i am tired of hurting
 

This is my second attempt at posting a message, so I apologize if my story gets posted twice.
I was diagnosed with MP 1 year ago, although I have been suffering with it for about 6 years. In the beginning it was mild pain worse with standing or sitting for long periods of time. Also I experienced an embarrassing symptom, which is probably why I did not discuss it with a dr. sooner, but I would experience severe thigh pain before having a bowel movement. Does anyone else experience this?
My pain gradually got to the point of being daily with no relief. Then the numbness began in my thighs. I describe it like the numbness after a trip to the dentist. I finally discussed with my MD and after several tests and appointments, my 2nd neurologist diagnosed me with MP and pudendle nerve entrapment. I have been treated with several rounds of oral steroids which have helped for 2 weeks at a time only. I refuse to take anymore because the side effects of the steroids are not worth the limited relief I get.
I have also taken several different anti-inflammatory drugs with minimal relief.
What I have found is that pain meds like ultram or lorcet help with the pain on the really bad days. I had these prescriptions left over from other reasons. Do others of you take pain meds like these and get relief? Are your MD's willing to prescribe them? My MD has never mentioned them and I feel that he does not think they will help because this is nerve pain.

He has mentioned trigger point injections. Has anyone tried this? Does it help?

I am relieved to know that there are others who know what this is like, but at the same time I am sorry others are suffering with this. I feel like people think I am crazy when I try to describe this to them. I am so tired of hurting.

To your legs hurt?
How are you doing now? How come nobody ever post here? Is there a new board that everybody is posting on? I have MP and I am not heavy I am 5'8 and 130, I asked the doctor why this happened and he said it was just one of those things, I was the "lucky" one I guess. I have a spinal cord stimulator for my upper body for another problem that doesn't work that great,and I was thinking of having the leads moved down, for pain in my leg. I hope to see more people posting.
Hugs
Bonnie

it has been a while since I have been on here. I have about given up on being pain free. I have seen many neuros because each one thinks I have something different. I do now know that I definitely have MP. I have also been able to isolate where the nerve impingement is. My spine/sacral area where the nerves originate. I went to a great chiropractor and although he could not get rid of the pain -- I could finally feel that it was starting at the spine. (i believe there are 3 spots the nerve can get pinched) so at least now we know where it is coming from. I take ultram 100mg 2/ day to stay at a tolerable pain level for work and taking care of my kids, but would love to find something to take the pain away. I don't know what other medicines people have tried. I could not tolerate neurontin-- I was a zombie on it at just 900mg and it did not change my pain. My md has mentioned topamax. Have you tried it? I also have wondered if epidural injections would be effective. I just know I don't want to live like this the rest of my life.
Hope you are doing well.
Alison

Recent Diagnosis of MP
 

I never realized so many people are affected by MP. Am currently experiencing pain, tingling, numbness in my right thigh, the pain is becoming more and more severe daily. I'm taking vicodin for pain, most often 2 pills at bedtime gives me some relief. Was given Lyreca to try, but after reading the side-effects, was too nervous to take it. After reading all the MP posts, I've decided I should try the Lyreca in hopes of some relief. It sounds as if there is no easy fix, but I'm really glad I found NeuroTalk because I've already learned what I'm dealing with, which is more info then my doctor has offered me so far.....time to switch docs! To those of you suffering with MP, I say fight on, persevere, hopefully you'll get relief sometime in the near future!!

treatment possibility for your MP
 

I recently read your post regarding a nerve block for meralgia paresthetica. I am a Harvard-trained plastic and peripheral nerve surgeon and also use nerve blocks to help in the diagnosis of this condition. However, in my hands, the nerve block is as diagnostic test, not a treatment modality. In other words, if the physical exam suggests MP and there is a positive Tinel sign on physical exam, that to me is a sign of peripheral nerve compression (just like carpal tunnel syndrome). If the patient responds positively to a nerve block they are a candidate for a decompression procedure to hopefully give them more permanent relief. This procedure is done as an outpatient and often takes less than two hours. As you know, meralgia paresthetica (compression of the lateral femoral or lateral femoral cutaneous nerves is a condition which results in a lot of anterior and lateral thigh (sometimes buttock) pain. Most people do no know this it can be very successfully treated with decompression surgery. It is a procedure I have performed on more than one occasion. In fact, I presented my results with this very procedure at the California Society of Plastic Surgeons Meeting last May. In that series of patients, the pre-operative pain intensity score was 9.4/10 and post-op was only 1/10.

relief
 

I suffer with the meralgia paresthetica condition due to a care accident.
The seat belt caused my nerve to be pinched. I have tried Lyrica and
numerous creams for relief, but no luck. Where do you practice.
I am in Louisiana.

