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 09-09-2013, 01:29 PM #21
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Hi Vivid

Great news about your work, it must feel lovely to be wanted back, even if things have changed so much for you. At least you have the choice now.

Crocs are great aren't they? I wear mine in the house to keep my feet warmer now this cooler weather is here. Once my feet get cold they always fire up in the early evening and give me hell for a few hours!

I'm glad you have PT still - are you going to be seeing the same guy? I know you got on well with him before the last traumatic appointment, but if you are seeing him still, make sure you keep vigilant about what treatments and exercises he tries, and if something doesn't feel right say so immediately so that he doesn't aggravate things. If necessary you can ask for a different therapist, but hopefully it won't come to that.

I'm the same re opiates. I have made the decision to take the pain over the side-effects and the effects they have on my mind and personality. For now. I hope I never have to go down that route, but some days I do get tempted to do anything to rein in the pain Good idea on the compound cream - I have it on my list to ask my pain doc about next month!

Good luck with workers comp - I only know about what I've read on this site, but I know things will be tough in that process, so stay strong and keep notes of any conversations or appointments you have. I use a recording app on my phone when I go to appointments - it's amazing how much detail you can forget from a conversation, and I find it so useful to be able to go back and listen to what the doc/therapist/whoever really said, rather than what I think they said.

Take care of yourself and good luck with everything. It'll get easier.

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 09-11-2013, 03:23 AM #22
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I am SO in touch with the title of this thread! I am hurting so bad in so many places it’s insane, or going to make me insane. Every step or movement is so difficult and such a struggle right now. I feel like EVERY SINGLE ASPECT of my life is suffering. More and more things just slipping through my fingers, sometimes literally. And somehow I am suppose to get comfortable with that notion. Zen Vrae... Zen... Wide Open Spaces.... yeah that's it... right?

I am going to turn 45 y/o in just a couple of weeks and I feel like I should have 80+ candles, or perhaps it’s dog years lol. I have reached out to my best friend and informed my husband that feel like it or not, we’re going out and I am dressing up, makeup, hair and all and we’re going to dinner and to hear some live blues. I told my friend that enough drugs and drinks and I should be good to go for a few hours.. lol. Really I want to push myself to do it because I fear how much longer I will actually be able to walk without all sorts of assistive devices. I want to try and enjoy myself and the company of those I love, as long as they’re down for the music. Good music sets my soul free and helps me forget the pain. Honestly I’m not a big drinker, but I feel at least a glass of wine or two will be in order!

OH! and fun fact: Crocs originated in Denver, selling in small kiosk's in the mall, then the blew up across the nation and sounds like internationally as well. There is just no better shoe for me. My shoe of choice! Not the most stylish things, but I'm WAY beyond that.
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Old 09-11-2013, 03:40 AM #23
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Crocs rule! I couldn't be without mine lol - althought am distressed today because I managed to step in some muck yesterday and they are waiting outside for a good scrubbing!

I'm going for cat years (only 3 per human year lol). Still puts me at 126

Vivid, i hope you are having a decent day, and Vrae, keep smiling girl...



Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 09-11-2013, 09:14 AM #24
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Crocs rule! I couldn't be without mine lol - althought am distressed today because I managed to step in some muck yesterday and they are waiting outside for a good scrubbing!

I'm going for cat years (only 3 per human year lol). Still puts me at 126

Vivid, i hope you are having a decent day, and Vrae, keep smiling girl...



Bram.
I have a pair of big black ones that are fur lined (it gets cold here) and the other day I was in my nightgown cooking in the kitchen with, you guessed it, my crocs on. My husband walked in and I said, try and control yourself honey, I know how sexy this looks
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Old 09-11-2013, 11:47 AM #25
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I have a pair of big black ones that are fur lined (it gets cold here) and the other day I was in my nightgown cooking in the kitchen with, you guessed it, my crocs on. My husband walked in and I said, try and control yourself honey, I know how sexy this looks
O....M....G....THEY DO FUR-LINED CROCS?!?!?!?!

I am sooooooooooooo getting a pair of those

Tank-oo (lol)

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 09-11-2013, 01:44 PM #26
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[QUOTE=Vrae;1013801]I am SO in touch with the title of this thread! I am hurting so bad in so many places it’s insane, or going to make me insane. Every step or movement is so difficult and such a struggle right now. I feel like EVERY SINGLE ASPECT of my life is suffering. More and more things just slipping through my fingers, sometimes literally. And somehow I am suppose to get comfortable with that notion. Zen Vrae... Zen... Wide Open Spaces.... yeah that's it... right?

