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Bedsores

Discussion in 'Lifestyle Management' started by Dainty, Dec 1, 2011.

  1. Dainty

    Dainty Senior Member

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    Does anyone else have experience with bedsores?

    I just discovered that I have several that will need to be carefully monitored and I've just begun researching and attempting to figure out creative ideas to resolve the issue.

    I had always imagined bedsores were only open, painful ulcers. Turns out in the beginning it isn't painful because dead tissue doesn't hurt! According to what I'm reading, bedsores happen when a pressure point gets squished long enough that basically not enough blood reaches the area and the tissue slowly starts to die. If it isn't caught and reversed in time, tiny blood clots form cutting off circulation to the area and then necrosis sets in, along with infection and such. Lovely stuff.

    For me, the combination of sleeping on a hard surface, recent happenings that made me 99% bedridden for a bit, and being significantly underweight all seem to have contributed to this fine little mess of sores I've got cooking.

    I see one of my doctors on Monday so will get some professional medical feedback on them then.

    In the meantime I'm attempting to figure out different positioning to try to give these a chance to heal. I'm using comfrey ointment, as the herb speeds healing, and I'm thinking that getting back on regular heparin therapy should also be helpful to keep the blood getting to those areas.

    Any other ideas?
     
  2. Tristen

    Tristen Senior Member

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    Your correct that pressure wounds (bed sores) are due to prolonged pressure on an area of the skin. This usually occurs over bony prominences such as the coccyx. The wounds are rated in 4 stages. You are describing stage 1 which is a pressure wound that has not yet opened, and which can be reversed. Stages 2-4 are open and each increasing number indicates trauma into deeper tissue.

    The goal of course is to prevent them from occurring to begin with. This is done by getting as much body movement as possible. Being bed bound this means rotating and turning the body to avoid pressure on any area for very long. You can use pillows or foam wedges to prop your body up in different positions. Turn every 15 minutes staying completely off the wound area until healed. Good nutrition and hydration are very important as well. Being at a stage 1 would be the same but more aggressive with these actions. Last I knew, we didn't use any kind of dressing on a stage 1, but ask your doctor on that in case things have changed.

    You don't want to move to stage 2 because that would require all of the above plus dressings. It would also be much harder to reverse, and would you at risk for infection. For people at very high risk, a specialized bed would be in in order. High risk not only involves being immobile and bedridden, it's being thin, and having poor nutritional and hydration status. Hope that helps.
     
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  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You can get very portable egg-crate" mattresses very cheaply at places like Walmart and other discounters. I think hospitals used them till they got more "high-tech" solutions. I used one for a couple of years and it did help with distributing weight.

    Best wishes,
    Sushi
     
  4. hurtingallthetimet

    hurtingallthetimet Senior Member

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    keep seeing your doctor..if you are bed bound call and ask them to send out a home nurse..im not sure how that works...but they should be able to help you...that can be serious...i hope that you feel better..

    ive not had bed sores so sorry not alot of advice but i hope you get some great answers...
     
  5. Enid

    Enid Senior Member

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    I agree with Sushi on the benefits of an "egg-crate" type of mattress. I've a hard mattress cover type allowing a much more even distribution of body weight. Couldn't recommend more highly.
     
  6. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Unfortunately, most egg-crate pads are made out of urethane foam which is super toxic for those of us with MCS. Any MCS sufferers with alternative ideas?
     
  7. Sparrow

    Sparrow Senior Member

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    I have some chemical sensitivities and couldn't go anywhere near the memory foam pad we initially tried. Wool mattress toppers have been my pressure-reduction pad of choice.

    Unfortunately, once they're there, these buggers are brutally hard to get rid of, I've found. I got the beginnings of one on my left hip before I knew any better (nobody ever mentioned the possibility to me when I became bed bound). It's slightly better now, but if I lie on that side for more than a minute, it will start to hurt again, and the healing process takes a backslide. I try to stay off it 99% of the time, but sometimes my other hip starts hurting and I need to move around to avoid getting a sore on that side too. I also find that the ear I lie on tends to be a problem spot for me.

    Now that the area is sensitive, lying on soft things or mattress pads or anything doesn't make enough of a difference to allow me to use that side. I use them, but for prevention of more rather than healing the one that's already there. Wish I had better advice. It's been seven months, and it's still not gone. I do have loads of sympathy, though. They stink. A lot. :(
     
  8. Dainty

    Dainty Senior Member

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    Thanks, everyone. Tristen, your post confirms everything I've read so far, which is why this situation is concerning to me - because as 3CFIDS noted, MCS really gets in the way of conventional solutions.

