been discussed?

I am looking forward to hear how it goes at your appt.
That's a very impressive list btw

Thinking of you all day today Abbie... check your email
PEACE
BMW

P.S. Hi Rrae and Mark

It's SO GOOD to see you, Burntmarshmallow!
You always bring a smile to my face when you pop by.
I hope things are going well for you these days?

Rae

SCS is a NO GO!!!
RSD is to far/wide spread.

Pain Pump is also a NO GO.
(to be honest by the time we got this far all I was hearing was blah, blah, blah.....)

He said something about my depression but he has no report from my Psychiatrist nor has he talked with her... Nor does he have a report from any Psychiatrist regarding me. So how can he deny based on this??????

Don't know what to do now.... Next Neurology appt. in December.... Guess I do as I've always done until then and then see where we go from there. I know there are other docs and research going on.... may someone let me be a quinea pig.

Can you get a second opinion...maybe IU Med Center? I'm so sorry dear friend..and a little angry. gentle hug and continued prayers.

Lots and Lots of CARING going on here, with an overdose of confusion on my part as to where your doc was coming from, especially given the lack of psych report from your psych doctor. I sidle up next to Alffe, wondering whether another opinion is well worth the while!?!?! You see, when I was in dire circumstances regarding the declining situation with my spine and four spine surgeons turned me away.... by the time my pain management doc found my HERO neurosurgeon to work on my spine, the NERVE DAMAGE was far and away too severe for my nerve to ever HEAL. The four previous surgeon buffoons [names may be served as a final course to this evenings meal....... nah, I had best not do that] set me up for permanent nerve damage. The back surgery performed finally on me was ultimately tremendously successful at resolving my back issue.

Why do I bring this up??? For the same reason Alffe rightly asks... well what about a second opinion? So, Abbie, please give thought to whether you have been well served by your present doc, whether another opinion may bring a different perspective to your pain management......

And, know this, you are in my prayers,
Mark56zz