Help! Atomic Wedgie sensation

[mjwrides]

I'm new to this site. I am 18 weeks post injury with an L1 injury. I'm currently Asia C and am still getting return. about 3 weeks ago I started experiencing what I can only describe as an Atomic Wedgie. It occurs every other day like clockwork and is getting more intense. I've been on Gabopentin which did nothing and am now on Baclofen. it is not doing anything either. it is debilitating. None of the doctors I have met with have ever heard of such a thing and I am at my wits end. Does anyone have any ideas?

[Crappler]

It sounds like a fun phantom pain.

[SCI-Nurse]

Most likely a type of saddle neuropathic pain. Phantom pain is a term reserved for amputation, and occurs from different causes (peripheral neuropathy) than central neuropathic pain which occurs in those with SCI/D.

Keep in mind that with chronic neuropathic pain that it is unlikely you will find a medication or treatment that makes it go away completely; the goal is to get the pain to a tolerable level you can live with.

Baclofen is for spasticity management. It does little or nothing for neuropathic pain. How much gabapentin were you on? Often doses as high as 4500 mg. daily are needed. Lyrica is also an option, and perhaps even Tegretol. Many people find some relief in medical marijuana...are you in a state where you can get this? TENS may also be worth a try.

(KLD)

[mjwrides]

i was on 900mg/day. The doctor didn't think it was neuropathic...I keep getting mixed information!

[SCI-Nurse]

Maybe nerve or muscle(s) are inflamed. Have you tried Ibuprofen 800 mg (up to 3 times a day) or Naproxen 500 mg ( Aleve OTC is 200 mg) max is twice a day? both need to be taken with food and one glass of water & no kidney issues.
Scan of abdomen/scrotum?


CWO

[Patrick Madsen]

you're only 18 weeks post injury. As you said; you're getting more and more return. For myself, I'd stay away from any pain or anti spasm medication as it may delay or hinder your recovery. This is just my opinion. It may be getting worse because you are becoming addicted to the medication and you're body is wanting more. Like Nurse KLD suggested, Ibruprofin etc. may help more.

[Jim]

Is it a burning type pain?

[Crappler]

When i was first injured I had a similar experience. For me I had this massive pain seemed to be shooting out of my... well, let's just call it my manhood, manhood. I can still that same sensation today when I think about.
Call it neuropathic pain, call it phantom pain, or call it just effed. It sounds like that's what it is.

[metronycguy]

i remember having this pain in my penis and anal area in the fire couple months from injury, I have a cauda equine injury l4/s1 thankfully it did go away however i remember the nerve /neuropathic pain in these areas. As KLD asked, what dose of gabapentin/lyrica are you Rx'd, 3600mg a day or more of gabapentin may be required before you get relief, lyrica may also help. plus anything KLD mentioned.
Pain medicine will not hinder your recovery, it may enable you to function normally and enable you to participate in PT to aid in your recovery

edit: update-a doctor just told me that new info shows that doses over 3600 a day of gabapentin are not absorbed by the body and it is just excreted. This makes sense to me, since i had been on about 4800 a day and went up to about 7200 a day and saw no difference in my pain, dropping down to 3600 a day now