Health Organization for Pudendal Education

Hello everyone,

Some may still remember me. It's been several years since I've been on the forum. By God's grace I have managed the pain pretty well (at maybe a 50-60% overall pain reduction) with the help of gabapentin, massage, and lifestyle modifications (not sitting too long, resting more frequently, etc). I've had occasionally flare-ups through the years, but nothing as bad as I am currently in. My pain has always been musculoskeletal (since I deal with SIJD and hypermobility) as well as nerve. When my pain first started I almost immediately had central sensitization with burning in my feet and legs. That has been mostly under control in recent years.

Unfortunately in January I entered into my biggest flare since I can remember. I'm not exactly sure what caused it. I had some increased pain around the holidays and then in early January I had a vaginal ultrasound (due to period changes) and a massage that did too much stretching of my sacral area I think. But it took a couple weeks after that before I was completely overcome by the pain. It's now been 4 weeks of being mostly housebound. I've started PT and am waiting on an appointment to pain management. My obgyn/pelvic pain doctor seems to think this is primarily hormonal related as I'm nearing peri-menopause. I am concerned that the gabapentin just isn't working anymore. I've taken it for 10 years (has anyone had that happen)? Interestingly the sacral/SIJ pain and PN pain are better than they were a few weeks ago, but I am having a central sensitization flare up with burning in my legs/feet and extreme sensitivity to cold. Even if my legs touch it can be bothersome and I'm hypersensitive to clothing. It doesn't help that we've had such a wet,rainy winter. Right now about the only time I have relief is in a warm bath. I''m beginning to think I am primarily dealing with CRPS.

I have tried to tell myself that I had improved greatly in recent years so surely I will get there again, but I am starting to wonder what else I can do. Just wanted to update everyone. Any help or advice is greatly appreciated.

Hi Faith,

Yes, I remember you. Whenever we don't hear from someone for awhile I always hope it's because they are doing well and have moved on. I'm glad you were able to have some better years but also sorry that you have returned with worse pain now.

Since you are having lower extremity pain as well as PN I think your assessment makes sense, that the sacral massage might have flared things up because it could have affected the nerves going to the legs and feet as well. I think you are on the right track with appointments for PT and pain management and therapies like warm baths to calm down the CNS. If conservative therapies aren't successful you might want to ask pain management for information on DRG neuromodulation and whether it might be appropriate for your situation. Some patients are having good success with it but I don't know if it would be right for you.

Violet

Hi Violet,

Thank you for your input. Since my last post I began having burning in my arms and major insomnia (which I've never experienced. For a week I only slept once every over night. My nervous system was definitely wound up and not responding to anything much. I finally saw pain management and he has put me on a taper on Klonopin which has thankfully allowed me to sleep again. The burning in my arms already seems to be gone and the burning in my legs is better, but still there. He said his next suggestion would be to consider a hypogastric plexus block to see if the pain is sympathetically driven as in CRPS. I don't respond well to invasive treatment and have always been leary of a spinal cord stimulator, which is what a DRG stimulator seems like, especially if I have pain in my arms or above my pelvis. I am also seeing a functional medicine doctor who wants me to try low dose naltrexone. I haven't started that yet as I wanted to first recover from the insomnia and see if the Klonopin is able to calm down my CNS some. He has also suggested switching me to an ER Gapabentin to see if it provides better pain control. Unfortunately I am still dealing with the extreme cold intolerance no matter how many layers of clothing I wear which seems more related to sympathetic nerve pain.

Sleep is always a challenge when your nervous system is messed up. I think you are smart to be focusing on getting better sleep. Sometimes medications are the answer for that. Klonopin was a huge help for me when I couldn't sleep.

Violet