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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Old 08-19-2013, 03:20 PM #1
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10 yr Member
vividDC vividDC is offline
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Join Date: Aug 2013
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10 yr Member
Arrow CRPS taking over my life

The original injury was a grade II sprain after an incident at work (grocery store) moving a very heavy pallet down the inclined loading dock (ankle turned over with 1000 pounds of weight against me, side of foot smashed into pavement and was clipped by the pallet as I dove out of the way). This happened in May of last year, and my Workers Comp case was opened and accepted. It was standard sprain from what I can tell, have had sprains before (never in this ankle, right ankle), no breaks of bones, no full tear of ligaments or tendons, there was plenty of swelling, couldn't bear weight for a few weeks (had to use crutches), was put in an air brace, and I was sent back to work after about 3 weeks under terms of light duty, taking naproxen, and wearing my air brace. In hindsight, the original injury could have been a lot worse if it wasn't for my quick reaction to get out of the way of the rolling pallet after turning my ankle. But unfortunately, the story doesn't end there...

I had a continuing problem of weakness in the ankle and it would roll over quite a bit, causing pain. Even walking around the house, it would suddenly turn over and I would feel pain and then numbness. I went to physical therapy for strengthening exercises, but it didn't help much. Then, the tingling and pins-needles feelings started coming on, randomly throughout the day. This was around 3-4 months after the original injury. I was concerned and started seeing an ortho doctor to address the ankle weakness and the tingling/pins/numb sensation. He tried MRI first (nothing except for joint inflammation), cortisone injection (no relief), and some anti-inflammatory drugs, but the swelling, weakness and discomfort persisted. They also gave me a compression type brace to wear around my foot to keep it from rolling over, which I still wear to this day. The discomfort of the pins and needles and numbness started turning into painful burning sensation that would get worse in the evenings, especially on work days and after lots of walking. I first heard "nerve damage" mentioned by my ortho specialist. He did one more set of x-rays (negative) and then referred me to an ortho surgeon.

The ortho surgeon first examined me, said it sounds like nerve damage, and started me on Gabapentin. I noticed negligible relief, and as they upped the dose the side-effects became intolerable (confusion, blurred vision). My job was a grocery store and I was still working, standing on the foot for 8 hours. The burning pain would become so intense sometimes that I had to go home early, or call out beforehand. I recall one time I had to run to chase my dogs before work, and I was keeled over in pain radiating up my lower leg, had to call out for a few days. I got put on Lyrica but couldn't tolerate it, blurred vision and confusion were too bad and didn't fade with time, so they told me to stop it, and put me on Elavil. I had been having trouble sleeping at night, especially after the work days, due to burning pain, so the drowsy effects of the Elavil were welcomed, and I took it for months mainly due to this reason, even though I didn't get any pain relief from it.

Then came a major turning point. I was being seem by my ortho surgeon, and after seeing that the meds weren't working, he suddenly came back with some needles and said we're going to try a nerve block injection, to diagnose, and also to provide pain relief. It was an unexpected surprise, but I was ready to try anything, so I gave him the OK. This was in mid-February 2013. He injected my foot/ankle a few times, getting the main nerves, and it stung, but I noticed the numbness almost instantly. Well, I had the best work week since my injury, was able to go 100%, had minimal burning pain, mostly numbness, which wasn't exactly comfortable but it was better then pain. Then it happened, about a week I was carrying a box, and I got this horrible shooting electric pain from my ankle up my leg and along the bottom of my foot. I shrieked and dropped the box, holding my leg. The pain didn't pass for 20 seconds. I had some shooting pains in the past like this, but this was a whole new level, unbearable pain, the kind that just steals all your attention. I really struggled with this and started to get very anxious as to when the next spike of pain would come. I couldn't work some days, had to go home early some days, it was embarrassing, I went from one of the hardest workers to incapable very quickly. After a night working in the cooler and having about a dozen spike pains, I had one that almost sent me to the ER. I went home and had my first week or so off-work since the initial injury. The numbness relief was subsiding and the burning pain was coming back in full force, and I was getting shooting/shock pains throughout the day, and they would wake me up in my sleep. It was torture.

I started keeping a journal documenting my pain level and events around the time of the nerve block, just in case I need it for reference.

On top of that, I started having marital problems, my wife and I separated in early March. I started seeing a psychiatrist, who put me on Cymbalta, which is supposed to help with depression and chronic pain. I have a hard time remembering the effects of this drug because there was so much external stress in my life in this month, just remember it numbed my feelings, but didn't help the pain noticeably, and then I couldn't refill it or try to go to higher doses because it was too expensive (no generic), and my Worker's Comp refused to cover my psychiatric care and meds.

