Pain in the butt - Can't sit down

Posted by ecalderman @ecalderman, Nov 21, 2012

I have had very intense pain at my sitz bones for over 7 months and am unable to sit down. when I sit, it feels like I am sitting on two hot pokers or rocks and it is really unbearable. So, I have been standing for seven months. I’ve been to a couple of spine and pain management doctors, an orthopedist, a chiropractor, a neurologist, an acupuncturist, and a massage therapist. The original diagnosis was ischial bursitis but that ha not appeared on any images. I don’t have any issues with any of my lumbar disks. I’m in constant pain even when standing or lying down though those activities do not hurt as much as sitting. Has anyone heard of anything like this before?

@vklittle61

I too am suffering from chronic pain and I cannot sit down without being in pain. It will be a year in March 2019. I have been to the chiropractor physical therapy, orthopedic doctor received injections in my tailbone I do massages weekly I’ve been to a rheumatologist. The im still having pain in my butt or more like sits bones area! I need some help God please help me! No one can tell me what the problem is

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@vklittle61 please see my posts in pudendal nerve entrapment thread of this website. I had the same symptoms (still have a little sitting pain- but only a little). You probably have Myofascial pain and tension compressing nerves. Also, my lower lumbar DDD drives this. I had several posts describing books and ways of getting rid of this tension search for my comments to @bkruppa. Short version, stretching, rolling on Rollga / various balls to get rid of trigger points and the other things I mentioned. Very deep inspiration while stretching and other things will help – one good book with a practical aim is “heal pelvic pain” by stein. Please see my other posts. There were several detailed posts with things to try. My pain got way better. It might take several month but it can get better. Also, this is described in the book “a headache in the pelvis”. Good luck.

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@vklittle61

I too am suffering from chronic pain and I cannot sit down without being in pain. It will be a year in March 2019. I have been to the chiropractor physical therapy, orthopedic doctor received injections in my tailbone I do massages weekly I’ve been to a rheumatologist. The im still having pain in my butt or more like sits bones area! I need some help God please help me! No one can tell me what the problem is

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@vklittle61 If you are not familiar with myofascial release work therapy, you may want to look into this as it can treat lots of problems that conventional medicine has failed to treat. I do this for thoracic outlet syndrome, and have a lot of information in another thread here, so look at this link with lots of information (and a video by John Barnes who invented this therapy.) MFR has helped me a lot and I have done this for 4 years and even treat myself this way at home. This is in the Neuropathy discussion, "Just Diagnosed"
https://connect.mayoclinic.org/discussion/just-diagnosed-2/?orderby=DESC#chv4-comment-stream-header

Liked by wandamiller

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Omg thank u I am looking into this Monday and thank u a million times over! Glory to God I pray this is my answer

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@richman54660

@vklittle61 please see my posts in pudendal nerve entrapment thread of this website. I had the same symptoms (still have a little sitting pain- but only a little). You probably have Myofascial pain and tension compressing nerves. Also, my lower lumbar DDD drives this. I had several posts describing books and ways of getting rid of this tension search for my comments to @bkruppa. Short version, stretching, rolling on Rollga / various balls to get rid of trigger points and the other things I mentioned. Very deep inspiration while stretching and other things will help – one good book with a practical aim is “heal pelvic pain” by stein. Please see my other posts. There were several detailed posts with things to try. My pain got way better. It might take several month but it can get better. Also, this is described in the book “a headache in the pelvis”. Good luck.

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Thank u so much I’m grateful

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@lisalucier

Hi, @travipr. Welcome to Mayo Clinic Connect. You are correct that this thread has not been active for a while, but yet I think some of our members may have some insights for you.

A few things that were mentioned in these old posts as possibilities to check out with your doctor might be 1) a broken tailbone or 2) ankylosing-spondylitis, https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808 or 3) some other type of nerve damage.

