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

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

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!!:hug:

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!!!!:hug:

Alison.

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.

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

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

Welcome
 

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

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

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.....

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

I use the compound you are looking for
 

Hi, i've never posted here before but I saw your post and even though it has been a few months i felt compelled to reply. I am in the Tampa area in Florida and my doctor has a compounding pharmacy make the liquid you are looking for. It is called "speed9/ketamine" by the pharmacy. It is a gel type yellowish liquid that is externally applied. It contains multiple medications like flexeril, ketamine, anti inflammatories, lidocaine, some kind of "speed" thing ,etc. It works wonderful and I have never had any kind of side effect. I take medication and I prefer to avoid having to take the pills if I can so I love the compound gel because it is usually enough to keep me from having to take a pill. Best of all there is no mind altering effect from it ( i dislike the way many medications cause a variety of mental and emotional side effects). The pharmacy I use mails my medicine to me even though they are only 30 mins or so away because I can't sit in the car and deal with a 1 hr round trip just to get the med. It is VERY inexpensive as well- my insurance wanted me to pay 135$ but the pharmacy charges me their price of 35$. If you'd like to have your doctor see if they can talk with the pharmacy and have your med mailed to you it is called Promise Pharmacy and located on US HWY 19 in Palm Harbor. They are really nice helpful people there- WAY better experience then when I use drugstores like CVS and walmart that have horrible patient treatment. Anyways I hope it helps you, I'm fortunate to be in the Tampa area there are a lot of drs doing some good work on RSD and I feel blessed to have such great ones that care so much.

stellate ganglion blocks
 

Dear Jonee -

While not directly responsive to your question re abdominal RSD, I am concerned that you understand there is only a very narrow window in which the most effective treatment for acute (fresh) cases of RSD/CRPS may be effective in all together knocking the disease into permanent remission. That said, in at least partial response to your question, please be aware that organ may be significantly affected by changes in sympathetic nerve activation to the area in question, without there being any direct involvement of RSD/CRPS in the organ system itself.*

Among all of the treatments widely available in the United States today, by far and away the best odds for knocking out a fresh case of RSD/CRPS in the arm or hand lies in a Stellate Ganglion Block, a procedure in which under fluoroscopy a large amount of a local anesthetic (with or without a supplemental steroid) is injected by a pain specialist or an interventional radiologist at the top of the back, approximately where the cervical and thoracic spines transition; and for children the procedure would almost certainly be done under mild sedation. But there, time is absolutely of the essence. See, Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome, Ackerman WE, Zhang JM, South Med J. 2006; 99:1084-1088, FULL TEXT @ http://www.rsds.org/2/library/articl...lion_block.pdf:

Abstract
INTRODUCTION: The purpose of this study was to examine the efficacy of stellate ganglion blockade (SGB) in patients with complex regional pain syndromes (CRPS I) of their hands.

METHODS: After IRB approval and patient informed consent, 25 subjects, with a clinical diagnosis of CRPS I of one hand as defined by the International Association for the Study of Pain (IASP) criteria, had three SGB's performed at weekly intervals. Laser Doppler fluxmetric hand perfusion studies were performed on the normal and CRPS I hands pre- and post-SGB therapy. No patient was included in this study if they used tobacco products or any medication or substance that could affect sympathetic function. The appropriate parametric and nonparametric data analyses were performed and a p value <0.05 was used to reject the null hypothesis.

RESULTS: Symptom onset of CRPS I until the initiation of SGB therapy ranged between 3 to 34 weeks. Following the SGB series, patient pain relief was as follows: group I, 10/25 (40%) had complete symptom relief; group II, 9/25 (36%) had partial relief and group III, 6/25 (24%) had no relief. The duration of symptoms until SGB therapy was: group I, 4.6 +/- 1.8 weeks, group II, 11.9 +/- 1.6 weeks and group III, 35.8 +/- 27 weeks. Compared with the normal control hand, the skin perfusion in the CRPS I affected hand was greater in group I and decreased in groups II and III.

DISCUSSION: The results of our study demonstrate that an inverse relationship exists between hand perfusion and the duration of symptoms of CRPS I. On the other hand, a positive correlation exists between SGB efficacy and how soon SGB therapy is initiated. A duration of symptoms greater than 16 weeks before the initial SGB and/or a decrease in skin perfusion of 22% between the normal and affected hands adversely affects the efficacy of SGB therapy. [Emphasis added.]

PMID: 17100029 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17100029

See, also, Complex regional pain syndrome type I: efficacy of stellate ganglion blockade, Istemi Yucel, Yavuz Demiraran, Kutay Ozturan, Erdem Degirmenci, J Orthopaed Traumatol (2009) 10:179–183, FULL TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...Article_71.pdf

Hopefully, all of this will come as old news to you, but if not, your daughter could use a new pain specialist ASAP. Let us know if that's the case, there are lots of resources that can be sent your way.

take care,
Mike


* By example, you could take a look at the authorities cited in my posts nos. 4 & 6 in the Heart Problems thread http://neurotalk.psychcentral.com/thread132789.html, where I restated and expanded on a something I was reminded of by SandyS last month in Vasovagal (Reflex) Syncope and RSD http://neurotalk.psychcentral.com/thread129261.html.

Hi onmyjourney, I can't thank you enough for this information. I see my Dr. next week . If you could tell me your Drs. name-I assume he owns the pharmacy, I will call him and make arrangements for a conference call between him and my Dr. And order the compounding cream.
I know you are in a good area for good Drs. treatment etc. I don't have insurance any more, so the lower price sounds good. I already take 2 high blood pressure meds, one pain med, one anti-anxiety med, one anti-depressant, and one sleep med. My Dr.. is conservative- For 15 years and now full body and internally, I have actually gone down on pain meds.
What kind of treatment have you had?
Thank you ahead of time for the Dr-pharmacist's name. Your friend, loretta with soft hugs:grouphug:

Hi i am new as well. not sure how to do this or even if this well go through. i have been dealing with sjogren's and a huge pain and abnormal distention of my abdomine. the pain is horrible and the distention looks as if i was 7mos pregn. i have been in and out of the hospital 5 years for weeks at a time. sjogrens is an auto. like lupis. but did not explain my stomach pain and distention. i was just dio, with /RSD of the stomach any info on this would be great. what has worked for me and the only thing that works or blocks
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