Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I’m very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want – for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

@lioness

@richmond54660 Hi I just read your article . I have been toying with the idea of enzymes. I have low back pain nerve pain and knots in my thigh muscles. I believe the MFR would help and also the enzymes. I do have Nattokinase at home so will start on this I do a lot of research and use vitamins and herbals. I never used enzymes but think it will benefit me . Thanks for your article.

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@lioness, Good morning. Thanks for the post. Just wanted to let you know that MFR took care of the knots in the thigh muscle. Now my therapist checks those areas every week to prevent restrictions making their way back to hunt me down. Much gratitude to Amy and Sherry. They’ve got my back. Have a lovely day. Chris

Liked by daner54

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@richman54660

@skiah22 and @bkruppa and others. There were many suggestions for coping with sitting pain in old threads, above. Mine has gotten much better thanks to stretching, exercise, MFR and I found a therapist that used intense ultrasound while he does active release stretching. Recently, I've started taking some enzymes (serrapeptidase (biomedic labs) and Nattokinase (Doctor's best); both from Amazon) and these helped immensely. I believe these help the tissue remodel (compression from MFR isn't the only way to remodel the fascia – electrical (galvanic) stimulation, ultrasound, stretching, exercise can assist this process, too). However, I had a lot of stiffness and I do believe it is from deposits of fibrin in muscles, on nerves, on bursa, etc. My pain level (and stiffness) is way down after taking the enzymes I mentioned (on an empty stomach). If you are not on blood thinning medication already, it might be worth a try. That seems to be the contraindication. Also, for some reason 10-15% of Especially if you have stiffness, too. I believe that now I am mostly dealing with healing of tendons that attach to the ischeal tuberosities – hence I have some small sitting pain (which has been getting better over time). Here is a review I wrote for an enzyme product on Amazon:
Long story short I was having some myofascial pain (stiffness, sitting pain) in the legs, glutes, lower back. It’s been getting better thanks to various supplements (especailly Vitamin C with citrus bioflavinoids, quercetin / resveratrol, stretching and exercise). I also had plantar fasciitis in the feet in the past as well as some sciatica symptoms (which is due to some type of nerve compression / irritation somewhere along the nerve).

This helped along with taking nattokinase (200 U) and I worked my way up to 2 tablets of the Serrapeptase 3 times daily (one dose with the Nattokinase) Eventually, I’ll cut back to a maintenance dose and maybe use just 1 of the 80,000 U serrapeptase and 2000 U nattokinase.

While speculative, deposits of fibrin may be the culprit in causing tissue stiffness and improper tissue remodeling as you age. This may accompany (or possibly cause) conditions like plantar fasciitis, phlebitis (and some leg swelling), stiffening of the tissue – all things I am encountering. I noticed a decrease in sitting pain (i.e. less glute stiffness) right away within about four days of starting serrapeptase. On higher doses, I occasionally felt tingling in my feet while walking – but not in a painful way. More like the itching a healing wound might have. I had some areas near the ischial tuberosities that had dense areas that possibly were scar tissue-like (many years of martial arts with kicks, plyometric moves, hard landings probably contributed with this as well as possibly abnormal amounts of fibrin that were deposited on top of that as I aged – that was suggested to me by an injury massage therapist who specializes in aging athletes). Over several weeks, these became smoother and less ropey feeling. Prior massages including aggressive trigger point massage could not remove this / smooth this out. I’ve done all kinds of stretching, exercise and massage. These enzymes have been one of the most effective treatments in healing what I’ve got. Once I started on these enzymes I could feel the difference within a couple weeks. I could see some more recent scars that I have that were raised up appear flatter and remodel.

I generally research what I take and also read all the reviews from people taking these products and also scholarly articles. Based on what I’ve read, (and this is speculative – I can not state any of this as a universal medical certainty) it is quite possible that Serrapeptase can assist tissue remodeling, help remove / minimize scars / adhesions / help break up cysts, etc., including those that may irritate nerves, too. For many people, poorer healing may accompany aging. I believe this enzyme helps healing. I had no gastric irritation from either the 80,000 U version of the 260,000 U version of the enzyme. I was not recompensed in any way for this review. At some point, I'll drop down to a lower maintenance dose with the 80,000 U tablets, I suppose.

