Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 10-25-2015, 07:28 AM #1
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Originally Posted by Juliek72 View Post
Tomorrow I will be seeing my ortho and as he has said there is nothing he can do my broken part of my foot is healed so that's why he sent me to a great pm dr. With this said he has the power to write the note to my work allowing me to stand up and do my job so I can return to 5 days a week

I am scared to death. My pm dr said its ok for me to stand but to not over do it. I stand in 2 hour intervals with a 30 minute break in between. It's not a hard job just standing and walking. As of now I hurt when standing or walking but I have to do what I need to do. I need money or I will be homeless. If I can't push through this then I will have to file for disability or find a sit down job for half of what I'm making. This really sucks. Sorry for the language

My symptoms right now are some nerve pain that comes and goes in my arm, face, leg and my foot My foot feel like a knife is in it. I did have 3 injections in my nerves in foot last Wednesday so maybe it's just sore.

I am going to pt 3 days a week with Aqua therapy and pt. I'm on a ton of meds

My questions today are?
If you have the nerve sensor in your back how long were you diagnosed before you had it put in? My pm said that if this last nerve block didn't work we would consider the sensor put in my back
Is it a major surgery? What is the down time and does it work? Will I still use meds?
Also has anyone ever had nerve pain come and go in other parts of your body that come for maybe 15 mins to an hour and it gets very hot and then goes away but comes back later?
Sorry I have so many questions but in so confused. Also I am probably repeating myself so I apologize.

My wonderful new family God bless I can't sleep


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Hi Julie,

I had a Spinal Cord Stimulator Trial performed a few years ago. We decided to go that route after about a year of unsuccessful attempts at other treatments. One of my doctors said that once implanted, these offer successful relief in 85% of patients. Unfortunately for me, I was one of the 15%. The minute the switch was flipped on, I screamed, cried, sobbed, and wept bitterly for 17 straight hours. The pain was so intense and so unbelievably horrendous that I prayed to God that he would just end my life that day. I didn't know a person could experience that degree of physical suffering and live! The woman that I was with started crying, as she watched the degree of my suffering, knowing there was nothing she could do to help me, but pray. Yet, I would be one of the first to recommend giving it a try, if that is what you decide that you want. But I would also recommend giving the surgical trial a whole lot of thought and prayer before dipping your foot in for a try to see if it works for you.

What they do is: They surgically insert a line next to your spinal cord. This line would then connect to the stimulator which would buckle on your belt. It has different levels of intensity. Once it is turned on, you would adjust the setting to where the doctor tells you to start the intensity. And then over a course of what was for me a 2 week trial (though I didn't make it through even the first hour with mine), you slowly increase the intensity to where it would be, if they were to insert a permanent stimulator in your body.

Inserting the trial stimulator was about a 45 minute surgery. And I can't remember, but I think inserting the permanent one would take around a couple of hours, maybe a bit more than that.

___ And then you were asking about pain coming and going in different parts of your body. Yes, that does happen. In my opinion, hit those areas as hard as you can with physical therapy, and stay on top of it with those areas, so that the pain doesn't become permanent. And Desensitize the HE-double tooth picks out of that area. Use soft cloths, popsicle sticks, different textured cloths and objects on those areas. That will help to convince your CRPS that it needs to go play else where. What you do within the first 6 to 9 months in those areas will be crucial to helping ward off the disease spreading its symptoms to those areas In MY OPINION. I'm not a medical professional. I'm just sharing with you what has happened to me through out the course of my experience, as I've battled with this dreadful disease.

You are in my prayers about your job!! I am putting you on my prayer list. God's peace!

-Spike-
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Old 10-25-2015, 03:01 PM #2
Juliek72 Juliek72 is offline
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Quote:
Originally Posted by -Spike- View Post
Hi Julie,

I had a Spinal Cord Stimulator Trial performed a few years ago. We decided to go that route after about a year of unsuccessful attempts at other treatments. One of my doctors said that once implanted, these offer successful relief in 85% of patients. Unfortunately for me, I was one of the 15%. The minute the switch was flipped on, I screamed, cried, sobbed, and wept bitterly for 17 straight hours. The pain was so intense and so unbelievably horrendous that I prayed to God that he would just end my life that day. I didn't know a person could experience that degree of physical suffering and live! The woman that I was with started crying, as she watched the degree of my suffering, knowing there was nothing she could do to help me, but pray. Yet, I would be one of the first to recommend giving it a try, if that is what you decide that you want. But I would also recommend giving the surgical trial a whole lot of thought and prayer before dipping your foot in for a try to see if it works for you.

What they do is: They surgically insert a line next to your spinal cord. This line would then connect to the stimulator which would buckle on your belt. It has different levels of intensity. Once it is turned on, you would adjust the setting to where the doctor tells you to start the intensity. And then over a course of what was for me a 2 week trial (though I didn't make it through even the first hour with mine), you slowly increase the intensity to where it would be, if they were to insert a permanent stimulator in your body.

Inserting the trial stimulator was about a 45 minute surgery. And I can't remember, but I think inserting the permanent one would take around a couple of hours, maybe a bit more than that.

___ And then you were asking about pain coming and going in different parts of your body. Yes, that does happen. In my opinion, hit those areas as hard as you can with physical therapy, and stay on top of it with those areas, so that the pain doesn't become permanent. And Desensitize the HE-double tooth picks out of that area. Use soft cloths, popsicle sticks, different textured cloths and objects on those areas. That will help to convince your CRPS that it needs to go play else where. What you do within the first 6 to 9 months in those areas will be crucial to helping ward off the disease spreading its symptoms to those areas In MY OPINION. I'm not a medical professional. I'm just sharing with you what has happened to me through out the course of my experience, as I've battled with this dreadful disease.

You are in my prayers about your job!! I am putting you on my prayer list. God's peace!

-Spike-




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