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View Full Version : Has anyone has Meralgia Paresthetica?



susancook
07-02-2012, 03:00 AM
I understand that scoliosis can cause it. It is compression of the lateral femoral cutaneous nerve, generally trapped under the inguinal ligament. The LFCN supplies sensation to the upper outer thigh starting at the hip. My symptoms are: skin over L hip feels numb and rubbery, has tingling sensations, sometimes sensations of burning/coldness [but when you touch it, the temperature is normal]. Numbness goes to about 1/3 of the way down my L outside of my upper thigh. OUCH!!! Gets really achey, hot feeling painful especially in the evening after standing.

Anyone have this problem? How does scoliosis cause it? I really need help. Susan, bummed with one more problem....

susancook
07-03-2012, 02:43 AM
I am putting on BioFreeze and using my Lidoderm patches. Helps a little bit. I was out shopping today and found some clothes to try on and my hip started burning so badly that I just put the clothes back and left. If this is caused by the pulling of my scoliosis I am really in a bad place because it will not get better without the BIG surgery. Can't think about that...too heavy a thought right now. Hoping that someone responds and has some remedies to suggest. This may be a long haul.
Susan

rohrer01
07-03-2012, 01:32 PM
I have similar symptoms in my left arm and hand. It comes and goes. Sometimes it bothers me a whole lot and other times very little or not at all. I have never been diagnosed with anything pertaining to it because quite frankly I'm afraid to mention it! I did mention it to a D.O. a very long time ago and he called it tactile hallucinations. At that time, it felt like my hand was wet all the time. When I would touch it, there would be nothing there. I have had burning, numbness and tingling along with a nervy toothache type of pain at times. I hope yours subsides. I'm sorry I couldn't be of much help and am not sure if our symptoms are related at all. My scoliosis is up very high with a left apex so affects my left arm/hand/shoulder. If I remember correctly, you have lumbar scoliosis, right?

susancook
07-04-2012, 04:26 AM
i have had neuralgia and parasthesias with Lyme disease...

i have a benign tumor in left femur...it hurts, burning at times,
but they wont operate because of how deep in the femur it is...
they watch it every year with X ray...

hope your pain goes away...

jess

Jess: I didn't know about all your other problems! And Lyme disease too! Bummer....you certainly have some good times owed to you in this life!
Susan

susancook
07-04-2012, 04:41 AM
I have similar symptoms in my left arm and hand. It comes and goes. Sometimes it bothers me a whole lot and other times very little or not at all. I have never been diagnosed with anything pertaining to it because quite frankly I'm afraid to mention it! I did mention it to a D.O. a very long time ago and he called it tactile hallucinations. At that time, it felt like my hand was wet all the time. When I would touch it, there would be nothing there. I have had burning, numbness and tingling along with a nervy toothache type of pain at times. I hope yours subsides. I'm sorry I couldn't be of much help and am not sure if our symptoms are related at all. My scoliosis is up very high with a left apex so affects my left arm/hand/shoulder. If I remember correctly, you have lumbar scoliosis, right?

Thanks for responding. That crazy thing with your hand have must have driven you nuts! My curve is an "s" curve, some some thoracic involvement, a cute kyphosis [just enough to look like a little old lady!], but most is lumbar. The apex is to the L and my burning pain of the scoliosis is to the right. This new burning pain is in my skin on the L hip. Appartently, the scoliosis can cause a pull on the nerve to cause the pain. If so, it looks like this pain will be my "friend" for a while. I'm hoping that it isn't related to my scoliosis. I sent an email to Dr. Hart, but have not received a reply.
Your caring is "much help". Thanks!
Susan

susancook
07-06-2012, 05:43 AM
Only people w/ scoliosis will truly understand me....the MP pain that I described above has been quite a problem. The Left hip severe burning pain comes and goes, it lasts maybe 5 minutes or so when in occurs. That 5 minutes are awful! Well, funny thing, I was in pain yesterday and it really was strong. I was walking, so I stopped and standing up, bent my knees not quite to 90*, put my hands on my knees and for some reasons ended up pushing my knee out to the R [the opposite side of the pain] , and sort of twisted my butt to the R.....and AMAZING, the pain stopped. Since then, I have "assumed the position", and can pretty much stop the pain. I hold that position for about 10-15 seconds or so. Sometimes, I need to repeat the maneuver.

I look sort of weird when I do it...last time was at the checkout stand at the supermarket this evening, but weird beats severe pain. The maneuver must lessen the pull on the nerve somehow.

I see my neurologist in about a week, and I know that she will have to restrain herself from laughing when I show her what relieves the pain.