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Thank you for sharing all the information.

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@bkruppa Here is an article about Nattokinase. Bear in mind, it is mostly speaking of the food natto. Supplements are more concentrated. However, there is a reference trail in this paper (these two papers I posted aren't necessarily in the most top notch journals). However, Big Pharma is definitely not going to fund research on things like Nattokinase and serrapeptidase (serrapeptase) since they don't make money on these. These are supplements and they may have less side effects that some of the anti-clotting meds prescribed by MD's. Notice that this can possibly prevent clots from forming, possibly reduce atherosclerosis, lower blood pressure, etc. When taking supplements, I would recommend monitoring blood pressure. I do believe the only contraindication is if you are on anticoagulant medicines already. The recommended dosage may be near 2000 U once daily for Nattokinase. I believe this can be taken along with serrapeptidase.

Shared files

Nattokinase as antithrombolytic 10 (Nattokinase-as-antithrombolytic-10.1177_1177271918785130.pdf)

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I have numbness, needle sticks and the worst nerve damage on my left side! The pain is horrible, and no one seems to understand!! I can't sleep from the pain! I pray to get better !

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@resawaller

I have numbness, needle sticks and the worst nerve damage on my left side! The pain is horrible, and no one seems to understand!! I can't sleep from the pain! I pray to get better !

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Hellon resawaller, I have terrible pain on my left side too from my feet, legs, arms, neck, hands and can barely walk. My diagnosis is CIDP and small cell skin neuropathy. I start infusions on the 22nd. What helps reduce my pain are cymbalta, an opiate, advil, a little exercise and ambien to help sleep. Maybe see a pain doctor to help address your pain. I feel badly for you and wish you less pain. You probably are but be aggressive in seeking medical help to stop the pain. Do you know why your having so much pain?

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I developed pudendal and obturator nerve entrapment on one side of the vagina immediately after my hysterectomy. It too a few years and doctors to finally find an ob/gyn specialist who operates to relieve the entrapment: Dr.Mark Conway, Merrimac, New Hampshire. He is one of only several doctors in the USA who specializes in this area. I had two surgeries over two years and have gone from an "8" level pain to a "3" in just one tiny area. I apply lidocaine cream every night to this small area to make it less sensitive. This doctor was my gift!! I still see him every year.

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@tjp4

Hellon resawaller, I have terrible pain on my left side too from my feet, legs, arms, neck, hands and can barely walk. My diagnosis is CIDP and small cell skin neuropathy. I start infusions on the 22nd. What helps reduce my pain are cymbalta, an opiate, advil, a little exercise and ambien to help sleep. Maybe see a pain doctor to help address your pain. I feel badly for you and wish you less pain. You probably are but be aggressive in seeking medical help to stop the pain. Do you know why your having so much pain?

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Thank you so much for replying to me ! I feel so alone with my pain ,I'm on lyrics, and oxycotin and it is not helping much! My doctor wants to do surgery for Chianti, but I dnt trust him ! He says it want help my nerve damage, only my headaches. I need my nerve damage fixed! I'm in hell and having a hard time taking care of my husband and grandson, if anyone has some advice please help

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@skiak22

Hi all. I'm a new member and I have read all the posts concerning the pelvic pain. Mine started 9 years ago from no apparent reasons and I've been through all the procedures that everyone has described. I've been standing up for these 9 years trying to find a specialist that knows how to deal with this problem. Sitting is very painful but one thing that no one has mentioned in their posts is laying down is just as painful if not worse. Anyone out there that has both problems? The only way I can get any sleep is by taking prescribed medication. Otherwise, I'm awake all night long and of course the pain is there all night long.

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Have you seen a pelvic floor specialist? I had pudendal nerve pain after a surgery on my pelvis and for months sitting, laying, and standing were extremely painful. I saw a massage/ active release technique specialist every week who worked on all of the tight muscles outside my body. I am now seeing a pelvic floor specialist who is working on the internal pressure/trigger points that need to be released . I suggest both of these as they are helping me. God Bless!

