RND (Reflex Neurovascular Distrophy)

Im 16 years old, and have just been diagnosed with Reflex neurovascular dystrophy or, (RND) this a painful neurovascular disease caused from extreme stress and anxiety that constricts the blood veins and reduces the supply of oxygen to the skin, muscles and bones. This lack of oxygen can cause acid to build up, causing new pain that is then sent back through the cycle to cause the neurovascular nerves to constrict the blood flow again. If untreated, the pain caused by RND can become so severe that it interferes with the patient's ability to move the affected body part. For example, if a patient had RND in his leg, he would develop problems walking. In 90% of RND cases, only one or two areas of the patient's body are affected. In the other 10%, RND affects the patient's entire body. Many full-body cases start normally in one or two areas, but progress and spread over time. RND is more common among girls than boys (80% of children with RND are girls). A rare symptom of RND is nausea, causing the child to vomit on a daily basis.

Yes, that is from wikipedia, lol. but unfortunaly, i am the 10% that cause to hurt all over and have the rare symptom of nausea ect. My RND affects my joints, my feet, my abilitly to do the activities i like to do, the mall, go shopping, run around with my little cousin. It affects everything. i get headaches often. I also have what the doctors have been calling "Pseudo Seizures"
I am fully awake, but shake like im having a full blown seizure. No, it has no affect to the brain, and i tend to laugh during them, not knowing what else to do. I also have sever leg numbness, that makes me unable to walk. My RND also creates pain all over. I have been dealing with this for almost 4 years now, and i am so ready to get well... Dr. Sherry, at the Childrens hospital of Philidephlia, has a program designed to help kids with this problem...I was hoping to go to CHOP, but the wait list is 6 months. So i will be going to another hospital that helps treat my symptoms to hopfully alllow me to be a normal teenager again.. It can take from 2-8 weeks of extreme physical therapy, occupational therapy, therapists, and ect to help get through this. My mind basically has decided to control how i feel and how im able to function. It sounds crazy, but its real. I just hope i can get into a program soon to help...i really dont know how to handle this anymore...i feel like i am alone in this....am i? can this REALLY away? Ive never gone a day without pain..it seems surreal.

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You need to talk to Gina, aka "happymomgg'. Her daughter is in the same boat as you but is in remission at this time. I think there is another program in Seattle. She is the resident expert.
Reta

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I will find her! How old is her daughter? Did she go to Seattle?
Thanks for replying!...

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dear,i wish and pray for your positive spirit-may god bless you

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Gina has a 12, maybe 13 year old daughter by now. they participated in Dr. Sherry's program in Philly/ Gina is also a RN and will answer any question you have. Do a search on this site for RND or scroll through the members list to find her. Gina can explain what she has her daughter do at home.

I have heard about the nausea. I too suffer from it during flares. I am convinced that and vomiting are like a pressure relief for me, because I do feel better afterwards.

I have RSD which is another amplified pain syndrome and we are often grouped together. My disorder requires more symptoms and is treated differently.

I am sorry to hear you have suffered for so long. Has your problem been getting the correct diagnosis? It is hard enough being a teenager, but to be a teenager is pain is far worse.

Reta

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I did find her and added her :) thankyou for tellin me about her, My mom is dyin to talk to another mother that has a child going through this..it's taking a toll on my whole family.. Right now we are doing physical therapy at CHOA in Atlanta. We are waiting for a call from one of the hospitals that can help me get better. Everyone thought i had fibromalgia or chronic pain syndrome, but nothing made sense of my weird symptoms (cant walk, numb cold legs, marbling feet and knees, headaches, cant sleep, migranes, eye pain, joints hurting, my seizures, it was a mystery to everyone till my best friends mom was on Dr. Sherrys site trying to find stuff on bechets. (she is sick also) and found out what RND was. Ever since then the doctors stopped looking at me like I was faking it, or lying. I've had EVERY test done on me. MRI's, ultrasounds, cat scans, X-rays, hydascans, 2 colonspys, and a pill cam. Everything came back normal. So this is the only answer I can get. I wake up in pain and go to bed in pain. I'm just ready to get better...

