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oldnana
@oldnana

Posts: 7
Joined: Mar 22, 2016

I developed CRPS (or RSD)

Posted by @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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I’ve had bilateral upper extremity RSD since 1998. I started a long treatment of Gabapentin, followed by a huge dose of Oxycontin for 2 years, then onto Lyrica. I currently take the max dose of Lyrica (200mg 3xday) with no opioids, and that has made a world of difference. But the most important treatment for me has been my Medtronic Spinal Cord Stimulator- implanted in 2002. It has been fabulously successful and I credit my friend, who warned me I would hate it for the first 2 weeks (getting used to the sensation and finding the best frequency, etc.), but to do EXACTLY what the Dr. said (for me- don’t raise arms, wear neck collar, don’t lift anything heavier than a 5 pound bag of sugar, etc.) and it would be successful. It has been. I’m not pain free, but it is manageable.

I take Lyrica as well, but at a much higher dose…..300mg 4xday for Idiopathic Peripheral Neuropathy. I developed neuropathy following a spine injury in 2003. I had two spinal stimulators placed in 2008, but they were only affective for 5 years. I was on opiods for 8 years as well. Last spring I went through Mayo’s Pain Management Center which got me off the opiods and taught me how to manage the pain with only OTC meds and Lyrica. I am currently managing things pretty well with infrequent “bad ” days.

@medic7054

I take Lyrica as well, but at a much higher dose…..300mg 4xday for Idiopathic Peripheral Neuropathy. I developed neuropathy following a spine injury in 2003. I had two spinal stimulators placed in 2008, but they were only affective for 5 years. I was on opiods for 8 years as well. Last spring I went through Mayo’s Pain Management Center which got me off the opiods and taught me how to manage the pain with only OTC meds and Lyrica. I am currently managing things pretty well with infrequent “bad ” days.

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Wow! That’s great!! I don’t know of anything better than Lyrica right now. My implant is 14 years old and still ticking along. That combo gets me through. I wish your implant could go on…..

I have tried Lyrica several times but it does nothing for me.

@lolomarie

I have tried Lyrica several times but it does nothing for me.

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That’s too bad. It’s been a lifesaver for me, although I have
had to fight with the Medicare to pay for the dose I require.

@lolomarie

I have tried Lyrica several times but it does nothing for me.

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What about the new one– Cymbalta??

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.

Liked by oldnana

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!

@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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What type of therapy did you have?

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.

Liked by salena54

@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.

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I watched the lecture and thought it was fabulous!!! So much information– I’ll need to watch it again.

Thanks,

Mariah

@lolomarie

I have tried Lyrica several times but it does nothing for me.

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That’s why they have so many similar drugs.

@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.

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Thanks very much for including the proper URL that I referred to in my post Colleen. Thanks for your confirmation of this lecture to you as well Rowan. It truly is one of the most comprehensive packages that I have seen in respect to CRPS. I wish ALL doctors had to sit through that presentation (especially the ones that don’t believe that there is anything wrong with you!!!!

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone…..all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments….& now he is going to die in a matter of weeks!!! I just want to go with him…It should have been me…I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

@overwhelmed

Just a follow-up to my reference of the cancer diagnosis that my husband had just received not long before my last post. Unfortunately, after becoming sick about three weeks ago, we found out that he only has weeks to live. His cancer started in his colon, went to the liver, lungs and bone…..all without any symptoms until 3 weeks ago. Now he is in liver failure. He has been my support for the past 8 years in dealing with CRPS until we had exhausted all treatments….& now he is going to die in a matter of weeks!!! I just want to go with him…It should have been me…I have been hoping to die as a means to escape this terrible pain. I do not have a life, it is merely an existence!!!! I will be left alone with no family and only one friend that has continued to be my friend through CRPS.

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I am so sorry for both you and your husband. I cannot imagine
what you are going through. Well, actually I can somewhat as
my wife has Amyloidosis. This is a rare disease that has
attacked both her heart and her kidneys, She is currently on
the waiting list for a new kidney. Unlike your husband, she is
currently stable. I also cannot imagine dealing with my pain
without her loving support. It is frightening.

My prayers are with the two of you. Keep your faith.

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