JRS, I'm glad your block experience turned out to be positive in the end. I was wondering what you mean by a PN epidural block? Was it given in the spinal area?
JRS wrote:I am curious what have others found in way of activity to burn off all this extra anxiety without additional pain -- is it possible?
During the worst of PN I became a PN forum junkie. I think you are amazing to try to keep working and raise 4 kids at the same time. Keep your courage up!
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
So happy the block worked for you at least for a while. I'm sorry the pain spiked, but that is typical. I'm surprised it didn't last longer actually. Mine flared up for at least a few days. What exactly is a PN epidural block? Did they go in through your low back/sacral area or the butt? Most PN blocks are done through the butt. So this block took away your sacral pain too for the entrie time? What is your next step do you think. I agree, if I could just have my health back life would be so much easier. I "burn off extra anxiety" mostly through my faith in God, but also I do a lot of reading, talking to people on the forums (although sometimes it can become more anxiety provoking), and I try to do a little exercise when I can (walking, light yoga stretching). I used to be so active so it's hard to just lay around. You are doing so great still trying to work and I can't imagine being a single mom of 4! How old is your youngest? Hang in there!
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
JRS wrote:I am curious what have others found in way of activity to burn off all this extra anxiety without additional pain -- is it possible?
I couldn't get through my day without my daily swim at the local YMCA. It is a painless form of exercise for PNers. You essentially burn off steam while lying down!
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
JRS wrote:I am curious what have others found in way of activity to burn off all this extra anxiety without additional pain -- is it possible?
I couldn't get through my day without my daily swim at the local YMCA. It is a painless form of exercise for PNers. You essentially burn off steam while lying down!
Lernica
How much do you swim lap/ yardage wise? I used to be a competetive swimmer and have thought about getting back into it but am afraid I will flare up my pain. Of course I have to take it slow due to my widespread myofascial pain. I get sore easily.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
To tell you the truth, Faith, I have no idea of the distance of my swims. I never was a competitive swimmer, only swimming when pregnant or injured. Now it's my lifeline! You will love it too, especially since you already know how to swim. So what I do is this: I swim for 15 minutes, take a 2.5 minute break, then swim for another 15 minutes, for a total of thirty minutes. In the morning right after breakfast. Front crawl the whole time. Pull-buoy between my legs every second length to minimize the strain on my hips/psoas/sacrum. A long hot shower beforehand (to loosen up morning stiffness) and a long soak in the hot tub afterwards are a big part of my routine. The truth is that during the 1.5 hours that I spend every morning at the Y, I am almost completely pain-free. I even go if I am in pain, as I find that during the swim and for at least an hour afterwards I feel great. So I go no matter what, for two days straight, then one day rest, then two days straight again.
When I was in a great deal of pain and/or recovering from surgeries and couldn't swim, I would go just to have the nice hot shower/whirlpool and to have a post "workout" coffee with my friends. Going to the Y in the morning has been an important part of my daily routine for many years, and I decided early on in this PN journey not to give it up, no matter how much pain I was in.
As you know from your competitive swimming days, it is important not to "twist" your body when taking a breath, but rather to rotate the whole body. This will reduce any strain on your lower back/sacrum. Also, it is important to teach yourself (meaning others, not you) to breathe from both sides of your body to minimize any repetitive stress injuries in your shoulders and neck. Finally, do NOT do a flip turn or push with your feet at the end of each length, because this can put too much strain on the pudendal nerve. Instead, when you are finished the length just touch the end of the pool with your hand and turn around.
Finally, you will need a good pair of swimming goggles and a bathing cap so that you can see your way in the pool without getting your hair in your eyes.
I hope you try it, Faith! Remember to take lots of breaks when you first start out, and not to get too exasperated if you can't keep up with the Masters swimmers training in the next lane!
