Pain moves around so much

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

Pain moves around so much

Postby Faith » Sun Oct 02, 2011 4:56 pm

Does your pain move around the pelvis and change daily? I have talked with another PN friend and her seems to do this as well. It's like some days the perineal burning is the biggest symptoms, other days it's my sacrum/coccyx, other days is around my alcock's canal/ischial tuberosity area. Somedays I can't hardly sit at all other days I can tolerate up to 30 minutes. Somedays my feet are on fire other days they aren't too bad. But no matter whate every day I have pain with sitting. The past seval days my pain has been really pain around the ischiopubic ramus on both sides! Still usually worse on the left though.

Is this because I have mulitple nerve involvement you think or is it just nerve "cross talk"/central sensitization?
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
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Re: Pain moves around so much

Postby helenlegs 11 » Sun Oct 02, 2011 6:54 pm

Because I have a definite injury site, pudendal/piriformis/sciatic notch (RH) that bit is sore all of the time. Similarly my numbness is numb in the same places all of the time. If I press my ischeal tuberosity up to ischeal spine or clitoris it always induces pain, but the rest of it can change, although I couldn't say it moves just 'grows' to other areas.
However, I wasn't a great believer in nerve cross talk, but I was trying to find my r side pudendal nerve and did! OW! to test that I had found it I tried to locate the other side to see if I could tell any difference, after all, locating a nerve may hurt anyway. I seemed to find it, it didn't hurt on that side but did send a pain to the problem side, weird!! I tested it quite a few times and it was the same, so I guess cross talk definitely does exist.
I know this doesn't answers your question Faith, sorry, but I don't think there is an easy answer.
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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Re: Pain moves around so much

Postby carolynm » Sun Oct 02, 2011 8:53 pm

Faith,

I have the same thing going on, but nothing in my feet. Same story, some days coccyx, next day clitoris, next day ischial tub's, next day whole perineum. I still can't sit, either, although I did go out for breakfast yest and did OK...but then payed dearly for it that night.

This whole thing sucks big time. I have had tears flowing every day for months. Haven't accepted it yet, I guess.

Helen, I'm interested to know how your PN started. Was there a precipitating event? It doesn't say in your signature and I've been wondering.

xx

cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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Re: Pain moves around so much

Postby Lernica » Sun Oct 02, 2011 10:06 pm

Yup, my pain moves around. Don't know why.

Faith and Cari, I've been following your posts on coping with young children. My heart goes out to both of you. Cuddling is such an important part of mothering, and it's so good for the babies and the moms too! When they reach up to be lifted or to sit on your lap, why not just lie down on the floor and cuddle them there? I suppose this can only be done at home, though, not at the grocery store!

Thinking of you both. Cari, a special big hug to you and well wishes for your trip to Phoenix on Tuesday!
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 sessions 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
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Re: Pain moves around so much

Postby Faith » Mon Oct 03, 2011 3:03 am

Lernica wrote:Faith and Cari, I've been following your posts on coping with young children. My heart goes out to both of you. Cuddling is such an important part of mothering, and it's so good for the babies and the moms too! When they reach up to be lifted or to sit on your lap, why not just lie down on the floor and cuddle them there? I suppose this can only be done at home, though, not at the grocery store!


Thanks Lernica,

I do spend a lot of time lying on the couch on my side and snuggle my daughter while she sits with her back to my belly. We watch TV this way and read books and just "talk" (she's 2 :)) It's a trying age for any mom I think. We are at the dreaded potty training stage and my daughter is quite strong willed. Fun times!
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
Faith
 
Posts: 695
Joined: Fri Oct 15, 2010 5:15 pm

Re: Pain moves around so much

Postby helenlegs 11 » Mon Oct 03, 2011 1:05 pm

Hi Cari,
I fell over and landed on my bum (concrete floor) I knew I had hurt myself but stupidly kept on going in typical me fashion. About 5 days later I was laid up in bed hardly able to move ( I could move my head and arm) but all of my pelvic, back and back of leg muscles were in a spasm. Weeing in a bucket (badly) :oops:
I suppose it was my body saying STOP! I didn't have any choice in the end.
I sympathise with all of you who have young children, which has got to be so difficult. . . and those of you that have to work, and some have to do BOTH!!!
I would also like to say that especially if the problems are through some trauma, the damage has been done, wherever the entrapment is, 'doing things' will make it worse but you will always return to base line pain with time. Well that is my experience anyway.
Not sure if that is any comfort at all, but weirdly it works for me. . .If I have/want to do something, I know I will suffer the consequences, it's not a surprise any more. . . I am in the situation where I can pick and choose (for the moment) I know that if I worked I would be growling under my breath at those 'stupid clients' who expected me to walk to the other end of the showroom to pick a catalogue up for them
(was an interior designer, mainly kitchens, bedrooms,bathrooms) and I would end up a 'mad, grumpy old woman'.
So until the money runs out. . . . at least I am still sane :)
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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Re: Pain moves around so much

Postby carolynm » Mon Oct 03, 2011 4:39 pm

Helen,

It was fun to see a picture of you on the facebook site! I love putting faces with names.

cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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Location: CO

Re: Pain moves around so much

Postby helenlegs 11 » Mon Oct 03, 2011 10:51 pm

Yes me too, you and your lovely family are as sweet as can be :) thanks for your comment ♥
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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Re: Pain moves around so much

Postby helenlegs 11 » Tue Oct 04, 2011 7:02 am

Had an idea about pain moving about. . . . Perhaps the further up the nerve you are trapped the more areas pain can develop. Then because the pelvis involves organs, bladder, bowel and sex depending on say how full the bowel is (and many have problems here) the nerve responds. Depending on how you have slept, tried to sit (compression) how far walked, stairs, lifted, carried etc. If the ligaments are involved this may add to the daily pain equation.
Just a thought.
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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Re: Pain moves around so much

Postby sam » Sat Nov 05, 2011 9:21 pm

Faith wrote:Does your pain move around the pelvis and change daily? I have talked with another PN friend and her seems to do this as well. It's like some days the perineal burning is the biggest symptoms, other days it's my sacrum/coccyx, other days is around my alcock's canal/ischial tuberosity area. Somedays I can't hardly sit at all other days I can tolerate up to 30 minutes. Somedays my feet are on fire other days they aren't too bad. But no matter whate every day I have pain with sitting. The past seval days my pain has been really pain around the ischiopubic ramus on both sides! Still usually worse on the left though.

Is this because I have mulitple nerve involvement you think or is it just nerve "cross talk"/central sensitization?



Yes my pain too keeps moving. i have severe pain below the coccyx, more on my right side and the pain radiates the entire length of my leg. The perennial burning I had before a year is a bit better now, but I have developed new pain in my sacrum, sit bones and legs but the pain however is nonstop and severe.
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