pain and burning skin in butt from sitting, lying in bed

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danrising

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Unable to turn in bed, constant pain, cannot get comfortable. Spend the day and night changing sleeping and sitting places in order to get comfortable. I have a Quantum 6 Edge power chair with ROHO cushion. I let air in and let air out. Feels like I'm sitting on golf balls. After lying in bed for more than 1 to 2 hours, my backside from buttocks on down feels like it's on fire down to the bone. My caregiver has tried rotating me to my side but cannot stay there for more than an hour without pain in my shoulders. ANY SUGGESTIONS??
 

KimT

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The only suggestion I have is to buy a continually rotating bed. They cost a lot but you can control how often they rotate. I guess a cheaper solution would be to get an air mattress for the bed but I don't know much about them.
 

GilWest

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Look into an alternating pressure/low air loss bed.
 

danrising

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Supposed to be getting a Hill-Rom Progressa bed; but it has been months in getting approval through VA. I only hope it works. Trying to survive in the meantime.
 

lgelb

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What kind of bed/mattress/overlay do you have in the meantime? At the least you should have a high quality foam overlay (latex or furniture grade) and should be able to sleep supine for at least a few hours at a time. Are you already in a hospital bed?

If your shoulders are subluxated or at risk, a bed that turns you is not necessarily the answer. Make sure your arms are bent and supported when you are turned. There are pillows with shoulder cutouts (including PAP pillows) that might feel better on your side but they cannot compensate for weak joints. And I would certainly make sure your shoulders are protected both in your chair and in bed (arm completely cushioned and not pulling the joint out of place).

If you feel like the Roho is "golf balls," something should be changed. Do you have the right size cushion for your chair? Are you very thin on your butt? Are there indentations on it after sleeping/sitting? Are you sitting in a stable position? You might need more postural support. Also, are you getting a lot of shear when transferring?

Not everyone does well with the Roho; there are other options, e.g. Vicair, Stimulite, gel/air combos. If the VA is dragging its feet, could you be seen at a local seating clinic (often serves the spinal cord injury unit, among others) at a regular hospital? They can do pressure mapping and determine whether the Roho is right for you and if not, what could be.
 

danrising

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You have given us plenty to consider and look into. Thank you so much for your suggestions. We have a kinesiologist coming tomorrow from the VA. Hopefully, he will answer some of these questions. Will go ahead and look for those pillows for shoulders.
 

affected

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Definitely the ROHO should not feel like golf balls, it sounds to me like it is over-inflated.

You should partially sink into the ROHO.

The alternating air mattress may give a lot of relief.

Rather than turning right onto your side, your CALS could use pillows or wedges to lift one cheek off the bed a little and change the side it is on every couple of hours.

Laurie raises a good question too about whether when turning there is any 'shearing' happening. This means does your butt get dragged across the sheet?

What does your butt look like, as in what does the skin in the affected area look like. Is there any skin breaks or abrasions? Is it red and/or hot? If it is red, if your CALS presses her finger in the red area then lets go, does it return to red quickly or does it stay a bit white for a while?

Does you CALS do any gentle massage on the area when turning you?

During this visit tomorrow make sure the person looks at your butt skin, and at every place you sit or lay, with you in place to really help look at positioning strategies.

It's horrible, I'm sorry to hear you have this pain on top of everything else!
 

Nuts

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If you've been waiting months for a bed approval, it's time to raise a bit of hell with the VA. Have you called your doctor or social worker and told them how miserable you are?

Definately an alternating air/low air loss mattress. We paid for a lateral rotation mattress on our own after not hearing from the VA, and then got a call that they were ready to order it. GRRRRR. It has cut down on a lot of discomfort.
 

Vincent

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The first thing to do is get an OT in to adjust the roho you have. Over inflating can negate any benefit you might receive from using it. The next thing to try is the low air loss mattress. If that is too expensive there is the a V4 mattress with a roho insert. It's made by vitacare. Properly adjusted this should work. Good luck.
 
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