14 year old daughter wiht RSD/CRPD
 

Help!! I feel like we are losing the battle ..My daughter was diagnosided in March and has had no pain relief. She is becoming very withdrawn and sad. I have no idea what to do anymore. We are waiting to get into childrens pain clinic, but 2 more weeks. She is on cruthes and no longer able to ride her horse. Any ideas anything would be greatly appreciated.

Thanks so much.

Hi Heather,
So sad to hear of another youngster with RSD.
She will need all of your support, love and sometimes strong actions with doctors who fail to Rx adequate pain relief for her.

Our members here can help you with suggestions - I'm sure.

:grouphug: hugs to your family:grouphug:

http://www.google.com/search?hl=en&q...=Google+Search

Is she part of any teen groups so that she doesn't feel so alone? Above is a link through google of teens with rsd. Also, myspace has quite a few teens with rsd. Hugs.

Hey Heather,

I am sorry to hear about your daughter, how long has she had the RSD? It does really suck getting it as a teenager, I developed it at 16. The thing to remeber on this site is that we are the ones who have not got better, but for everyone one of us there are hundreds or perhaps thousands who have recovered and have gone back to totally normal lives.

Is here PCP being any use at all? Rogue's suggestions sound good! as does joining some form of support group (Christine).

It is really hard being a teenager with RSD as, just through sensory overload, it makes it hard to go out or do "normal" things because of the fear of being bumped etc and it is so easy to get isolated (of course leading to the pain, isolation, depression cycle).

Will the PCP not prescribe ANYTHING?

Sorry, I know this hasn't been a particulaly useful email - all I can suggest is badger the consultant and try and keep your daughters life as normal as possible, so even if she can't ride if she can help out with the horses or something so some element of normality is still there (could she ride side saddle? I don't ride, so I have no idea!) and your daughter will still be able to interact with others. Distraction doesn't take the pain away, but it definetly affects how you percieve the pain, at least for a moment

Feel free to PM me if you have any questions or anything.

Best of luck, love

Frogga xxxxxxxx

First off, I am so sad to hear about yet another teenager with RSD!! :( I understand what your daughter is going through, I have had RSD since '05 (I was 15 then), and am nearly 17. I would love to talk with her! Many soft hugs to you and your daughter! :hug: :hug: :hug:

I wouldn't suggest going to a "Children's Hospital" program for RSD...

READ this article, PLEASE!!
http://www.rsds.org/4/youth/pdf/AMP_...entHandout.pdf

Dr Sherry (the head rheumatologist at Children's Hospital in Philadephia, PA) believes that the child "did this to herself, and that the reason she has RSD (he calls it RND- Reflex Neurovascular Dystrophy) is because she was a high achiever, has family relationship problems, couldn't deal with stress properly, could be an anxious child, or could be a highly responsible child, is depressed etc, etc... (so, he thinks that all of these "psychological problems" caused her disorder).

I wouldn't suggest his clinic... unless you believe that your daughter has a psychological problem and needs it beaten out of her head (he'll give lots of one-on-one counselling, family counselling and group counselling as well as aggressive PT).

Dr Sherry's site: http://www.childhoodrnd.org/index.html

A. I. DuPont hospital for children isn't much better- they believe in the physical therapy, psycho therapy and medications (Dr Sherry at "Children's Hospital" does not allow any medication, and he believes in making you do PT through the pain for hours at a time (even if you scream and cry!), and he believes that you will get better by PT- which certainly hasn't proven true in mine and many other's cases). DuPont will not do nerve blocks or injections, and you will find that they also believe that in a way a child "did this to herself" (and it is caused by depression, personality traits- high achievers, highly responsible children-, anxiety or any family/ relationship problems), thus you need psycho therapy to fix your problems that caused THIS and you must get pain coping skills as well from a psychologist.

I am not ruling out helpfulness by a psychologist for pain coping techniques (I rule out a psychologist who wants to analyze me and find out why I "did this -RSD- to myself!) or PT. PT is a good thing, but it has to be done right and somewhat gently (aggressive therapy did not make me better- only with sensitivity to touch- and I deal with nearly full body RSD), not to the point that you are screaming and crying in pain and exhaustion. It is too much on you if you do that much PT when you've got RSD. It flares up your pain a TON, and it makes you even more exhausted.