All the best,
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
A week post steriod injection and I'm feeling worse than before I had it. I'm not blaming the injection in and of itself. I say that as I had my second PT session on Friday and was a mess by Friday night leaving me bed/couch bound for 36 hours. How are you suppose to know if they are doing too much? I pulled myself together enough to go to work today. The sacral and buttock pain is so great with a tremendous pressure and just burns like no other. Given the situations you all have experienced, should I be making an appt in Phoenix now as it appears to take some time??? I have another pain management appt next week which seems like next year tonight. I have not been able to systemically handle many of the neuro drugs like Neurontin, Lyrica, Toprimate, so I've tried many topicals with very little relief. Was given hydrocodone for pain but it just makes my heart race and provides no sleep. Anyone have any luck with suppositories for pain and if so, what type?
Symptoms started 7/2010 following Cellulitis infection
Hysterectomy 11/08 due to fibroids/4 child births
Rt Leg Obturator & Piriformis Pain
Sacral Pain
Current Medications: Lidocaine 5% Patch, Baclofen,Tramadol, Xanax
Topical Amitriptyline/Gabapentin Compound as I am not tolerating systemic treatment
Under Pain Management Care, Seeing a PN therapist (8 visits to date)
PN Block via CT Guide (3/11)
(2) ESI Trigger Point Injections (4/22/11)
Sorry you're having such a rough time, JRS. My only experience with topical treatment is a custom compound ointment consisting of Lidocaine 6% and Gabapentin 5%. Used on the ano-rectal-perineum region it gives me great relief from external burning pain. I use it twice daily.
For the buttocks and sacrum pain maybe you could try a large electric heating pad to relax the muscles. Or a warm sitz bath with epsom salts. These usually work for me when I have buttock and sacrum pain. Also, have you tried massaging the areas with a therapeutic massage ball (like a tennis ball, only slightly bigger)? I have also found lots of relief from that.
Finally, sitting in a hot whirlpool tub always works wonders for me to relax the buttocks and sacrum. Or standing in a hot shower with a powerful shower head to massage the same areas.
Good luck. I'll be thinking about you and hoping that your flare will calm down soon.
Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
JRS,
I'm so sorry you've had this flare up. What is the PT doing with you exactly? Is she knowledgeable about PN? As far as help with sacral/buttock pain I too struggle with this. I sometimes use a TENS unit and it helps a bit. Also massage helps me a lot. I have a Theracane (can be purchased on Amazon), but it's hard to get to the butt area with that. Maybe a massage ball like Lernica said. Hot showers help me. Have you tried Tramadol? I can't tolerate very much of it, but if I am in a bad flare sometimes I can take it and it doesn't affect me like Lortab. I have not tried suppositories, but Valium is what most people get relief from that I have seen. You may want to go ahead and make an appointment with a PN specialist because yes it does take some time. I wish I had done it earlier. Now I am sitting here waiting I would be sure to tell your PT that you flared badly after your last appointment. I had a bad experience with PT, it's what actually caused my pain. She was very aggressive and I didn't know at the time to tell her to stop. You have to advocate for yourself with this condition unfortunately.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
That is some YMCA to have a hot tub! We do have a warm therapy pool though so I may just swim a few laps then go get in the warm pool under the jets I wish I could get in a routine like that and go every day after breakfast. That sounds so relaxing! But being a mommy comes first right now for me. I am going to give swimming a try once I get over this nasty cold I have. It'll be hard not to do a flip turn for me. But I know I have to take it really slow. The thing about water is I don't feel hardly any pain while I'm in it, but afterwards I will flare if I push it too hard.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
JRS wrote: Anyone have any luck with suppositories for pain and if so, what type?
Someone mentioned valium suppositories. You could also try B&O suppositories if your physician will prescribe them.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
I think you are amazing to try to keep working and raise 4 kids at the same time. Keep your courage up! 
I would be sure to tell your PT that you flared badly after your last appointment. I had a bad experience with PT, it's what actually caused my pain. She was very aggressive and I didn't know at the time to tell her to stop. You have to advocate for yourself with this condition unfortunately.
I wish I could get in a routine like that and go every day after breakfast. That sounds so relaxing! But being a mommy comes first right now for me. I am going to give swimming a try once I get over this nasty cold I have. It'll be hard not to do a flip turn for me. But I know I have to take it really slow. The thing about water is I don't feel hardly any pain while I'm in it, but afterwards I will flare if I push it too hard.