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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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Pelvic RSD

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Old 06-27-2012, 11:06 AM #11
Annie Poo Annie Poo is offline
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Default my experience with CRPS II and pelvic pain
I've had CRPS type II for seven years after a venipuncture nerve injury. Although it's not improving, it's not getting worse either. I'm on gapapentin and Cymbalta, and with meds, biofeedback, exercise, keeping warm, etc., it's generally under control and I can work and mostly function well (although I get fatigued way more easily -- never used to nap). I consider myself to be one of the lucky ones, and mentally am able to deal with it much better. The first three years were really rough and now the symptoms, weight gain, fatigue, etc. are just part of everyday life for me.

In my case, symptoms spread to upper quadrant of body (overnight) after 10 months, then to entire right side of body (overnight) after 2 years. Strongest symptoms are generally in limbs and head, and not as much on torso/back. However, during flareups I definitely have symptoms (burning mostly) in groin areas. Usually only exterior, but sometimes vaginal discomfort also. It's easy in my case to tell that it's CRPS-related because it's only on one side.

Good luck!
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Old 06-30-2012, 07:02 PM #12
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Default Dr harbut contact info
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Originally Posted by 6kiddos View Post
The only one doing ketamine in AZ that I know of is Dr. Harbut in Tuscon. He does not take ins. for the ketamine. At least that was when I spoke with him last fall.
I can not find contact info for dr harbut. Also is he a neurologist?
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Old 06-30-2012, 07:10 PM #13
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Default Pelvic rsd
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Originally Posted by belichkah View Post
New to this group and am wondering if anyone else has Pelvic RSD? I know it is most common in limbs, but I hear I'm not the only one with pelvic rsd. I would LOVE to know how other women cope with this and get some support from.

In 2006 I had an appendectomy that left me with extreme pelvic pain, it was first thought to be a bladder problem [I.C] but that was not the case, after laying in bed on extreme amounts of pain killers for two years, not able to move and absolutely no quality of life, I had the spinal cord stim put in. Although this has given me quality of life, I'm able to go to school and almost function like a normal person, my life still revolves around my pain and my "good" days vs. "bad" days. Id LOVE to meet someone else who also has pelvic rsd, what treatments have worked for you? Opinions on the controversial ketamine treatments? If theres another woman out there with pelvic rsd what have you been told about bearing children?
Can u please point me in direction of pelvic rsd doc.
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Old 07-01-2012, 02:10 AM #14
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Quote:
Originally Posted by betsykk View Post
I have read about it and I know there is a doctor in Arizona that specializes in ketamine treatment for women with pelvic RSD. Barby Ingle at the Power of Pain Foundation told me about him but I do not know his name. You might want to contact her if you are anywhere near Az.
do you yourself have pelvic rsd? I would love to know more about your struggle with it if that is the case i have not met anyone else with pelvic rsd
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Old 07-01-2012, 07:21 AM #15
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Default Pelvic crps
[QUOTE=alt1268;892014]AZ - Dr. Siwek , Dr. Turley will only see you for booster

Are these the physicians who treat pelvic rsd?
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Old 07-01-2012, 07:24 AM #16
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Default Pelvic rsd
Quote:
Originally Posted by betsykk View Post
I have read about it and I know there is a doctor in Arizona that specializes in ketamine treatment for women with pelvic RSD. Barby Ingle at the Power of Pain Foundation told me about him but I do not know his name. You might want to contact her if you are anywhere near Az.
I've tried to find and reach b ingle...... Do you know of physicians who specialize in full body yet 95% pelvic/ab rsd......
Thank u for clearing this up
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Old 07-01-2012, 07:33 AM #17
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Originally Posted by 6kiddos View Post
The only one doing ketamine in AZ that I know of is Dr. Harbut in Tuscon. He does not take ins. for the ketamine. At least that was when I spoke with him last fall.
Looking for dr harbut contact info-had many leads yet no luck finding a correct contact number. Can u help?
Also still looking for physician for pelvic/full body rsd?
Any info?
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Old 07-15-2012, 11:12 AM #18
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Default Pelvic rsd
Quote:
Originally Posted by Lovelife View Post
Can u please point me in direction of pelvic rsd doc.
dear bel....
Have u found any help? I too am searching for help with pelvic crps
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Old 07-15-2012, 04:59 PM #19
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Default
Check out the ketamine Klub for CRPS/RSD on FB. There is a doctors list.

The best of luck to you.

sandy

Quote:
Originally Posted by Lovelife View Post
dear bel....
Have u found any help? I too am searching for help with pelvic crps
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Old 07-15-2012, 06:32 PM #20
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Heart Pelvic rsd
[QUOTE=belichkah;893283]do you yourself have pelvic rsd? I would love to know more about your struggle with it if that is the case i have not met anyone else with pelvic rsd[/QUOTrecurs

Yes I have had pelvic perianal vaginal rectal rsd for five years.
Spread to digestive system. Now full body. Just finally diagnoised. I can not even use the bathroom all is closing up descending swollen atrophied tight prolapsing....on top of all my other issues.

Please...I am confused as to who helps patients with pelvic crps. I am in big trouble. Water burns. Using bathrom rips me apart... I am unable to stand wk sit it is horrid... My pelvis is twisted and hard as a rock.... As is the ret of me.

Please...could someone list doctors that help with pelvic crps. My perinum. Has descended below my **** opening which is prolapsing with painful tissue swelling all my tissues are hard and red and shrinking and do painful.


Everyone is speaking if doctors in az? Could anyone please assist me with finding a crps pelvic perianal specialist. I've been searching and calling to no avail

Anyone can pm me and we can talk-even by phone
Love to all
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