If you wouldn’t mind, @travipr, could you tell us a little more about the following, in order to connect you with members who may have input for you?
– How this buttock pain arose for you
– Any more details about the symptoms you are experiencing, like type of pain (sharp, burning, etc.)
– What makes the pain worse or better
– What tests you may have undergone to date for this
– Protocols you have tried

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@lisalucier nice list of possibilities. However, it’s just a start. @dailypain as mentioned to @vklittle61 could also be nerve compression (not nerve damage) resulting from myofascial pain. In other words, it can be reversed. I mostly had sitting pain but had whole chains of trigger points up and down legs and I believe into my psoas muscle. Let me tell you, when you have tension where a nerve plexus is (lumbar plexus goes thru psoas) you get some other weird effects, too. I described how I got rid of mine (my pain and tension) by stretching and exercise in replies to @bkruppa in the pudendal nerve entrapment thread of this website. This does not show up on imaging. As the authors of “a headache in the pelvis” state, it’s something like 6 years average before a correct diagnosis is made. Meds like nortryptyline can help calm nerves but stretching and exercising and very deep inspiration and learning relaxation techniques can largely get rid of this. Please see my prior posts in the pudendal nerve entrapment thread for the details.

Liked by Lisa Lucier

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@richman54660

@lisalucier nice list of possibilities. However, it’s just a start. @dailypain as mentioned to @vklittle61 could also be nerve compression (not nerve damage) resulting from myofascial pain. In other words, it can be reversed. I mostly had sitting pain but had whole chains of trigger points up and down legs and I believe into my psoas muscle. Let me tell you, when you have tension where a nerve plexus is (lumbar plexus goes thru psoas) you get some other weird effects, too. I described how I got rid of mine (my pain and tension) by stretching and exercise in replies to @bkruppa in the pudendal nerve entrapment thread of this website. This does not show up on imaging. As the authors of “a headache in the pelvis” state, it’s something like 6 years average before a correct diagnosis is made. Meds like nortryptyline can help calm nerves but stretching and exercising and very deep inspiration and learning relaxation techniques can largely get rid of this. Please see my prior posts in the pudendal nerve entrapment thread for the details.

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Thank u so much for your help as I feel there is hope and I know God will ultimately heal me and then I will have a great testimony for his Glory! Thank u again and God bless u

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@vklittle61

Omg thank u I am looking into this Monday and thank u a million times over! Glory to God I pray this is my answer

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@vklittle61 Until the sitting pain is better you can buy a: "Hemorrhoid Cushion by Vive – Donut Cushion for Hemorhoids, Pregnancy & Piles Pain Relief"…. which is an inflatable donut pillow. Inflate to your liking and use with other cushions, too. You can put it in a black carry bag "Reusable Grocery Tote Bag Large 10 Pack – Black". Search those terms on Amazon and buy them if you like. I still use those on harder seats. The vive cushion gets your sit bones off the surface until it's better. The muscular tension can cause a bursitis which is agonizing to sit on (bursitis is usually a secondary condition caused by something else behind it). Eventually, my sitting pain got better and I just use other types of cushions now like a thinner (bed bath and beyond has many seat cushions you can check out). You may need to keep looking to multiple doctors and multiple physical therapists until you find approaches that work. The standard NSAID's the Drs. push probably won't do it all alone. Also, keep trying different things until they work.

Below was the entirety of my 3 posts I'd replied to someone else: ( @melissahebert ), Stretching and exercise for both glutes as well as hip flexors may help (search the internet (or talk to physical therapists) and do what is tolerable to you). If you suspect an internal trigger point may be responsible (you have evidence of that) you could contact pelvic therapies (Carlsbad, CA) and get an LA wand and try some self treatment. They have training videos on their website. Also, you could try and find a physical therapist that can do internal and external Myofascial release – but they might be few and far between, depending on where you are at. I have tension near the tuberosities, too, with sit pain. Somehow nerves are compressed, irritated triggering tension. It’s a viscous cycle detailed in the book “headache in the pelvis”.

My biggest symptom was sitting pain as well as stiffness (a hallmark of myofascial pain). My lower lumbar DDD probably fuels it for me but proper stretching and exercise (Pilates reformer, TRX suspension for core and do intense psoas / hip flexor stretches, too, and very deep breathing to release tension (while I exercise)) really helped me. In your case, I’d think internal massage is needed along with stretching and exercise. The “headache” authors advocate a whole program including internal massage. You’ve got to get those muscles relaxed and they’re also all connected (as are the nerves).

