Pain in the butt - Can't sit down

@schony1087 This could be myofascial pain or some type of neuropathy. I had a lot of this along with sitting pain. I've posted many times here with the same message. Healthy fats and various supplements as well as stretching and exercise can help. For the burning nerve pain often antidepressants are used. Titrate up or down slowly on and off those. Often nortryptiline or cymbalta are used, but there are others, too. However, I was able to get off these meds in favor of the supplements mentioned, below.

Doctors often start the injections, etc., but with limited success. you'd be going to a pain managment doctor or a neurologiset. However, you'll probably be on the classic treadmill of putting the bandaid on the symptom and not curing the underlying cause which is often poor circulation, etc. Many times, the NSAID's, etc. they suggest have their own side effects. Doctors often tell you there is not cure for neuropathy and I think they are incorrect. They just don't know the cure.

Here is a review I wrote of a book from Dr. Greg Fors. He discusses chronic myofascial pain - but even if you have neuropathy, better diet (and various supplements) and exercise might help. Sorry - this is a long post - but it is what WORKED for me:

Review of: Dr. Fors book. Why we hurt. How we heal, 2nd Edition, available on Amazon.
I've had some chronic myofascial pain in glutes and legs and I've found essentially the "cure" on my own. In the meanwhile I'd read other books such as "A headache in the pelvis". That book talks about the problem but doesn't specifically give you the cures (only some "cures"). However, Dr. Fors book is the go to book with practical tips and suggestions. His own story "case study" could practically have been my story with sitting pain and muscular tension. In his book Dr. Fors talks about oxidative stress on tissues, etc. For a person who's interested perhaps you could read it all. However, you can skip some and just go to the practical parts and use that information instead. I personally believe it is poorer circulation and poorer tissue remodeling as we age that causes these issues like myofascial tension and pain (including neuropathic pain). Apparently, I had some fibrosis / extra clotting going on as I got older (i.e. 58-ish). I believe the fibrosis in tissues / veins was causing poorer circulation and stiffness. While speculative, it may be deposits of fibrin (the blood clotting protein) that causes issues when deposited in veins, arteries and tissues and that tends to recruit cells of the immune system (granulocytes) and, hence, you also get "inflammation" (there is your low-grade autoimmunity tie in; these are my opinions; not something Dr. Fors mentioned). I believe this was true in my case. Supplements may alter and reduce this process. Read below for specific suggestions – many of which were mentioned in Dr. Fors book (I added 2 supplements to my regimen as a result of Dr. Fors' suggestions).
I do believe the supplements are the key to promote healing and proper tissue remodeling / regeneration which may go awry as we age and don't heal properly without the correct supplementation. Said differently, as you age you may need to supplement your diet with various plant substances and minerals, etc., for best health. His book is worth the price of that information alone which he details in a chapter on supplements / nutrition – but he doesn't mention adding a little hemp seed oil, etc. (I'm just writing this off the top of my head – there is a lot in this book – maybe he did mention healthy fats). As you take supplements, do check your blood pressure as these can vary it.
For me, proper supplementation (I added on a couple of Dr. Fors' suggestions, along with my stretching and exercise) have largely "cured" my tension and pain in the lower back and glutes, which included some pelvic floor tension, I believe. I have lower lumbar degenerative disc disease (which is most likely a “perpetuating factor” for myofascial pain) but all my pain comes from muscular tension and pain – which can be controlled without NSAID's and without antidepressants for me (although for a time, I did use some nortryptline for nerve pain). Honestly, if you cure your gut health (Dr. Fors has a whole chapter on that) and take the right supplements, your myofascial tension and pain (or it could be neuropathy) may go away on its own without needing to do a bunch of trigger point work (possibly; that is what happened to me – but he has a whole chapter on trigger point removal and has invented a tool you can buy separately for trigger point work – instead of using the usual balls and rollers for this). As one other reviewer said, until the root problem is cured the trigger points might simply come back – they did for me, too, at one time.
He has whole chapters about each topic. Especially, adding various supplements such as Flavinoids and flavolignins can really help you heal. Some of the supplements Dr. Fors mentioned such as ginger extract to calm digestion and Milk thistle extract (source of flavinoids) is one of many you can take (silymarin, the active ingredient in milk thistle extract, is a bunch of flavolignins, I believe; I also take diosmin / hesperidin and some quercetin (stay below total 500 mg or so daily); these are all flavinoids, I believe / resveratrol; ORAC energy greens (full of plant stuff and – you guessed it flavinoids) and extra vitamin C (staying below 2000 mg daily) and a tblsp of hemp seed oil, and turmeric. I also take rutin (vein health along with the diosmin/ hesperidin mentioned above) and turmeric daily. The only one that is really potentially toxic is quercetin. Do not take too much in supplement form and the ORAC energy greens has some in it already. People might also benefit from adding a source of SOLUBLE fiber with each meal (such as Heather's Tummy fiber) and Fors discusses gut health as super important and disorders often accompany chronic pain syndromes. He has a whole chapter on that.

