DD(13) diagnosed with RSD/CRPS

[Desnik]

My DD(13) has finally gotten diagnosed after 2 years of pain from an injury to her ankle/foot. She has been diagnosed with RSD and I was wondering if anyone here has it and can offer any advice, info, or books or websites with good info? I am very sad for her. I wish she didn't have to go through this but am happy to finally have a diagnosis.

She has pain, weakness, numbness, burning etc but the area also has discoloration. When it swells up it will turn blue/grey. The area is sensitive to touch and she can't even put all her weight on it. She basically can't stand on that one foot. She feels like it is asleep with pins and needles and the pain is constant. Sometimes it isn't as bad as other times but the pain is always there. She has seen a bunch of specialist, had every test, physical therapy and now they put her on a very low dose of Cymbalta. Then we will follow that up with exercises to strengthen her foot.

I just took her shopping at the mall and we had to leave because of her pain. She just can't walk for long periods of time. As her mother I wish I can take away her pain. Hopefully we will be able to manage it but I have so many fears for her. I am fearful it will spread or that the medication won't help.

Thanks for listening, I just don't know where to turn to for advice and support.

 

[peemagg]

I also have RSD in my foot. I agree it is not a nice thing to have. I have had it now for three years.

I don't know what type of things that she has had done as far as physical therapy, but what ever you do DO NOT allow them to do either hot/cold treatment therapy on her or put ice on it. Cold is one of the Worst things for it. It will cause the myelin sheath on the nerves to withdraw more, not repair itself as was once thought and is quite often still the frame of mind of many not fully educated in the disease.

I used a cane to take the pressure off of the foot when it first started. It is one of those diseases that you do need to use it or lose it, but it isn't one where no pain, no gain helps it. I came to find that the cane didn't remove enough pain, so now I use forearm crutches. They are much easier on my body then regular crutches are. When I am going distances longer than even my arms can take, I use a mobility scooter or wheelchair. Also an idea to help her (and you) with the thought of using these tools, is to have her figure out what she can do without the crutches, cane or wheels, and how much more that she can do if she uses them. I look at them all as a way for more freedom and less pain for me. I could not even go out to the mailbox without one of my tools.

There are a lot of good sites out there about RSD.

Tell your daughter to hang in there. It can get better (maybe not perfect, but better) with the right treatment.

I am on 60 mg of Cymbalta and probably need it upped, and have PT twice a week. With the PT they worked on desensitizing the area so that now I can stand them to touch and handle my foot without going through the roof. The only thing now that will cause me a great deal of pain is cold and ice. I also have epidural pain shots in my back every few months to help.

WWW.RSDRX.com is one of the best sites out there. It is put out by a Dr specializing in Rsd. He was the one who came to the opinion about the cold and through trial tests, found that what he suspected was true.

Hang in there. This is not a end all type of disease and can be made to be manageable with the right care.

 

[J'aime Paris]

My DD(13) has finally gotten diagnosed after 2 years of pain from an injury to her ankle/foot. She has been diagnosed with RSD and I was wondering if anyone here has it and can offer any advice, info, or books or websites with good info? I am very sad for her. I wish she didn't have to go through this but am happy to finally have a diagnosis.

She has pain, weakness, numbness, burning etc but the area also has discoloration. When it swells up it will turn blue/grey. The area is sensitive to touch and she can't even put all her weight on it. She basically can't stand on that one foot. She feels like it is asleep with pins and needles and the pain is constant. Sometimes it isn't as bad as other times but the pain is always there. She has seen a bunch of specialist, had every test, physical therapy and now they put her on a very low dose of Cymbalta. Then we will follow that up with exercises to strengthen her foot.

I just took her shopping at the mall and we had to leave because of her pain. She just can't walk for long periods of time. As her mother I wish I can take away her pain. Hopefully we will be able to manage it but I have so many fears for her. I am fearful it will spread or that the medication won't help.

Thanks for listening, I just don't know where to turn to for advice and support.

I feel so bad for what you're going through! Our life changed dramatically on Halloween night when my DD(12) injured her leg.

We were EXTREMELY lucky that an ortho at Children's Hospital recognized the early signs of RSD. With aggressive PT and many visits to the pain clinic, she is finally painfree. But I worry CONSTANTLY that the next time DD gets hurt, we will go down this road all over again...

Many hugs and prayers to your family!!!! It's so scary to see your child suffer so much.

 

[Desnik]

Thank you both for responding!
Right now they are holding off on the PT. They showed her a few stretches/exercises to do a couple of times a day everyday at home. She just started a few days ago with 20mg of Cymbalta. Her next appointment with the pain management specialist is in 2 weeks. They wanted to give the meds time to kick in and see how she feels. She had been out of gym class for the past 2 months and they wanted her to try it again restricting sports like soccer, tennis, etc. She tried today to play, they were playing kick ball but did some running first to warm up. By the time she ran around for a few minuets it was too much and she couldn't do the kick ball. Luckily the school is being fantastic and understanding and allowing her to do whatever she feels comfortable doing.
I just hope she gets some relief soon.

