New PNE in AZ

[Violet M]

Hi Jim,

Can you see Loretta, the PT who works with Hibner, to see if she could help you sort this out? I think you said PT helped you before, right? When I had severe inner thigh burning it was due partly to tension in the obturator internus (due to PNE) but I didn't have skin problems so I'm not sure what's going on in your case. For me a lot of the glute/buttock pain was due to the piriformis muscle being in spasm. Have you tried alternating ice/heat on these areas? Sometimes that can keep you from going insane and avoid the ER. I found a TENS unit to be really helpful for the piriformis muscle and the obturator internus but that was only after PNE surgery that it helped.

Do you actually have open wounds on the skin or redness on the inner thighs?

Violet

[biff0101]

I actually had chafing on the inner thighs at the same exact place which I protected to heal. Also I had what looked like a rash on the back of my inner thighs which caused so much pain. Otherwise it is just skin sensations that feel like burning and chaffing right below the scrotum. Also I get pain in the crease leading down to the perenium. When I walk, the rubbing just kills me. So I limit walking and sitting. I am basically in a no win situation. I am at my wits end on all of this. I am trying acupuncture and got a massage last night. That might have been a mistake since she dug into my gluts real hard. Now I am feeling that pain. Oh my what to do. In your opinion do you think all of this is PNE related?

Jim

[Violet M]

It's hard to say, Jim. The skin of the perineal area is innervated by the PN and I know other people have had red/chafing skin that they attribute to PN but there are so many things that can cause rashes. Have you seen a dermatologist for this? If there's burning but no rash or redness, then you have to think of possible neuropathy. So maybe seeing a dermatologist for the redness and chafing could rule out any skin diseases, and seeing the PT for the buttock/glute pain could help you sort out which muscles/nerves are involved.

Violet

[rainyday]

Let me know if the low-oxalate diet theory is OK to discuss here, Violet. When I hear Biff talking about excruciating rashes and rawness in the seams I think of the things I hear people say when they feel they have an oxalate issue - the things in the oxalate newsletters. I know a lot of people don't put too much stock into it but I find I'm in far less pain on the diet than off. Something to think about or look into if Biff wanted to PM me, unless it's ok to discuss here? Just a thought, since Biff seems to be suffering a lot.

Lily

[Violet M]

Sure, Lily. Any suggestions that work for you are welcome here. I don't know much about the low oxalate diet. If it worked for you I would be interested to hear more about it if you want to start a new thread on that subject.

Violet

[biff0101]

Update to my situation. I conferred with my primary care (PCM) advisor this morning and decided to up my intake of gabapentin to 1800 a day. Also gave me some baclofyn muscle relaxers for sleep. My TMJ doctor also put in order for a numbing cream from a compound apothecary. I am currently sitting on ice packs which seem to help some. Also I conferred with a noted neurologist and he said my problem was the posterior femoral cutaneous nerves were inflamed or entrapped causing my issues. My PCM also put in referrals to see a pelvic pain specialist and a PT. Thanks for all of your support and we will see where this goes.

thanks
Jim aka Biff

[biff0101]

Lily, I sent you a PM

[Violet M]

Hope this plan of action helps you, Jim.

Violet

[biff0101]

Well folks, things are not looking to good right now. Sitting is out of the question and I am stuck laying on the couch in a twisted position just to get some comfort with an ice pack also. Standing is ok and I am trying to do some glute stretches. I am going to see a PT some time soon an a neurologist also. Basically life sucks a the moment and the stress is having a very bad effect on my lovely wife. I dread going back to work on Monday since I cant sit and walking is not a joy since my inner thighs feel like they are getting shredded with every move. Sorry I am just venting here. I know I am just one of many who have this crap. Prayers and hope to all of you.

Regards
Jim

[Violet M]

Wow, sorry Jim. If it's any comfort, you will likely get better with the right treatments but in the meantime while you are waiting it can be pretty tough. Just wanted you to know I feel your pain.

Violet