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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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Unread 11-18-2012, 11:08 AM   #471
reluctant@thetable
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Hi Jenny. I think you will find what you are looking for here. I haven't noticed any administrative issues on this site.

I too am at my one yr. anniversary of crps and I'm also having the spreads you describe. Some days I just want to crawl in bed, pull the comforter up over my head and stay there for days. But I know I can't do this.

Well, anyway, welcome to the group and enjoy searching through the site. I think you'll find quite a bit of good info if you search the past postings. Cathy
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Originally Posted by jpcrps View Post
Sorry, I posted an intro message about myself but not sure if it went to general new members or to rsd group.

I am Jenny - aka jpcrps - am just at the one year anniversary of the foot surgery which caused dx of crps. Prior to that about 2 years dealing with grinding pain in 2nd MTP of 2nd left toe, mostly due to playing tennis.

I seem to be having spreads which began with prickly burning but have recently turned into full on burning pain in arms, hands, both feet (as opposed to just the left foot) and thighs.

I have participated in another online group and am looking for a supportive community without draconian admin personality issues. I also host a micro support group online, which was set up by my husband to support my need to connect with others who have this condition.

Looking for friendship, mutual support, kindness and understanding.

Mahalo,
Jenny
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Unread 11-18-2012, 07:10 PM   #472
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Thank you for the welcomes. I have tried many options and am hoping to be able to arrange ketamine infusions as "it" seems to be advancing and interfering with my ability to work.

Am going to surf into the forum a bit more and glad to have found you.

Love,
Jenny
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Unread 11-20-2012, 07:31 AM   #473
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I have CRPS from TOS, basically. Thin female with 8 yr history of computer workstation use at a fast paced job. Non-ergonomic workstation. Pain began with severe onset of pain in trapezius mm, levator scapulae mm area, Right side, then left side. Pain then "spread" to bilateral forearms with severe muscle/tendonitis, radial tunnel. Suffered and continued to work full time for 6 months because I did not have sick time off/employee benefits...until I became disabled. Had physical therapy with 4 different p.t.'s, had diagnostic exams which were all confirmatory for TOS (with vascular component). Finally saved up enough to have the surgery for TOS on one side. Am still disabled by pain and symptoms today, am now fighting with WC (which was obtained after a trial determined I was an employee) to obtain SCS for pain management.

Am really frustrated with battling WC for medical care and benefits! Worker's Comp is evil and responsible for prolonging my suffering and causing more injury to me.

If CRPS was treated earlier with Physical Therapy it would not have gotten so refractory. I knew something was wrong when my golf-ball sized knot above my scapula was "sweating" during sleep. I would wake up with 10/10 pain.

Now that I have had the rib removed, the hatchet knife is out of my trapezius, but I have burning, needles and boring, burning pain in my fingers, hands, arms, upper chest, upper arm, shoulder, below scapula, neck, up to ear. And flareups will knock me down with left sided pain. When the pain has been dialed down the best it can get to is a 4. And then even taking a short walk or drive will aggravate the pain!! My brachial plexus has a migraine! It is not living this life of pain.
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Unread 11-21-2012, 01:22 AM   #474
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Wow, sounds like a long haul of really bad pain. When were you diagnosed with crps? Have you joined the RSD forum? What kind of treatment do you have now? Sounds as though you are not able to work at this point with this kind of flare ups.

Really feel for you. I am only a year into diagnosis, but it is definitely life changing. Hope for the best for you. There are new treatment showing up these days between the ketamine and HBOT. Living in pain is NO GOOD!

Love,
Jenny
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Unread 11-23-2012, 12:40 AM   #475
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Heart Hi Jenny, Cathy, and NER

Oh that road of Worker's Compensation can be so very long and ridden with many a hole, twist, and obstacle as all are thown up by a system which does not want to pay without making absolutely SURE of the necessity to care for an injured worker. I am one. It took 34 surgeries basically to reassemble the Humpty Dumpty I had been prior to the car wreck on I-70 which ruined my career by the way, changed life radically, and made me for many long years wonder whether active life was just OVER.