Liked by richman54660

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@bkruppa

My wife has had pudendal nerve pain for 8 years. Initially the pain was due to a bout of shingles. However, during the recovery period I believe that something new kicked in which I believe is PNE (Pudendal Nerve Entrapment) as the symptoms are identical and to me it makes sense. The pain areas in the pelvic region are exactly where the pudendal nerve goes. PNE normally is resolved by relief of any muscle or scar tissue that may be entrapping the pudendal nerve. There are many facilities around the country that treat this condition and the treatment is massaging, dialators, etc. of the muscles that could be entrapping the pudendal nerve. My wife gets some relief from this kind of treatment but it is temporary and it only helps some. We have been to many facilities including the Mayo Clinic but the doctors don't seem to recognize PNE as mostly they want to use pain meds as a course of action. We want a solution. We have tried nerve blocks in the caudal area as well as lower in the buttocks with zero pain relief.

There is a muscle group that entraps the pudendal nerve and that is the sacrotubernous ligament which can easily entrap the nerve. There are specific massaging techniques that can relieve this pressure.

Given that my wife's pain varies doctors have agreed that the nerve is not damaged. This is good news as apparently there is no treatment for a damaged nerve.

We have looked into neurostimulators. My main concern is affect on other nerves in the probe area as well as other more serious issues. I contacted two companies about their devices and neither company has any data on helping pudendal nerve issues so we would be on our own as far as what to expect. However, I had heard about paralysis as a possible side affect. Again I contacted both companies regarding the frequency of this issue but neither would respond to my requests. That was unfortunate. Then we find that a neighbor down the street from us was paralyzed due to this procedure. Now I don't want to scare people out of going through this procedure as this is a case of one out of ……………I don't know. A 100. A 1000, A 10,000. I just don't know. A doctor at Mayo told us that 20% of these need to be readjusted (surgery) within 5 years and over time they become less and less effective. Given all of the above we chose not to go through with the procedure.

Another neuro doctor is suggesting that the pain is due to inflammation of root of the pudendal nerve which resides at the spinal cord where it connects to the spinal column. Here they want to inject steroids to reduce the inflammation. Results may be nothing, good for two weeks, two months,????? They can't predict. IF this is the source then my choice would be to determine why it is inflamed at this area and resolve this issue rather than throwing meds at it.

We are also looking into inversion tables as a source of relief. The theory being that maybe her spine is shrinking due to aging and therefore entrapping the pudendal nerve. Also since she favors sitting on one side to relieve the sensitive side maybe the spine got reformed and therefore entrapping the nerve. So we will give it a try to see what happens. We have also tried acupuncture, all the suggested vitamins for neuropathy, etc., but with no success. I read a lot of articles where sugar can cause nerve pain issues to heighten so we will be doing a sugar free diet for a couple of weeks to see what happens. MRIs show nothing but a dual frequency laser treatment has helped some but for only a day or two. My wife is on gabapentin and CBD oil. CBD oil takes some of the edge off of the pain so she uses it frequently.

Scar tissue may be another cause of entrapment. Women who have an an episiotomy during child birth can develop scar tissue in this area which is close to where the pudendal nerve travels. Haven't found any doctors who buy into this theory but a lot of my wife's pain emanates from this area so I am suspect. A PT friend of mine says that when a rotator cuff is torn in the shoulder scar tissue can form around a nerve and cause pain. In these cases surgery has helped release the entrapment. However, the nerves in this area are not complex nerves like the pudendal nerve which I guess is one reason most doctors don't want to do anything invasive since they may end up causing damage to the nerve which would result in even more pain.

Sorry for the long post. However, I wanted to present everything that we have done. I would like to hear from the rest of you about what you tried and what were the results.

