Hi Becca The only way my RSD was diagnosed was through a Nerve Conduction test. Take care LISAR624

New Member--Concerned Girlfriend
 

Hi All. My boyfriend has CRPS and has had it for a few years. I've known this wonderful man for over 25 years and he is the love of my life. We've been in love with each other for that long and finally our lives have come together that we are able to be together. Its an amazing love story for sure :)

He has been totally upfront and honest with me about the CRPS and how he suffers every day and that there is never a moment that he doesnt have pain. He's taught me about this awful disease and I've done reseach on my own. He has a terrible time sleeping and struggles to get 3 hours a night. After about 3 months his body gives up and he sleeps for about 3-4 days straight only waking to eat and then falls right back to sleep.

I joined this forum because I wanted to continue learning about CRPS and what steps I can take to help and support him, especially during times when his pain is spiked.

GOD bless you! Make sure you get diagnosed early. That is definitely key! If you are not happy with the first doctor try and find one that will help! Take care & Good luck LISAR

New Member - Recently Diagnosed
 

On 7/16/14, my right foot hurt above the 2nd and 3rd metatarsal. It also hurt to roll off the ball of my foot. At first, the pain dissipated with rest, but eventually, it started hurting all the time. It was diagnosed as a strained tendon by a primary care doctor (an orthopedist stated it was actually a stress fracture) and I was told not to walk on it, but not given any device to do this (even though I specifically asked for one). On 7/28/14, I was walking my dog home from the dog park, when I landed weird with my right foot on uneven, bowed up sidewalk. My right foot twisted inward (toward my left foot) and down the bowed up bump. I felt a pop and was in horrible pain. It was diagnosed as a stress fracture of the 2nd metatarsal. I was put on crutches on 7/29, non weight bearing. On 7/30/14, I was put in a walking boot and allowed to walk with the walking boot and crutches. By 8/2/14, I was in so much pain, I was crying. The on-call orthopedist thought I might have dislocated the fracture and put me back on crutches not weight bearing. I have been in horrible pain ever since.

On 10/6/14, I was diagnosed with RSD in my right foot by my orthopedist and sent to a pain management doctor. On 10/8/14, I had a second opinion with an orthopedist who also diagnosed me with RSD (there was conflicting diagnoses of whether my stress fracture had healed). On 10/28/14, I saw the pain management doctor to receive a lumbar sympathetic block. The pain doctor stated I did not have RSD and refused to do the block. A few days later, I developed cold pain and a cold right foot. On 11/6/14, I saw a 3rd orthopedist who is an expert in RSD and was again diagnosed with RSD. He told me I was not a good candidate for a nerve block. My condition has continued to worsen.

7/17/14 - started ibuprofen
7/29/14 - started tramadol and instructed to continue ibuprofen. put on crutches, non weight bearing
7/30/14 - put in walking boot and allowed to walk with boot and crutches
7/31/14 - developed a rash and severe itching from tramadol. pulled off and told to continue ibuprofen
8/2/14 - put on cyclobenzaprine. put back on crutches, non weight bearing
8/3/14 - started norco and stopped ibuprofen
8/13/14 - started perocet and continued norco
10/3/14 - taken off norco and percocet (not weaned off) and put on mobic
10/7/14 - developed severe side effects to mobic and pulled off. told to start ibuprofen
10/24/14 - put on nortriptyline and told to continue ibuprofen
10/27/14 - put on calcitonin nasal spray and told to continue ibuprofen
10/28/14 - put on gabapentin and told to continue ibuprofen, calcitonin, and nortiptyline
10/31/14 - Started PT
11/6/14 - put on acetaminophen and told to continue ibuprofen, calcitonin, nortriptyline, and gapabentin
11/14/14 - started mirror therapy and instructed to start walking very short distances in boot with crutches
11/19/14 - cleared to put weight on my right foot. starting walking without boot and with crutches at home, but still use crutches non weight bearing when outside home
11/25/14 - started neuropathic pain cream and continued all other treatments