But RSD is from a injury, right? How did this happen to you to cause this?

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On Halloween 2007 I was in car accident and the airbag slammed my wrist against the window. I wound up with a distal radius fracture (broken wrist). Within 2 weeks of being in a cast I was having episodes of burning pain and swelling. When I called the doctor, the office told me to take Benadryl and elevate my arm. The cast felt like it was lined with the most abrasive burlap. All the time I kept telling myself I can make it another 2 weeks. Secretly, I was thinking about what saw to use to cut it off my arm.

Around the 10 week, I saw a surgeon for another problem and I asked about healing. I said a couple of things, when he started asking me questions. Then he told me to look up RSD. I looked it up and cried. There was all those crazy unrelated symptoms that did make sense to me. At my next appointment I asked my Ortho if it could be RSD and he said yes. Then he shipped me off to Pain Management. Right after that, my RSD spread to my upper arm. There I have the vasospasms and my arm gets freezing cold. At my wrist/ forearm I would have the burning pain and allodynia.

I have had OT (since it is an arm), 7 nerve blocks and medication. I did an intensive home program and regained my ROM and strength. I was able to desensitize the area and only have problems during flares. I still can't wear a watch. I also can't allow people to manipulate my arm or my pain will soar. I wear a medical alert that says NO IVs, NO BPs, NO NEEDLES LEFT ARM. I still have to explain to them.

You might want to download information on RND to carry with you in case of a emergency. Here is a link to a Hospital Protocol for RSD/CRPS. (http://rsds.org/4/resources/hospital_protocol.html) I give information and this sheet to all my doctors and dentists to put into my records.
Reta

CRPS (complex regional pain syndrome) is the new name for RSD (reflex sympathetic dystrophy). It is a better name because it is easier to understand.
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Hi Shelby, Sorry to hear you have RND. There is hope! My daughter had severe full body pain 2 years ago when she was 11. I am sure that it was brought on by stress. She was very bad. Not only did she have severe pain everywhere, but she had constant severe nausea, migraines, dizziness, constipation, sleep disturbance, and abdominal pain, among other symptoms. She was pretty much bed ridden. Missed 4 months of school. I am an RN but knew very little about RND and all of the amplified pain syndromes at the time. My research brought me to Dr. Sherry's approach of vigorous exercise. His wait list was 9 months at the time. We live in NY and didn't know of other programs. We started the exercise our selves. We started with physical therapy 3x/ week since Christy was so weak. My husband and I gradually increased her exercise at home as well to about 2 hrs per day. We were lucky. Many kids need the full 6-8 hrs per day. I was told by Dr. Sherry's nurse that some recover with jusr 45 mins per day. Has nothing to do with how bad the pain is. The pain and other symptoms just gradually started to fade away after several months of exercise. She was pain free by March 3rd, 2010. In the past few years she has had 2 minor flares lasting a few days. We started exercising right away. Each time, I believe, it was triggered by stress. She's an anxiious and intense kid. She's 13 and learning to control her anxiety. This is a VERY important part of the treatment, sometimes just as important as the exercise!
I have since learned that Dr. Rosen at Pittsburgh Children's Hospital has a similar program as Dr. Sherry's and there is usually a MUCH shorter wait list-about 2-4 weeks usually. They treat all the amplified pain syndromes-RSD, RND, fibro, etc up to 21 years old. In the meantime, have you started any exercise? Are you able to. Also, a good psychotherapist can help with the anxiety. If you want to e-mail me my address is rg519wdo@aol.com. If you do that, we can communicate much easier. I can also give you my phone # when you e-mail me if you want to talk over the phone. You HAVE the powere to heal yourself from this. Please get back to me. Gina {happymomgg]

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Shelby, I want to add that fibro, RND, RSD, CRPS are all in the same family of syndromes. The trend is now to call all of them amplified pain syndromes. A person can have one form, say, RSD, and then later get another form like RND. It is all amplified pain. So few doctors know about these syndromes. Dr Sherry and his followers have treated both adults and kids successfully, however, kids seem to fare much better. Please e-mail me at rg519wdo@aol.co. I cxan then give you my phone # if you or your mom would like to talk over the phone. I want to help you. You will get well like my Christy did. Gina

