I have RSD in phase III and understand pain - so I'm here to help if I can

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BobinmidMO
Regular Member


Date Joined Mar 2010
Total Posts : 39
   Posted 3/7/2010 3:12 PM (GMT -7)   
Hi,
 
I'm Bob and I live in mid-Missouri.  In 1997 I had an accident that crushed the main nerves in my left leg and groin.  Because nerves die from the furthest point away from the damage, it turned my foot and ankle black first even though the crushed nerves were way up high.
 
After going through Workman's Comp hell for 18 months, I was finally able to use my own insurance and my own doctors  who have been great ever since.  By 1999 the RSD had continued to spread upward towards the knee on the left side and the pain just kept getting worse and worse.  That's when I was forced to give up my job as communications oprator for the State of MO and start on OxyContin.  3 months later I also landed in a wheelchair.
 
As the damage grew, so did the pain so 6 years ago we installed my first morphine pump, and it's been a true blessing.  Though my OxyContin dosages are at 160 mg and I also take OxyIR for breakthrough pain throughout the day, it's the pump that keeps my pain at levels so I can still have a little bit of normal life.
 
5 years ago the RSD spread over to the right leg and has now done around 80% of the damage it took 12 years to make out of the left leg.  Then 1 1/2 years ago I went septic bodywide and wow was I infected.  Two days later while I had 5 IV's trying to battle the infection, a blood clot hit my lungs.  Oops, did I leave out the fact that I've also had a bit of a run with blood clots for the last 5 years or so?  Guess the guy upstairs decided to give me one more shot at getting it right, but when I finally did get out of the hospital, the doctors said that both legs had to be amputated above the knee A.S.A.P.  Let me tell you, it's hard making yourself chop off body parts.
 
The day before surgery, I decided I coul only handle one radical pedicure at a time so I let them take the left leg since the damage was a bit higher.  They agreed, but only if I'd do the right leg later.  So far I haven't gotten around to later even though my right leg is black and nacrotic almost to the knee and the actual tissue damage is above the knee.  Meanwhile, just before I was to get snipped, my pump battery passed away.  The timing really was crummy!
 
A few weeks after I became a shorter man, we got a newer, better, fancier model installed and wow was I thankful when they turned me on.  I'll take anything I can get these days.
 
Do I understand pain, you're darn right.  Do I care about others like me, more than you'll know.  Am I here to help if I can, in any way I can.  So that about say's it all.  Have a good one, Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  Within 6 months, I had purple, red and some black area's almost to the knee area.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time.
 
In 2004 I got an Intrathecal morphine pump, and I just got it replaced around a year ago, so now I'm on my 2nd model.
 
5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time.
 
1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.
 
Last fall the doctor's decided I needed to have both legs amputated above the knee's, but I decided I could only handle one at a time, so I went with the left leg since that one is a little worse off.  The right leg is now black all the way to the knee.
 
I haven't slept in a bed for over 12 years and have instead accepting the fact that I can only sleep in a chair upright.  Since I'm in RSD Phase III, it's still progressing, but I refuse to go on a pity party because those who do, party alone.  Thanks to a wife of 27 years and great family and friend support, I'm only half nuts half the time.
 
Guess that about say's it all.  Bob.


IsThereAnEnd?
Regular Member


Date Joined Feb 2010
Total Posts : 66
   Posted 3/7/2010 3:18 PM (GMT -7)   
Wow Bob ~ what a story! I'm so sorry pain has brought you here....but I would like to welcome you and look forward to learning more about you ~ it sounds like you know all to well what CP is and the battle we all fight, 24/7 ~ I hope you are having a tolerable pain day!

Huuugggsss!
Cardiomyopathy, Celiac Disease, High Blood Pressure, 2 Failed Fusions @ L4, L5, S1, 2 Failed Fusions @ C7 & C8, Implantible bone growth stimulator cervically, and soon to have Neurostimulation Therapy to treat lumbar area, Chronic Pain Sufferer for 8 years, take several meds daily to survive! Praying for a miracle and fighting through the pain daily ~


willowsgrandma
Regular Member


Date Joined Jan 2010
Total Posts : 78
   Posted 3/7/2010 3:44 PM (GMT -7)   
eyes redface hi bob and welcome! i was just curious....the neurologist that diagnosed my rsd used a test that involved needles and electrical shock. is that the kind of test you had? my pain is mostly in my arms really BAD-the burning, skin soo tender to the touch. my legs really ache and abecome so STIFF in a very short time. what do you take for your pain? take care.
Donna turn smilewinkgrin blush

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/7/2010 5:17 PM (GMT -7)   
Hi Bob,

Wow, you have quite a story to tell! I too am sorry that you had to go through all that & that is the reason why you are joining us, but I'm happy to welcome you to the group. I'm sure you'll have a lot to add. This is a fantastic group of people, so please do stick around.

hugs,
Skeye

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/7/2010 9:14 PM (GMT -7)   
Hi and Welcome!!

You sure do have a thorough knowledge of pain, I'm sorry to say. But you've found a wonderful place to land and a bunch of folks who truly care. I know you'll be a great resource and we are always here for you too!

