Violet, How did your pelvis finally become stable? From Prolotherapy or core strengthening? Just wondering how they knew your SI ligaments were chronically strained? I think mine might be from constant "mobilizations" and my pelvis is always out of "alignment". I wonder if that's just all that is causing my PN pain. If I go to a PN doctor though they will just focus on diagnosing PN and not looking at the pelvic floor muscles/ligaments and alignment, will they? I just feel like I have multiple issues, not just pain with sitting. Thanks for being such a good resource to ask questions to!Violet M wrote: I had been told by several healthcare providers that I had pelvic instability with chronically strained SI ligaments.
Low Back pain
Re: Low Back pain
-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
-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
Re: Low Back pain
Kat, no, that website is just something I googled. I'll have to check and see if our website has prolotherapy listed as one of the possible treatment options. It's not really mainstream medicine and I learned about it from reading the forum awhile back -- thanks to others who had posted their experiences.kat wrote:Thank you for that website. Is this website on that part of the Hope site for (Important Websites or whatever it's called)?
By the time I tried prolotherapy I was completely off pain meds -- it was probably at least 2 years after surgery when my PN pain was much better -- but I still had some SI pain.So you said it hurt and that you were not able to take anti inflammatories? Does that mean it was after surgery and you were no longer on pain meds or anything?
When I first came to the PN boards I knew absolutely nothing about PN -- everything I know about PN is stuff I learned through experience or online -- through tons of research and reading thousands of posts from other people. I can't imagine living with this as long as you have -- in some ways you know more about it than I do!
Faith, maybe I should first say how it became unstable. I was doing a lot of weightlifting with lunges and squats -- plus using the elliptical and running up and down stairs to get my heart rate up. (A true exercise freak if there ever was one. ) After trying to align my pelvis, my chiro finally gave up after the 3rd time because it would not stay in alignment for even 5 minutes. My PT gasped when she saw how "floppy" my pelvis was. Both of them said it was due to strained SI ligaments.Faith wrote:
Violet, How did your pelvis finally become stable? From Prolotherapy or core strengthening? Just wondering how they knew your SI ligaments were chronically strained? I think mine might be from constant "mobilizations" and my pelvis is always out of "alignment". I wonder if that's just all that is causing my PN pain. If I go to a PN doctor though they will just focus on diagnosing PN and not looking at the pelvic floor muscles/ligaments and alignment, will they? I just feel like I have multiple issues, not just pain with sitting.
So, I wouldn't say my pelvis is completely stable now but it's much better. I do core strengthening exercises 4 days a week and that helps. Also time and being careful plus the prolotherapy injection have helped.
I think it's possible that your pelvic misalignment is one of the causes of your PN pain. The question is, if you can keep it aligned, will your PN pain eventually go away -- and you won't know the answer to that until you try it. I think HerMajesty has posted her experience and maybe can answer this better than I can.
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.
Re: Low Back pain
I have tremendous Sacral pain. Because I broke my sacrum in the fall that was one of the reasons they just kept telling me, youre old, your broke your sacrum, its going to hurt blah blah...I have broken as many bones as evil kinevil...I know what old broken bones feel like! This was different! But they wouldnt listen, and I told doc after doc after doc...it hurts right here...then when I saw Dr. S and he was interviewing me, I mentioned that I have bad sacral pain and he put his hand around my back (blind) and put his finger directly on "the spot" and said, "here?" I knew right then I had finally found someone who could help me. He said that is where the nerves exit the spine. I still have alot of sacral pain post surgery, sometimes I still cannot even stand for clothes to touch the area and for sure cannot lay on my back. Katherine
Congenital Tethered Cord Syndrome-released 2000, Horseback fall fx'ing Sacrum & Coccyx (forward 90degrees) 2005. 4 years of severe pain which was finally self-dx'd as PNE (thanks to relentless internet research) and confirmed by Dr. Shobeiri, OU Med. PNLT's, PNB's x 3, Bilat TG done July 2010 revealing much nerve damage and atrophy. Good pain relief initially, increased pain at 3-4 months but remains below 7 unless I overdo, daVinci hyst 5 months after PN surgery with no increased PN pain
Re: Low Back pain
Hi Katherine,
Did Dr. Shobeiri happen to say if the surgery would eventually cure the sacral pain? I'm hoping and praying it does, as it's just as bad, if not worse than the PNE pain! Has anyone else had excruiating sacral pain prior to surgery?
Warm regards,
Karyn
Did Dr. Shobeiri happen to say if the surgery would eventually cure the sacral pain? I'm hoping and praying it does, as it's just as bad, if not worse than the PNE pain! Has anyone else had excruiating sacral pain prior to surgery?