I sure do understand that feeling! Except you should feel good you're 9 years younger than me! No, but seriously this stuff really wears you down!
I think it's a great idea to go out!
We did that this last Saturday and a couple of drinks and some fun music and I almost felt normal for a few hours.
I think we SHOULD try to enjoy what we can!, we never what life throws at us next anyway but more true for us.
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Old 09-11-2013, 02:06 PM #27
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Friday (8/23) I had my last "authorized" (by WC) PT appointment. It was a terrible appointment. He had students there and he asked me to talk to them about my condition even though I felt like crap. Then he demonstrated the hot-cold therapy, even though we had previously discussed that I don't want to do that anymore. I felt helpless at the time with all those people watching over me, so I just took it. The cold hurt sooooo bad. I argued with him a bit over the logic behind this treatment, then he told me it was my last authorized appointment, and that he has to report I've made no progress yet. Well as of today I still haven't been authorized for more PT, everything moves so slow with Worker's comp... really delays treatment. I still have primary insurance from my employer while I am on medical leave, and I might have to start using it more, even though money is tight.

Anyway, I've had one of the most horrible weeks of pain of my life the past week, capped off by yesterday, which was like torture, writhing around in bed, almost went to the hospital. Now today I'm even more concerned, because I feel uncomfortable electricity/tingling up the front of my leg on that purple line I talked about in the original post. It's not painful yet, just annoying, but it's how the now very painful area started. It is happening right now as I write this, nonstop, sitting or standing (laying down is a bit better). Is the CRPS spreading? What should I do? I have another appointment with my pain doc on 9/12 and I think I'll go for the lumbar sympathetic blocks even though I am afraid of them based on what happened after my last nerve block. I'm getting scared I feel like I have no control over this at all. I've been so diligent with everything and it just keeps getting worse.
DC - Sorry for being so late on catching up on this thread. I think good P.T.'s should be on a pedestal for what they do for their patients. It makes me mad that they would turn on you just to show off to students!

My CRPS is my left arm and hand so my nerve blocks are through the neck area. I remember being just so TERRIFIED to have that done, especially since the first Dr. did not know what he was doing & hit my arteries, caused too much bleeding and botched the whole thing!
I UNDERSTAND YOUR FEAR! I researched and found another Dr. who uses Ultrasound guidance in addition to just the flouroscopy (X-ray) and she has been successful. i have 13 of them now about every 2 weeks. The first 3 were the most dramatic. I don't know if that was because since that was before I hit the 6 month mark of having CRPS or what. Maybe the subsequent ones act as more of a booster?
Maybe if the block goes into the spinal nerves you'll have better success than directly into the area that's so painful! I know it's so scary that ANY proceedure can cause this to spread. Oh, for what it's worth I'm told to take lots of Vitamin C before proceedure for prevention.
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Old 09-11-2013, 08:57 PM #28
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O....M....G....THEY DO FUR-LINED CROCS?!?!?!?!

I am sooooooooooooo getting a pair of those

Tank-oo (lol)

Bram.
Here ya go hon, Crocs Fuzz http://www.crocs.com/crocs-mammoth-f...efault,sc.html

They're the most wonderful thing ever!
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Old 09-12-2013, 12:10 AM #29
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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.

I can relate so much to your case..but bc I have it in my shoulder/arm, (and now in my feet), I am going to just copy and paste my first message on this site, since I did the same thing you did in my first post and wrote my whole situation to help explain my constant frustration. A lot more has changed since I first wrote but I can write that later... WC and RSD I feel are a horrible mix. Nothing adds more stress than dealing with WC, and stress makes RSD worse-a vicious cycle. I feel as though I am at battle with everyone-WC, my lawyer, my pride, emotions, extreme life change, my health, and the RSD itself. I don't have an answer for you and I'm sorry I can't write more right now since its hard for me to type at all, (thank u for voice to text apps) , but hopefully we can support each other in this RSD and WC world we now live in...but are planning to move out of....soon....and back to our pre-RSD life, maybe slightly tweaked but it will be ours

"I slipped and fell on the floor and injured my right arm-at work. I finally had surgery months later and after much painful physical therapy and they cut my bicep tendon and relocated it into my humerus along with repairing my labral tear and performing a subacromial decompression.

I had a huge amount of pain after the surgery during my recovery which I thought was probably because it took so long to have the surgery itself. I was wearing a sling on and off for months before the surgery so my muscle mass was hardly there so I thought that's why I was in so much pain after my procedure. The pain continued when I started therapy 6 weeks later which was so excruciating. I cried every time I went to therapy. I thought I was just being a baby but it hurt really really bad. My fingertips were numb and when I went to the doctor he thought maybe I just had carpal tunnel since I was in a sling for so long.