Living in Canada- extreme MP pain
 

I had to go to the emergency ward at my local hospital, because I had so much pain in my right thigh, they told me to come back the next day for a ultra-sound, I had just come back from a trip and thought that I might have a blood clot in my leg. I did go back the next day and they told me I did not have a blood clot, and that it was probably just a pinched nerve, and not to worry. I have not slept for more than 3-4 hours a night in the last 1 1/2 weeks, I did some research, and I am convinced I have Meralgia paresthetica. Is there any Canadians on this board that are dealing with MP? The Canadaian health plan SUCKS!!! ( get ready Americans! it is going to get very UGLY) I know once I get to see my doctor it will be 6 months before I will get to see a specialist. Is there anything I can do myself to eleviate the pain ( beers not working ).

Rottonron

This is my first time posting, I have had mp for about 8 yrs now. Doc said it was due to scar tissue from c-section and hysterectomy surgery. I have been to pain specialist had injections and nerve blocks but they did not work. I went back to my family doc and i currently take 2 60mg morphine and 4 7.5 percocet a day. Some days i dont need as many some days i do. I also take magnesium vitamins they help alot. I dont know how people who arent on pain meds take the pain. Its almost unbearable. I hope this helps.

I have had undiagnosis MP for 15 years. I have not suffered from the pain for the past 3 years, and finally diagnosed a few months ago.

If I stay sedentary Lyrica works great, if it is not, you are not taking enough, Taking More Causes Less Side Effects So when your doctor says take more gabalin (Neurontin) or pre-gabalin (Lyrica) they are not crazy. Taking 600mg of Lyrica is not uncommon and safe. If you feed drugged at 75-100mg of it, take more, it means you are not taking enough! Most people complaining about this medication never took enough to be theraputic. 2700-3600mg of gabalin is considered theraputic dosage for MP, anything below that can give you what I call chronic Drool syndrome.

Now that I've had some relief from Injections, and fully understand what is causing the pain, and what the flare ups are caused by, I can now exercise and move around much more. Deep Water Aerobics is a miracle for me. The Arthritis Foundation has $1 classes weekly at most YMCA's and other places. My Rec Center has a Lazy river that is mostly used for Water Walking. Water also calms the anxiety and depression, the root of suffering from the pain.

As a man, I tried lidoderm patches years ago and thought it was the most evil torture ever! I now shave my leg, and Lidoderm is the #1 way I reduce the pain when I am active or having a flare up.

Taking Opiods and morphine over a few months will increase your pain levels and anxiety which will cause you even more pain. Stay away from Opiods and Morphine on a daily basis, save these for the flare ups.

If you tried everything and nothing works, there are 2-3 clinics around the world that have intensive programs to manage your life with pain. The Pain level is reduced to a tolerable level, it works, and works well. I can't post links yet. but search on the Cleveland Clinic, Chronic Pain Rehabilitation Program. If you want a chance of getting back control of your life, this is the program. 5 days a week 8 hours a day under direct doctor care. Mayo Clinic, and there is one in Indiana. The American Chronic Pain Association was founded by patients of the CCF program. They have meetings in cities all over the world.

This week I go to the peripheral nerve center at the Cleveland Clinic. Like the doctor said above the injection removed a lot of the pain. Fingers crossed I can get perminate relief.

Get out of the house, move around, do something fun. Agoraphobia and Social Phobia run rampant with MP. It hurts to move, and if I move for too long it gets worse.. so Getting trapped in so much pain out in public scares the crap out of people with MP.

Rob.

Hopeless
 

Loved your last line... beers not working. That made me laugh out loud. Lidoderm patches are a modest help. I have tried everything. Ready to either cut my leg off myself or have the surgery to try to get relief. Yes, we Americans are in for BIG trouble with ObamaCare. Guess I better have the surgery quick. Good luck to you. Wishing you relief. Wishing ALL of us relief.

Hopeless
 

I have tried everything short of decompression surgery. Is the surgery always successful? Is it outpatient surgery? Where is the incision made? At the hip or the abdomen? Can it be done under local anesthesia or must one have general anesthesia?

Yes, getting trapped in public is a problem. I have had to sit on the floor in the aisle at the grocery because the pain was so intense. I have become a shut-in. I had to quit work due to the pain. I only leave the house to go to the doctor or grocery and pharmacy.

MP pain only at night
 

Hi All,

After being diagnosed with MP early 2014, I realised that I first experienced it back in 2005. It only happened once in a while, but then in late 2013/early 2014 the MP pain became so regular and unbearable, that I went to my GP who sent me to get an Ultrasound guided cortisone injection of the lateral femoral cutaneous nerve in my right hip.

Unfortunately I experience pain in both thighs while sleeping, but it seems it only happens when I am laying on my back. I start to get the tingling feeling in my thighs if i'm laying in bed watching TV, but will roll onto my side and the pain goes away. While i'm asleep though, I obviously have no control over how I lay, and will regularly (every second night on average) wake with excruciating pain in one/both thighs, so-much-so that I can only describe it as though someone is slicing my leg open to the bone with a blunt knife.

I have had one dose of cortisone in my right hip, and two in my left, with noticeable improvement for short to medium duration (2-6 months). I am actually going to see my GP tonight for another issue, but will be asking for another referral to get the guided cortisone injection in my right hip again as I have recently been experiencing severe pain again.

