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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@erikas

@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?

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@erikas

My insurance co. just finally approved surgery last week. Now I'm just waiting for a call from the surgeon's office. To answer your question... you can have the cysts drained but it costs thousands of dollars to do that and the cysts fill right back up with spinal fluid, sometimes within hours. They can't remove the cysts because they are innervated. The only thing you can do is endure the pain and all the other symptoms that come with it. Hopefully you are able to find a doctor that is open minded and willing to look into your illness and try different medications & supplements for your pain. I can also say that you MUST be your own advocate. Reach out to foundations, integrative pain specialists, etc. Do lots of your own research and take your findings in to your doctor for consideration. It has been a long haul over the years but I have hope that the surgery will relieve this pain. Because the nerves have been compressed so long there will definitely be permanent nerve damage, it's just a matter of how much. Fingers crossed!

Kind Regards,
Terri

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@kimmy63

I still have pain when I sit or lay on back to long. It has been 6 yrs now so I know how you feel. Saw a Dr. at Rochester who checked nerves by poking area with a pin. Did you or can you have this test done? I think it was a Neurogilst.

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Test is called an EMG

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Go to an orthopedic and get images. If it is bones, it will likely show up. Mine doesn't, so it is more like inflammed soft tissue. I like the piriformis stretches, basic cat/cow/child/cobra yoga,clamshell stretches and a daily walk. Make sure you are sitting ergonomically and that you are standing straight; gait is upright. Also, this may be referred pain that is coming from somewhere else. My manual PT, who can do adjustments, says PT first, before surgery always. There are lots of ways to be misaligned due to muscle weakness or hypermobility (Beighton scale). There are PTs experienced in this area; look for EDS or hypermobility specialities. (i have MCTD)
https://www.youtube.com/watch?v=iqQDmakOvN8

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I am so sorry to hear about your pain. 10 years ago, I was referred to a wonderful orthopedic doctor who did an MRI and X-rays and told me to get a coccyx cushion. He said to use it all the time and to make sure I take it with me wherever I go. I purchased it from Essential Medical supply, inc. N1002 18X16X3. He said it is a simple solution to possibly avoid surgery. I have 3 now and recently bought another one for $26. It makes me pain free when I sit down and I have not had surgery. I have degenerative discs and tail bone issues. It may not help except to make hard chairs comfortable. However, I have told many people about it and the ones that have tried it say the cushion really makes a difference. The V at the back takes pressure off your spine. My doctor did say to be careful and not get a hard one. This one is soft and much cheaper than the others I have seen. My skeptical husband even uses one now. Good luck.

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@schony1087

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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The horrible burning pain in your lower buttocks & high upper back legs could easily be Pudendal nerve neuralgia, but usually in perineum area, too. With this, Gabapentin helps most, but don't t miss ONE dose, cause then it's almost unliveable, for me! It's very painful to sit. Sit on icepacks & buy a GOOD sitting cushion. Only my pain Dr happens to know about PNN. Keep in touch

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If ANYONE else has PNN, we need to talk!! It's only 1:100,000 who get this!

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I have had this for years (Different name, as part of MCTD) and found relief at a manual PT, rocabado trained. It is piriformis/sciatica and working to lengthen and strengthen the muscles is incredible. Not a woowoo fix, but works well with meds. I do not like gabapentin. Dr Jo you tube is great and the Two Guys video after it also explains well. Give it a try! https://www.youtube.com/watch/iqQDmakOvN8

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This month will be two years that I’ve had this problem. I’ve been to five surgeons and one wanted to do surgery on my spine and the other four said they saw nothing that the first one dead and they don’t know what’s wrong and they came up with the same thing Ischeal bursitis

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@marye2

I have had this for years (Different name, as part of MCTD) and found relief at a manual PT, rocabado trained. It is piriformis/sciatica and working to lengthen and strengthen the muscles is incredible. Not a woowoo fix, but works well with meds. I do not like gabapentin. Dr Jo you tube is great and the Two Guys video after it also explains well. Give it a try! https://www.youtube.com/watch/iqQDmakOvN8

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Very helpful

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@mistyb

Very helpful

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Ime: Ask for anti-seizure medicine. That worked for me after 14-1/2 years of pain.

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