Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-09-2009, 12:09 PM #1
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Default abdominal r.s.d.

Hi,
I am new here. My daughter was diagnosed last week with r.s.d. in her wrist. However I am starting to put the puzzel together and think that she is also suffering from it in her abdomine. If anyone has any info on this could you let me know.
Thanks,
Jonee
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Old 03-09-2009, 04:42 PM #2
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Hi Jonee,
I am new here also. I have never herd of that. I am going to a group meeting tonight, with Dr. Therapist ect... I will ask if anyone knows anything. I have read other posts about full body rsd and in the lungs so who knows, but I will ask tonight and let you know. Have a good day. Julie
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Old 03-09-2009, 05:07 PM #3
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Hello Jonee and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!

I am SO sorry to hear that your daughter has been diagnosed with RSD and I really hope she starts feeling better soon and can get some much-needed pain relief!!

I also have RSD. I have it in my left leg, right arm and possibly left arm also. I developed it when I was 12 years old after an ankle sprain and I am now 14. If I can help you or your daughter, please let me know - I am more than happy to do so if I can!!

I have heard from quite a few people that have RSD in their stomach area. I used to speak to a boy who had RSD in his stomach and was in lots of pain and went onto Dr Sherry's PT Program in Philledelphia and his RSD went into remission!! It doesn't seem that common for RSD to develop in the stomach but it is possible from what I have been told. Is your daughter on any pain medications at the moment??? If so, I would look up the side effects of some of the meds as some can cause stomach problems such as Irratable Bowl Syndrome etc - I know many drugs for me did. Don't just put everything down to RSD - I know that it usually is RSD most of the time unfortunately but it is really important that you rule other conditions out first that might be easy to be treated!!

Take care and please send your daughter my love and give her a pain-free hug from me! If you need anything, please know that I am here for you because I DO understand some of what you are going through!!!!

Alison.
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Old 03-09-2009, 05:10 PM #4
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Quote:
Originally Posted by jonee View Post
Hi,
I am new here. My daughter was diagnosed last week with r.s.d. in her wrist. However I am starting to put the puzzel together and think that she is also suffering from it in her abdomine. If anyone has any info on this could you let me know.
Thanks,
Jonee
Hi Jonee,
I am so very sorry to hear of your daughters recent diagnosis. My heart goes out to ANY person diagnosed with this disease, but particularly so when a child is involved. We have several sweet, wonderful children on this forum that I know will speak up and answer and help you and your daughter however they can.

I would encourage you to do a search on the forum on the topic of "abdominal RSD" to see if it brings up any hits. You should find the "search" option on the front page of the RSD/CRPS Community page. I hope that you find some information that may answer your questions as you wait for more members to log on and post their responses.

Please know that you will find many caring, compassionate people here that have various manifestations and symptoms of the disease, so you will find a wealth of information on our forum. Take care of yourself in the process as well. This is a stressful adjustment period for your whole family. Seek out plenty of support for everyone involved.

Best wishes to you and please keep us posted as you learn more information about your daughter's condition.
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Old 03-09-2009, 08:38 PM #5
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Hi---
I was recently diagnosed with RSD/CRPS in my abdomen/pelvis. Mine is a result from an injury to my nerves during pelvic/abdominal surgery this past summer. Appherently during my surgery, some of the nerves were irratated or damaged.....

I also might have CRPS in my legs, but that is still iffy as the neuro who diagnosed the abdominal/pelvic CRPS hasn't really been able to evaluate them yet and I am in the process of switching drs (not my choice--- I am moving to a different country).

Is your daughter recieving any sort of treatment ? I am recieving Botox injections, along with taking several medications that work for both my seizures & allodynia(I also have epilepsy & allodynia) and also help with the RSD/CRPS some what.

Good Luck and Hang in there !

L2L
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Old 03-09-2009, 08:40 PM #6
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i have rsd in stomach bladder kidneys bowels etc im sorry that your poor daughter is goin through this what kind of problems is she having

carrie
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rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




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Old 03-09-2009, 09:13 PM #7
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Quote:
Originally Posted by jonee View Post
Hi,
I am new here. My daughter was diagnosed last week with r.s.d. in her wrist. However I am starting to put the puzzel together and think that she is also suffering from it in her abdomine. If anyone has any info on this could you let me know.
Thanks,
Jonee
Hi Jonee,
Welcome!
I am truly sorry to hear that your daughter is suffering with RSD. I have full body RSD for 20 years in July. There an amazing mother on this forum with a young daughter with RSD in her abdomen. She has been on this path with her daughter for a while and I'm sure could be of great support and information for you. I will send her a PM and ask her to post or PM you. I hope you find all the answers you are looking for. Welcome and all the best. Di
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Old 03-10-2009, 01:37 PM #8
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Thanks to each of you. I am still finding my way on how to use this site so forgive me. I went back and did an exstended bio on my daughter that gives the full story on what has been going on. I hope that is where I am to put all the info for everyone. Again any help would mean so much.
Jonee
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Old 05-31-2010, 05:00 AM #9
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Default rsd

i heard that you can get RSD anywhere you have a nervous system. i have had rsd since 2001 but went into tremission and we just recently took out my stimulator know in 2010 and quess what the rsd has come back with a vengence in the back and stomcah know. i forgot what and how bad this felt.....
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Old 05-31-2010, 05:52 PM #10
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Quote:
Originally Posted by jonee View Post
Hi,
I am new here. My daughter was diagnosed last week with r.s.d. in her wrist. However I am starting to put the puzzel together and think that she is also suffering from it in her abdomine. If anyone has any info on this could you let me know.
Thanks,
Jonee
Hi Jonee, I am so very sorry for you and your daughter. I'm 62 and have RSD for 15 years now. I did have a couple remissions for a year or more in the beginning with PT. Now it is full body and internal. Abdomen and pelvic region. It is HOT to touch and internal fire-sweating skin. Very difficult to deal with. My gyn is looking for a compounding pharmacist to make up a cream to put on outside and inside. Others use it-ketamine, lidacaine . If you would like, when I get a prescription, I'll pass it on to you. There is a childrens wing for RSD at the Cleveland Clinic that some have been to. How old is your daughter? There are some young people-teenagers that have RSD and their mothers post here.
Please know how much we are-there is a lot of educated people here and always willing to share information, and be of encouragment. One of your new friends, loretta
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