Post 2: I also forgot to mention that I had piriformis syndrome (buttocks spasms & can cause sciatica) and all kinds of tension in upper legs, too (tight IT bands, tight areas/ trigger points in quads, glutes and upper hamstrings; in my lower back my quadratus lumborum was tight). I learned all this working with various therapists. Again, stretches and exercises for piriformis, glutes, may help you. Trigger points in that area can refer pain and tension to the buttocks and anal area. TRX suspension core routines work glutes well, try the figure 4 stretch against a wall for pirifirmis (or get a piristretcher from miracle stretch). Rollga foam rollers are good, too, for rolling legs and glutes. Electrical stimulation of tight areas might help. Some chiropractors have e-stim or you can buy a TENS/EMS unit for yourself. Try rolling tennis balls or 4 or 5 inch massage balls on the glutes or along the upper hamstrings to get rid of trigger points (you may need to rest on trigger points for several minutes to get rid of them). Try the other suggestions in my last post, too. Yes Myofascial pain and tension is probably caused by some type of nerve compression – but it can be made better or made to go away with the right stretches and exercises (possibly). Mine got a lot better. I still have a little sitting pain is all. Try everything, and listen to your body. BTW, a TRX system, a Rollga roller (these are curved) a TENS /EMS system and a pelvic therapy wand will probably cost you less than 1-2 Myofascial release treatments will cost. My thinking is getting rid of this was a do it yourself project for me – but I actually enjoy stretching and exercising. A chiropractor that uses electrical stimulation on the glutes helped me a lot, too, for a time. However, the MRT approach (mentioned below) worked best of all. Good luck.
This is post 3, with prior ones in this forum – sorry – but I can't edit prior posts – so there is more information, below. I am not a Doctor so this is not a diagnosis. However, spasms, and pain in an area are generally part of myofascial pain. Medical Doctors are notoriously ignorant about muscuar pain and it's consequences. Nerves aren't necessarily always "entrapped" but rather compressed, irritated. This may repeat some of what I said but, you'll may want to google "trigger point massage" and look for stretches for all areas of your hip (both front and back) and do them. That being said, overdoing trigger point massage can cause some pain and often the "tension" is internal – and you have evidence of that. That's where the stretching and exercise can help for the internal (as well as the LA wand).
Also, I found working the stairclimber at gym as well as weights, pilates, TRX (I talked about that in my prior posts). I also use an inversion table as I have some degenerative disc disease. Supplements helped too, maybe, I am taking 1 tsp of hemp seed oil extract orally, resveratrol supplement + quercetin supplement and 1 carnitine seemed to help me, too. At a different time you can take Rutin with the resveratrol (Rutin is related to Quercetin – so beware you're not overdoing some of these). There are published reports that resveratrol + quercetin helps burn more fat and may reduce lactic acid buildup which might be a source of problems in myofascial pain for some people (see Amazon for all these).

For exercise, stretching physical therapists and knowledgeable massage therapists were the most helpful. I finally found a certified massage therapist in the Palm Desert, CA area called MRT (muscle repair therapy) that does intense ultrasound and stretching – that helped me immensely but I had a history of doing tough martial arts including Judo with breakfalls on the legs / hips so some of my issues were due to scar tissue he's remodeling (and it's working). If you can take heat you can lay on jade stone far infra red heating mats, too – that heat penetrates (however, if nerves are irritated and that is the source of your pain it could get worse ((supplements can help that)). Check and see. I personally went away from ice because it tends to cause trigger points and stiffness. However, I bet you'll find stretching and exercise (and very deep inspirations) will help you the most. Try stretching the piriformis and all kinds of other muscles and make sure you don't have weak muscles. Muscle imbalances as we get older can happen and a weak muscle is a tight muscle (i.e. "piriformis syndrome" – stretch it and do "clamshells" with some resistance bands). Glute spasms can be caused by piriformis syndrome; TRX workouts will help with weak back and glutes and weak core). It's all connected but you can get it all to relax. It isn't permanent even if you've had it a long time – but, that being said, chronic pain gets harder to get rid of the longer it goes on. Books to read: Headache in the Pelvis, Life after pain (Kuttner) and Pain Free (Egoscue) – but I prefer more intense exercises than his simple e-cises ("A muscle that does not move becomes a muscle that can not move" -Egoscue). Also, "Heal Pelvic Pain" (Stein) is good. When you get nerve compression and possibly whole regions of tension – like I had. You may have tension you're not really aware of – you just feel the pain/ spasms/ other nerve pain (burning/tingling) and even other parasthesias (altered sensations also including sweating and ciruculatory effects). Good luck. Work hard and you can get your life back! The Headache in the Pelvis authors point that out – everything in the hips and back is so tightly innervated together that often people have multiple problems that are related (i.e. back pain / hip pain / spasms / IBS, diagnosis of IC, (with some diagnoses often a guess), etc.). Those nerves are all connected. Free the nerves! That's a lot of info – and my last post, I should think, but that is what helped me after two long years to get rid of most of my pain in the lower back, glutes, sciatica, and ease IBS-like symptoms.

