1. < Chronic Pain

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?

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1mepnurse | @1mepnurse | Sep 26, 2020
In reply to @sparshall "I have had terrible pain in my pelvis since I suffered nerve damage from widespread fractures..." + (show)
@sparshall

I have had terrible pain in my pelvis since I suffered nerve damage from widespread fractures in 2015. Sitting has been impossible without a heating pad under me. My pain doctor tried everything but nothing worked. I now have a Stimwave peripheral nerve stimulator (PNS) that blocks the pain. It has saved my sanity. Other PNS devices are also available and covered by insurance for intractable pain that has not responded to other treatment. PNS devices are much less expensive than spinal cord stimulators and do NOT go into your spine. The wires are inserted along the nerves that serve the area where your pain is, and the stimulation blocks the pain signal. The battery is external and you can take it on and off. Look into it, discuss it with your doctor, and see if this might be a solution for you. It has made my life bearable again.

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So darn happy to learn of your PNN stimulator. So happy for you & I will b researching this. Thank u SO much for letting others know. God bless!!

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1mepnurse | @1mepnurse | Sep 27, 2020
In reply to @wandasophia "I have the same burning in my buttocks, sever burning in my torso. Seeing a neurologist,..." + (show)
@wandasophia

I have the same burning in my buttocks, sever burning in my torso. Seeing a neurologist, taking Naltrexone gradually increased from 1 mg to 5 mg. No change. I ice pack all the time. I think i could have Pudendal nerve compression. I have a lot of the symptoms. I am supposed to see a gyn who specialies i pelvic floor pain

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Ice packs are my best friend, plus Gabapentin 600mgm & the lightest of pain meds.
Most time has to b spent at home, since so miserable & painful!

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downton | @downton | Oct 29, 2020

I have been dealing with this for thirteen years now. It started abruptly one day when I sat down. I had always been very active in addition to being a nurse for many years. I have been everywhere all over the country-had all kinds of tests-a couple of surgeries I wish I had not done, I am so sorry to say-nothing has helped me. I do have AS and recently have been diagnosed with what is called metastatic crohns. I may be starting on a biologic,stalera. Hoping by some way outside chance this might help. Best to you all in this very difficult journey that I feel stole so much of me and my life. I try to keep pushing thru but do less and less.

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4 replies
qball2019 | @qball2019 | Oct 29, 2020
In reply to @downton "I have been dealing with this for thirteen years now. It started abruptly one day when..." + (show)
@downton

I have been dealing with this for thirteen years now. It started abruptly one day when I sat down. I had always been very active in addition to being a nurse for many years. I have been everywhere all over the country-had all kinds of tests-a couple of surgeries I wish I had not done, I am so sorry to say-nothing has helped me. I do have AS and recently have been diagnosed with what is called metastatic crohns. I may be starting on a biologic,stalera. Hoping by some way outside chance this might help. Best to you all in this very difficult journey that I feel stole so much of me and my life. I try to keep pushing thru but do less and less.

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Has anyone seen Tarlov cysts (also known as perineural cysts)? Request your records and look through your imaging reports. Most doctors refuse to believe that they cause issues but they do when they grow a little larger. I have 5-6 of them compressing the nerves in my sacral area. I cannot sit on my right butt cheek at all and bending is nearly impossible. The compression is causing issues with everything below the waist and the inflammation is causing numerous issues above the waist as well.

I used to have Fentanyl patches but was switched to Ketamine troches (dissolve under the tongue) as an opioid alternative. IT WORKS for all kinds of pain, especially the nerve pain for me. I also take gabapentin, tramadol, and baclofen but the ketamine is the best pain relief I've had in 17 years!!

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1 reply
1mepnurse | @1mepnurse | Oct 29, 2020

Any other symptoms, like your privates feel ' on fire' & your rectum has fullness & hard to move your bowels! If so, good chance it's Pudendal nerve neuralgia.
Let me know, ok? Find a Pelvic Floor Therapist group & join them !! Over time they can help...it's so horrible & frustrating, dear!!

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1mepnurse | @1mepnurse | Oct 29, 2020
In reply to @vklittle61 "I too am suffering from chronic pain and I cannot sit down without being in pain...." + (show)
@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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Your best help is finding Pelvic Floor Therapist. There's no magic formulate. Been suffering with Chronic Pudendal Nerve Neuralgia or Entrapment for almost 4 mo. Just MAYBE U have something similar. With Pelvic Floor Therapist 2x a week, a few thinks are some better.
Sit on good icepacks...helps truly, when u can!!
Keep in touch!! Prayers for us all.
If U have any nerve burning, like bad, Gabapentin prescription & Hydrocodone 5/ 325mg helps a lot!!

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1mepnurse | @1mepnurse | Oct 29, 2020
In reply to @jakedduck1 "@vklittle61 Hi, Have you had a pelvic ct scan? Jake" + (show)
@jakedduck1

@vklittle61
Hi,
Have you had a pelvic
ct scan?
Jake

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Read about Pudendal nerve pain...that's a big symptom!

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1mepnurse | @1mepnurse | Oct 31, 2020
In reply to @downton "I have been dealing with this for thirteen years now. It started abruptly one day when..." + (show)
@downton

I have been dealing with this for thirteen years now. It started abruptly one day when I sat down. I had always been very active in addition to being a nurse for many years. I have been everywhere all over the country-had all kinds of tests-a couple of surgeries I wish I had not done, I am so sorry to say-nothing has helped me. I do have AS and recently have been diagnosed with what is called metastatic crohns. I may be starting on a biologic,stalera. Hoping by some way outside chance this might help. Best to you all in this very difficult journey that I feel stole so much of me and my life. I try to keep pushing thru but do less and less.

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I am a retired RN, too. Surely am going to pray for you, dearest. I KNOW U R strong. (( Hugs))!

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schony1087 | @schony1087 | Oct 31, 2020

I too am in chronic pain. The pain is in my lower buttocks, upper legs, and ankles, and feet. At times I feel like my feet, ankles, and buttocks are on fire. I stand to eat most of the time. This is not a good way to live. It takes away all the joy in life. I would like to know what type of doctor I need.

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