There was very little information about this condition available (or provided by my doctors), so this forum was quite encouraging to find. One thing that I will be hoping to improve is my weight, as everything I read says that obesity and tight belts/clothing contributes to the condition. Unfortunately, I can't avoid wearing belts due to my work attire, so I hope that working towards losing 20kg (45lbs) will help reduce the MP.

I have been on Lyrica & Endep, along with anti-inflammatories, which doesn't seem to have helped, so I'm wondering if there are any other suggestions (aside from weight loss, nerve blocking injections & medication) that anyone might have?

Also, does anyone else only experience MP pain when laying on their backs?

Suffered MP 4 years now..had lfcn decompression in Jan in Hamilton Canada by top leading nerve specialist with no results. Nerve was decompressed in 3 different areas and the pain has not subsided. On way too many meds, tired of listening to the same story from my dr....tolerance is very thin. Glad to have found this forum...just knowing I'm not alone is a blessing.

Hi Mando,

Welcome to NT but so sorry to hear MP brought you to us.

You are NOT alone but you may find this forum a bit inactive because many MP sufferers have it on a temporary basis. But then, there are a few of us that suffer with it for a lifetime.

If you ever want to chat about it, feel free to contact me.

Most of the people have come and gone but there are a few of us that remain.

One of the posters that left due to recovery, kept in touch with me after they had their LFCN removed. It took at least 6 months before ALL symptoms were gone. I guess it is like when one has an amputation and phantom limb pain of the missing limb.

The GOOD news, this person, has now totally recovered, is back to living a VERY full life and has resumed all the activities that MP had taken away.

Since your decompression was recent, I would not give up hope just yet. What does your doc say?

I know I would feel like the surgery was a failure if I still had pain after going through a decompression procedure, but based upon what I was told by others, and my own personal experiences (not with decompression or removal), some treatments do take time to produce the desired effects.

We are here if you wish to keep in touch. Welcome aboard but again sorry to hear of your suffering. You are NOT alone.

I also had my LFCN cut. after 20 years of dealing with MP. You need to use lidoderm patches. after shaving your leg.. it is what works. If you do not shave where that patch is, it is torture, the LFCN is the hair and the surface skin only, no matter how deep it feels in your leg. You need to deal with the agoraphobia now, the panic disorders from being isolated is making the pain worse, you need a good CBT at this point. Learn Biofeedback, and get in the pool and do Deep water Aerobics to get the weight off your hip so you can build up strength in your core! IT is the only thing that is going to make you feel better, even if they cut the nerve you will not feel better until you strengthen the core. and get the Hip Flexor out of atrophy and you can do it without putting pressure on the LFCN. You have to DO SOMETHING! Sitting there taking medicine can not fix this condition, surgery will not fix it either. I highly suggest contacting the Chronic Pain Rehabilitation Program at the Cleveland Clinic. They treat people with MP from around the world with a 3 week program to give you back control of your life.

I'd like to just add that Aspercreme is now making an OTC lidocaine patch. It is 4% however, whereas the RX Lidoderms are 5%.

But the Aspercreme ones are affordable.

example:
Aspercreme with Lidocaine Patch, 5CT - CVS.com

I found with my years long severe MP, and daily use for 2 weeks put me into a remission. As long as I don't use heat on that leg/hip area, I stay in remission. Heat however triggers the nerve to fire again. So I rarely use my Lidoderms anymore. I never expected a remission of pain, but I guess it is possible for some people.

Quick Query Please
 

Hello, I have just joined this site to get some info for my daughter, she is 16 and has MP diagnosed since 12. She also has apophysitis of pelvis which appears to be slow to settle despite her being 16.5 years old now. The combined problem has led to her stopping all sports since diagnosis and is severely affecting her life, we were told at initial diagnosis that it would go away as soon as her growth plates were formed but that's not the case at all. She has always described her pain as being consistent with MP and had a positive nerve block aged 12 also. At this stage, I'm no longer happy to accept this reduced quality of life for her, it stops her taking part on days out, holidays, trips away and anything which involves lots of walking/standing or impact activities. She is not happy to take medication and I can understand why, she initially was on the gabas and older TCA's and had all the horrible side effects too, her consultant is still treating it conservatively but I don't think this is okay at this stage in terms of her quality of life. My question is, is nerve decompression suitable at this stage and is that the same as severing the nerve ( I understand this is also an option as it's a superficial/ sensory nerve) and is this usually carried out by a neurologist or an orthopaedic surgeon? Thanks in advance.

Trouble with treating meralgia parensthetica
 

I was diagnosed over a year ago and getting help has been a nightmare. Recent physical therapy caused such pain I got stuck immobile in Walmart with a spasm. I told the therapist what the common treatment is and she got angry. She's the expert! Ha!

If you search YouTube you will find the common exercises of "nerve flossing" and yoga: 1/2 bridge, cat/cow and others. From what Ive read epidural, shots and surgery give temporary relief. Good luck.