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@richman54660

@vklittle61 Until the sitting pain is better you can buy a: "Hemorrhoid Cushion by Vive – Donut Cushion for Hemorhoids, Pregnancy & Piles Pain Relief"…. which is an inflatable donut pillow. Inflate to your liking and use with other cushions, too. You can put it in a black carry bag "Reusable Grocery Tote Bag Large 10 Pack – Black". Search those terms on Amazon and buy them if you like. I still use those on harder seats. The vive cushion gets your sit bones off the surface until it's better. The muscular tension can cause a bursitis which is agonizing to sit on (bursitis is usually a secondary condition caused by something else behind it). Eventually, my sitting pain got better and I just use other types of cushions now like a thinner (bed bath and beyond has many seat cushions you can check out). You may need to keep looking to multiple doctors and multiple physical therapists until you find approaches that work. The standard NSAID's the Drs. push probably won't do it all alone. Also, keep trying different things until they work.

Below was the entirety of my 3 posts I'd replied to someone else: ( @melissahebert ), Stretching and exercise for both glutes as well as hip flexors may help (search the internet (or talk to physical therapists) and do what is tolerable to you). If you suspect an internal trigger point may be responsible (you have evidence of that) you could contact pelvic therapies (Carlsbad, CA) and get an LA wand and try some self treatment. They have training videos on their website. Also, you could try and find a physical therapist that can do internal and external Myofascial release – but they might be few and far between, depending on where you are at. I have tension near the tuberosities, too, with sit pain. Somehow nerves are compressed, irritated triggering tension. It’s a viscous cycle detailed in the book “headache in the pelvis”.

My biggest symptom was sitting pain as well as stiffness (a hallmark of myofascial pain). My lower lumbar DDD probably fuels it for me but proper stretching and exercise (Pilates reformer, TRX suspension for core and do intense psoas / hip flexor stretches, too, and very deep breathing to release tension (while I exercise)) really helped me. In your case, I’d think internal massage is needed along with stretching and exercise. The “headache” authors advocate a whole program including internal massage. You’ve got to get those muscles relaxed and they’re also all connected (as are the nerves).

Post 2: I also forgot to mention that I had piriformis syndrome (buttocks spasms & can cause sciatica) and all kinds of tension in upper legs, too (tight IT bands, tight areas/ trigger points in quads, glutes and upper hamstrings; in my lower back my quadratus lumborum was tight). I learned all this working with various therapists. Again, stretches and exercises for piriformis, glutes, may help you. Trigger points in that area can refer pain and tension to the buttocks and anal area. TRX suspension core routines work glutes well, try the figure 4 stretch against a wall for pirifirmis (or get a piristretcher from miracle stretch). Rollga foam rollers are good, too, for rolling legs and glutes. Electrical stimulation of tight areas might help. Some chiropractors have e-stim or you can buy a TENS/EMS unit for yourself. Try rolling tennis balls or 4 or 5 inch massage balls on the glutes or along the upper hamstrings to get rid of trigger points (you may need to rest on trigger points for several minutes to get rid of them). Try the other suggestions in my last post, too. Yes Myofascial pain and tension is probably caused by some type of nerve compression – but it can be made better or made to go away with the right stretches and exercises (possibly). Mine got a lot better. I still have a little sitting pain is all. Try everything, and listen to your body. BTW, a TRX system, a Rollga roller (these are curved) a TENS /EMS system and a pelvic therapy wand will probably cost you less than 1-2 Myofascial release treatments will cost. My thinking is getting rid of this was a do it yourself project for me – but I actually enjoy stretching and exercising. A chiropractor that uses electrical stimulation on the glutes helped me a lot, too, for a time. However, the MRT approach (mentioned below) worked best of all. Good luck.
This is post 3, with prior ones in this forum – sorry – but I can't edit prior posts – so there is more information, below. I am not a Doctor so this is not a diagnosis. However, spasms, and pain in an area are generally part of myofascial pain. Medical Doctors are notoriously ignorant about muscuar pain and it's consequences. Nerves aren't necessarily always "entrapped" but rather compressed, irritated. This may repeat some of what I said but, you'll may want to google "trigger point massage" and look for stretches for all areas of your hip (both front and back) and do them. That being said, overdoing trigger point massage can cause some pain and often the "tension" is internal – and you have evidence of that. That's where the stretching and exercise can help for the internal (as well as the LA wand).
Also, I found working the stairclimber at gym as well as weights, pilates, TRX (I talked about that in my prior posts). I also use an inversion table as I have some degenerative disc disease. Supplements helped too, maybe, I am taking 1 tsp of hemp seed oil extract orally, resveratrol supplement + quercetin supplement and 1 carnitine seemed to help me, too. At a different time you can take Rutin with the resveratrol (Rutin is related to Quercetin – so beware you're not overdoing some of these). There are published reports that resveratrol + quercetin helps burn more fat and may reduce lactic acid buildup which might be a source of problems in myofascial pain for some people (see Amazon for all these).

