Pain - gluteal fold, under the right ischial tuberosity

[C5QuadGuy]

Hi Guys,


I?m a typical C5 quad. Injured back in 2004. I?ve never had a pressure sore but over the last 2 years I?ve been really struggling with a pain in a pressure risk area, the gluteal fold region.


Specifically, the pain area is my right side, gluteal fold, under the right ischial tuberosity (see attached e.g.).


Not always, but most days the area painful, and rarely its a bit red...but has never had a skin breakdown.


I?ve had MRI?s, ultrasounds etc to try diagnose the pain. I?ve done lots of physio as well.


The diagnosis so far is that my right glutes have suffered significantly more muscle atrophy than my left side.


I have a FES bike but I can?t use it consistently as it is painful in the area in question.


My question is?
1. has anyone else here had a similar problem? How did you solve it...
2. and also more specifically is there anything people would recommend to build up muscle in the glutes area? (perhaps a TENS approach)
3. Any general advice is welcome?


FYI - I?m seating on a ROHO


Thanks in advance!

[hlh]

I think that is one of the most common sites for SCI folks (especially incompletes) to have pain / neuropathic pain.

My Dad has had it for years. Like you, his right glute is significantly more atrophied than the left, and he is much weaker on his right side (incomplete paraplegic).

For him, the pain is likely a combination of neuropathic and due to the weakness/atrophy at that site leaving it more vulnerable to pressure injury and pain. He also has to stretch that hip much more or contractures/spasticity at the hip makes the pain worse. Tummy time is your friend.

Watch like crazy for pressure sores and do your pressure shifts, good cushions etc... Think about whether bursitis at that location could be an issue (in theory, can diagnose by tenderness pressing in that area by a skilled medical type and should show up on MRI) and it may respond to a steroid injection. Apparently, this is rarely a contributor.

Could try topical creams (anti-inflammatories), lidocaine patches on the site, kinesiotape. My Dad tried TENS briefly without much relief.

See a PT and have them work on stretching that hip flexor if you can't do it well yourself, assess if bursitis could be contributing, get you going on the best butt strengthening exercises for you. Do pressure reliefs religiously and rest off your butt when you can.

My Dad takes an assortment of pain meds (gabapentin, cymbalta and opioids), and loves sitting on a soft cold pack which can give instantaneous relief for him. He has been told to keep doing PT to build up the glutes as much as possible, but that is difficult and often makes the pain worse. He has a Nustep and avoids using it (like you avoid your FES bike) as that makes the pain worse.

It is rough. My Dad will continue to try to get stronger, will try medical cannabis for the bad times, and may still try a steroid injection at some point just to rule out bursitis as a possible contributor. Keeping busy is often the best way to deal with the pain. It was amusing to read the recent thread asking about whether butt implants were a possibility. Many are interested....

Sorry I don't have more promising recs...

[C5QuadGuy]

Thank you hlh! A lot of good pointers there. I really appreciate your detailed response. I'll be meeting my physio tomorrow so this will give us a lot to discuss!