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Brain & Nervous System | Last Active: Apr 26, 2023 | Replies (118)

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I was diagnosed with RED/CRPS in the fall of 2012. Within a year I was wheelchair bound as it became excruciatingly painful to be weight baring at all. Then my blood pressure started flipping all over the place, in the space of an hour it can go from 90/60 to 225/115. Now it has spread to my right arm-so apparently I will be one of the cases that is going full body. My question is this ... Why is no research being done? Why are we being left to basically a situation of 'let's try this, no-let's try that'. The treatment of patients suffering with RSD/CRPS is archaic.

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Replies to "I was diagnosed with RED/CRPS in the fall of 2012. Within a year I was wheelchair..."

My daughter was diagnosed with RSD/CRPS 8 years ago after she was in an accident. It still took them over a year and many many doctors to tell her what was wrong. Since then she has been in a walking boot and uses a cane. She has had a spinal stimulator put in that had to be done because the anchors in the back came loose. After they came loose the second time she had a neurosurgeon surgically implant the leads in her spine. He butchered her. Left her with three 4-5 inch incisions that should have been no more that 2 inches. Did not remove all of the old leads because it was too much work. She developed an infection right away. After having this last implant she was not getting the relief she should have been getting. Doctor said they did not need another MRI. Her pain doctor ordered it and found that the machine was not placed where it was directed to place the pain specialist. After having this last machine for 5 months her legs were cramping she had to go to the ER and they admitted her to figure out how to get the cramping to stop. Needless to say the machine can not be turned on. She has been trying to get another doctor to remove the machine and put it in the correct spot. NO ONE WILL SEE HER. Her pain doctor told her that she can not go back to the doctor that did the original surgery. What he wants to do is go in from the top and her pain doctor said that it could paralyze her. I have seen people in pain but never the amount of pain that she is going through. Now our state is telling her that they are going to take her pain meds away and she will have to survive on almost nothing. I can not stand back and watch a 35 year old woman be a victim. She deserves better. She was a nurse and can not practice but still has to pay on her loans that were private. We have contacted Mayo hoping that they will be able to help. There must be someone out there. She is at the point that she does not want to continue living.

Welcome to Connect @cmp4001. It must be heart wrenching to see your daughter in such pain and to endure such treatment. There are a number of discussions here on Connect that you may wish to read and members to connect with.

See this conversation https://connect.mayoclinic.org/discussion/after-knee-replacement-i-developed-rsd-i-have-had-severe-pain-in/
Also see the discussions in the Chronic Pain group https://connect.mayoclinic.org/group/pain/ where you'll meet several members with similar stories about pain meds.

For the moment, I'd like to introduce you to @overwhelmed @janetpr @rowan @ursus who have written about their experiences with RSD/CRPS.

Hi eileen,sorry about you having this disease.i also have it , do u know if you are type 1 or type 2 crps. Im type 2 from a horrible fall at work. Started in my heel, from a shattered heal and two other bad broken bones. Went from my right heel to my whole leg to my stomach. Which was awful and still is im full body now internal organs are all eďffected too.my blood pressure is crazy like yours how it jumps up too extreamly high levels just by standimg up and walkimg a short distancei , went on blood pressure meds about a year ago but it still jumps up high . Have u tried any treatments , ketamine infusion, lidacaine infusions. They helped me tremendous in the past. But now they just stop me from being totally bed řiddim,but i cant really do anything. I have it in my face neck and head now and the sweelimg and pain is terrible.i just bought a vagus Nerve stimulátor . Have u heard of it , it stimulateďs the vagus nerve on our brain stem . They say it takes a couole weeks to start seeing progress. Ive been using ten days so far. No changed yet .but fingers fingers crossed. I go get 3 ketamine boosters in pa the next 3 days. Hoping to get reliéf. Hope you are having a low pain day