I am so happy that I have found some relief from the burning pain of my L hip....now, if I could find relief for the rest of my back pain....hahahahahahaha.

Susan

leahdragonfly
07-06-2012, 09:14 AM
Hi Susan,

Great news! I'd choose weird over agony any day, too. I wonder if your new position stretches the piriformis muscle and releases your pain. Try looking up "piriformis syndrome". It is a muscle in your butt and some of your lower spinal nerves run through it and can get irritated/compressed. PT worked with me to do some sort of similar "butt stretch", which made me think of it.

Take care,

susancook
07-06-2012, 02:42 PM
Hi Susan,

Great news! I'd choose weird over agony any day, too. I wonder if your new position stretches the piriformis muscle and releases your pain. Try looking up "piriformis syndrome". It is a muscle in your butt and some of your lower spinal nerves run through it and can get irritated/compressed. PT worked with me to do some sort of similar "butt stretch", which made me think of it.

Take care,

Thanks for the info. That may definitely help. The symptoms are exactly like Meralgia Paresthetica, a stretching or entrapment of the lateral femoral cutaneous nerve [LFCN]. Apparently it is most common for the nerve to be entrapped or compressed as it passes between the ilium and the inguinal ligament. Somehow, the "maneuver' that I do relieves that discomfort.

I have other butt pain which may be piriformis syndrome, so I will look that up and may ask you for mor detail about the stretches that you do.
Susan

Nancy T
08-08-2012, 03:53 AM
Wow, that explains it! Regularly in the past few weeks (and occasionally in the past) I've been getting solid numbness down the outside of both thighs after standing for a while; when I sit down, the numbness turns to cold sensation and gradually dissipates. Only just today did I figure out this must be meralgia paresthetica!

Susan, sorry you are having so much trouble with back and hip pain. I am lucky, this is not painful for me.

(I have had scoliosis since adolescence--did not see dr. after age 14--then six years ago, when I was 49, I finally saw a spine specialist and found out what was up--two curves, 35 or 38 degrees, didn't really progress when I went back 3 years later for another x-ray, so I'm not being followed anymore. I've had so many weird, unexplained neurological symptoms it's not even funny, in my face and hands as well as legs, but I've decided to blame most of them on scoliosis! It's nice to know what that numbness is without even having to go to the doctor, as they think I'm a hypochondriac. :)

Take care and good luck!

Nancy

susancook
08-08-2012, 02:45 PM
Wow, that explains it! Regularly in the past few weeks (and occasionally in the past) I've been getting solid numbness down the outside of both thighs after standing for a while; when I sit down, the numbness turns to cold sensation and gradually dissipates. Only just today did I figure out this must be meralgia paresthetica!

Susan, sorry you are having so much trouble with back and hip pain. I am lucky, this is not painful for me.

(I have had scoliosis since adolescence--did not see dr. after age 14--then six years ago, when I was 49, I finally saw a spine specialist and found out what was up--two curves, 35 or 38 degrees, didn't really progress when I went back 3 years later for another x-ray, so I'm not being followed anymore. I've had so many weird, unexplained neurological symptoms it's not even funny, in my face and hands as well as legs, but I've decided to blame most of them on scoliosis! It's nice to know what that numbness is without even having to go to the doctor, as they think I'm a hypochondriac. :)

Take care and good luck!

Nancy

So glad that I helped you! I found a lot of info on the internet, in fact that was how I self-diagnosed. I put on "numbness in skin on hip" in yahoo and immediately found the diagnosis. Before that I thought that I was just imagining it as the numbness seemed weird.

Yes, it can be bilateral, but usually only one sided. My skin feels rubbery over my hip and has little to no sensation. It "burns" and hurts alot mostly in the evening or after standing or walking for a while. Hot baths sometimes make it worse. I have tried ice, and maybe it helps some. When I saw my Internal Med MD, he did not know the name of what it was, but said that it sounds like a nerve compression problem. Then I told him the diagnosis that I came up with and he laughed and agreed. He referred me to a neurologist.
I drew a line around the area for my neurologist in pen before I went to see her. She confirmed the diagnosis.
I use 2 Lidocaine 5% patches on the area every day. That helps some. She wanted me to take Gabapentin orally but it was too sedating [I also take pain meds for my headache which is probably an interaction.] She just gave me a compounded gel with Gabapentin in it which I will try today twice a day. I have had this problem for 2.5 months, so she referred me to a pain MD for a cotisone inj along the femoral nerve.
Let me know how you are doing with a PM. Good luck!
Susan

rohrer01
08-09-2012, 01:30 AM
Wow, that explains it! Regularly in the past few weeks (and occasionally in the past) I've been getting solid numbness down the outside of both thighs after standing for a while; when I sit down, the numbness turns to cold sensation and gradually dissipates. Only just today did I figure out this must be meralgia paresthetica!