Hugs,
Chutzie
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 3/7/2010 9:32 PM (GMT -7)   
Hello Bob,
Welcome and thank you for sharing your story. My hat is off to you. I can't imagine what it was to go through the process of having one's leg amputated. I joke that I'd like to cut off my left arm but when it had to be considered seriously it wouldn's be an easy decision.
I have RSD in both arms which was caused by continuous falling before I had both knees replaced. My arms had been doing fairly well until I had my right shoulder replaced in 8/09 and immediately after surgery an area near the incision line became red, hot to the touch, and had a purple hue to it. Here I am 7 mon. later and I now have RSD in both arms. Sometimes I feel like I am being electricuted in both of my arms and across my upper back area. The discoloration and swelling in the left arm changes depending on the amount that I use the arm. The more I use it the more it gets reddish purple, hot and swollen in the whole upper left arm. My scapula is so sore that I can't stand clothing to touch it or the upper arm. I had to retire my job of being and R.N. after my 4th cervical disc surgery because of the fear of becoming paralyzed if bumped the wrong way. I have an appt. witha pain management group in a couple of days and pray that they can help me because I'm very miserable!
Does this sound like RSD to you? I'm also having trouble with my ears. It sounds like I have water in them like you sometimes feel after swimming. I guess I'll find out when I see this new doc what he thinks about that.
I'm so glad to talk to you. These people on this wonderful site have helped me and many others to keep our sanity. We shoot ideas off of each other, cry with each other and over the internet "hold hands" when we are troubled. Thank you for sharing your story and I'm sure you will be helpful to many of us and I hope we can return the favor.
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.
 
Find blessings in every day!
 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 3/7/2010 10:46 PM (GMT -7)   
Welcome Bob

I am really glad you have found our Healling Well Chronic Pain Forum! WOW you have had quite an experience, one that I would not wish on any one! You have really had quite a time of it! I am really glad you have shared your experience with us, I am sure that you will be a welcome addition to our family. We have a really caring and compassionate group here, and you will fit right in! Many people will be able to benefit from your knowlede and experience, and I hope that you will also benefit being here on this forum,I think you will find that there is always some one that is willing to listen and give you caring compassionate support! I am sure you will find that you will never be alone here!

Again I Welcome You to our family here on this Chronic Pain Forum!

White Beard

BobinmidMO
Regular Member


Date Joined Mar 2010
Total Posts : 39
   Posted 3/8/2010 10:13 AM (GMT -7)   
My new dear friends,

How in the world can I possibly ever express just how deeply touched I am by your most caring words and more. To put it frankly, I'm blown away. My only wish is that maybe if I'm really lucky, I too can help you wonderful people in some possible way.

With all my heart, thank you and it's an honor to be a part of your wonderful community.

With care in my heart for all of you too, Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  Within 6 months, I had purple, red and some black area's almost to the knee area.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time.
 
In 2004 I got an Intrathecal morphine pump, and I just got it replaced around a year ago, so now I'm on my 2nd model.
 
5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time.
 
1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.
 
Last fall the doctor's decided I needed to have both legs amputated above the knee's, but I decided I could only handle one at a time, so I went with the left leg since that one is a little worse off.  The right leg is now black all the way to the knee.
 
I haven't slept in a bed for over 12 years and have instead accepting the fact that I can only sleep in a chair upright.  Since I'm in RSD Phase III, it's still progressing, but I refuse to go on a pity party because those who do, party alone.  Thanks to a wife of 27 years and great family and friend support, I'm only half nuts half the time.
 
Guess that about say's it all.  Bob.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/9/2010 2:14 AM (GMT -7)   
Hi Bob,


I too want to welcome you to Healing Well's chronic pain forum. I am very sorry that you have to be here but glad that you found us. I think that you will find this to be one of the most caring and compassionate group of people that you would ever want to meet. It is nice knowing that we are not alone dealing with CP, that there are a whole lot of us out there. We all tend to learn from each other here.



I always say each one of us has a story to tell. Wow, do you ever have a story to tell. You have really been put through the wringer so to speak. You are proof that only strong individuals can learn to deal with CP and all the issues that go along with it. It can sure be a tough one to bite into.



I do hope that you will hang out with us here at the forum and keep us posted on how you are coming along. We do ask that all new members read the forum rules and abide by them. Please note in the rules that there is a 10 line limit on our signature line and I ask that you edit your signature line accordingly. Double spacing is considered a line. This forum is offered to us at no cost by the the owner and he only asks that we abide by the rules set out.

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/10/2010 12:32 PM (GMT -7)   
Hi Bob:

I just wanted to add my welcome to HW. This is a wonderful place, and I know you are going to fit right in! I'm keeping this brief because I'm having a rough time right now, but I wanted to at least say hello.

Looking forward to getting to know you better.

Lorie

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 3/10/2010 1:13 PM (GMT -7)   
I too would like to extend my welcomes to you Bob. I wish that you didn't have to live through all that ou have had too, but from your words I would say that it has only made you stronger! Wow!!! To go through all that you have been through and still be quite upbeat about things, that is really awesome!!!

Anyway......welcome to the family.

Hugs

Scarred
I live to "Tame My Pain!" 

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