Sacral pain

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Sacral pain

Post by Lernica »

Don, I'm sorry to hear about this development. Hopefully you're just recovering from the fall. Does the pain feel nervy? For me the pain is definitely nervy, and I can feel the pain signals travelling up the spinal cord and right into the brain. It's an anxiety-provoking, breathtaking kind of pain. Thankfully, however, like you it goes away after resting.
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
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Sacral pain

Post by Faith »

donstore wrote: I was thinking about seeking PT for the sacral pain but after hearing about Faith's experience, I am apprehensive about making it all worse. No easy answers, that's for sure.
Don,
So sorry to hear about your new pain. How did you land when you fell? Did you lad on your sacrum or coccyx area? I do think my experience with PT is unique and shouldn't be an issue with you. My increase in pain from SI manipulations was because of the high velocity technique used and also the fact that I was 6 months postpartum and still breastfeeding. Have you had an xray? I know it won't show much, but just to make sure. Like you, my sacral pain hurts when lying flat on my back. I only lie on my side. Like Lernica said my pain feels like nerve pain. Burning and almost electrical like. It really travels all around my pelvis and up my sacrum. Take an antiinflammatory (i.e. ibuprofen) if you aren't already and can. I do hope it gets better with time and is just related to the fall.
-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
merrie
Posts: 114
Joined: Wed Oct 27, 2010 10:32 pm

Re: Sacral pain

Post by merrie »

I wear lidoderm patches over my sacrum and it helps take the edge off the sacral burning pain. Might be worth a try since they are very easy to use.

Merrie
PNE onset 9/2008
Weekly pelvic floor PT since 9/2008
Numerous nerve blocks 2008 - current (pn, s2-s4 epidurals, pelvic/lumbar/splanchnic sympathetic)
PRF s2,3,4 May 2009
Numerous hip injections and trigger point injections
Numerous rounds of botox (first 12/08 - most recent 5/13)
Hibner consult / Kalinkin MRI 11/10
PT with PHRC in May 2013
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Sacral pain

Post by Faith »

I wish I could use Lidoderm patches Merrie, but they are like a $100 a patch for me :( Name brand and non-preferred drug on our insurance.
-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
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Sacral pain

Post by donstore »

Hi Faith and Lernica,
Thanks for your reply. When I fell, it was on my right knee and I rolled forward on my right hip and back to a standing position almost like an acrobat so there was no direct impact on the sacrum which makes me think that it is referred pain from the PN. Also, it has the same burning quality as the perineal pain. I was a little concerned because I had my right hip replaced in last March but it is rock solid now. If only the PN were as easy to fix as that. Maybe I can get my insurance to pay for the patches if the problem persists. They finally came around on the Lyrica after numerous appeals. Faith, maybe you can get your insurance to pay if you appeal enough. Often you have to file a grievance with the state insurance board where you live.

Best Wishes,

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
JRS
Posts: 26
Joined: Tue Feb 22, 2011 10:54 pm
Location: Ohio

Re: Sacral pain

Post by JRS »

I too have sacral pain which is real nerve pain. It was were my PN started and continues to be my "main" source of pain. It was suggested for me to consider a caudal ESI injection to bathe the sacral as alternative to another CT-guided PN injection. Appreciate any input if you have had experience (positive or negative with this). I get the most relief from ice and the Lidoderm patch as well. I also have used lidocaine topical ointment here as well (just a thought if your insurance will cover this if not the Lido patch). I have also started taking a probiotic (Align) just to keep my digestive system tuned up as my pain seems to do better when I have no extra bowel/rectal pressure. Here's to a better week to everyone.
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)
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Sacral pain

Post by Lernica »

JRS wrote: I have also started taking a probiotic (Align) just to keep my digestive system tuned up as my pain seems to do better when I have no extra bowel/rectal pressure.
Tell me about it! I had a really bad pain day today because I missed my daily BM this morning. I take Lactulose every day as a prophylactic measure. But it looks like I'll have to increase the dose.
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
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Sacral pain

Post by Faith »

JRS wrote:I too have sacral pain which is real nerve pain. It was were my PN started and continues to be my "main" source of pain. It was suggested for me to consider a caudal ESI injection to bathe the sacral as alternative to another CT-guided PN injection. Appreciate any input if you have had experience (positive or negative with this).
Have you seen a PT and do you by chance have Sacroiliac joint dysfunction? I had an ESI at the S1 nerve root level. My pain was some better for about an hour and then I had horrible pain for several days. (It was much worse for me than my PN blocks). I had either a bad reaction to the steriod (but I doubt that because I've sine had the same steroids in my PN blocks) or the doctor got too close to the nerve and irritated it which is what I think. I had to get another MRI to make sure the nerve wasn't "compromised (as the dr. put it) and I was put on oral steroids. I had numbness and tingling in my legs and even swelling and pain in my hands (joints of fingers). Anyways, it did nothing for the pain long term. At the time I had some vulvar pain, but mostly sacral pain. About a month or so after that injection I developed pain in my sit bones and worsening of my widspread myofascial pain. I don't necessarily think it was related to the injection. I think rather PN is a progressive condition and mine worsened at that point. If the PN block numbed you then it sounds like you have PN and I really don't think an ESI is going to give you any more benefit, but I may be wrong. Are you planning to see a PN specialist or get a 3T MRI?
-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
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Sacral pain

Post by Faith »

JRS,
Is your sacral pain on your right side only (I saw you said you have right obturator and piriformis pain) or both sides? Just wondering. Mine is worse on the left, but I have pain in the "sit bone" area on both sides (although left is worse).
-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
Posts: 26
Joined: Tue Feb 22, 2011 10:54 pm
Location: Ohio

Re: Sacral pain

Post by JRS »

Faith,

My sacral pain in mainly right side but I do have dual buttock pain -- right is just worse and both of my legs are pins and needles about half the day but again the right side is just more involved. I had contacted Dr. Potter's office to see if she would read an outside film as I have located a nearby facility here in my City that will take my insurance and also has the 3T MRI technology but Dr. Potter does not read outside films. I talked to the Specialty Imaging Center that Dr. Potter uses and they do not accept my insurance. I'm going to keep seeing the PN therapist twice a week and reassess if there has been improvement when I get to the 12 visits end of April. If not, I will try to find a way to get to NY and pay for this testing. Did you have the test by Dr. Potter? I presume anyone that is ever entrapped needs this for treatment? It is all so frustrating AND painful. You are going to a PN specialist in the Fall, correct?
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)
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