Susan, sorry you are having so much trouble with back and hip pain. I am lucky, this is not painful for me.

(I have had scoliosis since adolescence--did not see dr. after age 14--then six years ago, when I was 49, I finally saw a spine specialist and found out what was up--two curves, 35 or 38 degrees, didn't really progress when I went back 3 years later for another x-ray, so I'm not being followed anymore. I've had so many weird, unexplained neurological symptoms it's not even funny, in my face and hands as well as legs, but I've decided to blame most of them on scoliosis! It's nice to know what that numbness is without even having to go to the doctor, as they think I'm a hypochondriac. :)

Take care and good luck!

Nancy

Nancy,
Don't feel bad. They often think we are hypochondriacs! I have many weird pains, too.

Susan,
I also have left hip pain that radiates through my left buttock and either down the back of my leg or the front of my leg or both. It can even go all the way down to my foot. I have occaisional right pain that is similar, but not nearly as often. Mine bother me most when I try to lay down. :-( Also, my tailbone area has been numb for some 20 years. I just got up the nerve to tell my new doctor that. I didn't complain because it's just numb and doesn't usually hurt too badly if at all most of the time. I have spina bifida occulta at L5, though. Who knows how that affects things?

susancook
08-09-2012, 02:52 AM
Nancy,
Don't feel bad. They often think we are hypochondriacs! I have many weird pains, too.

Susan,
I also have left hip pain that radiates through my left buttock and either down the back of my leg or the front of my leg or both. It can even go all the way down to my foot. I have occaisional right pain that is similar, but not nearly as often. Mine bother me most when I try to lay down. :-( Also, my tailbone area has been numb for some 20 years. I just got up the nerve to tell my new doctor that. I didn't complain because it's just numb and doesn't usually hurt too badly if at all most of the time. I have spina bifida occulta at L5, though. Who knows how that affects things?

The MP pain does not radiate. The hip skin in numb [to pins] and rubbery feeling. It hurts only in the patch of the numbness around the outside and a little bit to the front of the hip and down about 1/4 down my thigh on the side and sl to the front. The pain is a burning pain. So, you may have MP and other things too....bummer....like you said, there are so many things happening simultaneously! I also have R and L sciatic pain, the R sometimes radiates to the front of my leg.

Hope that you find some relief. I recommend Lidocaine 5% patches. Expensive, but worth it!
Good luck.
Susan

rohrer01
08-12-2012, 04:40 PM
The MP pain does not radiate. The hip skin in numb [to pins] and rubbery feeling. It hurts only in the patch of the numbness around the outside and a little bit to the front of the hip and down about 1/4 down my thigh on the side and sl to the front. The pain is a burning pain. So, you may have MP and other things too....bummer....like you said, there are so many things happening simultaneously! I also have R and L sciatic pain, the R sometimes radiates to the front of my leg.

Hope that you find some relief. I recommend Lidocaine 5% patches. Expensive, but worth it!
Good luck.
Susan

I have tried Lidocaine patches. They offered no relief to me. They seem to only numb the skin for me. That's interesting though, because when I get Lidocaine shots (during trigger point injections) it goes systemic on me and makes my face and other body parts numb at times. It also clouds my thinking (I get really talkative- not good with numb lips and tongue!) and makes me feel "high". I HAVE to have a driver to take me home when I get these shots. I would think that the patches would absorb farther than the skin. They just don't. Thanks for the advice, though. I'm really glad they work for you! =)

susancook
08-12-2012, 10:46 PM
I have tried Lidocaine patches. They offered no relief to me. They seem to only numb the skin for me. That's interesting though, because when I get Lidocaine shots (during trigger point injections) it goes systemic on me and makes my face and other body parts numb at times. It also clouds my thinking (I get really talkative- not good with numb lips and tongue!) and makes me feel "high". I HAVE to have a driver to take me home when I get these shots. I would think that the patches would absorb farther than the skin. They just don't. Thanks for the advice, though. I'm really glad they work for you! =)

Bummer that you do not get any relief from Lidocaine patches. Systemic Lidocaine affects your heart...not a good idea!
I worked in a cardiac care unit and used to inject it into IVs for people with very abnormal rhythms.
According to the literature, there is a small amt absorbed systemically from the patch.
Good luck in finding something that works for you.
Susan

susancook
08-17-2012, 03:40 PM
I have called the pain management MD x4 now trying to schedule an injection of the cutaneous femoral nerve. First he didn't receive the referral from the neurologist, so called the neurologist who assumed that I did not need a referral since I had seen him before, then she sent it, when they received it I called the pain MD back and they can schedule in 1+ months for a "consult", not even the procedure. Called back...that is unacceptble. They will "talk to him"....so sent an email to the neurologist to plead on my behalf.