I previously believed that aggressive therapy was the way to go, and that it would cure me. It didn't! And I went through a LOT of pain from doing it that way for months. It wasn't worth it. I now do a home exercise program which has helped me, since I can do an exercise, rest, do another, rest and so on! PT in moderation is helpful. I am on different anti-seizure medications (they help with nerve pain), anti-depressants (they help with sleep, migraines and pain), muscle relaxants (for muscle spasms) and a pain medication.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Medications will probably help at least somewhat (anti-depressants, anti-seizure medications and pain medications are all options for relieving some pain). Nerve blocks, trigger point injections, massage therapy, physical therapy and SCS are options as well.

If she deals with sensitivity to touch (allodynia) desensitization may be helpful. If you have questions on desensitization, I'd be gald to tell you more.

i, too, am so sorry to hear of your struggles. this type of pain at ANY age can be debilitating, but i'm sure it's terribly scary for your young daughter.

like some of the others have said, heat has worked well for me. i have been getting nerve block shots that have been a TREMENDOUS help in relieving nearly all of the pain for awhile. i have also been prescribed some heavy duty pain meds (methadone being one of them) to control it.

is your daughter in physical therapy? does she take any meds for the pain?

i will keep her in my prayers...

shalom,
angie
:hug:

I realized that the link to the article by Dr Sherry will not open (it is PDF). If you go to blingo.com or google.com and type in "Sherry RND" you will find the article I was talking about. It is titled "Amplified Musculoskeletal Pain or Reflex Neurovascular Dystrophy (RND)". Or you can type in the whole article name. Hope this helps! :)


Oh, by the way, I am a member of many email groups and many message boards, but I found this board to be most helpful. It is an active group, with RSDers of all ages! I have gotten lots of support and help here. We'd love to have your daughter join! Most any question about RSD you might have (except asking the cure... because no one knows that! :(), someone will answer here. Here she can find many people who understand what she is going through. Months back my mom found this message board and told me to join, as she knew I needed the support and answers to my many RSD questions. She also encouraged me to read up on RSD- which I have now done for months and have learned a lot! I read everything and anything I can get my hands on! Just reading about others with RSD made me feel that there are people out there that understand what I, too am going through! But talking with people with RSD has helped me tremendously!

Unfortunately I have found out that the RSD Hope Teen's Corner is no longer active.

Plus- there are just pages and pages full of info right in this RSD forum, and in the links topic at the top you can find lots of websites to visit.

Actually, RSDHope's teen corner is very much active as a yahoogroups list. The website just can't be updated, unfortunately.

I would suggest that your daughter start new hobbies. That is what I have done. I could barely use my hands, but I made myself start new hobbies. I made myself type, work with clay (sculpey clay is a lot of fun and you can make many cool things with it!), bake, etc... It takes me a LONG time to do anything, but it is an accomplishment.

I was grooming dogs for my neighbors (had about 10 dogs I groomed regularly on my own), training/ grooming/ running with my own dog... and then my RSD got really bad and it drove me to search for a doctor who knew what was wrong with me. I haven't groomed any dogs in months, and I can no longer do that. For a while I was so sad that I could no longer do this, as it was my hobby, and I was planning on grooming/ training dogs (starting my own business), but then I was encouraged to try something new. Try doing something other that I could do to some extent. It was then I discovered sculpey clay, researching different topics and my mom has been telling me I should start trying to crochet again. I just have to find new hobbies that I CAN do, and not think about all I CANNOT do, and feel like I am sooooo limited. I am very limited, but I cannot dwell on that. I need to find things that I can do and succeed.

I would encourage your daughter to try a new hobby, or to do something with her horse. Even if it is just brushing him for a few minutes, but still being with her horse, and doing something more "normal". Encourage her to try normal activities. It might have to be slow at first, and only for a few minutes, but it is still something! She can feel that she accomplished something- even if it's small it is still something! We RSDers can feel that we accomplished something by trying something small, and though others see it as small, it is a victory for us!! Even going to the mailbox, getting in the car, walking a few feet unassisted, etc are victories!

I love this quote (I remembered it when I was writing the above sentances): "It is better to try and fail then not to try and succeed."

I hope your daughter can find something to do! Normal activities also help with feeling useful, and not shut up and depressed. I wouldn't suggest allowing her to never leave the house, because she will become really depressed and shut up from the outside world. It is a downward spiral.

I hope I have helped you in some way! Please feel free to PM me! I'd love to talk with you and your daughter! :)

Keep on encouraging her! A positive spirit beside me at a hard time is such a blessing! I appreciate when people praise me for something I have done and they recognize that it is a victory for me!