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: Low Back pain
He didnt say but I will be sure to ask about it next week and let you know Katherine
Congenital Tethered Cord Syndrome-released 2000, Horseback fall fx'ing Sacrum & Coccyx (forward 90degrees) 2005. 4 years of severe pain which was finally self-dx'd as PNE (thanks to relentless internet research) and confirmed by Dr. Shobeiri, OU Med. PNLT's, PNB's x 3, Bilat TG done July 2010 revealing much nerve damage and atrophy. Good pain relief initially, increased pain at 3-4 months but remains below 7 unless I overdo, daVinci hyst 5 months after PN surgery with no increased PN pain
Re: Low Back pain
Cynthiya - if the patient is in the UK, then I'd suggest calling NHS Direct. I've always found them to be very helpful and supportive. They can send a doctor out to see the person - I know, because they've done it for me in the past.
The number is 0845 464748.
The number is 0845 464748.
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- Posts: 23
- Joined: Tue Sep 28, 2010 10:56 pm
- Contact:
Re: Low Back pain
I wanted to share my experience with low-back pain. I was having a lot of low back pain for a very long time. i could not lie down on my back for more then two minutes without feeling an increase in pain. Then I got nerve blocks that helped with this pain as well as a bit with the pelvic pain. This week i worked a bit in the garden (rather, trying to create a garden) and since then my whole body is just aching and shouting for relief. My low-back pain is back and no matter how much i massage myself around my sacrum, the pain is their. Someone mentioned that the squatting and the bending is no good for the lower back. GGRRRRRRRRRRRRRR!!!!!! And I also get that feeling like i am being cut in half.
please become a follower of my blog
feel free to comment and to share your thoughts with me
http://pudendalneuralgia-atara.blogspot.com/.
almost 37 years in this world, the last few years have been my merciless introduction to hell,
i take 100mg lyrica x 3, 120mg cymbalta, nerve blocks with dr.volovska
will self-medicate with marijuana when i can get my hands on some
am always in pain
if anyone has discovered the why? behind all this suffering please fill me in
thank you all for this forum
feel free to comment and to share your thoughts with me
http://pudendalneuralgia-atara.blogspot.com/.
almost 37 years in this world, the last few years have been my merciless introduction to hell,
i take 100mg lyrica x 3, 120mg cymbalta, nerve blocks with dr.volovska
will self-medicate with marijuana when i can get my hands on some
am always in pain
if anyone has discovered the why? behind all this suffering please fill me in
thank you all for this forum
-
- Posts: 43
- Joined: Mon Feb 14, 2011 4:06 am
Re: Low Back pain
i have discussed sacrum and back pain earlier on the form with several people.. i just wanted to share my experience in case this could help someone else.. I went on lyrica in january at the same time as getting a ganglion impar block.. a week later i developed excrutiating sacral pain and back pain that has lasted for months, which i blamed on the impar block.. noone ever made the connection that lyrica has a very small chance of causing back spasms (aka pain).. i decided to go off the lyrica to see if thats what was the cause of all this added pain and since going off my pain has improved about 65% .. just thought id share this with everyone in case the lyrica (or any other medication) is doing more harm then good!
Pevlic pain 8/15/10
Diagnosed with PN 2/11
Currently taking lyrica & cymbalta, PT, acupuncture
ganglion impar block -triggered lower back and sacrum pain
botox injections- caused coccxydynia
Deviated my coccyx 6 months prior- had a horrible case of posion ivy right before symptoms began, connection?
Diagnosed with PN 2/11
Currently taking lyrica & cymbalta, PT, acupuncture
ganglion impar block -triggered lower back and sacrum pain
botox injections- caused coccxydynia
Deviated my coccyx 6 months prior- had a horrible case of posion ivy right before symptoms began, connection?
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- Posts: 23
- Joined: Tue Sep 28, 2010 10:56 pm
- Contact:
Re: Low Back pain
Regarding my lower-back pain. I am on Camila birth control which is supposed to stop my period from coming. I realized that the lower back pain became really bad again when i got my period. So, it wasn't the gardening that caused the increase in pain, it was my period. It is amazing how much worse the pain becomes when i get my period. That is why i had to eradicate it or at least try to.
please become a follower of my blog
feel free to comment and to share your thoughts with me
http://pudendalneuralgia-atara.blogspot.com/.
almost 37 years in this world, the last few years have been my merciless introduction to hell,
i take 100mg lyrica x 3, 120mg cymbalta, nerve blocks with dr.volovska
will self-medicate with marijuana when i can get my hands on some
am always in pain
if anyone has discovered the why? behind all this suffering please fill me in
thank you all for this forum
feel free to comment and to share your thoughts with me
http://pudendalneuralgia-atara.blogspot.com/.
almost 37 years in this world, the last few years have been my merciless introduction to hell,
i take 100mg lyrica x 3, 120mg cymbalta, nerve blocks with dr.volovska
will self-medicate with marijuana when i can get my hands on some
am always in pain
if anyone has discovered the why? behind all this suffering please fill me in
thank you all for this forum
-
- Posts: 196
- Joined: Mon Sep 27, 2010 3:42 am
- Location: Vail, Arizona
Re: Low Back pain
Honestly, I went on the Depo Prevara shot to stop my period. At least I'm not flaring every four weeks now. Whatever it takes to ease some of our pain is the way I see it.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.