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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Robert, I am sorry to hear of your daughter's diagnosis, but I am glad you found this place. You'll find the best information from those who have been there/done that, but it's also very important that you hit the internet and do as much research as possible about RSD/CRPS so when you do go to the doctor, you'll be able to make informed decisions regarding your daughter's treatment.

I agree with the advice given you already. Your daughter is very lucky that her team doc picked up on this and sent her to a pain clinic so quickly. RSD is not curable, but it is treatable, and there are several treatments out there, but the blocks are the best way to try to get it into remission. The sooner you are diagnosed, the better your chances of doing this, or at least to help prevent it from spreading (hopefully), so Shelly is very lucky in that regard. Early aggressive treatment of RSD will give her the best chance at remission. Jokehakk was right about the warm soaks. Adding epson salt to the water is supposed to help some too. Heat can really help take the edge off of the pain when it is really bad. I like to use the microwavable gel heating pads, they really help when my pain becomes acute. One thing I need to stress to you is to [B]NEVER [/B] put ice on the area, even for swelling. Ice can make her RSD worse and can cause it to spread.

You said that she was referred to a pain clinic. I am assuming it was an anesthesiologist that did her lumbar block. Why did he refer her to another doctor? Is he sending her to someone who is more experienced with RSD?

I'd too would like to express how important it is for Shelly to keep her knee mobile. Did this doctor refer her to a physical therapist? It is important that she does see one. If she does not keep the muscles moving, they will atrophy, and it can get to the point that she can lose the ability to move/use her leg because her muscles will not be strong enough. I am not trying to scare you, but this is true. RSD is a horrible monster, and it knows no mercy. That's why it is so important that you read up as much as possible about it and learn as much as you can.

When Shelly does see a physical therapist, make sure it is one who is experienced with RSD. The expression 'no pain, no gain' does not apply to RSD. Over-doing it can cause bad flare-ups, so gentle PT is the key. Also remember that you and Shelly are in charge of the way ya'll want to treat her RSD, not the doctor. It is up to ya'll to decide what you want to have done and what you don't. If you are not comfortable with something, don't do it. My doctor is great in that he lets me know what my options are, but lets me decide what we'll do next. There has been a couple oftreatment options that I have declined at this time. There is nothing wrong with that, so don't let your doctor "bully" you into thinking otherwise. There may be a time in the future where I feel it is time to chose those options, or I may never chose to have them done. Either way, it is *my* decision.

The purpose of the block is to get the circualtion going in the affected limb and to help control pain by using numbing agents in the block. The purpose of using the numbing agents, usually marcaine, is to break the pain cycle by giving trying to calm the nerves down by numbing them for a while. Most docs do a series of blocks, usually 2 - 3 a week, but this varys from doc to doc. There are some that only do one a month. Getting the blood flow to increase in the limb is what causes the warming that the doc told her about, and that is important to aid in the healing process. It is very possible that the doctor did not hit the right area with the block.

Another thing to remember is that RSD affects everyone differently. We all have different symptoms, or varying degrees of the same symptoms. Don't let doctor's tell tell her that the pain is in her head. It is not, it is very real, and can be very severe, and she is young to be having to go through this (I am assuming she is in High School?). RSD is the most painful chronic pain condition there is. ("According to the McGill pain index, arthritis has a pain rating of 18, a fracture 19, cancer 26, chronic back pain 27, while incredibly, RSD/CRPS has a rating of 42. It is extreme to say the least." I've also found that labor pains are a 22 on the scale).

I hope I have been able to help you. If you have any more questions, please feel free to ask. If you need to get something off of your chest, this is your 'sounding board.' That's why we are here. I'll be keeping you both in my prayers, and I pray that the new doc can help her get her RSD into remission.


Cathy





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