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Just one more thing, Shelby, RND can be from injury-10%, infection-10%, stress-80%. With RSD, it is often started by an injury, but most doctors feel, especially with kids, that their RSD has a connection to some type of stress as well. Either way, the mind and body are closely linked. Can't treat one without the other. Looking forward to your e-mail. I would be so happy to speak to both you and your mom. Gina

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Thankyou SO Much Gina! I'm going to have my mom email you. She needs a mom to talk to that has a daughter with the same things I am going through! It's taken a hit on all of us the past month. I've been admitted twice into CHOA for over a week both times.
But I am currently in physical therapy right now twice a week. But it's not enough. We are waiting for 3 different hospitals to call us back right now. It's getting worse by the day it feels. I'm gonna have my mom mail you :) thankyou again!

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Hi Shelby, yes have your mom e-mail me. While you are waiting for a treatment center, increase the exercise on your own if you can. I will talk to your mom and tell her what we did. When I get your mom's e-mail, I will give her my phone #. Gina

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Hi Shelby, my names Emily, I too have RND. I'm 15 and was diagnosed by Dr. Sherry at CHOP in January of 2011. I began experiencing symptoms a lot like yours in January of 2010. I went through his program for 3 weeks this past August and was doing great after! I finally had gotten back to school (I was out of school the previous year because of all the pain) but I have gotten two concussions in the past few months which have caused me to stop doing my exercises which in turn brought my RND back and I am out of school again. I was just at CHOP Monday for my 6 month appointment and I may have to go back into the program. I know 6 months is a long wait when you're in so much pain but the program is so worth it !! If you need someone to talk to I totally understand your situation (:

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Hey Emily! thanks for sharing your story. id love to talk to you! im gonna send you a message with my cell number, so you can text me. I had to drop out of the school i was going to, and im homeschooled now. its so much easier but it is still always difficult to get up in the mornings. i think they are the worst.

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I have done two of those programs. The first one I did was shortly after my accident (6-8 months after) and I only had it in my left leg, I went to Seattle Childrens Hospital, for once we had a doctor that really understood us! I ended up doing well, and I learned to walk and got the pain down, although I still had pain. I had a normal summer up until at the beach I dislocated my should and tore my rotator cuff.
May of 2011 after my birthday I was taken to Dallas Childrens Hospital. They had a new program that was said to be like all the others, I was there 2nd patient. Things did not go well, I stayed a few months only to get worse and worse. I ended up passing out/having seizures all the time from the severe pain. I finished up the program and went home worse.
I have RSD (another name for RND) full body, and we believe also internally. I have been on Hospital/Homebound schooling for 3 years.
When were you diagnosed? And when did the symptoms start?
In the first year or for kids with it in one limb I would recommend these programs they have had sucsess.
I personally would not recommend Dallas, but I would recommend Seatlle, Cleveland, and Boston.

I Have had every treatment besides SCS, I just got done doing a week of Ketamine, and I was doing pretty good up until yesterday, so we are waiting to see how I do. I also have other medical issues, I am diagnosed with Ehlers Danlos Syndrome, and I have many undiagnosed symptoms. I more than likely have POTS syndrome, and now my doctor is also thinking a Metobolic Disease, maybe Mitochondrial Disorder.

If you would like to email me we can talk and you can add me on Facebook and I can have you added to the Teen Group for RSD (another name for RND)
Here's my email: atvchick09@yahoo.com

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I thought RSD was the same as RND?
If it isn't than, I actually have RSD not RND!

