Health Organization for Pudendal Education

New to the site and wondering if others have experienced burning and/or pins & needles outside the pelvic/sacral area from PN?

Specific to the above, mine started with heel pain and then spread to or came the addition of pins and needles of the inner thighs. Is this normal?

As my PN has gone untreated and my stress level has grown trying to hold down my full time job and take take care of my children as a single parent, I find I am having painful reactions to clothing on my arms & torso now and my face even sometimes hurts and I find I have goosebumps a lot. I barely sit, I barely sleep.

I have been to many, many specialists in the past 8 months here in Ohio and had a pelvic CT and 5 MRIs with no signifcant findings for my symptoms.

Any input would be appreciated.

I find this site amazing helpful. Thank you to those that initiated it and shared with the rest of us.

JRS

Hi All,

I wanted to bounch back on here and give a quick update. I went back to the doctor today and they suspect I am having an odd reaction to Topomax leading to many of the pins & needle symptoms outside the PN area. Going to try anti-depressant class once I get weaned off this since Neurotin did not agree with me either. I wanted to give the update in case anyone else ever experiences this.

Glad you posted back, once neuro wierdness gets above the pelvis I am lost so didn't want to mislead you with my derth of medical knowledge.
Have you had a pn diagnosis? I'm sure someone on here will be able to recommend someone in your area if not. (sorry , English)
Take care,
Helen

Hi JRS,

Neurontin gave me a pins and needles feeling outside the pelvic area so I can relate. I hope that your change in medications will be successful.

Just wanted to comment on the pins and needles feeling on the inner thighs. I had severe burning in that area but it was not due to the medication -- is was from the obturator internus muscles being in spasm. The pudendal nerve runs right next to those muscles so I think the PN being irritated caused those muscles to act up.

I have burning in my feet (not as bad since I got on higher levels of Neurontin) and sacral area. I also have myofascial muscle pains all over my body. Sometimes my hip bones hurt (like to lay on my sides). PN has affected my whole body to say the least. Hopefully your symptoms are just related to meds though.

Sorry to hear about your situation, JRS. I know it can't be fun to rarely sit or sleep. Any update on what your specialists have found? I know you're in Ohio, which isn't far from me. Have you looked into any doctors in indianapolis? I know at your stage, you're probably willing to try anything, so I just thought maybe I would suggest something like this. Unfortunately, I can't provide any input regarding your situation. I can only point you in the right direction. Good luck!

Has fibromyalgia been thrown out there as a cause of your symptoms? A sense of pain when putting on clothing is a symptom of this. Not sure about the goosebumps.
We'd love an update!

cari