Complex regional pain syndrome or reflex sympathetic dystrophy

Posted by oldnana @oldnana, Mar 22, 2016

After knee replacement, I developed RSD (reflex sympathetic dystrophy). I have had severe pain in my legs for a year and half. Does anyone have suggestion as to how I may control this disease

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Hi just saw ur post on the book I'm new to here I've had RSD in my feet 'the right 1 is the worst' 4 15yrs really don't know how much longer I can keep going anyway hi again will check out the book.

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I have a Spinal Cord Stimulator from Medtronics, backed by a team of great people. I recommend it to anyone! But if you decide it's for you, know this: You will hate it for the first 2 weeks. That's okay. Work with your team and your implant controls to find a good place. Do EXACTLY what your Dr says (he's done more SCS's than you can imagine). If he says "Don't bend over" or "Don't lift anything heavy", then DON'T!!!! The SCS takes care of anywhere from 80-90% of the pain in my arms. I can also scrunch my neck down and increase the strength of coverage AND extend it down to my feet.

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@bear420

@JustinMcClanahan Have you heard of any one having it in there face and both eyes. The doctors do not know what they can do for me right now. I just like some relief from buring in my eyes. I also settled in my lower right rib cage. Really hard to do anything because some part of your body hurting bad.

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Hi @bear420, I have CRPS in all of my limbs + face and most recently my eyes! My eyes too burned like crazy one day and I had to make an emergency Optometrist appointment. Initially they were able to see that my corneas were shredded from the dryness in my eyes. That was due to the medications and not part of CRPS. I now take special gel eye drops several times a day- for the rest of my life. The CRPS became clear when I had the pressure testing on my eyes and they were able to see that the nerves in my eyes were thinning.
Other problems have also made the Optometrist believe that I may be heading towards a diagnosis of Glaucoma as well!!
I already have lost all of my teeth due to dry mouth as well, again as a side effect of the drugs. I am a mess!!!!!!

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@janetpr

One way to control RSD is to undergo therapy, whereby you retrain the brain to understand that there is no cause for pain, by exposing yourself to the pain intentionally. After a short while your brain will realize there is in fact no injury or cause for pain and you can go about your normal life. However, every so often it will rear it's ugly head and you'll have to do the therapy. I am a cronic pain sufferer, however, at least I do not have to deal with this all the time anymore. Hope this helps.

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THEY say its the brain no way thats why theres a blanket term for our condition its COMPLEX means they have no clue why would otc or opioids help yes ur brain trys to cope hence we forget so dont remember what pain we go through i maintain on a those havent went up in meds 4 years but since this opioid epidemic bs insurance telling drs what we can have is a crime ive had it thay know if it helps n ya made it years why change because they dont want to pay an are scared to do there jobs im happy u found something i did now it a street fight to find for relief Drs orders

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@overwhelmed

Sorry janetpr, but I think your recommendation is careless and based on old school thinking of RSD- now actually referred to as CRPS- Complex Regional Pain Syndrome. Although nowhere have I ever seen recommended to "expose yourself to the pain intentionally". That's a new one.
Most of us who have been coping with CRPS for a while now (I have had it 8 years now) have heard it all. Especially experienced at some doctors still of the mindset that CRPS is Psychological disorder brought on by the person themselves. The most comprehensive study and informative site that I have come upon recently is that of Sean Mackey, MD, PhD, is a Professor of Anesthesiology at Stanford University Published on Mar. 19, 2013. Unfortunately, because I am new to this site it will not allow me to input the URL, however I am sure you can find the YouTube "Treatment and Research: What's New?"
I consider myself fairly lucky, in that it only took 9 months to be diagnosed. However, unlucky in that my family physician took way to long to refer me to the Orthopaedic Surgeon who diagnosed me. You see the first 3 months are key to possibly being cured of the condition.
I was then referred on to an Anesthesiologist to have many, many nerve blocks, which for myself, only served to "numb" the pain until the block wore off. I also was on multiple medications including gabapentin & hydromorphone which did not agree with me. I did get into a trial for ketamine infusions over the period of 5 days, which I had great hopes for, however it did not have any affect on me. I most recently "applied" for the Spinal Cord Stimulation "SCS" surgery, which although only 50% success rate, I may be one of the "successful" 50%!! Unfortunately, due to having a Head Director of the Pain Centre who was one of those doctors that has not kept up to the "validation" of CRPS/RSD. refused my diagnosis of CRPS (even though my CRPS diagnosis had been validated by many doctors including Neurosurgeons, Neurologists, Anesthesiologists, & the original Orthopaedic Surgeon). She did agree that I had some kind of neuropathic condition, but then booted me out of the Pain Centre with no diagnosis. Hardly acceptable being that I am from Canada & the Hospital is the only one offering this type of treatment! I am in the midst of filing a complaint...however it most likely will have no implications, & not just because the Director just retired from the hospital.
I am currently managing my pain (which is in my left leg up to my hip & my right to my knee- beyond my knee I have Meralgia Paresthetica) with Hydromorph Contin 1200MGs/day, Cymbalta 120MG/day, Lyrica 600MG/day, Fentanyl 50MCG (patch) every other day, hydromorphone 8MG- max 10/day & Quinine Sulfate 200MG. I do have more but they are for managing most of the side effects. I also suffer from migraines which I take Cambia for.
Last year when they had me take an MRI in preparation for the SCS surgery they found two very large cysts on my ovaries which they originally did nothing for until I ended up in the Emergency Department by ambulance at 3 a.m. with ovarian torsion! But because I already had children & a hysterectomy they decided not to perform surgery. They are now just managing with Visanne.
Due to all of the dry mouth caused by the medications I just had to have oral surgery and have 14 teeth removed, Now I have dentures!!!!
Finally to add insult to injury, my husband who has been my primary care giver for the past 8 years ended up in the hospital in pain two weeks ago. After some blood work, a CT scan and a colonoscopy we found out he has colon and bile duct cancer!! I am fear that they have not caught it early enough...my husband is very jaundice and in a whole lot of pain. It took two weeks to get an appointment date for the Oncologist-Radiology which is tomorrow afternoon. Another one is with the Surgical Oncologist I believe.
I really don't know how much more I can take. I have almost ended my life several times, as I cannot see continuing to live with this pain for the rest of my "natural" life. Now I am so conflicted,,, I need to be here for him, however I am not much use...We are not much use to each other at this point.
Regardless, I hope the information I have provided regarding CRPS helps someone. Just don't take the diagnosis "It's all in your head" and please, please do not inflict pain intentionally upon yourself!! Good Luck!

