Re: I'm New Here Welcome Cindy!!!

[Guest guest]

Cindy,

First I would like to introduce myself. My name is Dawn and I am 40 and live in a small town in upstate New York. You will find that this group is amazing and can answer most of the questions that you have, but please keep in mind that none of us our doctors and we will all give you our own personnel opinions! The group has helped me tremendously and I have had RSD for a little over two years now and was also diagnosed with MS in Feb. of this year! One thing that you will quickly learn about me is that I love to write novels, so please forgive me already!

I would like to tell you that there is a girl by the name of Ginny that is part of this group and she also has RSD and Ehlers Danlos Syndrome. She may be a very big help to you and your son and I am sure that she will write to you soon!

As far as you not knowing if your son has RSD or not, let me tell you a few things that I have learned since being diagnosed! I have RSD in my right knee. I got it after having surgery on that knee for reconstruction of my ACL and also small meniscal tear. Also had another meniscal tear soon after the first surgery, so had to go back for second surgery.

It took my orthapedic doctor eight months to diagnose me with RSD and he really was not the one to diagnose me it was a friend of his. (another orthapedic he practiced with) The problem with diagnosing me was that my doctor only had one other patient with RSD and it was in the upper extremities! I also had none of the usual signs that people with RSD get! After my doctor did a lot of research on it, he discovered that the symptoms that come with upper body RSD, do not in fact come with the lower extremities!!! In fact sometimes the only symptom you can have for the lower extremitie is Severe Pain!!! This is all I had in the beginning with the exception of having sensitivity on the inside of my right knee. Having it touch a sheet of blanket can sometimes drive me crazy. So as you now can see, you do not need to have all these other symptoms to have RSD. Sometimes it is just severe, severe pain! This is what I have and can completely

understand what you are going through with your son and the doctors right now! Be aware it is very hard to find good doctors that are willing to help those of us with RSD and it sounds like your son is blessed with some of his doctors. If two doctors already believe that this is what is causing the pain, then it really does make sense to me and would talk to them more about it, but just wanted you to be aware that I also do not have swelling, color changes or burning, even though when the pain is very, very bad may get a little burning! It does sound to me that this is what he has and if he ever wants to talk, we will all be there for him!

Take Care and Best Wishes Always! Welcome to the Group and know that I will always be here for the both of you! LOL

Dawn

cindy wrote:

Hello all, I'm new here and sure could use some help and information. I have a 17 year old son that has been in horrible pain for 3 years now. He has Ehlers Danlos Syndrome (EDS) and Chiari. But these two DX do not explain his extreme pain. His Right knee has hurt terribly. It has kept him in bed for 3 years. He had been a high school athlete, and good student, then one day, for no reason the R knee pain began. Nothing has been found wrong with the knee. He is on high dose narcotics, which barely take the edge off the pain. 2 Doctors have recently said they believe he has RSD. From what I have read on it, I'm not sure I agree. His pain is not burning, the joint does not swell, it is cool to the touch at all times, The skin can be touched, but a gentle examination is

painful. The pain follows an exact crescent shape line on the outside of the knee cap. It is there 24 hours aday. The rest of his body is a bit sensitive to touch. I'm a massage therapist and I can no longer give him massages, but he can be touched gently without pain. Does this sound like it could be RSD? He has an electric wheel chair now in hopes that he can attend school. But his sleep issues and exhaustion, memory problems, and feeling like caca , has stopped him from attending for 3 years now. Some of these things sound like it could be RSD, but some don't. Plus many of these symptoms can be attributed to his Ehlers Danlos Syndrome. An implant has been talked about to help stop this pain, but that seems so drastic, permanent. But all these narcotics can't be good for him either. I could really use so help trying to make since out of all this. Thanks,

Cindy

[Guest guest]

Thank you Dawn and Donna for the warm welcome. I look forward to getting to know you all and learning from you. :~)

Huggs,

Cindy

Re: I'm New Here Welcome Cindy!!!

Cindy,

First I would like to introduce myself. My name is Dawn and I am 40 and live in a small town in upstate New York. You will find that this group is amazing and can answer most of the questions that you have, but please keep in mind that none of us our doctors and we will all give you our own personnel opinions! The group has helped me tremendously and I have had RSD for a little over two years now and was also diagnosed with MS in Feb. of this year! One thing that you will quickly learn about me is that I love to write novels, so please forgive me already!

I would like to tell you that there is a girl by the name of Ginny that is part of this group and she also has RSD and Ehlers Danlos Syndrome. She may be a very big help to you and your son and I am sure that she will write to you soon!

As far as you not knowing if your son has RSD or not, let me tell you a few things that I have learned since being diagnosed! I have RSD in my right knee. I got it after having surgery on that knee for reconstruction of my ACL and also small meniscal tear. Also had another meniscal tear soon after the first surgery, so had to go back for second surgery.

It took my orthapedic doctor eight months to diagnose me with RSD and he really was not the one to diagnose me it was a friend of his. (another orthapedic he practiced with) The problem with diagnosing me was that my doctor only had one other patient with RSD and it was in the upper extremities! I also had none of the usual signs that people with RSD get! After my doctor did a lot of research on it, he discovered that the symptoms that come with upper body RSD, do not in fact come with the lower extremities!!! In fact sometimes the only symptom you can have for the lower extremitie is Severe Pain!!! This is all I had in the beginning with the exception of having sensitivity on the inside of my right knee. Having it touch a sheet of blanket can sometimes drive me crazy. So as you now can see, you do not need to have all these other symptoms to have RSD. Sometimes it is just severe, severe pain! This is what I have and can completely understand what you are going through with your son and the doctors right now! Be aware it is very hard to find good doctors that are willing to help those of us with RSD and it sounds like your son is blessed with some of his doctors. If two doctors already believe that this is what is causing the pain, then it really does make sense to me and would talk to them more about it, but just wanted you to be aware that I also do not have swelling, color changes or burning, even though when the pain is very, very bad may get a little burning! It does sound to me that this is what he has and if he ever wants to talk, we will all be there for him!

Take Care and Best Wishes Always! Welcome to the Group and know that I will always be here for the both of you! LOL

Dawn

cindy wrote:

Hello all, I'm new here and sure could use some help and information. I have a 17 year old son that has been in horrible pain for 3 years now. He has Ehlers Danlos Syndrome (EDS) and Chiari. But these two DX do not explain his extreme pain. His Right knee has hurt terribly. It has kept him in bed for 3 years. He had been a high school athlete, and good student, then one day, for no reason the R knee pain began. Nothing has been found wrong with the knee. He is on high dose narcotics, which barely take the edge off the pain. 2 Doctors have recently said they believe he has RSD. From what I have read on it, I'm not sure I agree. His pain is not burning, the joint does not swell, it is cool to the touch at all times, The skin can be touched, but a gentle examination is painful. The pain follows an exact crescent shape line on the outside of the knee cap. It is there 24 hours aday. The rest of his body is a bit sensitive to touch. I'm a massage therapist and I can no longer give him massages, but he can be touched gently without pain. Does this sound like it could be RSD? He has an electric wheel chair now in hopes that he can attend school. But his sleep issues and exhaustion, memory problems, and feeling like caca , has stopped him from attending for 3 years now. Some of these things sound like it could be RSD, but some don't. Plus many of these symptoms can be attributed to his Ehlers Danlos Syndrome. An implant has been talked about to help stop this pain, but that seems so drastic, permanent. But all these narcotics can't be good for him either. I could really use so help trying to make since out of all this. Thanks, Cindy