Hey. I was also dx with rsd at age 14 (im 15 now) so I know how your daughter feels. It almost seems as if you are describing me and how I felt after being diagnosed. I felt the same way when first got rsd in June of 2006 and was finally dx in September of the same year. I was always sad and I felt withdrawn from everyone because they didn't understand and I was just always frustrated that nobody could help and relieve any of the pain and also being a freshman in highschool, it was harder on me. I was on crutches for 7 months and in a wheelchair for 2 months before they actually started treating me. But if you want to give your daughter my email address:

nikkijo@sc.rr.com

I would be happy to email back and forth to her.

Anyways, I know how your daughter feels and I know how you feel as well. I know it is very hard for a parent to see their child go through this. It was hard for me to see my mom going through it.

For me, the things I found to help best was to try and make things seem as normal as possible. I am not one to accept change very well and I didn't like going from being normal to having everyone stare at me and treat me different and doing everything for me because I was an independent person. I was also a high level competitive gymnast before my injury leading to rsd so I pretty much lived in the gym. I thourouly enjoyed going to visit atleast once a week and I was able to do things w/o my foot (before spreading to all 4 limbs and back/head/neck area). But try taking her to see the horses atleast once a week even if she says she doesn't want to go. It will help greatly. And have her help with the grooming and brushing.

But some other things that helped me were finding an adult (not family or any really close family friends) and just talking with them. Before, I felt that just not saying anything about it to anybody was the best solution but then I started talking to my science and health teachers because they were very understanding and concerned and I never realized how much that helped. And now at my rehab place I am going to for therapy, I am in a daytreatment program with some of the nicest people you could ever meet. We all have different injuries (stroke, paralyzation, brain injuries, etc) and although we can't fully relate to how the pain feels, we all can relate to the different emotions we feel with it all (frustration, jelousy, sadness, etc).

But just have her talk with someone. She doesn't even have to bring up the rsd. Just talking to someone helps. Then after the conversations are just natural, the rsd and everything dealing with it will just come out.

I hope this helps out. Best of luck to you and your daughter.

Nikki

this is to InHisHands
 

I'm sorry for both you and your daughter. I have only recently be dx with RSD, but I also have horses. I haven't ridden in over 3 years, yet I still spend time with them. I had to get them used to the crutches, then wheelchairs, then pumps going on and off. On my worse days, (I had a lot), hubby would gather all the equipment I was attached to, carry me to my wheelchair, take me outside the door, then he would bring one of the horses to me so I could smell and pet him. It wasn't much, but in all honestly, if I didn't have my horses, dogs, and cats, I don't think I would have a reason to get out of bed. Kids are grown, and hubby can take care of himself. If the horses bring her joy, try to get her close to one, even just to do a light brushing. Just to get a horsey/doggy kiss is worth it's weight in gold. If she wants to talk to another horse lover/owner, I'd love to talk to her. It doesn't matter the age, losing the ability to do what you love hurts, sometimes more than the RSD>
Mary
:grouphug:

Yes, I miss working with dogs a LOT!! I just adore dogs, and when my RSD got real bad it was upsetting to lose the hobby/ job I loved so much.

I still have my pup, and I do try and brush him at times and I pet him (good desensitization!) all the time. He is my baby, and has comforted me through some pretty rough days. I love him to pieces (hey, I put a pic of him in the photo thread... if you want to see my baby)!

Thanks for the idea, that might be something worth looking into! I doubt that I will ever be able to groom or train dogs again (I am not losing hope though, because it might happen!), but I want to find some job I can do that includes dogs (preferrably at home, and I can choose my own hours) some way!

Thanks again, Rogue! :winky: Tell me if you have any more ideas on the subject!

Heather,

I know I posted and told you what I think you SHOULD NOT do regarding what doctor to see and what hospital to work with.

I am telling you all this because it is what I SO WISH someone could have told me, when I was first diagnosed with RSD! I had a bad experience, and so did a friend of mine with the children's hospitals! For some reason, when children/ teenagers get diagnosed with RSD the doctors assume that the child/ teenager has psychological problems that caused it! No matter if you say "But it started with an injury! She doesn't have psychological problems"... some will give you this reply, "In 80% of children there is psychological stress and we cannot find an identifying injury". Just because the child cannot remember the injury that started it doesn't mean there isn't an injury starting it! (I mean, the child wouldn't remember every bump and bruise, and the RSDSA says that even a deep bruise can cause RSD!), and yes, 80% of children/ teenagers do have psychological stress!! All teens have life stresses- think about teens breaking up, having relationships and additudes, etc! But that does not mean that it causes RSD! An injury starts the cycle of the body going haywire.