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Very good post with details and I hope I can give you a little bit of help with my PNE experience. I have suffered from this debilitating pain since I was 40 years old. I am about to turn 58. I was never able to get an answer about the cause of my PNE. Just woke up one day and there it was. I thought I was going to die from the pain. I tried everything I could come up with and everything you mentioned in your post. First, let me say, do not get a Stimulator Implant. I got a Medtronic one years ago. For the pudendal nerve the trial for the implant is very difficult. There are too many wires and equipment outside your body during the trial that keep you from moving normally. In order to know if it works, you must be able to mimic your everyday life and with that trial it is impossible. I was so desperate, I bit the bullet and had one put in. First thing is, it is a very difficult surgery because you have to be awake and alert to be able to tell the surgeon where you feel the best place for the lead wires to be placed (there are four). The issue I had is you have the control of the level of stimulation you receive and because the pudendal Nerve is located where your body bends a lot it was totally impossible to find a setting that worked because as soon as you moved positions the need for more or less power was immediate. If the need was for less then the pain of too much electrical current was brutal until you could grab the controller and turn it down. I had that a long time ago and I am told the newer technology has made them better. I still think because of the location of the nerve it isn’t a good answer. I had a zillion injections. I had bilateral pudendal nerve entrapment surgery by a specialist in Minnesota (who I am sure would be retired by now). I live in Kentucky and getting that done was a huge ordeal. I made five trips there and the trip for the surgery I had to stay for a week. After, I had to stay on my couch for six weeks (which I didn’t because I am a commercial office designer and general contractor of office space and I had work to do). After going through all of that it was a total failure. I also took narcotics for years and gabapentin (which I still take). I got up to 70 mg of OxyContin a day and it wasn’t doing much. Narcotics, as you probably already know, don’t do that much for neuropathy. I ended up having the Stimulator removed after it stayed in my body turned off for several years. Then I got a Medtronic implanted medication infusion pump system about ten years ago. In order to qualify for that I had to break my dependency on oral narcotics (which was one of the hardest things I have ever done) and stay off of them for six weeks. The reservoir is implanted in your stomach on the left and tubing is tunneled around and attached to your spinal cord. My pump contains morphine and Marcaine. The difference is it delivers a very small amount that basically sits in your spine and blocks the pain signals coming from the pudendal nerve to the brain. It is totally different than taking oral narcotics that get into your entire system and your brain. There is no complicated controls the user has to adjust. It is completely contained in your body and any medication level changes are done by your doctors office. I have to get mine filled about every 70 days (refills are quick and just a needle stick into a port in the actual pump). The pump itself took some getting used to. Just having it in my body and I am fairly thin so it was a big adjustment. The pump (but not the tubing) has to be replaced about every six years. I am on my second one and due for a third in sixteen months. I will tell you it isn’t a complete fix but it took me from wanting to jump off a building to being able to have a fairly normal life. I still have times that the pain is worse than other times but I have just learned after all these years a lot of the ups and downs have to do with stress, too much sitting, squats (yes I am able to go to the gym and work and do lots of things). You just have to find your own irritants and make lifestyle adjustments. I still supplement with gabapentin. Sometimes I have bad days and sometimes I hardly notice it’s there. You also have to learn to push the pain to the back of your mind. Dwelling on it causes stress which causes it to be worse. My life will never be pain free but compared to what it used to be the pump system saved my life. If you want to talk to someone about it, find a good pain clinic. If you are near a good university with a good pain management department I would recommend that. I go to the University of Kentucky Interventional Pain Clinic for both the pump management and the surgeries. If you have any questions I am happy to answer.

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@jefjr

New member and first response here. I have had this condition (pudendal nerve entrapment) since 2012, and I have seen a number of specialists who have conducted all of the studies you mention and performed all of the procedures you mention. The end result, I'm sorry to say, is that the pain persists in much the same way as it does for your wife. I am male, and most of the specialists I have seen deal with this issue in female patients, which makes diagnoses and treatment even more difficult. For pain, I have been prescribed Diclofenac 75mg twice daily since my first (non-related) cervical spine surgery in 2009. The medication does not affect the pain in the pudendal region, and at this point my new primary care physician at Mayo is concerned about long term use in general.

I can certainly empathize with folks who have said that this condition is a 'lonely' problem, both because it is more rare in the general population and there apparently is not much data for physicians to access. It is also very difficult to have a conversation about the issue with anyone other than a physician or a family member, so I typically 'suffer in silence' most days, and feel grateful on the rare occasion when the pain is negligible for a day or so.

