Ischial bursitis

Thank you again, just reread your post. Slowly-filled with great info.
Really interesting about the taping, even the sham taping. When I put a 1/2 diclofenac patch on each side, (takes a few hours for Med to penetrate) it seems to feel better almost immediately…not perfect, but somewhat better, I know that it’s not the Med yet…was starting to think I’m making things up in my brain…

Who diagnosed your central sensitivity? A neurologist? Pain management? I saw a neurologist several years ago for other nerve issues that appeared after the accident.
I am going to find that rabbit hole and try to find more info about central sensitivity.
Thanks again!

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So sorry I forgot to reply! Sometimes I get a lot of notifications and then just kinda lose track >_< I didn't intend to ignore you.

Did you end up feeling like central sensitivity was a fit for your experience?

My PT was the first person to bring up central sensitivity. They use a framework called the "Continuum of Pain Mechanisms" to identify where you fall on this spectrum, and depending on how your brain/body is responding to stimuli and creating pain (especially chronic pain), there are often particular approaches that can work better to retrain the brain and lower the volume on the pain signals. I fell way on the farthest end of the spectrum for the most persistent pain--which always includes central sensitivity.

Interestingly, she didn't really refer to it as a "diagnosis" (she has repeatedly said she's "not into labels," which I always told her was fine for her, but a label and credibiilty is what gets a patient access to care in this situation!)

Technically, the first physician to type it up in my chart was a physiatrist (physical medicine + rehab) physician at Mayo Clinic. From being at two Mayo campuses (long story), it seems their physicians have drastically much more awareness and motivation to treat central sensitivity (though also from my experience, it's sometimes missed the mark or wasn't the best fit for me). Other physicians I have seem aware of it in various amounts, but no one's really gung ho about trying to help me treat it. Physiatrists seem most aware of it, also PTs (though not everyone), and I got lucky and my PCP treats many people like me. But by the time I found her, I'd already gotten a lot of help from my PT and physiatrist.

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For what it's worth, I can relate... But having more information I feel means we can take back some agency, even though it doesn't make up for all that might have been lost by the time we got to this point.

Do you think you have central sensitization, or hypermobility (HSD/EDS)?

I just came across this blog post on WebMD if you're interested in learning more about central sensitivity (which many people with hypermobility also have): https://blogs.webmd.com/pain-management/20230731/disabling-pain-tests-may-not-tell-you-why

Apparently, the physician who wrote it has a book coming out soon about chronic pain/central sensitivity. But I checked out her website, and she has some blog posts specific to central sensitivity that could be helpful if you're wanting to learn more: https://askdrshana.com/

I didn't look too deeply into it; it might be a little thin on specific recommendations, but I'm happy to share my experience if any of it would help. Or just commiserate.

And @ch47 I'm so sorry I just realized I never replied to your post! Sometimes if I delete the notification, I lose track of it. Were you able to find anything that helped? The above sites are new to me, so might be of interest to you too.

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@ch47 @emo I happen to notice your comments here. You may be interested in these discussions about Central Sensitization where you can connect with other members and our mentor, Rachel @rwinney who knows a lot about this subject.

Chronic Pain - "Has anyone been diagnosed with Central Sensitization?"
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/

Chronic Pain - "Central Sensitization - please share your stories"
https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

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For what it's worth, I can relate... But having more information I feel means we can take back some agency, even though it doesn't make up for all that might have been lost by the time we got to this point.

Do you think you have central sensitization, or hypermobility (HSD/EDS)?

I just came across this blog post on WebMD if you're interested in learning more about central sensitivity (which many people with hypermobility also have): https://blogs.webmd.com/pain-management/20230731/disabling-pain-tests-may-not-tell-you-why

Apparently, the physician who wrote it has a book coming out soon about chronic pain/central sensitivity. But I checked out her website, and she has some blog posts specific to central sensitivity that could be helpful if you're wanting to learn more: https://askdrshana.com/

I didn't look too deeply into it; it might be a little thin on specific recommendations, but I'm happy to share my experience if any of it would help. Or just commiserate.