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Nope I don't think so! I was told RSD was from a accident, and RND is from stress.
But either way it's now called Amplified pain syndrome! Which is the universal term for all diseases like ours.
What are your seizures like?! I have them two right now. I have been dealing with this for over three years, I was hospitalized for over two weeks this month, (leaving and coming at least twice a week) and then finally got a answer! So I haven't been diagnosed long, about 3 weeks now. I'm so ready to go to a hospital. We have tried to get me into Boston, Seattle, Philidephlia, Huston, Cincinnati, Grand rapids Michigan. We cant seem to get anyone to call back to help! CHOA doesn't have a program for this yet, in fact, no one here knows what RND is. Mh best friend has been sol with Bechets, and her mom was on Dr. Sherry's site for RND, and found it for us!
But I'd love to talk to you! My Facebook link is under my profile websites. But I'll go ahead and add you :)

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RSD or CRPS and RND fall in the same family of amplified pain syndromes. RSD/CRPS is a disorder of the central nervous system that usually starts in an extremity, i.e arm or leg after a trauma. Although, about 10% are idiopathic, meaning the injury/trauma is unknown. There are 2 types of CRPS. Type 1 or RSD is where the nerve injury cannot be immediately identified and Type 2 is where there is a distinct "major" nerve injury. CRPS is best described in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path.

A diagnosis of RSD/CRPS type 1 requires more signs/ symptoms than RND. A sign is is reported by the patient and a symptoms is observed by a doctor.

This information is from RSD Foundation.

Making the Diagnosis of RSD / CRPS

The diagnosis of RSD / CRPS can be made in the following context. A history of trauma to the affected area associated with pain that is disproportionate to the inciting event plus evidence at some time for one or more of the following:

Abnormal function of the sympathetic nervous system, e.g., abnormal changes in skin blood flow, sweating or goose flesh.
Swelling.
Movement disorder.
Changes in tissue growth (dystrophy and atrophy).

Thus patients do not have to meet all of the clinical manifestations listed above to make the diagnosis of RSD / CRPS. Note also that the criteria state "evidence at some time" for the clinical findings. This does not mean that the evidence for the clinical finding listed has to be constant. This explains why swelling, abnormal sweating, abnormal skin temperatures, etc., are not reported by the physician on some visits. Sometimes weather plays a factor or emotional stress or the patient may be in a flare-up or a remission stage. Patients have good and bad days.

The RSD / CRPS diagnosis is precluded by the existence of known pathology that can be explained by the observed symptoms and degree of pain. The pain and symptoms of RSD / CRPS may exceed both the magnitude and duration of symptoms expected from the normal healing process anticipated from the inciting event. There seems to be a small group of patients whose pain following trauma resolves over time, leaving the patient with more of a movement than a pain disorder. There are "grades" of this syndrome described in the literature with symptoms ranging from minor to severe. (http://www.rsdfoundation.org/en/en_clinical_practice_guidelines.html#DIAGNO SIS)

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Thanks I was told it was all the same. I have RSD, started after a ATV accident in 2009, I had it in one leg. But now have it full body with possible organ involvement. I had every symptom, now I dont have every symptom but still have some of the main ones plus a whole array of other problems and other illnesses.
I have a few types of seizure that have happened to me. Some I just started shaking and after was confused and felt very weird. 2 of these they believed was from serotonin syndrome at the time but who knows. Than I have absence like seizures. What my dad described was I was stiff and strait as a board. My eyes were rolled back and glassy looking and I was unresponsive and once he said a nurse was in there trying to get me to come to and I finally did after 2 minutes but than I didn't speak or anything for a little bit and than I started mumbling and seemed confused.
What are yours like?
If you look up Kendall DeArkos on Facebook you should find me!

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This is a very tough thing to research, most of the literature list RND as one of the many names for RSD/CRPS. The best source of on RND literature seem to come rheumtalogy journals.
Reta

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Hi RSD fighter, The trend in the medical community is to now call all of these syndromes AMPLIFIED PAIN. They are all variations of the same disorder. Furthermore, a person may have one form, have it go away, and then develop another form. You may have pain in one limb or the entire body with or without changes in skin color, warmth, ect. Both the autonomic and sympathetic nervous system may be affected. If you go to chidhoodrnd.org there is an article on amp[lified pain syndromes and a diagram of how these symptoms overlap and may or may not be present. This applies to both adults and kids. I have e-mailed Dr. Sherry and several other renowned rheumatologists personally and discussed this with them in my quest to learn as much as I can. I wish you the best. Gina RN

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