Meanwhile I use Lidocaine patches 24 hrs a day and neurontin gel with some relief. Getting care is a full time job! Good thing that I am retired....but very tired to pleading for help.
Susan

Nancy T
08-18-2012, 01:08 AM
Susan, sorry to hear about your frustration in getting the doctors to pay attention to your pain level. The back and forth of phone calls, miscommunication and misunderstanding of the patient's situation seem so common. I know doctors are rushed and their staff are not always too reliable, but still it's hard when the patient is struggling with pain or some other problem to have to jump through so many hoops. Hope you get some relief soon.

Nancy

susancook
08-20-2012, 01:00 AM
Susan, sorry to hear about your frustration in getting the doctors to pay attention to your pain level. The back and forth of phone calls, miscommunication and misunderstanding of the patient's situation seem so common. I know doctors are rushed and their staff are not always too reliable, but still it's hard when the patient is struggling with pain or some other problem to have to jump through so many hoops. Hope you get some relief soon.

Nancy

Thanks Nancy. So much of the problem is the phone tag: I tell the receptionist, she tells the assistant, the assistant tell the MD...and who knows what the message is at that point. I am considering sending him a letter that needs his signiture! I started with the MP in May and it has only gotten worse.
The neurologist gave me some gabapentin in gel that helps some, but after I apply it, of course the Lidoderm patches don't stick!
I have not slept well for the past 4 nights because of my hip pain and the MP. So, I'm thinking about asking my neurologist for Ambien! Ridiculous!
Susan

susancook
08-22-2012, 03:36 AM
Received a call today from the pain management MD. I have an injection of the lateral cutaneous femoral nerve on Wednesday! I am really excited!
Susan

susancook
08-26-2012, 03:18 AM
I had the injection of steroid by the second MD that tried to find the nerve via floroscopy. So far, I have little pain relief as the L hip still burns and is numb and I get electric shock sensations. Maybe it just takes time....
Susan

susancook
09-11-2012, 11:29 PM
I had the steroid inj about 2 weeks or so ago and mostly have relief....awesome. I woke up this morning with electric shock pains and burning, much less than I had before, but still, I am disappointed that pain is returning at all and so soon. I sent an email to my doctor and by the end of the day, he will do another steroid injection on Monday at 5PM, no doubt after the office closes. Great! The skin on my hip still feel rubbery with no sensation. Weird. I asked my neurologist how long the steroid inj should last and I got the "it varies". So, maybe after this second inj, that's it? I wish. Susan

susancook
10-05-2012, 08:13 AM
I had the second injection of steroids and lidocaine [or something else to numb?] of the left lateral femoral cutaneous nerve under fluoroscopy. The procedure is minimally painful. I have no pain now! My L hip is still completely numb, but I am painfree!!!! Thank you Dr. Kafrouni!!!! Susan

rohrer01
10-05-2012, 10:37 AM
Received a call today from the pain management MD. I have an injection of the lateral cutaneous femoral nerve on Wednesday! I am really excited!
Susan

Sometimes I think we are a sad bunch of people. Who else would be excited to get injections into their spines?! I, too, get excited because it means pain relief. I haven't gotten the same excellent results with last weeks injection that I had hoped for. Maybe it will take a little more time.

Take care.

susancook
10-06-2012, 08:20 AM
It is sort of ironic that we seek such procedures. In the lateral femoral cutaneous nerve inj, the MD injects under fluoroscopy to an area in the very lower abdomen near the hip. He kept seeing, "I see the nerve well" amd I looked and all I could see were layers of tissue. It was magical for me since the procedure eliminated 98% of my pain from MP. My hip is still rubbery and numb....which is really weird.....but painfree.

The denervations that I had were extremely painful. The idea of cauterizing back nerves [twice at each of 6 thoracic spots] sounded pretty scarey and I was worried that I would smell my flesh burning or that they might "miss" and oopppss! you're paralyzed. I told the MD that I wanted her to do it and not the "house staff" [it's a teaching hospital]. The fellows are slow as they are learning, but when the procedure is so painful, I just want to get it done! As painful as it was, "10", I would do it again to get this kind of relief.

Best of luck with your pain relief. It does take a while to get max benefit and sometimes it takes a few times with the same procedure.
Susan