The burning pain is better managed now and the muscle contraction (disfigured toe) has mostly resolved. The other pains (stabbing, throbbing, pins and needles, dull, ache, etc.) are also better managed. I still have stiffness in my toe joints, though it's better. The stiffness is starting to spread to the ankle. I am still sensitive to touch, though less often. The sensitivity and pain is starting to spread to my right ankle and leg. I still have swelling, though it is less than before. The skin discoloration is still frequent. My toe nails are slow growing, turning white, and peeling apart and things (fuzz from socks) get stuck on them. The toe nails are very tender to the touch. My right foot used to be hot all the time, but now it is very cold all the time and it makes the rest of me cold. The cold is painful and very uncomfortable. I'm starting to have insomnia. I am agitated, irritable, anxious, stressed, and more recently, depressed. I haven't been able to work all week due to depression (from PT telling me that all the gains I have made are really low and we still can't start any strength training, so I won't be fully recovered (walking) for 5 months) and the cold foot. I have been teleworking this whole time - doctor's orders. I see a therapist (mental health professional connected to the rehabilitation hospital I do PT in) on Friday 12/5 and a pain management doctor (a new one connected to the rehabilitation hospital I do PT in and am staring therapy in) on Wednesday, 12/10/14. I am hoping for relief from depression and the cold foot as soon as possible. I don't see my orthopedist RSD specialist until 12/17/14.

Sorry this was so long. I needed to write out all the details once. And it will be helpful for my new doctors.

Hi there fellow CRPS Warriors!
 

My names is Sarah and I'm 37 yo and live in Boise, Idaho. I have been Dx'd with CRPS as of July 2014.

I've had numerous issues with my right shoulder (frozen shoulder, bursitis, labral partial tear, osteoarthritis, and tendinitis) and my right hip (bursitis and osteoarthritis) throughout my life.

It started with a right shoulder injury in August of 2013. The injury was my fault and happened at home. I tried to pick up an old school TV off the ground a few inches and I felt something tear, then was in extreme pain. Over the course of four months, I saw 4 orthopedic doc's, had 4 MRI's, 2 CT's, 1 arthroscopy, PT 3 days a week, 4 injections and a partridge in a pear tree. None of the docs I saw knew what they were dealing with, except for the fact that it was getting worse (spread to my neck, all of right arm, left upper arm, and upper right hip) and they couldn't stop it. I was referred to a PM doc in December 2013 and she did am EMG (showed normal) and put me on narcotic pain killers. I went another 6 months of just seeing her instead of any further orthos, and had trigger point injections and FDM treatment done. FDM=Fascial Distortion Model includes manipulating bones and joints using pressure and ultrasound guided injections. The most time I had any kind of relief was a month, and even then, it wasn't complete pain relief. In July of 2014, my doc suggested I see an ortho surgeon for exploratory surgery to find out what was going on. I found Dr. Waters' name online and saw him within a week. Within 5 minutes of talking with him over what had happened he said "I am 99% sure I know what you have. I believe you have RSD. We're going to get a bone scan to see how your density looks, but your symptoms are pretty clear that it's RSD." Once I got home, I researched RSD and got myself familiar on what to expect. My bone scan showed osteoarthritis in my right shoulder, right hip, ribs, sternum, and left and right fingers. Wow! I'm 37! I also finally had the diagnosis I was looking for over the past 11 months. Told my pain doc and she started me out on Gaba. To make a longer story short I've been on countless meds, am now in pool therapy, and am trying to find a new pain doc. I'm at the point that I realize I'll have to move to a better area to find one and I'm okay with that. I'm also on Medicaid, which doesn't help me, and I'm limited to doctors and treatments.

I've worked a lot of construction, customer service, medical admin, collections and now I chose to spend 20k to go to school for medical assisting.

I was in my last month of school (14 mo program) and about 2 weeks into my externship when all this came around. Due to my CRPS, I couldn't finish my extern and was immediately kicked out of school.

I can't work, let alone barely get out of bed. My mom had to move from 400 miles away to help take care of me and my ex-husband (he's actually my best friend) is helping me with our 12 year old son.

I've applied, myself, for SSI and was denied, then got a lawyer for the appeal. The appeal was denied, much to my lawyer's surprise, and now I'm waiting to schedule with a judge (which they told me was at least a year out).

