aaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh - having a total mare still. The new burning feet symptons is the worse of the lot. No idea what is causing it and can't imagine it is connected to the pudendal nerve. Burning in the feet that gets worse as the day progresses. Probably the worst out my symptons as not positional related and just comes on no matter what. Only thing that makes it better is taking my shoes off. Went to two new surgeons in Europe who both declined to operate on me because they can't reproduce my pudendal/bottock pain symptons from external/pubic ramus pressing or internal in the rectum prodding. Basically, after seven blocks (that haven't really done much), fancy scans in the US/UK and a lot of consultations it is still not clear what my diagnosis. The latest surgeon in the US who I was planning to see is now refusing to see me because he wants me because of the feet symptons and wants me to go back to the neurologist. This is nuts. I was wondering myself whether my pain problems my be related to something else, such as an inflammatory nerve disease - although had a brain scan earlier this year which pretty much ruled out MS. Now thinking about chronic inflammatory demyleneating polyneuropathy or some variant. But the recent nerve conduction studies rule out peripheral neuropathy, so that doesn't make sense. Or Maybe Fibromyalgia - only thing is I don't feel tired etc so kinda rule that out and pretty much local to my feet/bottock only on sitting and perineum just on sitting. All ideas welcome as this driving me up the wall.
p.s. forgot to mention I have an extremely stressful job. Can't help but thinking this is making worse/slash major contributor to my symptons.
aaaaaaaaaahhhhhhhhhhhhh -what is it?
Re: aaaaaaaaaahhhhhhhhhhhhh -what is it?
Question,
Sorry to hear about your burning feet. Please see my recent post under the Dr. Dellon thread about neuroplasticity. It might be worthwhile for you to look at the book I mentioned there. Apparently in the human map of the brain, the genitals and the feet are located right beside each other. I was reading this little fact last night and was wondering whether that would explain why many PN sufferers also have burning foot pain. On p. 184 the author writes:
"The Penfield brain map shows the genitals next to the feet, and since [phantom] feet no longer receive input, the genital maps likely invade the foot maps, so when the the genitals experience pleasure [or pain], so do the phantom feet. Dr. R. began to wonder whether some people's erotic preoccupation with feet, or foot fetishes, might be due in part to the proximity of feet and genitals on the brain map."
Some food for thought! (Hoping this post doesn't invite foot fetishists!)
Sorry to hear about your burning feet. Please see my recent post under the Dr. Dellon thread about neuroplasticity. It might be worthwhile for you to look at the book I mentioned there. Apparently in the human map of the brain, the genitals and the feet are located right beside each other. I was reading this little fact last night and was wondering whether that would explain why many PN sufferers also have burning foot pain. On p. 184 the author writes:
"The Penfield brain map shows the genitals next to the feet, and since [phantom] feet no longer receive input, the genital maps likely invade the foot maps, so when the the genitals experience pleasure [or pain], so do the phantom feet. Dr. R. began to wonder whether some people's erotic preoccupation with feet, or foot fetishes, might be due in part to the proximity of feet and genitals on the brain map."
Some food for thought! (Hoping this post doesn't invite foot fetishists!)
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
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: aaaaaaaaaahhhhhhhhhhhhh -what is it?
Question, I hate the burning foot pain too. I have always been sure it was due to sciatica because of piriformis syndrome.It gets progressively worse as the day goes on as you say until I can't put my heels to the floor. I get flashes of prickling pins and needles through the soles of my feet after walking just a few steps and thing this is related, mine does seem 'mechanical'. Lernica's post is very interesting though. How weird are we?? in a non foot fetish kind of way I might add!
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.
Re: aaaaaaaaaahhhhhhhhhhhhh -what is it?
I get the burning feet pain too, its definately the worst symptom as night progresses, especially as soon as I lie down for the night
When bad, about 50% of the time, it takes me about 3-4 hours to get to sleep, (I'm typing this at 3.30am as I can't sleep lol)
not just my feet its all down my legs from knee down, feels like I have stomped all the way to mt everest in bare feet on a steel ground, at times they feel 2-3x the size they are.
for me with flares in relation to the feet I also get creepy senastions like a pervy old man is fingering me.
I have had nerve conduction studies on L5 and S1, and they came out fine, as well as a scan for MS, and that was fine too.
When bad, about 50% of the time, it takes me about 3-4 hours to get to sleep, (I'm typing this at 3.30am as I can't sleep lol)
not just my feet its all down my legs from knee down, feels like I have stomped all the way to mt everest in bare feet on a steel ground, at times they feel 2-3x the size they are.
for me with flares in relation to the feet I also get creepy senastions like a pervy old man is fingering me.
I have had nerve conduction studies on L5 and S1, and they came out fine, as well as a scan for MS, and that was fine too.
Chronic Pain pudendal area for 3 years, after a hard jolt to right side.
18 months later discovered sprained/fused sacro-illiac injury. Told to 'live with it' then saw this forum October 2011 = symptoms matched. Attempting to get this investigated in the face of lack of skilled docs in New Zealand.
Been told I have IC Dec 2011
FINALLY - 3T MRI in Christchurch 5th May 2012 - Pudendal nerve block, unguided 8th June 2012 - still waiting on results and progress from these.
18 months later discovered sprained/fused sacro-illiac injury. Told to 'live with it' then saw this forum October 2011 = symptoms matched. Attempting to get this investigated in the face of lack of skilled docs in New Zealand.
Been told I have IC Dec 2011
FINALLY - 3T MRI in Christchurch 5th May 2012 - Pudendal nerve block, unguided 8th June 2012 - still waiting on results and progress from these.
Re: aaaaaaaaaahhhhhhhhhhhhh -what is it?
Again from Doidge (p. 359, note 184):
"Martha Farah, of the University of Pennsylvania, has noted that babies curled up in the womb often have their legs crossed and folded up against their genitals. Legs and genitals would thus be jointly stimulated when they touch each other, and then map together, because neurons that fire together wire together."
"Martha Farah, of the University of Pennsylvania, has noted that babies curled up in the womb often have their legs crossed and folded up against their genitals. Legs and genitals would thus be jointly stimulated when they touch each other, and then map together, because neurons that fire together wire together."
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