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Have you discussed an implanted medication infusion pump (mine is a Medtronic). It’s best to go to a good Interventional Pain Management Clinic at a university or good hospital. I have suffered like you mostly in silence for 19 years and tried everything including invasive surgery. The pump is the only thing that kept me from jumping off a building. It doesn’t completely relieve the pain but it makes it manageable most of the time. You learn your own irritants over time. Stress is a big one. The pump requires no outside controls and lasts about six years. I have to get a refill about every 70 days. It contains morphine and Marcaine but does not get into your system like oral narcotics. It drips a minimal amount in your spinal fluid that acts as a block to keep the pain signals from going to the brain as much. I am on my second one (had pump for about ten years) and also supplement with gabapentin. Not a perfect fix but I have tried everything I have read on this forum and then some and it is the only thing that gave me anything close to a normal life back. Your comment about suffering in silence broke my heart and I had to reply because that is me. Suffering in silence for 19 years.

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@palmorejs

Very good post with details and I hope I can give you a little bit of help with my PNE experience. I have suffered from this debilitating pain since I was 40 years old. I am about to turn 58. I was never able to get an answer about the cause of my PNE. Just woke up one day and there it was. I thought I was going to die from the pain. I tried everything I could come up with and everything you mentioned in your post. First, let me say, do not get a Stimulator Implant. I got a Medtronic one years ago. For the pudendal nerve the trial for the implant is very difficult. There are too many wires and equipment outside your body during the trial that keep you from moving normally. In order to know if it works, you must be able to mimic your everyday life and with that trial it is impossible. I was so desperate, I bit the bullet and had one put in. First thing is, it is a very difficult surgery because you have to be awake and alert to be able to tell the surgeon where you feel the best place for the lead wires to be placed (there are four). The issue I had is you have the control of the level of stimulation you receive and because the pudendal Nerve is located where your body bends a lot it was totally impossible to find a setting that worked because as soon as you moved positions the need for more or less power was immediate. If the need was for less then the pain of too much electrical current was brutal until you could grab the controller and turn it down. I had that a long time ago and I am told the newer technology has made them better. I still think because of the location of the nerve it isn’t a good answer. I had a zillion injections. I had bilateral pudendal nerve entrapment surgery by a specialist in Minnesota (who I am sure would be retired by now). I live in Kentucky and getting that done was a huge ordeal. I made five trips there and the trip for the surgery I had to stay for a week. After, I had to stay on my couch for six weeks (which I didn’t because I am a commercial office designer and general contractor of office space and I had work to do). After going through all of that it was a total failure. I also took narcotics for years and gabapentin (which I still take). I got up to 70 mg of OxyContin a day and it wasn’t doing much. Narcotics, as you probably already know, don’t do that much for neuropathy. I ended up having the Stimulator removed after it stayed in my body turned off for several years. Then I got a Medtronic implanted medication infusion pump system about ten years ago. In order to qualify for that I had to break my dependency on oral narcotics (which was one of the hardest things I have ever done) and stay off of them for six weeks. The reservoir is implanted in your stomach on the left and tubing is tunneled around and attached to your spinal cord. My pump contains morphine and Marcaine. The difference is it delivers a very small amount that basically sits in your spine and blocks the pain signals coming from the pudendal nerve to the brain. It is totally different than taking oral narcotics that get into your entire system and your brain. There is no complicated controls the user has to adjust. It is completely contained in your body and any medication level changes are done by your doctors office. I have to get mine filled about every 70 days (refills are quick and just a needle stick into a port in the actual pump). The pump itself took some getting used to. Just having it in my body and I am fairly thin so it was a big adjustment. The pump (but not the tubing) has to be replaced about every six years. I am on my second one and due for a third in sixteen months. I will tell you it isn’t a complete fix but it took me from wanting to jump off a building to being able to have a fairly normal life. I still have times that the pain is worse than other times but I have just learned after all these years a lot of the ups and downs have to do with stress, too much sitting, squats (yes I am able to go to the gym and work and do lots of things). You just have to find your own irritants and make lifestyle adjustments. I still supplement with gabapentin. Sometimes I have bad days and sometimes I hardly notice it’s there. You also have to learn to push the pain to the back of your mind. Dwelling on it causes stress which causes it to be worse. My life will never be pain free but compared to what it used to be the pump system saved my life. If you want to talk to someone about it, find a good pain clinic. If you are near a good university with a good pain management department I would recommend that. I go to the University of Kentucky Interventional Pain Clinic for both the pump management and the surgeries. If you have any questions I am happy to answer.

