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01-25-2015, 10:45 PM | #1 | ||
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Junior Member
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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.
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01-29-2015, 06:40 PM | #2 | ||
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My name is Paige and I'm in IL presently. I recently moved from TN.
My story goes like this: Sept. 8,2013 I fell at a store. Landed on my knee and promptly went to the ER. They did an X-Ray ("nothing broken") and a referral to an ortho. I saw the ortho 2 days later who recommended an MRI. Well, my insurance was apparently sleeping at the time, so I was unable to get the MRI until Oct.,13,2013. In the meantime, I worked 250+ hours as a nurse in an assisted living facility...in hella pain mind you. Oct. 14, 2013 I get a call from the ortho..."Go home and get off your leg. You have a fractured patella. We need to see you in the office tomorrow." Uhhh...okay. Oct. 15,2013 I am put in a brace from hip to ankle & told no weight bearing. I asked if I would be allowed to hop to the bathroom instead of using the brace. Doc agreed but I was to keep my leg straight in the brace other than for showers (& I still needed to keep my leg straight, just without the brace) A few days later, I called the doc because I was in more pain wearing the brace than before! So they had me come in for an adjustment. Seemed to help at first but didn't last. So I called again. They said the only thing they could do was put me in a different brace. So I stayed in bed with my leg straight. Period. (I did hop to the bathroom) Come late Nov/early Dec I tell my doc I have this tingling whenever I put my right foot over my left (the fractured knee side). He blows it off. Dec. 2013, he tells me I can bear weight & I start PT. Jan. 2014, he puts a bend to the brace & I have a 2nd MRI. That MRI revealed a meniscus tear as well as a host of other things. Doc says "I can do an injection" HA! I was born in the dark but it wasn't last night fella. Off to a second opinion I go. March 2014 (yup, that's how long it took to get my records & find another doc) This doc says "I think you definitely need a partial meniscectomy but I need to know more about this tingling. Let's do an EMG/NCS. I had those tests the next day (INTENSE pain, let me tell you!) EMG/NCS positive for peroneal nerve damage. Doc says it's on the border of whether or not he thinks neurosurg can do anything. So let's fix the tear and see how you do. Apr. 2014 Partial meniscectomy done and PT started the next day. They like to kill me. Anyway, pain is not stopping, my left foot feels (and had for some time) cold to me. I'm thinking it's in my head, so I start wearing a fuzzy sock on that foot. May 2014 Doc starts me on gabapentin and meloxicam June 2014 I go on a cruise with my new HS graduate daughter & my youngest son. Flew 2 hours to port. 2 days into the trip, my left foot is swelling. The next day, it's so swollen I can barely walk. I was remanded to the cabin with my leg elevated on life jackets. We rented a scooter the next day. Once we returned, I saw my doc. Told him I was having trouble with the meloxicam and we both didn't feel the gabapentin was doing much. He starts me on lidoderm patches & sets up appointments for euflexxa injections to start the following week. (1st injection went okay) Second injection - OMG! Screaming, crying in pain! The office staff got a wheelchair for me to be able to leave because I could not put weight on that leg. Cut the already long story short: I haven't seen a doc since Aug. 2014 because of relocating & insurance issues. But the pain I have been experiencing & the nerve injury point to CRPS II. So I came here for advice on finding treatment and support through all of this. (My sincerest apologies for such a long post) |
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01-30-2015, 09:43 AM | #3 | |||
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Senior Member
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So sorry you had to find your way here, but there is great support and understanding. You are not alone. No apology is needed. Everyone is here because of some complicated mishap. I would encourage you not to give up on a fixable cause. Many cases of CRPS are caused by nerve entrapment that can be ameliorated. I know they say no surgery but that depends who you ask. If your problem is identified injury at the peroneal, find a peripheral nerve specialist to make the call if anything is be done. Ortho told me I had no options, they don't always know nerves so well. There is an interesting article by Susan Mackinnon MD et. al "Nerve re-section, crush and relocation relieve CRPS Type II: a case report" that says there are options in some cases. In another stage of my journey I had my posterior tibial scarred down from a "minor" ortho procedure that also partially transected my calcaneal branch leaving me with a painful neuroma. Whoops. Ortho insisted my procedure had been successful LOL. In desperation I saw two plastic surgeons who did a peripheral nerve fellowhip at Washington University - one practicing in Dallas, one in Houston - both said the same thing. I had identifiable entrapment and they could do something about it. One did a "scratch-collapse"test to find the lesion exactly. 3.5 hours of microsurgery later the shooting pains and agonizing hypedermics jabbing me were gone and still are. Is it like it used to be? No, but I can sleep at night and don't whimper on the couch like a wounded animal all the time. I later developed more CRPS-y symptoms following a separate procedure to take an aggressive fibroma out of my sole where there are loads of sympathetic fibers. Still recovering from that one. I say hang in there, don't take no for an answer till you've satisfied yourself and keep up the fight! Sending Healing Love Littlepaw |
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"Thanks for this!" says: | Always_Believe (01-30-2015) |
01-30-2015, 08:30 PM | #4 | ||
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Thank you for such a sweet welcome! |
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"Thanks for this!" says: | Rain shower (10-06-2015) |
01-30-2015, 09:21 PM | #5 | |||
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Senior Member
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Never stop trying to advance. There will be good days and bad days. It will take longer than you want it to and demand patience and grit. You have these things. Sometimes our strengths are hard to find when we are panicked and in pain but they are still in there. Don't let yourself get buried in sadness and despair. Everyone visits a dark place sometimes, what counts is making sure it is only a visit. You are not a burden. This is a proverbial bump in the road and you do not yet know what you will become. It is very hard in the beginning but you will find a way. Use your training to find the people who can help you. As you know different specialists will have something different to say. Stanton-Hicks says 80% of people have improvement. I like those odds.... I am sending more healing love, Littlepaw |
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"Thanks for this!" says: | Always_Believe (01-30-2015) |
01-30-2015, 09:38 PM | #6 | ||
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03-09-2015, 05:10 PM | #7 | ||
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Junior Member
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Hello friends. Please guide me...I am the Mom of a 16 year old girl just diagnosed with RSD, 3 weeks ago. I am beyond frustrated and so scared! I live in the Midwest, and so far I have mixed messages and nobody seems to know for sure what I should be doing. I have read many things (conflicting) I have called the research center in Florida, I am talking to a Neurologist that diagnosed her, but admits she knows little about the disease. My daughter injured her right hand 2 years ago playing softball, we went to 9 doctors over a 2 year period before getting to where we are now. The pain has moved from her right hand, to her elbow, to her shoulder, and now she complains of headaches, and eye pain only in her right eye, with some blurring. Her hand turns a bluish color occasionally and swells some. I just got off the phone with the Neurologists PA, the Dr. tells me that the eye pain and pain in her head are not associated with the RSD. How can this be?? It's only on the right side of her head..as all other pain is on the right side. I have read that early diagnosis and treatment is beneficial..what treatment? What should I be doing?? Please help me.. I feel so alone and scared. I want to help my child, but I don't know what to do, or who to turn to. She is currently only using a pain medication rub that seems to help the pain some. We are talking about putting her on an antidepressant for the nerve pain. What can I do to slow progression?
