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 10-30-2017, 04:36 AM #1
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Has anyone experienced a spread from feet to hands? I ask, because this is what seems to be happening to me. I am continually aware of my hands, they often turn bright red, they "tingle" all the time and the pain sensation is both cold and hot. I am literally going out of my mind.

My next question is going to sound bizarre, but has anyone had eye involvement? My eyes have changed, I look like a different person in photographs. The neurologist commented on my "staring appearance." In addition, my eyebrows are swollen, have a weird rash and the hairs are breaking off.

All my blood work is perfect.
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Old 10-30-2017, 04:52 AM #2
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I have had spread from my hands to my feet. I get swelling, burning, redness, shiny skin, sweating and excessive hair growth. I also have spread to my stomach, mouth, teeth, scalp and eyes. My PM dr has had to increase my pain meds because of this pain. That is about all he can do because I have had rsd for over six years now. If it were in it's early stages they may have been able to do more. My right eye only opens halfway because of a swollen eyelid. I also get dry eye, infections, styes and blurry vision and pain in my eyes. In addition I was recently diagnosed with cataracts in both eyes. I am in my early fifties and my dr feels that rsd can affect the eyes. There is not much they can do but provide eye drops for the dry eyes and do cataract surgery but not until a few more years because my cataracts are in their early stages. It's very scary when spread occurs but I try to just take things one day at a time and move as much as I possibly can and am trying to lose weight and eat better. Hoping your spread stops soon and that you find some comfort in knowing you're not alone. Hugs and Prayers to you my friend.
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Old 10-30-2017, 08:14 AM #3
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Thank you! I don't know how you function. I am living my life by chunking. I put a load of clothes in the washer and then rest. I assemble what I need to cook and then rest. Later I will cook, but leave the clean up for my husband. Today the gym was closed due to a flood so the gym energy was used to make breakfast and start the dishwasher, my husband emptied it.
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Old 10-30-2017, 09:59 AM #4
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Mine started in my left ankle and is now in the whole leg, both arms including both hands, my torso, and my neck...and in my abdomen after my Csection when I gave birth 3 years ago. When the spread first started to happen, I had pretty much every test known to man to check for what else it could be...but deep down I knew it was spread even if I didn't really want to admit it. Once I accepted it and my doctors ruled out everything else and started treating it, the spreading basically stopped and I'm just short of full body and hoping to avoid any more spread. Some may say that I'm extra cautious with certain things...but if any of those precautions help avoid spread then totally worth it.
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Old 10-30-2017, 07:41 PM #5
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I have had CRPS for 15+ years. While my original site doesn't respond to blocks, new areas still do. Ketamine infusions, hyper baric treatments and steroids have also helped calm down new spread. If Lidocaine patches work, use them. Etc. You want to try everything possible, asap.
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Old 11-03-2017, 09:43 PM #6
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When it started to spread to the left foot my doc ordered a sympathetic block ASAP (as in w/in a week or two) and it stopped it in its tracks. SO it hasn't moved past just the heel. But yes, bright red, hot, piercing tingles that are so painful. So IF you can, you need ASAP block to halt the spread. You can't make it go away, but you can keep it from moving forward if the doc will act swiftly and aggressively. Also, do what you can to be aggressive PT wise. I.e. don't let it tell you not to use it (whatever is getting red/etc.) Cause as we know if we stop using the area it only gets worse. So I made myself treat that foot normally, keep walking on it etc.

I don't remember where I read it, but I have read more than once about CRPS/RSD affecting eyes/vision in some people.
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Old 11-04-2017, 01:43 AM #7
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Everyone is different in how they respond to blocks (like all things CRPS related), and even the technique of the doctor can make a difference. I literally woke up screaming about my shoulder after my hysterectomy. I did have a rotator cuff tear, but it was severe CRPS pain that was the issue. I also had swelling, it got very hot, and I had a bad rash. My shoulder still has the structural issue, but 5 weeks after the block, the spread hasn't returned.
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