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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

HI ROBERT, I HAD KNEE SURGERY AND DEVELOPED RSD. WHAT I'VE BEEN TOLD ABOUT THESE BLOCKS(NOTE I COULD NOT GET ANY), THAT IF A DOCTOR ATTEMPTS 1 AND THE PATIENT DOES NOT GET RELIEF, A DOCTOR WILL LIKELY NOT TRY AGAIN, DUE TO CAUSING MORE TRAUMA IN THE NERVOUS SYSTEM. I AM SCARED TO DEATH OF NEEDLES AND THE ONE DOCTOR TOLD ME THAT A BLOCK MAY NOT WORK THE FIRST TIME,DUE TO HOW THE NERVES ARE DIFFERENT IN EACH PERSON AND YOUR DOCTOR MAY NOT HAVE HIT THE RIGHT PLACE. I don't know whether your seeing a neurologist or anthesialogist, I see a neurologist. If the RSD is new you need to get aggressive treatment, physcial therapy, and have her keep the leg moving. I am in severe pain and mine has basically become a full body RSD affecting my left leg and upper body. I also have go to biofeedback to help deal with the pain. She will want to guard the knee from use because it hurts but SHE MUST KEEP THE KNEE MOVING. Also if she can get in a warm pool and hot tub she will be able to move easier, and it will hurt less. Narcotics will only take the edge off the pain, at least for me, and a body will build up a tolerence to them over time, so making the dose even higher. Ask your doctor about ketamine gel. I rub this on my knee 3 times a day and it numbs the area for me and gives some relief. My doctor who is in PA does research on RSD and likes the lidocaine infusions. There is a top notch doctor in Fort Washington, PA and he has his own website. He is awesome and he is a neurologist. About the temperature question- All I know about that is they try to get circulation in the affected part because of the sympathetic nervous system(thats your flight/fight) being stuck on and they are trying to shut it off. WE live normal body conditions under our parasympathetic nervous system and it controls our body except when we get excited or surprised and thats when the sympathetic nervous system kicks in and takes over the body. Each system controls different things in 1's body. In RSD the sympathetic takes over and the wires get crossed and it doesn't shut off (so that part of the body is ready to fight/fight and it the normal body function of the parasymathetic can't regain control). I hope I didn't confuse you. Just be aggressive with the treatment, ask questions, and keep her moving. jokehakk
[Hi Robert :wave:

Welcome to the board. Sorry to hear about your daughter's diagnoses. How old is she? This is a great place to get information. Everyone is very nice and helpful. If you read through the pages of posts here you will find a lot of good information too.

I have read a lot of conflicting information about whether or not a second block should be done if the first one is unsuccessful. Personally, my first block did not work at all but the second one provided some relief. I don't know about the temperature question..I'm assuming they are trying to warm the limb up but I may be wrong, that was never really discussed with me. I'm sure someone on the board can answer that one.

I agree with Joke, ask her doctor for lidoderm(lidocaine) patches or a ketamine cream. They can really help with pain and sensitivity.

Good Luck~
Gina :)
[SIZE=3][COLOR=RoyalBlue]Hi Robert,

I've had RSD for almost 18 years-since I was 15. With RSD, the sympathetic nervous system is over-active and one of the things that happens is the blood vessels clamp down causing less blood flow and therefore, a temperature change. One of the goals of the block is to quiet this over-activity which, among other things, causes the blood vessels to open back up again and allows the blood to flow more normally. That's why one of the goals of the block is to increase the temperature of the affected limb. I hope this helps to explain why they want the temp to increase.

If I were you and your daughter, I would try another block. I don't think one failure is enough to conclude that blocks won't help your daughter. I might also recommend that you think about trying to go to a doctor in Manhattan. I live on Long Island and that's where I finally went after seeing many "doctors" here who knew nothing about what was wrong with me. I know it might be a hike, but I think it's worth it. I hope some of this helps you and I'm sorry you and your family are going through this. It's a tough thing.

Sharon :)[/COLOR][/SIZE]
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.

Hi Robert,
I'm sorry to hear that another young woman is being afflicted by this monster. I don't have much to add to the really good advice everyone has given you so far. I agree that one unsuccessful block shouldn't deter the doctor from trying again. He may have missed the mark. I would definitely recommend that your daughter is seen by a pain management doctor/anesthesiologist who is familiar with RSD. There are other drugs available if neurontin is not helping. Some of the antidepressants also function as neuro pain blockers as well as help with the depression that is ever so present in RSD patients. Percocet is not a neuro pain blocker, but could help with break-through pain.

I also strongly agree with everyone's suggestion of physical therapy. It is the cornerstone of any treatment plan for RSD.

I've bumped up a thread that provides a link to a Mayo Clinic article on CRPS (RSD).

Please feel free to ask anything. Early aggressive intervention is necessary to beat this thing. I'm halfway there because of all of the good advice I received from the people on this board.

Best wishes,
I am also so sorry to hear about your daughter but glad it was caught early. How old is your daughter??

I am 26 and developed CRPS after a mortons neuroma surgery in my foot. I had a delayed diagnosis and a doctor that just didnt beleive me. So I had to find my own doc nad by then i was in stage 3 or a severe state of the CRPS. But anyways, Your daughter should have another block. If your daughter didnt get the warm sensation or the warm leg, then the block wasnt preformed properly. I had one done in my good nad bad leg and it did the warm feeling and sensation in both legs. These could be the one thing that can put it into remission and fast being that she is newly onset.

In regards to the neurontin and percocet.. I am on 2800mg of neurontin and it dosnt help and NO pain meds will help the pain at all.. It will only take an edge off and thats it. Oral narcotics dont treat neuropathic pain. SO dont think your daughter is either not taking it or being a wimp. Someone before me siad that the anti depressants are good to help with the pain and they are. Alot of us are on Elavil and it takes the pain away better then the pain killers that kill your liver (at least for me )

Also do not put ICE on her kneee or leg or even that whole extremity. It will only make the pain worse and spread it.! Warm soaks with epson salts are the best. I live in the bath tub where i soak my foot all the time, expecially at nite when it seems the worst. Also make her use her knee and keep it mobile. Thats what screwed me and it has left my foot severly deformed that i can only walk on the outside of my foot and the rest is in the air, i am unable to wiggle my toes and my foot is frozen so that i can not move it up and down or side to side. So tell her to keep it moving even if it kills!!

Also see a Pain doc/Anesthesiologist not a nurologist (he can only do the tests that are bogus and painfull and can hand out some meds, and nothing like the blocks that your daughter needs)

Waiting the 4 weeks is nuts!! ask to be put on a waiting list or find another specialist!

Keep in touch and let us know how shes doing!! And if you have any questions ask away.. lot of us here are veterans with dealing with this and have been through almost everything there is out theere to help us beat this awefull disease!!

Hope shes having a less painfull day!

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