For exercise, stretching physical therapists and knowledgeable massage therapists were the most helpful. I finally found a certified massage therapist in the Palm Desert, CA area called MRT (muscle repair therapy) that does intense ultrasound and stretching – that helped me immensely but I had a history of doing tough martial arts including Judo with breakfalls on the legs / hips so some of my issues were due to scar tissue he's remodeling (and it's working). If you can take heat you can lay on jade stone far infra red heating mats, too – that heat penetrates (however, if nerves are irritated and that is the source of your pain it could get worse ((supplements can help that)). Check and see. I personally went away from ice because it tends to cause trigger points and stiffness. However, I bet you'll find stretching and exercise (and very deep inspirations) will help you the most. Try stretching the piriformis and all kinds of other muscles and make sure you don't have weak muscles. Muscle imbalances as we get older can happen and a weak muscle is a tight muscle (i.e. "piriformis syndrome" – stretch it and do "clamshells" with some resistance bands). Glute spasms can be caused by piriformis syndrome; TRX workouts will help with weak back and glutes and weak core). It's all connected but you can get it all to relax. It isn't permanent even if you've had it a long time – but, that being said, chronic pain gets harder to get rid of the longer it goes on. Books to read: Headache in the Pelvis, Life after pain (Kuttner) and Pain Free (Egoscue) – but I prefer more intense exercises than his simple e-cises ("A muscle that does not move becomes a muscle that can not move" -Egoscue). Also, "Heal Pelvic Pain" (Stein) is good. When you get nerve compression and possibly whole regions of tension – like I had. You may have tension you're not really aware of – you just feel the pain/ spasms/ other nerve pain (burning/tingling) and even other parasthesias (altered sensations also including sweating and ciruculatory effects). Good luck. Work hard and you can get your life back! The Headache in the Pelvis authors point that out – everything in the hips and back is so tightly innervated together that often people have multiple problems that are related (i.e. back pain / hip pain / spasms / IBS, diagnosis of IC, (with some diagnoses often a guess), etc.). Those nerves are all connected. Free the nerves! That's a lot of info – and my last post, I should think, but that is what helped me after two long years to get rid of most of my pain in the lower back, glutes, sciatica, and ease IBS-like symptoms.

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Wow thank u so much you are so helpful! I appreciate your time and effort that you put into this to help me

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It sounds like a sciatica problem.

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@wandamiller

It sounds like a sciatica problem.