The regimen I use along with stretching and exercise reversed or is cutting down on my sitting pain / neuropathic pain in the legs and glutes (i.e. less "sciatica") and reduced fibrosis in the muscles/veins, etc. I also supplemented with enzymes nattokinase / serrapeptidase and lumbrokinase, too, taken between meals to help with possible fibrin (or other amyloid type deposits) in veins / tissues. These are counter-indicated if you have clotting disorders or about 10% of people simply don't tolerate these in the gut. These have never bothered me and helped tremendously. Unfortunately, Dr. Fors did not mention those supplements that might reduce depositions of proteins in veins / tissues and are thought to be anti-inflammatory. However, these might still be considered “alternative medicine” in the west despite being used in Asia for years. Regardless, you might cure your issues with the right supplements alone, without those enzymes. I found milk thistle extract, recommended by Dr. Fors, was a good addition to the above substances as a source of flavinoids. Yes, cut down on added sugars, too, as Dr. Fors (and everyone else in the universe talks about). I had tried some of the other supplements he mentioned (like devils claw – but found it increased my blood pressure). Many others actually lowered my blood pressure!

Short version: supplements can help relieve inflammation and nerve irritation along with stretching and exercise you can tolerate– the right ones – can also really help. There is also a "the protocol works and the protocol 525" for neuropathy. However, some of that involves insanely high levels of vitamins. I'd try what is in Fors' book and the lists I have, above, and see if those supplements help in the lowest possible doses. That is what worked for me.

Good luck, hope some of this helps. Rich

I too have what you describe, I have found the cause of mine. Look up tarlov or meningeal cysts. It will be better for you if you read this information rather than me giving you information that isn't accurate. These have been on my mri's and previously never reported because medical students have been taught these are incidental findings. Dr Frank Fiegenbaum in Dallas Texas. Hope this sheds light on your situation.

Wow...I have most symptoms such as this, but then also...horrific vaginal burning, which HAS decreased. Pelvic floor therapy over time helps a lot. I diagnosed mine as truly similar to Pudendal nerve neuralgia. Thanks for YOUR onsite. God bless.

I feel like your Dr putting you on Gabapentin prescription could truly help all that nerve burning. Hope others have more suggestion! Feel better soon!!😍

@1needanswers
Hi Christine, and welcome to this group of brave and struggling souls. What you have sounds VERY painful. And frustratingly difficult to deal with, since the spine is basically inaccessible except through surgery. You say you know what caused you to have Tarlov's, what was it? If you do not mind my making a suggestion, you might also want to check out the Spine Health group here on Connect:
https://connect.mayoclinic.org/group/spine-health/
In fact, I notice there is at least one discussion in that group about Tarlov's (there might be others), here's a link: https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/

My wife suffers from neuropathy and I spend my early morning hours perusing this forum, trying to find things to help her, and I have found some interesting things since I joined early this year. I hope you find some things to help you as well. I read your little bio about having 5 kids and 8 grandkids. So at least you get a lot of distraction from your pain, no? 😉 Best, Hank

I actually meant to say my pain is from tarlov cysts pressing on nerves. Not everyone has knowledge of them, so I was passing on. Sorry for the confusion.

@1needanswers
No need to be sorry, the confusion was all mine. You said cysts, I just missed it. I hope you have been able to find ways to cope with this pain and perhaps even have some plan to get rid of the cysts? Hope so. Maybe it's just me but it sure seems like more people are dealing with more oddball illnesses these days that I never heard about before. Every day I read about some illness or condition that is brand new to me. And from what some people say in their posts, many of these things are new to their doctors as well! These are crazy times, crazy painful times. Best, Hank

@downton Welcome to Mayo Clinic Connect. It must be extremely difficult to go from being active to having multiple ongoing health issues.

I'm wondering if you might also be interested in the...
- Digestive Health group https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

There you can connect with other members like @dval @eden @guener @sandyjr that are discussing Crohn's Disease.

May I ask what AS stand for?

@downton
Hi, I too, in addition to @erikas am curious as to what AS is. I do see online that there is an illness called Ankylosing spondylitis, is that what you have? Here is the link from Mayo about it:
https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808
If this is what you have, does it cause you much pain from the fusing of the vertebrae? Just wondering how severe it is your case, and how you deal with it, meaning both the condition itself as well as the pain? And one of the problems it causes is difficulty in being able to sit comfortably, or at all?

Best to you, Hank

@qball2019 It sounds like you are in an incredible amount of pain due to Tarlov cysts compressing nerves on your sacral area.

May I ask if there are any treatments to directly address the cysts?