Health Organization for Pudendal Education

Karyn,

I'm really sorry to hear that you're still dealing with burning nerve pain (but in your feet) despite your PN surgery. I hope you are managing to work okay. I also hope that you get to the bottom of the other sources of your pain. Thinking about you. You're a real trooper.

Thank you, Lernica!
I'm so excited and hopeful for you about your upcoming therapy! I'll be thinking of you!
Really, the PN decompression surgery DID address the PN pain! Yay!!!! And it WAS very difficult for me to realize that once that was removed, all of my other pain wouldn't disappear as well. Nothing but ignorance and silliness on my part. THEY'RE SEPARATE NERVES! The Pudendal Nerve is NOT the only nerve you can damage or entrap. As I was telling another wonderful HOPE community member, I needed to give myself a sufficient amount of time after the TG surgery to see what was what. That's part of the reason I'm not buying into the "nerve cross talk" as far as peripheral nerves are concerned.

Lernica wrote: I hope you are managing to work okay

Honestly, I'm struggling. This goes right back to my false sense of security with the lack of PN pain. I went back to work knowing I had the other neuropathies AND the boo-boo heels. My thought process was, Oh! This is all small potatoes compared to the PN pain and I can get by OK. I'll have the other issues addressed whenever! Not so much. Especially with the heel thing and added weight/pressure from standing for the majority of the day. People at work are fascinated by my stand/sit work station and keep asking me if it's helpful? I just smile tightly and say yes, it helps with the not sitting. But Lernica - NO! It's not helpful in the least with achilles tendons that feel like they're gonna snap at any time, the leg cramps and muscle spasms, and the excrutiating pain in the bottom of my heels! Sigh ....

Lernica wrote:You're a real trooper.

Thank you. I feel more like a real pooper!
Hugs,
Karyn

Oh Karyn,

I wish you could take another break from work until your pain is resolved. I am so glad that I was able to take another year on sick leave (after an initial six months post-hysterectomy). It has made all the difference in my ability to cope with the pain. I'm thinking of you and sending you hugs and warm wishes.

Yes I'm excited about my upcoming week of physiotherapy! I'll keep you all posted on how it goes.

All the best.

It is disheartening to read how many people suffer...but it is heartwarming to see how many are truly trying to help us to get better. THANKS to the moderators of this site - it is amazing !
I have the burning feet also... have been unable to sit for ten years. Ouch ! The information from other patients assures me that the two problems are connected .
A coccyxgectomy actually made me worse; really, really research that operation because it sure can't be undone.
Used to suffer unbearable RSD... to have the sensation of being burned alive from head to toe for 7 years almost was the end of me . Luckily, had a surgery no longer offered in the USA that cured the RSD even before leaving the operating room.
The main problem, after over 50 specialists , 20 hospital admissions ( nerve blocks,prolotherapy,etc)is the inability to sit. I think it IS PNE, am now on the path for a correct diagnosis....
Yes- still searching and never giving up hope

You poor thing, burning feet sounds miserable! I'm not sure if burning feet is one of the symptoms of fibromyalgia, but I did just want to let you know that I empathize with your struggle and I sincerely hope that you feel better soon!

Hi Karyn,
How awful to have such burning in your feet. Has anyone mentioned the possibility of RSD? I ask because I had severe burning and puffiness in both hands and fingers, aggravated by any use of them. They tended worsen as the day progressed and would be so bad at night I'd have to get up and cool them. My GP initially put the burning down to amitriptyline and advised me to discontinue it, which I did. The situation worsened. I was referred to a specialist who diagnosed RSD and urged neurontin or a resumption of amitriptyline.

Hi Stephanie!
I'm still working on the feet issue. I could be wrong, but I don't think it's RSD. I think the problem is coming from the sacral nerve roots or my legs. My heels definitely burn late afternoon/evenings, but that's secondary to the stabbing and the electric shocks. Also, this is pretty much restricted to my heels and not the whole foot. It appears I have tarsal tunnel; diagnosed by a Podiatrist who did a tibial nerve block. I have an appointment with an Orthopaedic person coming up in a couple of weeks and would like a second opinion. Standing all day at work is absolutely not helping ANYTHING (feet, legs, hips, etc ...).
Are the meds you're taking helping?
Warmest of regards,
Karyn

Karyn,

You know I have burning feet as well. Primarily in the toes and over the tops. I used to have a ton of pain in my arches (I have high arches) and heels. I only wear super supportive shoes (Danksos) and always wear shoes in the house. I think the pain in the heels was from constantly standing all the time. I was still working 12 hour+ shifts at the time and standing all that time was super hard on the fasica. I iced a lot, rolled my feet over a handweight, and wore supportive shoes, did lots of calf stretches (all treatment for plantar fasciitis) and stopped working. At least for now that part of my pain is a little better. (But now I'm dealing with crazy pain down the outsides of my calves and burning in my toes).

Have you ever looked at a "dermatone" map that shoes the pain referral of nerve roots? L4,L5,S1, and sometimes S2 are usually responsible for pain in the feet. S1 usually causes pain in the heel of the foot. That could be from SIJD (in my opinion) as well as nerve root compressions. Have you had a lumbar MRI to rule out radiculopathies?

It's my understanding that that is the way to diagnose nerve root compression, right? My lumbar MRI is normal so I don't think my feet/leg pain is from nerve roots, but rather from SIJD/nerve cross talk. I do believe people can have burning in their feet as a sign of PNE because of the referral of S2 into the foot and cross-talk b/w nerves(just my opinion).

Hi, I am new here, sorry to bring up this thread again. Ever since I accidentally fell down and hit my rear, my feet begins to bother me for more than a year. I have exactly the same problem, sometimes PN issue(very slight), but mostly is my burning feet, especially in the toes. I had MRI to rule out possible lumbar factor, and i did physical therapy, went to chiropractor, had PPP injections on my hips, but nothing seemed to help! At first, i think it was SI joint dysfunction, but PPP didn't really work. Some doctors suspect its piriformis syndrome, but my therapist said I am not, since all tests are negative, and it should have been cured if enough stretching. I have been really desperate to find the answer. Since I live outside US, there is not much i can do on PN (very limited info in my country). And based on my research, there seems no exercise to help on PN( stretching even worsen the pain!?) OK, I may be naive, but did anyone do something to self cure this issue? especially the feet pain. Thank you.

Han

My piriformis spasm on the right side caused sciatica and numbness in my right foot. It didn't go away until after I had PNE surgery and the pelvic pain calmed down. I still have some piriformis syndrome on the left side if I do the wrong activities. It's related to a bad SI joint on the left and I get numbness down my left leg. I don't know if you have access to a TENS unit. For me it helps calm tension in the piriformis muscle. Stretching can help if it's not PNE but I only get slight relief from stretching the piriformis. The TENS unit helps more. Have you tried a ganglion impar block?

Violet