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@wandamiller @vklittle61 Remember, we are not doctors and diagnosticians. So the suggestions I had for others were my story and suggestions- not a diagnosis. However, they may be relevant. Piriformis syndrome (which I had, among other things), is a form of sciatica in that the piriformis muscle can compress the sciatic nerve. Stretching and exercise are known to help this. I also did used to have burning sensations in my lower legs – a characteristic of sciatica. Doctors generally use the dermatome concept (lower leg issues map to S1 (sacral) nerve segment. In fact, it is possible that (trigger points near the piriformis) could be causing my sitting pain as well as in some others who have sitting pain. However, I have lower lumbar DDD with bulging disks (and some foraminal stenosis), torn hip labral cartilage (both hips), hip impingement (large cams). You take your pick. However, my symptoms went way beyond merely sciatica (my pain level was not too bad during most of this, too- but it was always there). It's a wonder I'm not in more pain. I can stand and walk a lot with no pain. For me motion helps me feel better.

My pain doctor explained that many pains below the spinal nerves actually come from pinches / compression in spinal nerves up above. It can be very complex to get to the root causes. A lot of my pain was myofascial. I personally think I've had some tension in nerve plexuses – such as the psoas (where the lumbar plexus passes thru). These nerves later goes onto form the lumbosacral plexus. This causes digestive issues, too. Stretching, exercise and very deep breathing have really helped relax a lot of that tension. Most doctors don't know anything about any of that or how to treat it. Some physical therapists know various helpful things. All that being said, things have gotten a lot better.

Liked by Lisa Lucier

REPLY
@richman54660

@wandamiller @vklittle61 Remember, we are not doctors and diagnosticians. So the suggestions I had for others were my story and suggestions- not a diagnosis. However, they may be relevant. Piriformis syndrome (which I had, among other things), is a form of sciatica in that the piriformis muscle can compress the sciatic nerve. Stretching and exercise are known to help this. I also did used to have burning sensations in my lower legs – a characteristic of sciatica. Doctors generally use the dermatome concept (lower leg issues map to S1 (sacral) nerve segment. In fact, it is possible that (trigger points near the piriformis) could be causing my sitting pain as well as in some others who have sitting pain. However, I have lower lumbar DDD with bulging disks (and some foraminal stenosis), torn hip labral cartilage (both hips), hip impingement (large cams). You take your pick. However, my symptoms went way beyond merely sciatica (my pain level was not too bad during most of this, too- but it was always there). It's a wonder I'm not in more pain. I can stand and walk a lot with no pain. For me motion helps me feel better.

My pain doctor explained that many pains below the spinal nerves actually come from pinches / compression in spinal nerves up above. It can be very complex to get to the root causes. A lot of my pain was myofascial. I personally think I've had some tension in nerve plexuses – such as the psoas (where the lumbar plexus passes thru). These nerves later goes onto form the lumbosacral plexus. This causes digestive issues, too. Stretching, exercise and very deep breathing have really helped relax a lot of that tension. Most doctors don't know anything about any of that or how to treat it. Some physical therapists know various helpful things. All that being said, things have gotten a lot better.

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I have similar symptoms. Have seen a pain specialist for 10 years with little help. They talked me into the nerve implant stimulator. Turned out that I was allergic to it. Had that removed. Countless injections.
Lyrica for lower leg pain and foot neuropathy. That drug helped me to gain more weight than was I was in labor with my kids. Did hardly anything for my pain.
Now I've developed unmanageable pain in my hips and femur bones and muscles. My pain dr refuses to address this because he started treating me for low back pain from a work injury.
I'm a 56 year old woman and trying my best to find a solution other than pills that aren't helping anyway. P.S. I live in the snow belt and its adding to it. I wish you best of luck in everything.

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@wandamiller

I have similar symptoms. Have seen a pain specialist for 10 years with little help. They talked me into the nerve implant stimulator. Turned out that I was allergic to it. Had that removed. Countless injections.
Lyrica for lower leg pain and foot neuropathy. That drug helped me to gain more weight than was I was in labor with my kids. Did hardly anything for my pain.
Now I've developed unmanageable pain in my hips and femur bones and muscles. My pain dr refuses to address this because he started treating me for low back pain from a work injury.
I'm a 56 year old woman and trying my best to find a solution other than pills that aren't helping anyway. P.S. I live in the snow belt and its adding to it. I wish you best of luck in everything.

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@wandamiller I did use nortriptyline at either 10, 20 or 30 mg doses for nerve pain for a while. It helped. My pain was never that bad, though (perhaps 2 or 3 while sitting and now I use cushions and can sit a lot longer). Only tricyclic antidepressants or the other meds work well for nerve pain (and tight myofascia can trigger nerve pain). Keep trying different things if you can. Have you tried an inversion table and other core exercises, too?