Why do doctors who work with children/ RSD say that it is psychological, but doctors who work with adults/ RSD don't say that? (for the most part!)

Dr. Robert J. Schwartzman states "it's never, ever psychiatric. When you have severe pain that totally wrecks your life, you're depressed."

In contrast, doctors from Children's Hospital feel it IS psychiatric! So, I am just begging you, unless you feel your daughter has a psychological problem, PLEASE don't fall into their hands. They will put things into your daughter's medical records that you DON'T want!! They always slant things their way, and they see you and your daughter as psychological nut cases. That is really the way it is.

Now, what SHOULD you do? I would suggest looking for a pain management doctor who works with children/ teenagers. It'll be hard (and the pain management doctors from the children's hospitals won't work), as a lot won't work with children... only adults. I'd suggest finding some, calling and seeing if they work with teenagers and RSD. A neurologist or rheumatologist would also work well! Just make sure they deal with RSD and teens. That is what I had to do. It was hard finding one, and waiting some time to see him, but it is the best that can be done under the circumstances.

A good doctor can start your daughter on medications, injections, therapies, etc. and hopefully things will make a good turn around for your daughter!

I really hope things work out! Take care! :hug:


P.S. I know you must feel so bad for your daughter... I know how my parents feel so bad that I am going through all this, and they feel so bad that they are so helpless. Even with medications I live in severe pain (nearly full body RSD), and there isn't anything my parents can do for me. :( The only thing they can do is lend me a listening ear sometimes and encourage/ comfort me.

Here is a thread on the topic of hobbies you CAN do with RSD: http://neurotalk.psychcentral.com/sh...ad.php?t=13626

Adding a bit...
 

What IHH said above is completely correct. I just want to add a bit, as after 14 years of research, I've discovered a few things.

Why do peds pain management docs think RSD is psychological in kids? It's idiotic, but there's sort of a reason. Basically, kids respond well to the treatments they do. That's because these pediatric docs use very basic, conservative and conventional treatments to treat RSD. They prescribe intensive physical therapy, and maybe some Neurontin and Elavil or a TENS unit. And it works for a lot of kids, and it works well with no invasive procedures.

So I've established that their treatment works. It works generally for kids and not for adults. And the reason is that kids have something adults don't have, which really works in their favor: neuroplasticity.

Basically, a younger nervous system is more able to rewire and retrain itself than an older one. Some of this ability lasts into young adulthood (mid- to late 20s). It means that the malfunctioning nervous system is more readily responsive to therapies that will retrain it. After the age of 30, things are much harder.

So, really this is a complex problem. These doctors are terrible and demeaning, but they get real results. That's because in addition to being demeaning, they use real treatments. It would make things so much simpler if they were either all bad or all good, but that's life, I guess.

I do have to say that despite my mostly in-tact sanity, being treated at a Children's Hospital did wonders for my RSD and horrors to my emotional state. I eventually recovered from the emotional part. The question is whether the sacrifice was worthwhile, and that's something each individual must answer for his or herself. Six years later, I'm still not sure.

From one Mom to another
 

Hi Heather...

I have sent you a PM so I hope you get it.

I must tell you I have visited so many sites, including parent only sites, and have found this to be the most valuable, uplifting, caring spot to read and post. This group of people have given me hope, confidence and knowledge. I hope you find this too.

The most difficult thing as a parent for me, is that everything I have ever done for my child was to make things not hurt--a bandaid, a kiss, an ice pack, a hug. Most of the time this made it all better....with RSD, you can't do those things as easily and they don't make it better for the pain. That is hard. There are other things we CAN do to make it better, we just have to help each other find those things. The people here do that. They share ideas and thoughts on what to try next and maybe what not to try. They do give hope. They also rant and vent and express so many feelings that I have that I have no one else to say it to and by sharing feelings of grief and sadness, relieve my anxiety and give me stability. I know that sounds a bit odd, but for me there is comfort in knowing I am not the only stressed, worried and upset person because of RSD.

Life has changed for you and we are here to help and we know through your process, you will help us.

I look forward to talking to you-
Katherine

Hang in there
 

Heather,

Don't think of your daughter's situation as a battle that you can win or lose. Instead, think of it as a marathon that must be run one step at a time. She will need to draw from your strength and resolve. Therefore it is important that you remain hopeful. RSD is a condition that come with ups and downs; highs and lows; good days and bad days.

