Pressure registering as pain?

[DFE]

I am a 57 year old incomplete SCI (C5/6), 28 year post injury. About 18 months ago I noticed pain levels in the buttocks area was increasing to the extent that I cannot now sit up for longer than eight hours without excessive pain in the butt arising from the boney prominences, primarily the tail bone, right IT and the sacrum area. That eight hours in now under threat, some days I can only tolerate six hours sitting up. Taking a break after four hours, resting and getting up again does not work.

My only alternative to sitting is resting in bed. However this too has become hugely problematic as my left hip and left flank have become sensitive and sore to rest on. The soreness in my left flank is essentially along the line of the rib cage. As I twist off my side onto my back, that portion of my back on which I rest has also become sore. My back is now sore along the line of my spine even when resting against the back of my wheelchair. More recently my right hip has become sore to lie on and it is only a matter of time before my right flank succumbs. I had been trying to lie prone but even my chest is becoming sore to lie on. Sleep is hard to come by.


My skin condition is generally good. There is some marking in the sacrum area but it is under control. There is nothing to indicate cause of pain. I have had x-rays and scans done. There is some calcification on the right hip. I have had a seating assessment for wheelchair and cushion and air mattress. I have attended a number of pain clinics and tried many drugs to no effect. The jury is out on spinal cord implants.

There seems to be a pattern of my becoming sensitised to pressure which is registering as pain. Remove the pressure and the pain retreats, sometimes quickly, sometimes very slowly. The logic is to resolve the issue through mechanical means or by turning off the pain receptors. I think it is fair to conclude at this point that no great damage is being done to the skin (although I need to watch sacrum), flanks, hips, and IT skin integrity is very good.

My conclusion is that pain has its origins in the incomplete nature of my injury which after 28 years has spilled over from mild incomplete and sporadic pain in the anal and buttock areas in the early years, into a permanent sensitisation issue which is affecting every area of the body when pressure is applied, which is likely to progress and which I cannot reverse or halt. I believe I need interventions at the more radical end of the scale. However I would need a clinician to confirm what I am suggesting, preferably someone who has seen this problem arise in other patients. Equally I may well be barking up the wrong tree and I would love to hear an alternative explanation.

[smashms]

Do you have a power chair if so maybe try reclining for a bit to see if that relieves the pain

[crags]

Sitting pain can be very complicated with sources ranging from the obvious bony problem to the not so obvious visceral (internal organ) problem. There is very little research on the long-term consequences of sitting on pain patterns and that would be interesting to see.

One thing I would highly recommend that you get a power chair with tilt and recline so you can decompress your lower body every hour if desired. If removal of gravity helps then this approach should help.

One thing which is interesting is how abdominal gas that is trapped in the bowel that can cause very severe pain which in our case is reflexively manifested in neurogenic symptoms. Ever since I got my power chair with tilt and recline I noticed that if I tilt and recline all the way back bowel gas will frequently be released (stand clear) that would otherwise have stayed trapped in my bowel and large intestine and caused lower abdominal distention pain and cramping which I in fact do have.

But certainly given your age and duration/level of injury I would say it is high time to get a power chair with tilt and recline.

I recently permanently damaged my wrist/thumb and only wish I got the power chair a long time ago.

[fromnwmont]

If I sit without the right cushion my tailbone area begins to ache on a recent road trip with my wife sitting in our car for 12hrs caused increadable discomfort to the point I regressed back to complete loss of bowl & bladder function for 5 days! Kind of like "accupressure" gone bad.

[quad247]

I am also a C6,been injured 27 years,I found in the last few...years my pain has increased I need to re- posistion alot more,I could sleep all night without turning..now it's every few hours same in my chair and I had to increase my meds...
Good luck,
Nelson.

[darlagee22]

I was suspecting that gas increased my neuropain, but it didn't make sense to me so I got fed up again and tried to stop myself from continually trying to figure it out - one time something will cause it and another time it won't.

[Cowboys_Place]

I know I'm a little late to the discussion however what DFE described is exactly what I'm going through the only difference between us is I'm A complete 4/5 28 years post.. I get no relief no matter what position I'm in whether it be lying down or sitting up and Every single test I've had shows nothing major.. I finally got into a pain clinic and the Dr. is convinced the pain is coming from an arthritic si-joint which he injected steroid shot into one week ago so far it hasn't made a difference. .
I hope one day each and everyone of us is able to find some relieve from this miserable hell unfortunately so far the only time I've found any is when I'm able to get some sleep. .