Other neuropathies not in the pelvis

Hysterectomy, Ovary Removal, SIJD, Piriformis Syndrome etc
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Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Other neuropathies not in the pelvis

Post by Faith »

Has anyone experienced other neuropathies/entrapments not in the pelvis such as carpal tunnel syndrome? I have been experiencing a lot of pain in my elbows (especially my left). They burn and then on my left I have numbess/tingling in my ring/pinkie finger. I hit my left elbow and it caused a electrifying (sp?) pain throughout my elbow/forearm hand. I think these are symptoms of cubital tunnel syndrome (entrapment of the ulnar nerve), but my injury seems kind of out of proportion to my level of pain. I think that maybe it is also because I have to lie in weird positions typing since I can't lie on my back or sit so it puts too much pressure on my elbow. Another thought is that it is just RSD/CRPS, which I think I possibly have in my legs/feet, but this isn't the characteristic pain of RSD. I've been icing my elbow and taking ibuprofen, but nothing helps. If I lean on them at all my arm starts to go numb.

It seems like people who develop PNE are predisposed to it in some sense, so maybe we are also predisposed to other neuralgias? This blogger http://paininthemom.wordpress.com/ has PN and had a history of carpal tunnel as well which I find interesting.

What do you all think? I will travel to Dr. Hibner next week so I'll see what he thinks. But I am hoping maybe it's just caused from overuse and muscle tightness.
-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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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Other neuropathies not in the pelvis

Post by Celeste »

I think anyone who lies on their arm in unnatural positions is predisposed to it. I went through it myself once after waking up on top of it, and it took ibuprofen plus a few nights of making that arm be propped up on a pillow to allow things to settle down. I don't think it has a thing to do with some general susceptibility to neuropathy; I think the human body just has limits on what stresses can be put on it and anybody would have the same result. I will hope for the best for you that you can get this new nuisance to be behind you.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
pomegranate
Posts: 157
Joined: Sat Sep 18, 2010 3:12 am
Location: Oklahoma

Re: Other neuropathies not in the pelvis

Post by pomegranate »

I have no clue as to predisposition to other neuropathies. However, I definitely get mild carpal tunnel from time to time...mainly from computer usage and the way I sleep. I've started wearing wrist braces for typing and sleeping when it flares up and it really helps! Is this an option for you?

Lauren
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Other neuropathies not in the pelvis

Post by HerMajesty »

I think many of us who have these disorders are predisposed to multiple neuropathies.
I started with bilateral ring / pinkie finger neuropathy, and milder neuropathies in the other fingers before I had any PN symptoms. I just don't make a big deal about it because it is mild enough to live with forever if I keep my nails short.
The order of my issues was: Interstitial cystitis & migraines 26 years ago; finger neuropathy approx. 9 or 10 years ago, before 2nd pregnancy; also occasional sciatica started during same time frame; soon after 2nd childbirth, neuropathy in toes / feet, about 1 - 1.5 years after childbirth, progressive onset of pudendal neuropathy and neurogenic bladder; very recent increase in foot / leg neuropathies but they are transient and respond well to rest. I also did BTW have symptoms of carpal tunnel at age 17 while working on a horse farm cleaning stalls (numb fingers in the a.m., progressing to tingling and pain, gone by afternoon), but I quit the job and it went away. Just generally prone to neuropathies it seems.
What I have read about "carpal tunnel" is a lot of times surgery to decompress the carpal tunnel does nothing because the source is more centrally located, originating from a pinched nerve in the area if the clavicle, or in the cervical spine. Those particular two fingers are indicated on trigger point maps to also be possibly related to muscular trigger points towards the medial edge of the antecubital space. I checked and I did indeed have huge trigger points there, but massaging them out did NOT reduce the neuropathy.
I have found that while it is always there in the background, taking naproxen instead ibuprofen because of the longer anti-inflammatory duration and being cautious about ergonomics will reduce any acute flare. I feel like the hand issues are the least of our worries but yep I do have em.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Other neuropathies not in the pelvis

Post by calluna »

Interesting! I've had carpal tunnel for a couple of years now, I can manage it with wrist braces overnight when needed. And icing, once again ice works wonders.

I've also got something funny going on with my left foot. There is one patch of skin where the sensation is altered - not quite numbness, but close - and another patch where touch causes pain.

I am sure you are right, HM, and we could well just be predisposed to such things, that sounds eminently sensible.
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Other neuropathies not in the pelvis

Post by Faith »

pomegranate wrote:I've started wearing wrist braces for typing and sleeping when it flares up and it really helps! Is this an option for you?
I don't have symptoms of carpal tunnel syndrome, but rather cubbital tunnel syndrome with pain in the elbows mainly and sometimes numbness/tingling in the pinkine and ring finger. I have tried wearing a nighttime elbow brace, but I always end up taking it off in my sleep. If it does stay on at night I find that actually my pain seems worse for some reason. I also have been taking ibuprofen round the clock for about 3 weeks with no improvement. I am not for sure if there is a day time brace for this and even if there is it would be difficult to use as it would have to keep the elbow straight and it would be difficult to do anything without bending the elbow to some degree.

I am just praying this goes away or I find a way to better manage it. The root cause is most likely either CNS sensitization or due to my inability to lay on my back or sit to type and use the computer.

Thanks for everyone's input!
-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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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Other neuropathies not in the pelvis

Post by Celeste »

I learned that this elbow-to-pinkie pain is sometimes referred to as "Saturday night palsy" because drunks pass out in weird positions and get the same pain. Kind of depressing to think about that when it happens for non-alcoholic reasons!

I've come to the conclusion that having nerves predisposes people to neuropathy, much like being born predisposes us to dying. :lol:
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Other neuropathies not in the pelvis

Post by Faith »

Since Loretta, Hibner's PT thinks I have widespread joint hypermobility I was reading up some on joint hypermobility and it is very interesting because I do have a lot of the symptoms/effects of it. Also some sources say that people with joint hypermobility have an increased chance of getting central sensitization or fibromaylgia. I definitely have central sensitization. Also it says people with joint hypermobility are predisposed to "tunnel syndromes" such as carpal tunnel and I think for some pudendal neuralgia. Just an interesting thing to think about.
-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
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Other neuropathies not in the pelvis

Post by helenlegs 11 »

Faith wrote:Since Loretta, Hibner's PT thinks I have widespread joint hypermobility I was reading up some on joint hypermobility and it is very interesting because I do have a lot of the symptoms/effects of it. Also some sources say that people with joint hypermobility have an increased chance of getting central sensitization or fibromaylgia. I definitely have central sensitization. Also it says people with joint hypermobility are predisposed to "tunnel syndromes" such as carpal tunnel and I think for some pudendal neuralgia. Just an interesting thing to think about.
Yes Faith, I am hypermobile too. Not a contortionist, although Dr Greenslade did report that my forward flexation was 'alarmingly good'. He also said that it predisposes a person to pain.I think it's more that being a little more flexible allows joints to move that bit further, therefore allowing muscles, tendons and ligaments to be more prone to damage. Although that extra 'give' might sometimes save a broken bone perhaps.
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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