cpap strap leaves painful sores and welts, please advise

By larick Latest Activity May 25, 2012 at 9:12 am Views 4,224 Replies 12 Likes 1

larick

Hi, my name is Rick. I am living with severe sleep apnea. I use a full face mask, but I have to keep it so tight to prevent leaks the straps leave deep cuts and welts in the back of my neck. The pain is like a 2nd degree kitchen burn. Sometimes they scab over. I also have Sjogren's Syndrome, which possibly makes my skin easier to break?
Every AM I wake up in pain, whimpering as I pull off mask, touch the purple welts on neck, take pain relievers, put antibiotic ointment on the cuts & raised welts and an ice pack to numb it. I have a pain relief rx for an unrelated long-term injury, so after I take that the pain is more tolerable all day.
I have tried many masks and am on a pressure of 17, which I still cant sleep on my back & breathe, but only my side, which means to avoid pillow causing leak, strap must be very tight. When I see Dr. I have to tell him I need even higher pressure, which means a tighter strap!
I could deal with pain if it wasn't constant. But it never gets to heal. It feels like a 2nd degree burn I get to rip open afresh every night! I am now putting strap over a line of crusted scabs & purple welts and it bites deep into my skin again. I don't even care about the marks it leaves on my face. I just can't bear the pain of having to strap it over the welts & scabs from this morning and it leaks until I pull it as tight as it will go. I am a regular visit to cpap clinic at the sleep center at UPenn, which is one of the best on east coast, so I assume they aren't just terrible at masking me, I have tried on at least 10 masks and pretended to sleep in office. Will my neck eventually just callus and be ok like when you buy new boots? Has this happened to anyone else? Does anyone have suggestions about how to treat these wounds in AM and prepare them for further abuse in evening? Is there something I should I put under the strap besides a bandage?

Sorry this is really long! I am just so desperate! Thank you for any response!

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Replies (12 replies)

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  • Tez62
    Tez62 July 11, 2012 at 12:13 am   

    Rick, sorry to hear about your issue, I use a Resmed Mirage Quattro FFM, I don't get the problems you are saying because my pressure is on 12 and try to keep it as lose as possible. Tightening it seems to make my AHI's go up. To stop the leaks, do you use maskliners, I won't do without them, also you should have your hose coming from above your head. You can buy a hose lift or maybe able to make one yourself. The ideal is the gravity pulls the mask up rather than dragging down and saves you getting tangled. Try those couple of things and you may be able to lossen the straps a bit. On the pillow, I used to sleep on my stomach and found it difficult to learn how to sleep on me side and back, I turn my pillow horizontal, up and down rather than vertical across, that way there is less real estate to know my mask on, hope these small tips may help.

  • shaun1961
    shaun1961 July 10, 2012 at 6:23 am   

    Rick I have had a problem with this but started rubbing baby oil into my neck and then pacing a folded face flannel over the sore and placing the strap over the top seems to be easing off and nearly gone now the sores not my neck unfortunately.lol

  • larick
    larick May 26, 2012 at 1:10 pm   

    Thank you so much for the advice! The pillow seems perfect, I will have to get one. I used to be a stomach sleeper with my forehead resting on something (it was the only way i could breathe) & I am trying to get used to my side. I think the fit problem is that if I want the bottom to fit a nice seal without tightening, the forehead piece needs to be looser, which means it does not touch my forehead at all. The first 2 masks gave me a staff infection across bridge of nose with little blisters full of pus. I now own a Paykel that covers chin and a respironics comfort gel full in Small. I use the former. My seal does not look inflatable. It is a thick gel material like a pillow inside then a thin see through "blanket. I did try on masks on a bed with pressure on in the store/clinic. I tried on at least 5 brands in multiple sizes and none seemed to work right for me the way she put them on even I tried to adjust. So maybe that specific respiratory therapist doesn't know how to fit someone well. Tracy, Can I buy the inflate seal seperately for my mask? I also think I am blocking my CO2 and I definitely think I am allergic to my straps! I will take the advice here and let you know what worked- do you know if one can get cpap pillows through insurance as medical supply? Thank you all
    larick

  • Tracy
    Tracy May 28, 2012 at 11:11 am   

    So my theory is - if what you are doing is not working, change what you are doing. Not sure which masks you have tried and failed on but here is my 2 cents…

    1. No you cannot buy the inflate seal separately for any mask…mask brands and styles "come with" particular cushion components specific to the style.
    2. Fisher and Paykel ( F&P) ff mask with the grey cushion are the 431 or 432 and they do NOT have the dual cushion.
    3. F&P has another ff mask called Forma that DOES have a dual inflatable second cushion - ask to see it at your cpap supplier…it was released a couple of years ago and was an upgrade to their 431 and 432
    4. There are a LOT of great ff masks to choose from including Respironics Full Life and ResMed Quattro FX - BUT KNOW that all masks are subject to our own distinct facial features and just because one mask is popular does not mean it fits eveyone.
    5. Lastly, I was lookiing at your picture to view YOUR facial features and although its hard to opine by picture and not seeing you in person, you appear to me to have a short face and short chin area and I believe these are your challenges.