I had to have the assistance of an excellent Worker's Comp lawyer to pursue the claim. Nobody wants to pay, whether for surgery, aftercare, or the injury itself and the earning impact on the injured worker. My wife and I felt many times the system was evil, the companies were evil, the executives were evil, and we so wanted to be able to strike out. Staying the course was our chosed way of striking out at the insurance company. Ding Dang them all. We finally reached a place of success and there is now some provision for future care which may relate to my bodily needs. I just SO HOPE I will not need more surgery.

This care giving place is chock full of so many wonderful people who come up alongside and share experience, knowledge, hope for a brighter tomorrow, and even rants and tears with you as the path to pain management winds its long course down that road I mentioned.

I have found so much help and comfort here, I hope you will also find this to be a place of JOY for you just as I have by participating among all of us who need.
Prayers offered liberally,
Mark56
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Unread 11-23-2012, 01:16 AM   #476
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The systems in place for our health are evil. I know a gal in DE in a wheelchair. Her health which was not addressed due to poverty led to a stroke. She is only 40 years old. She had tried to get dissability for 4 years.
This earth, is not run by God, it is the devils domain. People in positions of power abuse. Jesus will come again and set things right. I have no doubt about that. Then this earth can be run the right way, with us living as brothers and sisters, and taking care of each other.
I pray for his coming daily, as our world needs some help....hope your thanksgiving day was good. I said grace before a group who do not believe, or if they do, it is never discussed. After saying my thankyou for the food and company, I reminded that our first president concecrated our country to God, and that we should keep God first in our lives. I still don't know why prayer was taken out of our schools, and now off some of our coins. What is going on? I guess I just get frustrated.
I hope you had a good day today, and that all our friends on NT, had good food, and people to share this day with. I also pray your pain is lower today. Take care Mark, ginnie

Last edited by ginnie; 11-23-2012 at 01:17 AM. Reason: spelling is not my good point!
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Unread 11-26-2012, 10:03 PM   #477
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Thanks Jenny, Mark and Ginny!

When I look over my medical records, the doctors were mentioning it in 2009. However, I had TOS surgery and then recovered from that, and then realized some of the pain in the forearm/arm/hand did not fully go away with the surgery. And honestly, after surgery, I have pain in areas that I did not have it in before, like my chest, neck and up to ear. The pain on the Left Side comes with activity, whereas the pain on the Right is there 24/7, but gets worse with activity too! And now I am having pain in my R thigh.

The surgery helped the most with the most severe pain in my trapezius, which felt like a hatchet knife. The hatchet knife really made me want to die! It is pain that you really can't live with for very long. I can't even bear to recall how bad the pain was, now. The surgery helped relieve the vascular issues, now I have a pulse in my right arm.

I think CRPS was confirmed after I had my 6th Stellate Ganglion Block. All of the SGBs that were in the right place were "confirmatory" for CRPS pain.

I am really hoping to get a SCS. I have never heard of a Ketamine infusion, but I use a compounded Ketamine/Lidocaine/Ketoprofen pain cream which really helps ALOT so I am going to research this!

Thank you all for sharing here what works for you~ It is so important to keep one's spirits up and to keep on trying to live a better life with less pain.
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Unread 11-27-2012, 11:24 PM   #478
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Heart Prayin your Spirits Fly!

I even use some cream to topically address licalized pain when it manifests after a wild spree of overdoing [did I write that?]. My family will not allow me to overdo..... so I have to sneak it in. If SCS can be good for you NER, the trial is the means to learn. Prayin you will be well.
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Unread 12-02-2012, 08:33 PM   #479
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Hello All,

I'm Redraidermom! I am from Texas and am a newly divorced single mother of three amazing daughters. I was diagnosed with CRPS in May 2010 by a pain management doctor. I currently see my PM doctor and a psychiatrist for anxiety/sleep meds.