I started to notice I had extra hair growth on my arm and shoulder, really dark hair. I asked the therapist about it and they just stated that maybe I had some nerve damage from the surgery or nerve stress that was causing the hair growth. I was not doing well in therapy. I just wasn't progressing as much as I should of and I couldn't extend my arm out completely at the elbow and the pain was still so intensely high. I finally saw my ortho dr again and first he gave me a steroid inj in my shoulder which was excruciating. After that increased my horrible pain I followed up with him and he said that I possibly had something called RSD and that I needed to see a pain specialist to have nerve blocks to rule RSD out. I have never heard of RSD before so when I googled it I was shocked to read what RSD was. While I was reading the symptoms I was noticed that I had so many of them-the rash on my hand, the abnormal sweating, the burning pain, smashing pain, hair growth. I tried amitrypyline, lyrica, and neurotin, neurotin being the one with the least grueling side effects, although they all suck and don't help completely, so pain meds are a necessity.
When I finally saw a pain specialist he started with some sympathetic nerve blocks. I had a total of five nerve blocks, 4 stellate and one in my shoulder, but none of them worked for long, less than a week and one made my hand rash go away.

There was so much time in between my blocks and my pain was just increasing. I constantly felt like someone was smashing my bones, my hyper sensitivity was so high that I just constantly felt like I had a sunburn. This made me extremely sensitive to being around people. I didn't want anyone to bump my arm or touch my arm. I also have random electrical shocks that last anywhere from 5-10 seconds, which make me stop breathing because they are so painful.

I am still in physical therapy but nothing is helping. We were doing very minimal stuff since everything seems to aggravate it. We've tried mirror therapy, biofeedback, etc, just trying to desensitize, but now it has spread to my left arm and head, neck.

Being in pain all the time makes your life so stressful. On top of the fact I'm dealing with workers comp and not being able to see a doctor that can treat me I can hardly sleep at all. The pain is so much worse at night which makes it unbearable to sleep in my bed and get in any comfortable position. They say that stress makes it worse so what are you supposed to do when you can't see the doctor you need to see and nothing is working to help minimize the pain.

When people look at me they don't see anything wrong with me, they don't see the pain I'm feeling non stop. I miss the body I used to have, I don't like this fatigued, painful body that runs my every move.

I had back surgery over 10 years ago and I figured out what works for my back. I know now that if I do certain things my back will hurt so I don't do them. But RSD doesn't work that way. It does whatever it wants to do and there's no real rhyme or reason to how it works and when the pain is going to come on. That is what I think is the most difficult part of having RSD is the not knowing. Not knowing if there's a cure, not knowing when the pain is going to come on, not knowing if a treatment going to work at all, just the constant getting your hopes up for something that doesn't work. I would just rather have a set idea as to what to expect knowing that, okay, if I do this it is going to hurt so I'm not going to do it. This way you can go about living your life and knowing what to expect when you do certain things, not having to deal with the constant painful reminder of the incurable, destructive disorder.

Hopefully my next message will be letting people know that I have finally seen a doctor who is able to treat me and I'm getting better and I'm happier in my situation. I know that there's not a cure for RSD and probably won't be one in my lifetime, but I am determined to find a way to live my life happily with this disorder. I am hoping these words of encouragement are sinking into my body as I speak them because I absolutely need this encouragement because all too often the pain just takes over and doesn't allow me to be happy and have the strength to fight this. More often than not I am an angry frustrated person and I don't want to be that person. I want to go back to being who I was before- the happy person who goes to work everyday, multitasks with ease and not battle with the meds messing with my memory and basic ability to function as a great employee, can go to the gym and be physically happy as well as emotionally without worries of pain, can deal with the everyday stresses and struggles without having episodes, and in the end of the day doesn't have constant battle of dealing with RSD."
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Old 09-12-2013, 10:21 AM #30
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Quote:
Originally Posted by Brambledog View Post
O....M....G....THEY DO FUR-LINED CROCS?!?!?!?!

I am sooooooooooooo getting a pair of those

Tank-oo (lol)

Bram.
Hi Bram - I have a pair of fleece lined crocs, love them! So for colder weather, I have them and my Uggs This summer I found Sketchers Go Walk slip on shoes in wide width. OMG, they are the most comfortable, lightweight shoes I have ever put on! I am looking for them now in leather for fall/winter. I have RSD/CRPS in both feet and they do not irritate my feet at all!

Just had to share!
Nanc
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Brambledog (09-12-2013)
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