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my story is a mirror im on that ledge ill cya in a pain free world someday GB

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@colleenyoung

Hi @overwhelmed,
Thank you for this comprehensive post about CRPS
Here is the video link to the research you mentioned, done by Sean Mackey, MD, PhD, is a Professor of Anesthesiology at Stanford University Published on Mar. 19, 2013. https://www.youtube.com/watch?v=Uo1UNea_tfQ

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Watched the video. It was great. A lot of good information

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Welcome new members @tonyagann and @jonjon812 to this discussion group about complex regional pain syndrome (CRPS). We look forward to getting to know you. Where does CRPS affect you? How do you manage the pain?

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I was diagnosed with CRPS in my left shoulder. Has anyone ever had it in their shoulders. I had it in my ankle when I was 13 and it went into remission and now it’s back. I feel almost like I’m being bullied by my doctors. I had a nerve block in my neck to see if it would help and while I was waking up the doctor told me the next one he wants me to do while I’m awake with a local anesthetic. I thought he was crazy. I had a panic attack when they went for the IV. Now I’m not a baby when I come to needles, it was the thought of them navigating through my neck with a needle. Later while I was at physical therapy my physical therapist informed my mom that I should probably see a counselor and that the doctor who did my nerve block doesn’t think it CRPS. So can you help me understand why he would want to do another never block if it’s not CRPS and why awake. My PT says it’s rare to have it in the shoulder because it usually goes into the hands and feet. I’m very frustrated and tired of hurting.

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@penny2017

I was diagnosed with CRPS in my left shoulder. Has anyone ever had it in their shoulders. I had it in my ankle when I was 13 and it went into remission and now it’s back. I feel almost like I’m being bullied by my doctors. I had a nerve block in my neck to see if it would help and while I was waking up the doctor told me the next one he wants me to do while I’m awake with a local anesthetic. I thought he was crazy. I had a panic attack when they went for the IV. Now I’m not a baby when I come to needles, it was the thought of them navigating through my neck with a needle. Later while I was at physical therapy my physical therapist informed my mom that I should probably see a counselor and that the doctor who did my nerve block doesn’t think it CRPS. So can you help me understand why he would want to do another never block if it’s not CRPS and why awake. My PT says it’s rare to have it in the shoulder because it usually goes into the hands and feet. I’m very frustrated and tired of hurting.

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Hello @penny2017, welcome to Connect. You may notice I moved your discussion and combined it with an existing discussion on CRPS/RSD. I did this so you could could meet the existing members that are already discussing CRPS. If you are replying by email, I suggest clicking on VIEW & REPLY so you can see the whole discussion and jump in where you feel comfortable. @penny2017, if you are comfortable sharing, did you end up having the nerve block in your neck and did it help?

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@penny2017

I was diagnosed with CRPS in my left shoulder. Has anyone ever had it in their shoulders. I had it in my ankle when I was 13 and it went into remission and now it’s back. I feel almost like I’m being bullied by my doctors. I had a nerve block in my neck to see if it would help and while I was waking up the doctor told me the next one he wants me to do while I’m awake with a local anesthetic. I thought he was crazy. I had a panic attack when they went for the IV. Now I’m not a baby when I come to needles, it was the thought of them navigating through my neck with a needle. Later while I was at physical therapy my physical therapist informed my mom that I should probably see a counselor and that the doctor who did my nerve block doesn’t think it CRPS. So can you help me understand why he would want to do another never block if it’s not CRPS and why awake. My PT says it’s rare to have it in the shoulder because it usually goes into the hands and feet. I’m very frustrated and tired of hurting.

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The nerve block was in my neck, it lasted maybe 2 days.

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