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@vklittle61

I too am suffering from chronic pain and I cannot sit down without being in pain. It will be a year in March 2019. I have been to the chiropractor physical therapy, orthopedic doctor received injections in my tailbone I do massages weekly I’ve been to a rheumatologist. The im still having pain in my butt or more like sits bones area! I need some help God please help me! No one can tell me what the problem is

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There is something called levator ani syndrome that sounds like what you describe. It requires a very complex surgery and only a few surgeons do the surgery. A lady was talking about her surgery on facebook several years ago. She was from Knoxville, TN and I think she had to go to Boston to have the surgery.

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@jelizabeth

There is something called levator ani syndrome that sounds like what you describe. It requires a very complex surgery and only a few surgeons do the surgery. A lady was talking about her surgery on facebook several years ago. She was from Knoxville, TN and I think she had to go to Boston to have the surgery.

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@vklittle61 jelizabeth @bkruppa You'll need to talk to Drs. about your specific cases. However, a lot of people on this forum keep talking about surgery. Surgery in that area can be very dangerous and often is avoided by the surgeons. A lot of this – including levator ani syndrome – was described in the book "a headache in the pelvis" (and other books about pelvic pain). It often is the result of subtle compression on nerves (which can cause much and continuous pain) and can often be treated in other ways including stretching, relaxation techniques, exercise and trigger point release (internal and external). Please see my prior detailed posts and also read some of the books like that above and of the topic "healing pelvic pain". There is good chance this is a case of myofascial pain in the pelvis compressing nerves down there. Google how to treat myofascial pain. In the book it mentions many people have surgeries only to find out the original pain isn't fixed and they have new issues. If I'm right, It is likely you'll find the most help from physical therapists and other therapists of that nature and not as much help from most medical doctors as they are notoriously unaware about myofascial pain. You may want to keep trying to get an actual diagnosis from a medical doctor – but they're often guessing based on pain patterns (as discussed in the books, above, especially "a headache in the Pelvis" by Wise and Anderson). Tension in the tuberosities (like I have) is generally considered myofascial pain. How best to treat it and what is driving it – who knows? That being said, good luck.

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With as many doctors that we have been to ALL just want to prescribe meds to cover up the pain. When I ask or suggest possible causes like PNE, scar tissue entrapment, etc. they don't seem to know what I am talking about. As for surgery it appears that given that the pudendal nerve is so complex no doctor even wants to talk about this as a cure. I agree. In looking at photos of this nerve it is a multifunction nerve and while it goes to three specific places in the pelvic floor region there are offshoots that go all over the place so it is very complex. Surgery gone wrong could produce even more issues with the patient.

We have tried the massaging techniques in the above referenced books which helps some but nothing has been permanent. We've also gone to experts in this field and again while it has helped the pain eventually comes back. From what I've read it takes a very long time to permanently stretch a muscle so maybe we just haven't gone through these procedures long enough.

What is interesting is that there are times where my wife's pain is so low that she doesn't have to take any pain meds at all. Then the pain returns. We've tried to go back through the previous day/days to see what she did differently but can never come up with a reason for these low pain episodes. I would like to know if any of you have experienced the same variation of pain levels be it daily, weekly, monthly, etc.? I think this is a good clue for finding the source of the pain but we just haven't been able to tie it to anything she did or ate.

To those who have these issues the first thing I would recommend is to determine if the nerve is damaged or entrapped. If damaged research seems to say this is permanent and there is no known cure. I was told by a doctor at Mayo that if the pain intensity is constant all the time then the nerve is probably damaged. If the pain can vary either throughout the day or from day to day then the nerve probably is not damaged. In this case I would say the nerve is entrapped and then the above massaging techniques will be the path to follow for relief and/or cure. The other suspect area is at the pudendal nerve root which is at the spinal column. If there is inflammation at this point this could be the source of pain issues. One neuro doctor wanted to inject a steroid to reduce the inflammation. However, this would be an ongoing treatment and I would prefer to determine why there is inflammation there in the first place. This kind of treatment is somewhat common but as with any procedures on the spine it does have risks. We did not opt for this procedure.

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