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@palmorejs, Good afternoon. Thank you for such a thorough explanation of your experiences with the Medtronic pain pump.
As I read your post, I realized that I might be headed in that direction. I no longer have many pain free moments. There is always something going on to remind me that I am walking pain machine. Those damaged nerves from Small Fiber Neuropathy (SFN) only know how to send back pain signals.

I have a dear friend, a pianist, and piano teacher, who had a pump installed so he could keep playing. His body is quite deformed from multiple surgeries. For years we did yoga together. He lost control of his vehicle and hurt another person….not bad but bad enough to be concerned. The DMV took his license away telling him he could no longer drive with the pump. Tough choices.

May I ask if you have ever had an encounter with medical cannabis and if so…..how was your experience? The medical cannabis industry is developing so fast. You need a coach to make sure the choices are appropriate for your condition. So….between medical cannabis tinctures and the myofascial release massage (MFR)……I seem to still experience joy and happiness every
day. May you be free of suffering today. Chris

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@artscaping

@palmorejs, Good afternoon. Thank you for such a thorough explanation of your experiences with the Medtronic pain pump.
As I read your post, I realized that I might be headed in that direction. I no longer have many pain free moments. There is always something going on to remind me that I am walking pain machine. Those damaged nerves from Small Fiber Neuropathy (SFN) only know how to send back pain signals.

I have a dear friend, a pianist, and piano teacher, who had a pump installed so he could keep playing. His body is quite deformed from multiple surgeries. For years we did yoga together. He lost control of his vehicle and hurt another person….not bad but bad enough to be concerned. The DMV took his license away telling him he could no longer drive with the pump. Tough choices.

May I ask if you have ever had an encounter with medical cannabis and if so…..how was your experience? The medical cannabis industry is developing so fast. You need a coach to make sure the choices are appropriate for your condition. So….between medical cannabis tinctures and the myofascial release massage (MFR)……I seem to still experience joy and happiness every
day. May you be free of suffering today. Chris

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Hey Chris, I have not tried medical cannabis. I don’t think it is legal in KY. I did try CBD oil but didn’t notice a difference. I gave it plenty of time to see and it didn’t do anything. I am so glad you have relief and happiness! Joan

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@palmorejs

Hey Chris, I have not tried medical cannabis. I don’t think it is legal in KY. I did try CBD oil but didn’t notice a difference. I gave it plenty of time to see and it didn’t do anything. I am so glad you have relief and happiness! Joan

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Hi Chris, Wanted to add a comment after reading your message. To add one of the goals and advantages to a pain pump versus oral pain medication. Prior to getting the pump I was taking a large dose of oxycontin every day. In order to qualify for a pump I had to detox from my dependency on oral narcotics and wait six weeks (which gives your brain cells time to return to normal as they are different when on oxy). The reason for this and one of the purposes of the pump over oral pain meds is the small amount of medication that is delivered daily. My pump (via implanted tubing that is sewn into my spine) delivers .328 mg (yes there is a . in front of the 328). The meds are designed to sit in your spinal cord and block the pain signals being sent to your brain. I'm not a doctor but I think that is how it works. In other words, the dose is so small it doesn't give you the side effects of oral pain medication. I read about your friend not being able to drive and wanted to send this additional comment. I have had a pump for about ten years and have driven and worked without incident. I was given no restrictions on driving from the doctor who manages my pump. In addition, I don't have the brain fog I had when I was taking the oxy. My dose, even as small as it is, will show up in a drug test. Hope that makes you feel better as you consider where to go from here. All the best, Joan

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@lioness

I also have nerve entrapment from lower back to growth n and use ice bags that help I have Gabapentin for it but that doesn't work 24/7 we are all pain warriors here

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Hi, my name is Linda, I have never heard of nerve entrapment. I am suffering and need help bad. My nervous system has been damaged very badly from Lymes disease. I now have neuropathy, I am awake most of the night. Yesterday ,I kept dropping things and my hands and arms are really bad.i am not functioning well at all, getting worse each day. Doctors around here have little knowledge of this. I have this from my head to my toes and cannot stand this pain . I feel as though I have stuck my finger in a socket and have a steady severe buzz. Does this sound like what you have?
Seeking help please! Thanks.