My current list of meds include:

Lyrica 300mgs daily
Fentanyl 50mcgm patches every 3 days
OxyContin 15mgs 3-4 daily
Amitriptyline 10mgs 1-2 nightly
Effexor 150mgs every other day
Flexiril 10mgs 1-2 daily
Prilosec 40mgs daily

On top of my CRPS, I also have gastroparesis, esophageal motility disorder, and anxiety so 2 of my meds are for those issues.

I've been in the pool therapy for a week so it's too early to tell if it's working. And I'm in the market for a new pain doc, because mine is not helping me much anymore and we've had a falling out. My bf and I were considering a move to the Portland area in the summer but had opted not to when this had come up. Now I'm thinking it would be a better option because no one (except for that ortho surgeon) knows about CPRS around here or how to treat it.

I'm almost full body now, both arms-shoulder to fingertips, right leg-hip to toes, and left leg-knee to toes.

Sorry for the long post, but hoping to talk with others like me. **

my intro
 

Hi :)
I've been browsing this forum for a few weeks, and finally decided to post.

I was a runner (always have been an athlete--competitive swimming in high school, college, etc., but after having three kids, it's easier to find time to run) and injured my left hip. I tore my labrum (MRI three years ago) but the orthopedic encouraged me to try PT and resting it instead of surgery. Fast forward to this past summer, and the hip pain got bad enough to make me stop running and start riding my bike (indoor trainer) instead. I had another MRI and it showed a bigger tear in the labrum, tendonitis, and bursitis. The ortho said it was time to surgically repair everything. He's the only board certified arthroscopic hip surgeon for about a 200 mile area.

On november 13th (this year) I had hip surgery. The surgeon repaired the labrum, shaved a bunch of bone, and cut my hip flexor (iliopsoas). Everything went very well and I did everything I was told to do in the recovery. About 7 days after the hip surgery, I touched my left foot to the ground and was met with pins and needles sensation. The next day I called my doctor who said it was probably from the traction machine and he'd see me in two more days. Over those next two days, my foot started getting cold to the touch and it turned purple. When I saw the doctor, he immediately sent me to the ER for vascular studies to rule out blood clot (everything was normal). He then referred me to a neurosurgery group and I saw a pain management specialist five days later. The pain dr diagnosed me with CRPS right away. He said I met every single symptom. The pain was constant by this time and it felt like electrical shocks to my foot all the time. I can't tolerate pain medication, but was able to take valium to sleep for about 4 hours. It was awful!

Since I was (and am) still recovering from the hip surgery, crutches were the only way to get around.

The pain dr put me on a 7 day course of methylprednisolone, gabapentin, and told me to continue the naproxen (from hip surgery) and valium at bedtime. He tried two nerve blocks, but they didn't help. I'm still taking gabapentin and sometimes the naproxen. The gabapentin has helped calm down the electrical shock type of shooting pain.

I've been doing Physical Therapy for both the hip and the foot, but one random thing that has allowed me to put some pressure on my foot so I can get a break from the crutches, is taking a hot bath at night before I go to sleep. My foot feels okay in the bath, but when I get out, it starts swelling and doing the stabbing pains. When I wake up, I'm able to put enough pressure on it in order to hobble around without crutches. That's a huge relief! The crutches are driving me crazy. I have a walker and a roll about knee scooter thing, but both of those are really hard in my tiny house. At least I can maneuver more easily with crutches.

On top of all this, we have three very medically involved kids and a small farm. It's been incredibly hard adjusting to a sedentary day. I'm used to being up and moving, lifting heavy things, running every single day, lifting weights at the gym, homeschooling the kids, taking care of all the house stuff, etc. My kids are young, but they've been very helpful. :)

Looking forward to being part of this site :)
Mariah

Welcome Mlhps. :Wave-Hello:

Hello everyone. I was born with Ehlers Danlos Syndrome. On July 25, 2012 I dislocated my ankle walking down a flight stairs. I reset my ankle and continued to walk on it the rest of my day. The only thing I noticed was different, was that my toes went numb. That evening I went to the ER, and they me it wasn't broken or dislocated anymore, and to get an MRI asap. On August 1st I found out that I partially tore my Achilles Tendon. That led to me developing CRPS. It took almost 7 months before I was diagnosed. I'm just hoping to talk to and make friends with people who understand.

Hi from IL