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03-11-2015, 08:12 AM | #8 | |||
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I'm guessing the antidepressant the doctor is talking about is Cymbalta. I'm not sure if it is recommended for someone her age. I do take it and have for years. It does help with the burning nerve pain for me. There are no RSD specific drugs. But many different drug combinations that people use. It is a trial and error finding what works for each person.
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Zookeeper ~Shelly~ |
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03-09-2015, 11:31 PM | #9 | ||
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Junior Member
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Hi all, new to the group. A little background severely broken right fibula and ankle back in 2000 have had 2 surgeries to repair the damage, ended up with a screw inside my right ankle to hold it in place and a plate and screws down the fibula to re-aline it. Due to a 6 month span between surgeries (stupid idiot doctor) i suffered quite a bit of nerve, tendon,and muscle damage to the outer portion of my lower right leg. Now 15 yrs later I am suffering with tremendous amounts of pain on a daily basis. After months (since November ) of going from doctor to doctor trying to get answers I'm finally told I most likely have CRPS. Yea I did the double take and the you've got to be kidding me, this is just some made up crap right?............. well needless to say I went home and did my research and whoa! Now I'm scared. So everything fits the swelling and tenderness and redish purple spots. So while on my journey to this diagnosis I also discover through a bone scan that i have a fracture in the heel of my left foot. Yes I'm devistated, I have a 19 month old lil girl that I stay home with and here I am can barely walk. I already suffer from major depression and anxiety and this really doesn't help, added to that everyone thinks I'm making all this up. All I can do is say really? Do you see my leg, ankle, and foot? Do you see how swollen they are? Do you see the red and purple patches? Do you see the tears running down my face as I try to walk? But still no one helps, they still remind me how much I need to be outside running around with my daughter, or taking her to the park. Ugh I just break down at that point. I start going to the pain clinic next week but it's my understanding that once the skin has tightened there isn't much chance of going back. Plus the doctors around here treat me like the plague due to me being obese (on a bariatric surgery waiting list) and on state assistance. Yep I've had 2 count em 2 orthopedic doctors send me walking out of their offices refusing to treat the fractured foot. Sorry if I'm sounding really sarcastic or just rude, I'm honestly not trying to be either. I can only take my meds at night so when you combine pain meds with anxiety, depression, anti-inflammatory, and migraine meds I get numb. Minus the pain that is still there. So anyone here living with CRPS and young kids. How do you cope?
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03-12-2015, 03:19 PM | #10 | ||
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New Member
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Hello, My name is Kimberly, I'm soon to be 55 and I've been living with RSD/CRPS for just over two years now. I had been dealing with a Morton's neuroma for several years and tried a variety of treatments before I ran out of options. I was unable to wear "real" shoes, and spent my life in flip flops (even in the winter). For 18 months I was in and out of a boot for a broken toe and hairline fracture. My podiatrist recommended surgery to remove the neuroma. Sign me up! Anything to be rid of this pain and wear shoes again. I had the surgery in February 2013. My surgery went ok for the first couple weeks. My first two/three post operative appointments were unremarkable. However, by my fourth visit, the doctor realized I was experiencing a degree of pain, discoloration and swelling above and beyond what was typical for my surgery. He diagnosed me with RSD and sent me for a second opinion with an anesthesiologist who had a great deal of experience with RSD. I have been very fortunate to have been diagnosed and treated early. I've had several rounds of sympathetic nerve blocks, physical therapy with a therapist who was also experienced in treating patients with RSD, and pain medication. I'm down from 1800 mg to 600 mg of gabapentin a day and continue to experience a good quality of life. I've had no major flair ups lately and only experience a modicum of pain when its cold outside or I bump my foot on something. I know I've been blessed to be in the right place at the right time. I belong to a local RSD support group which has been a godsend.
I've been diagnosed with a rotator cuff injury that responded well to PT and cortisone injections, until now. I'm having an MRI next week to determine the extent of the injury and whether or not surgery is required. Knowing what I know about RSD/CRPS, I'm afraid surgery may cause it to spread to my left shoulder. My orthopedic doctor indicated we can mitigate the chances with a nerve block in advance of the surgery (if I have to have it) and I will, of course, confer with my anesthesiologist. But I'm wondering what experiences any of you have had with surgery AFTER your diagnosis. Hugs to all! |
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