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 She is becoming very withdrawn and sad.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.

hugs to your family

Heather,I am so very sorry, I wish you and your daughter the best.

I can totally understand why your daughter is sad and withdrawn. I didn't get rsd until I was 30, and even as an adult I found it quite difficult to be my normal self. About the only thing I can say is that eventually, she'll come to terms with it. The pain doesn't always get better, but her ability to cope with it will.

Until she sees the pain dr.s, there are a few things you can do to help her feel better. They may seem silly and minor, but they DO help.

First off, hot soaky baths. A lot of people here use Epsom salts. There are also several types of "aches and pains" bath oils that help me a lot. Village Naturals has a good one that I use regularly. It is available at Wal-Mart, and it's reasonably priced. You only add 1/3 a cup, so a bottle goes pretty far.

Second, I find a heating pad to be very helpful. My rsd is in both legs and still spreading, so I have to pick and choose which area I want to cover with the pad, lol.

Third, try things like aromatherapy, massage, etc. Certain scents make people feel better, brighten their mood. Lavender is relaxing, will help her sleep and also remain calm when the pain levels get too high. Sage bundles are very helpful if the mood has turned sad, or if there is an oppressive pall over the house. I also use orange blossom or green tea scents... not sure what they are supposed to help with, I just know the smell makes me feel better, lol.

Also, try asking the Dr. she has been seeing up to now if he/she can prescribe LidoDerm patches. I don't know what part of your daughter's body is affected, or if it's full-body rsd... but use the patches on the worst areas. They are non-addictive, of course, so they can be used frequently.

Mainly, she needs her support system back. A teenager cut off from her friends is a sad thing. Even if she is attending school and seeing them there, it's not the same. She has to remain strong at school, can't be seen as weak, wandering around crying and being pitiful. I think we all know just how cruel teens can be, picking off the weaker ones like a lion culling a herd of wildebeests. Call the parents if need be, or ask the kids directly... but having her friends come over and cry with her, laugh and joke with her, might be the best medicine of all.

Hugs for you both (being a mom who is helpless in such a situation is a very hard thing to cope with, make sure you take care of yourself, too)

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!

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.


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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

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!