And @ch47 I'm so sorry I just realized I never replied to your post! Sometimes if I delete the notification, I lose track of it. Were you able to find anything that helped? The above sites are new to me, so might be of interest to you too.

Jump to this post

For what it's worth, I can relate... But having more information I feel means we can take back some agency, even though it doesn't make up for all that might have been lost by the time we got to this point.

Do you think you have central sensitization, or hypermobility (HSD/EDS)?

I just came across this blog post on WebMD if you're interested in learning more about central sensitivity (which many people with hypermobility also have): https://blogs.webmd.com/pain-management/20230731/disabling-pain-tests-may-not-tell-you-why

Apparently, the physician who wrote it has a book coming out soon about chronic pain/central sensitivity. But I checked out her website, and she has some blog posts specific to central sensitivity that could be helpful if you're wanting to learn more: https://askdrshana.com/

I didn't look too deeply into it; it might be a little thin on specific recommendations, but I'm happy to share my experience if any of it would help. Or just commiserate.

And @ch47 I'm so sorry I just realized I never replied to your post! Sometimes if I delete the notification, I lose track of it. Were you able to find anything that helped? The above sites are new to me, so might be of interest to you too.

Jump to this post

So sorry I forgot to reply! Sometimes I get a lot of notifications and then just kinda lose track >_< I didn't intend to ignore you.

Did you end up feeling like central sensitivity was a fit for your experience?

My PT was the first person to bring up central sensitivity. They use a framework called the "Continuum of Pain Mechanisms" to identify where you fall on this spectrum, and depending on how your brain/body is responding to stimuli and creating pain (especially chronic pain), there are often particular approaches that can work better to retrain the brain and lower the volume on the pain signals. I fell way on the farthest end of the spectrum for the most persistent pain--which always includes central sensitivity.

Interestingly, she didn't really refer to it as a "diagnosis" (she has repeatedly said she's "not into labels," which I always told her was fine for her, but a label and credibiilty is what gets a patient access to care in this situation!)

Technically, the first physician to type it up in my chart was a physiatrist (physical medicine + rehab) physician at Mayo Clinic. From being at two Mayo campuses (long story), it seems their physicians have drastically much more awareness and motivation to treat central sensitivity (though also from my experience, it's sometimes missed the mark or wasn't the best fit for me). Other physicians I have seem aware of it in various amounts, but no one's really gung ho about trying to help me treat it. Physiatrists seem most aware of it, also PTs (though not everyone), and I got lucky and my PCP treats many people like me. But by the time I found her, I'd already gotten a lot of help from my PT and physiatrist.

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I just printed and took the central sensitization inventory. I scored 72 so I guess I pass with flying colors. Why have I never hear of this?
Definitely hypermobile and have a few autoimmune diagnosis seronegative, Spondyloarthropathy, fibromyalgia, and Hashimoto’s. I have had multiple tears and surgeries in my hip, elbow,knees, etc. that no one could really explain how these problems happened. I had a doctor put in a temporary spinal stimulator to help my lower back pain and he left me with even more damage and neuropathy, etc. I have seen more doctors and specialists than I can count and spent an absolute fortune trying to figure out what is going on with my body. My stomach has been a mess for a long time and the G.I. doctor can’t figure that one out either. Is this sounding at all familiar?

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Thank you for the introduction, Jennifer @jenniferhunter. Along with the helpful CSS discussions provided, I also recommend watching the attached educational video by Dr. Sletten of Mayo Clinic's Pain Rehabilitation Center.

Dr. Christopher Sletten -Central Sensitization Syndrome:
https://youtu.be/vJNhdnSK3WQ

Dr. Sletten scientifically explains Central Sensitization Syndrome and breaks down a plan for management.

@ch47 and @emo, I'd love to hear back from you and know if you find the video enlightening or if any parts resonate with you. @ch47, I hope researching CSS will help you along with clarity about your journey.

@emo, you seem to have a pretty good handle on your management approach and have shared a lot of helpful info. A physiatrist seemed to be your key to unleashing a plan. My key was self-advocating by watching Dr. Sletten's video then applying to the MayoPain Rehab Center. Best move ever!

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