    Having a short face means many of the larger mask frames ( even when one wears a size small mask) cause the frame to lay too high on the face - meaning they tend to lay too close to the area just under the eyes. I know this to be true for me as I also have a "short face" and chin. What happens is that we get leak in the eye area/ the top of the mask and so to compensate, we must over tighten the straps. So this means that if that's happening, that mask is not the right one for you. You need to find a different mask that has a SHORTER frame that does not lay so high on your face. This is one of the reasons why i also suggested you look at the ResMed Mirage Liberty mask.

    So I strongly urge you to visit your cpap supplier asap - try on some new ff masks and make sure you pay attention to the height - verticle length of mask frames. Choose one that does not lay too high on your face!

    Hope this makes sense!
    Keep me in the loop!
    tracy

  • larick
    larick May 26, 2012 at 1:10 pm   
    Edited May 26, 2012 at 4:37 pm by larick

    oops i posted it twice!
    Thank you all for your helpful advice.

  • Tracy
    Tracy May 26, 2012 at 10:27 am   

    larick - tigher is not better, nor more effective. In truth, no mask should ever need be tightened so much that it causes any sores to develop. Machine pressure should not really affect how much you need to tighten the straps either - we often THINK it does, but not really. I am on pressure of 20 and can wear a mask relatively loose once it's been fitted and adjusted properly.

    So - here's what you need to know, some tips for you about mask fit. First make sure you have the right size and style mask for your face. Then remember that final fit MUST take place when you are in bed, machine turned on and your head on your pillow in your normal sleeping position…have straps loose and then slowly tighten JUST UNTIL you get a good seal. THEN, most masks today have a dual cushion ( one is a fine cushion that lays next to the thicker cushion) and they MUST be allowed to inflate by "seating". So, after your straps are tightened a bit, then seat by pulling the mask straight out and away from your face to allow the 2 cushions to inflate. You only need to pull the mask out an inch or two and quickly lay back on your face.
    The introduction of dual cushion masks several years ago really changed the game for us and allow us to wear out masks much looser and more comfortably and still get an awesome seal. Sometimes they forget to tell us patients about the need for dual cushion mask seating. :( So, I am really puzzled as to why you are suffering so much. Remember that when we choose a new mask at our medical supplier, they often fit us while we are sitting in a chair or standing up. It may feel just fine then, but when we get home and lay down - gravity takes over and that fit is no longer appropriate.
    My favorite CPAP pillow is the Double Edge PAPillow which you can see at www.papillow.com ( disclaimer, its my design) It was the first pillow created for CPAP users who side or stomach sleep. My personal problem was side sleeping caused my mask to be pressed in to my face and thus move and leak. I also had the problem of my soft pillow blocking the exhalation ports/holes on my mask and I was then at risk of rebreathing CO2 - very dangerous. So PAPillow allows our mask to hang off the edge and allow CO2 escape and lessen pressure point soreness from our mask frames. Consider this pillow.
    Heal your wounds - ouch, so sorry you have such pain. Maybe ask your doc or pharmacist what they best way to do that - I like Neosporin - and cover with guaze so your strap does not lay directly on the wound.
    Where on the face are you experiencing leak? Up in the eye area? sides or bottom? Wondering it you have tried the ResMed Mirage Liberty? Its my full face mask of choice because nothing lays above the nostrils, leaving very few possibilities of mask leak! Check that one out.

    Keep asking questions here - we all want to help you!
    tracy

  • kirkham715
    kirkham715 May 25, 2012 at 11:55 pm   

    Hi
    I do not have your problem, but have some suggestions. My Swift masks have come with a fabric sleeve that slides over the plastic straps. You could probably wrap your straps with a piece of scrap silk or microfiber you could get very cheaply at a fabric store. Another idea might be moleskin. It is used to cushion sores on the feet and to protect against rubbing. Your pharmacy will have packs of it in the foot care section. You can cut them to fit the irritating sections on your mask. The moleskin will often come with adhesive on one side and you could just stick it on the offending strap or part of you mask. Good luck

  • kirkham715
    kirkham715 May 26, 2012 at 12:09 am   

    I checked - the sleeves that go over the straps on my mask are available at many supply sites on the web. They are Resmed Swift FX soft wraps - Google them - they are about $12 - I think they are microfiber with a velcro side that you wrap around your straps - they are about 5-6 inches long and would wrap around a 3/4th inch strap - other sizes and shapes are available - again, good luck

  • DAT4
    DAT4 May 25, 2012 at 1:39 pm   

    Hi Rick,
    Sounds like a miserable way to wake up. I have had similar but not as severe problem. I found there are cloth "gaskets" (for lack of a more appropriate term) that fit between my mask and skin and they help tremendously re gaps between my skin and mask and air leaks. I use/place a wash cloth between my head and the straps and find that a bit clumsey but eliminates the irritation of the straps and my head. I suspect I'm allergic or sensitive to the material in the straps.
    Good luck,
    Dennis

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