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@linedancer18337

Hi, my name is Linda, I have never heard of nerve entrapment. I am suffering and need help bad. My nervous system has been damaged very badly from Lymes disease. I now have neuropathy, I am awake most of the night. Yesterday ,I kept dropping things and my hands and arms are really bad.i am not functioning well at all, getting worse each day. Doctors around here have little knowledge of this. I have this from my head to my toes and cannot stand this pain . I feel as though I have stuck my finger in a socket and have a steady severe buzz. Does this sound like what you have?
Seeking help please! Thanks.

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@linedancer18337 Nerve entrapment happens when a nerve gets compressed by something. Nerves travel through some very small spaces in the body and pass in-between denser things. The fascial webbing in the body also gets tight and can put pressure on anything, and added to that is the ergonomics of if everything is aligned as it should be. Inflammation of tissues enlarges them and can further decrease space for the nerves.

My experience with nerve entrapment is with carpal tunnel syndrome, thoracic outlet syndrome, and cervical spinal stenosis, and all are entrapments of nerves, except the stenosis which is compression of the spinal cord. Nerve entrapment usually follows the specific path of the nerve and can express pain anywhere along that path, but not necessarily where the problem is. An example of that would be if there is compression where a nerve exits the spine, the pain can be felt in the body. I've experienced that when a spinal injection caused electric shock type pain in my fingers because the pressure of the fluid had nowhere to go. I was able to trace the path of the nerve up my hand and arm by touching it and it caused an electric shock where I touched. This is a nerve over reacting and feeling pain for something that shouldn't hurt because of compression. When my spinal stenosis got bad enough, I could bend my neck and send an electric shock down my entire body. If you are experiencing something like that, you may want to get some MRI imaging of your entire spine and see if your spinal cord has enough space around it to move properly. The spinal cord can become "tethered" when bone spurs, ruptured discs, or ligaments are impinging on it, and if a vertebrae moves and slips past another, that problem gets worse. This kind of problem can sneak up on a person years after an injury like a whiplash, and you only realize how bad it is after symptoms begin. For me that was 20 years after a whiplash, and spine surgery at Mayo fixed that problem. Cervical stenosis can cause pain anywhere in the body, and my first symptom of spinal cord compression in my neck was ankle pain when I turned my head that I could turn on and off with the position. That progressed over 3 years time with the growth of bone spurs to where I could not turn the pain off, but I could change where it went with my neck position, and at it's worst, send the electric shock down my body.

Your symptoms may be from Lyme or a combination of causes and you need to address each one to find the problem or rule it out. Lyme can mimic many different diseases because of where it settles in the body. Have you been treated for Lyme by an ILADS doctor? They are the group of physicians who best understand treating Lyme and the co-infections. Lyme can easily hide in the body behind bio-films where antibiotics can't reach it, only to emerge at a later date. Treatment of chronic Lyme may be needed over a few years time. The blood tests are also not always accurate. The Western blot test can miss Lyme with a false negative, and years later Lyme may be diagnosed. There is a documentary called "Under Our Skin" about Lyme disease that illustrates the issues and follows several patient cases and some recovered from severe disabilities after eradicating the infections.

Here are some links with information and one for the Igenex testing lab that has more accurate testing. Sometimes the doctors treat patients based in symptoms if their diagnostic tests are not good enough.

https://underourskin.com/

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/
https://www.ilads.org/research-literature/controversies-challenges/

Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf

https://iladef.org/education/lyme-disease-faq/
https://igenex.com/the-igenex-advantage/
https://www.lymedisease.org/lyme-basics/co-infections/babesia/

Lab in Germany https://www.arminlabs.com/en

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