In 2000 I was in a car accident and injured my back. Then in 2009 I was in a car accident where C3-4-5 were herniated, thorasic 6-7 herniated, and some bulging discs in my lumbar. 3 months later, in December (right after Christmas), I had an accident in the kitchen. I got up at 3am to get some water, and slipped in a watrer puddle on the tile flooring, and slid through the kitchen, and used my right arm/hand to brace my fall on a door way. I snapped back, hurt some cracking noises, and fell on my back with my arm outstretched. I broke my right hand (which my PM dr believes is the primary cause of my CRPS), and tore the posterior labral cuff in my shoulder. The cuff tear has resulted in 3 cysts sitting on the suprascapular nerve (I think it's the nerve that runs through the collar bone). My Ortho Dr won't repair my shoulder right now bc the tear "frayed" due to physical abuse from my ex husband (he used to pull my arm behind my back), so I have limited range of motion in my right shoulder/arm. The tingling started in my neck initially, and then worked its way down to my collar bone, shoulder, elbow, and hand. Now, the tingling is in my face, jaw, and head, and sometimes my scalp feels like it's crawling!

My teeth became hypersensitive shortly after, and it often feels like an ice pick is picking away at my teeth. Due to this sensitivity, I lose 80 lbs in one year, and this is what led up to my diagnosis...The temp outside always affects my limbs, teeth, and everything else! I sweat a lot and get really cold, my hand has a minor atrophy, and my joints ache. I suffer from debilitating migraines...they are nearly constant and I get no relief. I used to take Elavil for them, however, due to weight gain, I tapered off that drug and the migraines have returned with a vengance!

I am in constant pain! My whole face, jaw, neck, and head tingle, zap, and shoot! The tension in my neck/muscles in that area cause major spasms! It is pretty nerve wracking! My medicine regimen includes:

Gabapentin 800 x4 daily
Tramadol 50mg x 4 daily
Advil 200mg x4 daily with tramadol
Tylenol Arthritis 650 mg x4 daily with tramadol
Zanaflex 4mg x 3 daily for spasms

In addition, because I suffer from panic attacks and anxiety, I take:
Xanax XR 2mg (24 hour release xanax)
Trazadone 75 mg at night for sleep

The gabapentin side effects are terrible. I am so forgetful! I have memory loss, confusion, i'm kinda clumsy now, and my thought process is much slower now. Most of the other side effects are no longer existant, but the memory thing has stayed for the long haul. I have taken Lyrica before, and It worked SO well, but bc It was so expensive on my previous insurance, I quit taking it. I have new health insurance now, so I think I might ask my dr to dc the gabapentin and start the lyrica in its place.

The migraines are hell. I am looking into topamax, and I see my pain dr soon, so I will talk with him about it. I HAVE to find something to help my migraines before I LOSE my mind.

So, that's me ina nutshell! My body feels totally WACK and I hate it! I wish the pain would go away! I am looking at getting back into PT for my neck and hand because it did work! I got divorced earlier this year and went through a huge financial and job transition, so I am still getting back up on my feet.
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Unread 12-03-2012, 12:53 AM   #480
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Default Hi Redraidermom!!!

A hearty welcome to you for braving the internet to come share among us. We all present a host of issues and LOTS and LOTS of pain to go around. Being a car wreck victim myself I feel tremendous empathy for you as the host of injuries you have suffered resulted in the pains impacting your body on top of the emotional and physical abuse suffered at the hand of your former spouse. Being Dad to a young daughter, I pray and I pray she will never know the trauma you experienced at the hand of your former spouse, for in my practice I have seen and spoken with enough in your shoes to know too many are out there who fail to engage brain before taking life out on their "beloved."

Definitely, among the part I can bring to the fore is willingness to pray all will be well. Pain management is a toll on the body in addition to the pain itself. Physical Therapy, especially if access to a warm therapy pool is part of the availability may bring help to you which is immeasurable as a means to gain on the pain monster while holding surgery at bay.

Prayin all will be well,
Mark56
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