I was getting desperate. I tried a 10mg oxycodone pill from a friend, and it was the most pain relief and energy I'd felt in a very long time, but then I got nauseous and threw up. My next appointment with my ortho surgeon, I told him about this drug, but he said it's too strong, and he put me on Norco 5/325, Diclofenac and Lidoderm patches, and upped my dose of Elavil to 25mg 3 times per day. He also ordered a Nerve Conduction Test and EMG, which came out negative. That was the worst news ever, I was getting tired of being in the dark as to what is causing this pain, and it caused me much anxiety and depression.

I got put on Remeron/Mirtazipine by my psychiatrist and tried it for almost two months. It really knocked me out and helped me sleep for the first week. I had to quit the Elavil because the two together made me a zombie all day. I never noticed any pain relief from Remeron, and it started to make me jittery, eat too much, and extra anxious, so I stopped it. I did get some relief from Lidoderm patches and Norco, and so I could work, but I got into a vicious cycle. I would have to take more and more Norco just to be able to stand the whole shift, but the pain would override, and I would get too incapacitated and spaced out from the pain and meds to be able to work. I would push to the limit, and then one day it would go over, and I had to stop, get a doctors note, take some time off, and quit taking opiates. First it was 4 eight hour shifts, then 3 eight hour shifts, then 4 four hour shifts. I took about a month leave after not being able to do the four 4 hour shifts, then went back and tried 3 four hour shifts per week, absolute minimum. I couldn't even do this, the pain was just getting worse and worse. I got sent home by my boss (this was in early June) and haven't been back since.

A nurse case manager was put on my Workers comp claim around this time, which added to my anxiety, because I read horror stories about how they try to push you too hard and how they mostly work for the insurance company. She was okay for a while until recently (I'll explain later). My last appointment with my ortho surgeon, I mentioned how my sock and bedsheets are starting to cause immense pressure/grinding sensations on my foot, and he said he thinks I have CRPS. I went to Pain Clinic (took forever to get in), and after examining, he diagnosed me with CRPS. He put prescribed a Ketamine-based compound prescription cream. When my NCM was talking to him, she asked "how long?" and he said a year minimum, if everything works. I burst into tears. How can I handle another year of this, especially if it gets worse? It was and still is a hard reality to face. He also discussed more scary treatments like lumbar injections and spinal cord stimulator if the cream doesn't work.

Well, I've been using the cream to the max, 4 times a day usually. It knocks out about 30% of the burning pain, but it hurts even worse when it wears off. I'm worried I'm getting dependent on it, that it's just masking the pain while it gets even worse. However, I wouldn't even be able to tolerate the physical therapy I'm doing if it wasn't for the cream knocking out that area a bit. I'm doing PT 3 times a week now. My last doc appointment was very stressful. At first, it was a relief. They examined again and said it's looking slightly worse, and noted a purple line that looks like a vein going up the front of my leg toward the knee, which my PT also noticed and is worried about. The hair has stopped growing on and around it. It doesn't hurt yet, but is this a sign of spreading, or is it just a vein? Anyway, they wrote me out for 2 months out of work and told me to focus on exercise and PT, but my NCM flipped and fangled another note of "light, sitting only duty" to make herself look good. I felt helpless to the bureaucratic BS, but it seems to have worked out now, just added extra stress, more running around to get my work note in so I can get my check (I'm living on workers comp benefits right now).

I have all the hair around my upper ankle, and there is a area from the upper ankle to the top of my foot that is red-purple colored, and extremely sensitive, in some spots more than others. It feels like I'm standing next to a fire. It's getting harder to wear socks and shoes for a long period of time. I just bought softer sheets, 400 thread, so I hope that helps.

I have had immense depression from the pain and not being able to work, it has thrown me way out of balance, as I have had a job since age 13. I graduated from college, and had plans to make a good career out of where I am working. I hate being a drag on the system and I want to work so badly, but don't even think I could do a sit down job. I have had dreams about doing physical labor. I have had to give up most of my hobbies, including hiking, mountain biking, golf and other sports, which has been devastating. It's even hard to do yoga, or even sit at my desk, and I can only walk short distances without a cane. My bedsheets feel like grinding needles on my ankle, I have to put on ketamine cream before bed, wear a sock and leave my foot outside my covers. Even the breeze through the windows feels like hot needles. I'm losing muscle mass (especially at the site of the injury). I have had immense anxiety too, about my future, about this injury getting worse, and about recent events with my Workers Comp case. I'm currently on Effexor and Klonopin from my psychiatrist, and have been seeing a psychologist (therapist) once per week, which has been helping. I'm also going to physical therapy 3 times per week, which has been difficult but I haven't missed an appointment yet. They are mainly working on desensitization and light strength at this point.

Well, I think that's enough for now, put down as much overview I could without getting into too much detail.

I need as much help and advice as I can get. Is this going to get worse or spread? What can I do to reverse this injury or get some more pain relief without taking more opiates? Any advice about what to look out for with Workers Comp and my nurse case manager would be appreciated too, what should I expect? Researching about CRPS is very stressful so I hope I can get some good support and advice from other's experienced with it.
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