All of the comments posted should give you a good sense of what a loving and caring place this forum is. There is a wealth of knowledge and information here - please draw from it.

Above all it is of the utmost importance that you get her competent treatment by physicians experienced with RSD patients. Trust but verify.

I will remember you all in prayer.

:cool: EJ

RSDmom, I sent you a PM. I've never sent one before, so I hope it went through!

I am sorry to hear about your daughter I am 14 almost 15 and for the last 2 years almost i have been in a huge relapse of RND. It was really bad and at school they were pushing me in a wheel chair since otherwise it would take me forever to get to classes. Once i was 20 minutes late to a class that was just down the hall, so I know the feeling just whatever you do don't let her give up that the worst thing that could happen. As long as she keeps moving she'll eventually get through this remind her that. Tell her to stay strong.

My 14-year-old also has CRPS. She has been to both the Mayo (in Rochester, MN) and Cleveland clinic pediatric pain rehabilitation programs both have been helpful in helping her to regain some of her function and help her to deal more with the pain, but not have not done much to reduce her pain. Both programs are good and some kids seem to have great results with them while others have moderate or little results. They are both a little different: Mayo concentrates more heavily on education and coping skills, while Cleveland puts a little more emphasis on physical therapy. Just like what has been said by others in the forum, different things work for different people and it's hard to guess what the "perfect" solution is for any individual. You can private message me if you'd like to talk more.

I have talked to people who have had great results with both the Boston and Philadelphia programs. One thing that multiple providers have told me is that from their clinical experience, pain often does not go down significantly until a child returns to full function. My daughter has not been able to do this, and I wonder if this has something to do with the lack of relief. This would be one argument for the highly aggressive therapy that they offer at Philadelphia, however as InHisHands mentioned, it doesn't work for everyone.

Here is a link to a list of pediatric pain management programs. All have slightly different offerings; one might or might not be useful for your daughter. http://www.americanpainsociety.org/u...d-09-14-12.pdf

Best wishes. I'm sorry that your daughter and family are going through this.

Lori

I am so sorry to hear about your daughter going through this! Get her in to a Pain Psychologist!!! It can help immensely with the emotional strain, and give some hope and confidence back t her!!! Look it up in you area, it has helped me tremendously!! We do hypnotherapy, heart-math and biofeedback.

Pain psychologist/emotional component to CRPS
 

I also think it's a good idea to get her to a pain psychologist or health psychologist - if you can't find one of those specialties, any good psychologist or other certified counselor should also be helpful, but there are some unique issues with chronic illness/chronic pain that they will be more experienced in addressing. If you don't know where to start finding one, you can go to http://locator.apa.org/index.cfm?event=search.text and under "I'm looking for help with," choose "chronic illness," "pain management," or "health."

A number of folks have talked about whether or not there is a psychological trigger for CRPS. I've looked at a lot of research and I think there is some evidence on both sides of the argument, and I've come to the conclusion that it is not worthwhile to try to figure it out (which is pretty much the conclusion that my own daughter's pain psychologist said they she has reached). In the end, being in long term pain effects someone psychologically AND your psychological state effects your pain level. So the bottom line is that addressing psychological health should be part of an overall treatment plan. It really doesn't matter if emotional factors were part of the cause, the will inevitably be part of the problem (to a greater or lesser degree, depending on the person) once the disorder is developed and receiving support and learning coping skills will be helpful.

Also, here's a good book for parents of kids in pain: http://www.amazon.com/Conquering-You.../dp/0060570172. I found it very helpful.

Lori

RSD/CRPD therapy
 

I am a sports medicine chiropractor with 50 years in medicine,PT,chiropractic.

These two conditions RSD/CRPD as well as many orthopedic conditions causing pain need the combination of manipulation as well as soft tissue therapy. I would recommend a chiropractor who works with sports teams and has lots of experience in treating severe injuries.

If you can find a chiropractor who does extensive soft tissue therapy such as myofascial release technique, transverse friction massage and manipulation that should be enough to correct most people with this condition around 15 treatments maybe a little more for severe trauma like falling off a horse,motorcycle,bicycle. Very few people will be well in less than 15 treatments.

If you can't find a chiropractor who can relieve your pain find any sports medicine massage therapist, PT. who does myofacial therapy.

The key word here is very skilled manipulation (not a part timer) and a therapist who does exclusively myofascial. **