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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)

Can CRPS start in atypical places?

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Old 07-04-2019, 08:32 AM   #1
mary jane
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Default Can CRPS start in atypical places?

Hi Everyone

I have had nerve pain on and off since 2013.
One day in 2013 I woke up with a small cyst on my vulva which ruptured on its own and within 24 hours I had severe stabbing and aching pain. This pain spread slowly but each day I was getting worse. The scariest symptom for me was when I would see an OBGYN who would examine the skin on the vulva and every time someone pressed on the skin, inflammation immediately followed. Everyone told me I had vulvodynia, but my symptoms don't match it. I never get burning, only electric shocks, sensitivity, crawling under the skin.
It was so scary to have pain and visible inflammation that I developed nocturnal panick attacks.
I was lucky I started amitriptyline 3 weeks after onset, but it still progressed to sciatic and pudendal pain. I was lucky that after 3 years of 50 mg amitriptyline and 300 mg lyrica, I weaned off all drugs and was pain free. Normal sensation returned.
Sadly, it came back in 2017, only 1 year and a half into the remission. My medication, especially amitrptyline no longer works as well this time ... and am very worried.

Can CRPS start in the intimate area? And does anyone get visible inflammation after touching/compression ??

Thank you.

I live in UK btw
I have...vulval nerve pain
I take...50 mg Elavil/Ami, 150 mg LYRICA
+magnesium oxide (works for me)
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Old 07-11-2019, 05:09 PM   #2
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First off, have you seen a urogynecologist? They are often more equipped to deal with more complex female issues especially ones that are painful.

I am by no means giving you a medical diagnosis or medical advice. That being said, women's health issues are often multifactorial, especially when symptoms migrate over time. Women who have vulvar/perineal/rectal pain often have tight pelvic floor muscles as a result of trying to "protect" the painful area. Pelvic floor dysfunction can mimic many other diseases like IBS, hip pain, lower back pain, sciatic pain, sacral iliac dysfunction, etc. So can interstitial cystitis (though IC is not confined to females).

Find a practitioner that specializes in pelvic pain and/or pelvic floor dysfunction that can help you evaluate your symptoms. Pelvic floor PT can also be very helpful (but you would have to be referred by your GYN or URO-GYN). Be willing to travel to see a specialist.

While many of your symptoms overlap with CRPS symptoms, CRPS is a disease of exclusion. Everything else has to be ruled out first before a diagnosis of CRPS can be given.

Best wishes,
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Old 07-20-2019, 09:35 AM   #3
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Originally Posted by mary jane View Post
Can CRPS start in the intimate area? And does anyone get visible inflammation after touching/compression ??
Stranger things have happened!

I would get a second opinion if your doctor can't help you out. But I would go the typical route with the medication and doctors that you saw then - again.

Or have you done that already?
What did they say?
All the best, Marleen
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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inflammation, pain, skin, time, visible

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