 

[Desnik]

DD has had some relief with the Cymbalta. She said it has kind of taken the edge off. She still has the numbness and feels as if her foot is "dead". We saw her Dr for a follow up and we both agreed not to increase her dosage of medication. She has some more excersises to do at home to help strengthen her ankle and we will go back to the Dr in 6 weeks. Her school has been wonderful and they have been able to schedule a meeting tomorrow morning to try and get a 504 plan in place for her for Sept. Hopefully it will get approved because it would really help her a lot. I have all my info and notes ready so I hope it goes smoothly.

 

[J'aime Paris]

DD has had some relief with the Cymbalta. She said it has kind of taken the edge off. She still has the numbness and feels as if her foot is "dead". We saw her Dr for a follow up and we both agreed not to increase her dosage of medication. She has some more excersises to do at home to help strengthen her ankle and we will go back to the Dr in 6 weeks. Her school has been wonderful and they have been able to schedule a meeting tomorrow morning to try and get a 504 plan in place for her for Sept. Hopefully it will get approved because it would really help her a lot. I have all my info and notes ready so I hope it goes smoothly.

I've kept your dd in my thoughts since your first post about her injury. I'm glad she's getting some relief. The school/district nurse should be involved if you are doing a 504. I found ours is a huge advocat for the kids, and keeps close watch on the staff to make sure they are following all accommodations.

Also, is your dd in middle school? The most difficulty our dd had was with a couple other girls. After being on crutches and out of gym for so long, a few girls started a "rumor" that my dd was faking her injury for attention. That was hurtful to dd, since her private pain was intense. I sincerely hope your dd does not have that added burden....

 

[Desnik]

I've kept your dd in my thoughts since your first post about her injury. I'm glad she's getting some relief. The school/district nurse should be involved if you are doing a 504. I found ours is a huge advocat for the kids, and keeps close watch on the staff to make sure they are following all accommodations.

Also, is your dd in middle school? The most difficulty our dd had was with a couple other girls. After being on crutches and out of gym for so long, a few girls started a "rumor" that my dd was faking her injury for attention. That was hurtful to dd, since her private pain was intense. I sincerely hope your dd does not have that added burden....

Thank you.
DD is 13 and going into the 8th grade. Luckily so far she hasn't had any problems and I am so sorry your DD had to go through that. sometimes kids can be so mean.

DD always says the biggest issue for her with RSD is that you can't see it(no limping or bandages or crutches) so how do you get people to believe your pain is real? It is so sad and my heart breaks for her. She has had a bad couple of days with the pain and I hate not knowing what to do to ease it for her.

 

[peemagg]

With mine the Cymbalta takes the edge off, but the thing that has given me the most relief is spinal injections, and just using something (a cane, or crutches) to take some of the pressure off of the foot.

The injections really help me for the most part for a couple of months at a time. During the time that the pain is reduced is when PT helps the most. One of the first things that was done for me at PT was not stretches, but desensitization therapy. This was something as simple as taking a tissue or piece of silk and gently rubbing on the area. When that gets to where it doesn't hurt so much, then we would go to something a bit rougher, and continue on like this, until the foot was more able to handle normal things like shoes and socks. You might want to start trying this at home now. At first it might be just enough for her to have something soft just brushing the skin, but as the area desensitizes, you can use more and more pressure. It may sound so simple, but it did really help me.

I wish you all good wishes with this really nasty and misunderstood disease, but don't give up. It may not be fully back to normal, but it can get to a manageable state with the right care.

 

[Desnik]

With mine the Cymbalta takes the edge off, but the thing that has given me the most relief is spinal injections, and just using something (a cane, or crutches) to take some of the pressure off of the foot.

The injections really help me for the most part for a couple of months at a time. During the time that the pain is reduced is when PT helps the most. One of the first things that was done for me at PT was not stretches, but desensitization therapy. This was something as simple as taking a tissue or piece of silk and gently rubbing on the area. When that gets to where it doesn't hurt so much, then we would go to something a bit rougher, and continue on like this, until the foot was more able to handle normal things like shoes and socks. You might want to start trying this at home now. At first it might be just enough for her to have something soft just brushing the skin, but as the area desensitizes, you can use more and more pressure. It may sound so simple, but it did really help me.

I wish you all good wishes with this really nasty and misunderstood disease, but don't give up. It may not be fully back to normal, but it can get to a manageable state with the right care.

Thank you so very much!
I will try what you suggested with the desensitizing.