Cannot lie flat on back

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Cannot lie flat on back

Post by Faith »

I wanted to try to get a poll on here of how many people either can't lie flat on their back now or couldn't when they had PNE. Thanks!

I can't lie flat on my back. My sacral pain is only on the left side and after my consult with Dr. Hibner and Loretta I understand most of my pain is at the ST ligament.
-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
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birdlife
Posts: 172
Joined: Mon Oct 11, 2010 1:56 am
Location: London, UK.

Re: Cannot lie flat on back

Post by birdlife »

Hi Faith,
Mine was at the ST too, and couldnt lay on my back at all. Didn't like anyone to even tentatively brush the lumbar area when standing up. My sacral pain was radiating centrally, in about a 6" diameter. Now that I'm having a flare up of PN symptoms (see post today under Success, with a twist ..), I am finding it very uncomfortable in that area again.
Hope you get the polll up and running!
Take care,
PN, possible entrapment at ischial spine -Dr.Natasha Curran, National Hospital for Neurology, London.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Cannot lie flat on back

Post by helenlegs 11 »

I also find it impossible to lie on my back although I always preferred to sleep that way before (a vanity, wrinkles thing) . I can only lie on my front, have to tuck my fist inside my hip bone to act like a sort of bridging for my pelvis and bend my leg frog like which is very inelegant and my hand is often asleep before I am :)
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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birdlife
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Joined: Mon Oct 11, 2010 1:56 am
Location: London, UK.

Re: Cannot lie flat on back

Post by birdlife »

:D Helen you are so funny! I always preferred to sleep foetus-like on my side (no thumb in mouth!) but due to leg muscles being full of triggerpoints from thigh to knee I had to try to sleep on my back, only to find my sacrum wouldnt let me :roll: . Violet knows I was wishing for 2 elephants to swing me to sleep in their trunks.
What i do is have one roll cushion to support the opposite arm to the one I'm sleeping on, and another squidgy roll cushion between the knees to keep the pelvic floor open. Then just hope I don't turn over in the night! :lol:

Take care,
PN, possible entrapment at ischial spine -Dr.Natasha Curran, National Hospital for Neurology, London.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
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Amanda
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Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
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Re: Cannot lie flat on back

Post by Amanda »

I havent been able to sleep on my back for many years, I prefer my left side but do often roll onto my right side but after a hour or so I roll back onto the left side again. I use some pillows to support my hips on either side so if I accidently while asleep lie on that side that i have support.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Ray P.
Posts: 248
Joined: Mon Sep 20, 2010 5:22 pm

Re: Cannot lie flat on back

Post by Ray P. »

I can only lie on back for a few minutes; then the pain starts up. If I been my knees up in the air, I can last a little longer.
What does that mean? I have had 2 operations.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Cannot lie flat on back

Post by nyt »

I was always a belly sleeper until my hysterectomy 4 years ago and then couldn't lay on my belly because I could feel a suture pulling on my left lower abdomen, 4 years later it is only a little better to sleep on my belly. So, I went to side and back sleeping. When I developed TMJ I started trying to sleep on my back but was finding just before my surgery with Dr. Hibner that I was getting too much pressure on the ischial spines and that was causing me flares so to the side sleeping with a few pillows I went. Since surgery I can't sleep on my back at all because the pressure on my sacrum on the surgical side causes burning and pain within a few minutes. Sometimes I wake up in the night with perineal burning and I'm on my back :oops:. I'm sure with time as the tenderness in the sacrum and tender muscles continue to improve I will be able to return to my back.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Cannot lie flat on back

Post by helenlegs 11 »

Ray P. wrote:I can only lie on back for a few minutes; then the pain starts up. If I been my knees up in the air, I can last a little longer.
What does that mean? I have had 2 operations.
I suppose the site that causes some compression is raised away from the bed in that position? is it even better on a harder surface ? It may have a hip component though ? ? as the hip joint will have had to move to get there, total speculation on my part of course.
The other thing that springs to mind is that a slight shift in body position can have a similar effect for me unless you have appreciably less painful or a good longer timescale for pain relief. This action may mimic the 'sitting on toilet' position which is traditionally easier with PN. I suppose it may show that any remaining problem is lower down, where were your op's Ray?


Oh nyt I feel so sorry for you. I know if I do manage to sleep through the night I wake with so much more positivity,I even announce it to my husband as such an accomplishment :D but it's so important. Hopefully it won't be too long till the surgical site stops restricting you. (((hugs)))
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Cannot lie flat on back

Post by Faith »

Ray P. wrote:I can only lie on back for a few minutes; then the pain starts up. If I been my knees up in the air, I can last a little longer.
What does that mean? I have had 2 operations.
I am the same way Ray. If I raise up my legs I can tolerate laying on my back a little. I think for me it is taking pressure off the sacrotuberous ligament which is where a lot of my pain is. Where did they find you to be entrapped?

Th other question is do any of you have SIJD?
-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
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Cannot lie flat on back

Post by Violet M »

Faith, I could not lie on my back without my legs bent before surgery. Definitely had SIJ problems.
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.
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