    My current bedding situation is wooden slats with a blanket folded over on top of them that softens it slightly. I cannot have any pillows or foam products of any kind, but I do have sheets, clothing, and another blanket that I can strategically arrange. If anyone is interested in reading more about my bedding woes I've posted extensively about my history here.

    Since I last posted I've been experimenting with all manners of positions and propping myself up and such. Within about 8 hours of avoiding pressure on the hardest hit areas I was getting considerable pain from my two worst sores. I actually remember commonly feeling this pain if I was up longer than usual and would relieve it by lying down again on the pressure point, not realizing what was happening. I honestly just thought they were calluses because the skin became thick and rough and I lost feeling in the area. I actually appreciated it.

    Forced, now, to transfer that pressure to other areas of my body has also been painful. It's impossible to find a position where there's no undue pressure on my body, simply due to the facts of having so little body fat and such a hard surface to sleep on. But now that I'm aware I'm paying close attention, transferring the pressure points as much as I can, massaging them afterwards, moving around, etc and I'm fairly certain nothing new is developing so far.

    The two worst sores are still painful and itchy, but I have been quite successful in keeping my weight off them. I am somewhat sleep-deprived, though.

    Softer sleeping options are possible for me if I wear my gas mask, and I'm probably going to try that tonight. The only issues are that it leaves a slight chemical burn where it contacts my skin and the bulkiness twists my neck a bit, but I think toggling between my options of staying out of bed as much as possible and the two beds are workable enough for the moment to stop the progression until we find a better solution. There are a few more ideas in the works.

    Obviously if I can manage to gain some weight that should help too. I had already been quite underweight and then lost 5 pounds recently due to another severe GI episode and then the flu soon after, and other issues. Now that I can eat again I'm packing on as much as my body can handle, and hopefully those numbers will go up.

    Edit: Wow, Sparrow, sorry to hear that. We were writing our posts at the same time...it'll take a little while for me to digest your experience.
     
  9. Tristen

    Tristen Senior Member

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    Omg, Dainty & Sparrow, this sounds terrible. I'm amazed with your attitudes in spite of such an extreme challenge.

    I've spent some years being bed bound, but I don't have MCS. So, I really have no personal experience with that. One of my only real life me/cfs friends had severe MCS along with her me/cfs. She has now 90% recovered with Lyme Tx. I really lucked out not getting the MCS, or the Pain. But I've paid my dues with the severity of the other symptoms.

    I missed that you had this MCS problem. Of course returning to being a little more mobile would be the best solution. Meanwhile, it does seems finding a hypoallergenic therapeutic mattress and bedding is way to go. You have probably searched this far beyond what I could ever find, but here's one. http://www.achooallergy.com/bedding.asp Maybe it will lead to more.
     
  10. Dainty

    Dainty Senior Member

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    Thanks, Tristen. Glad you haven't experienced MCS - it isn't nearly as enjoyable as we make it out to be. ;)

    Yes, finding soft bedding would be best. Unfortunately since I cannot tolerate any form of batting (even organic!), foam, feathers, furs, plastic or vinyl it's really tough to find adequate cushioning. We're trying various techniques to get as much "loft" out of layers of fabric as possible. We're purchasing more fabric now, but it'll take at least a month or two of processing before it's tolerable enough to sew into things for me.

    A registered nurse from way back in the day said they used to make doughnut-shaped cushions for those with bedsores. My caregiver will be working on that as soon as the fabric is ready.

    My doctor didn't have much input, basically we were already doing everything we could, made a few suggestions for topical help.

    This is a whole new chapter in managing my health. I laid on my stomach for too long last night and have the beginnings of two new bedsores as a result. They should heal fine as long as I stay of them....how to stay off them?! Decided to stay completely off my left side where the worst was located and prop my right side as best I could to protect the second-worst sore. I got some sleep that way, but woke up to find that sore had enlarged by an inch in one direction. Oops. After 7 hours of keeping off it the pain has hit there with a vengeance.

    I cannot sit without putting pressure on two large sores. I'm spending most of my time standing or crouching, but this level of activity is unsustainable for me and I cannot afford to crash because of the sores. So sleep deprived...

    I figure if I can just get the most serious ones to the point where they aren't quite as hard and leathery and gross brown color, then I should be able to manage my sleeping and resting patterns to a state of minor sores that never begin to tip towards dangerous. I count 8 right now, one that's nearly healed (it had developed only in the past month) and 4 of which are very long term and serious. Others seem semi-okay. In addition there's also the two I recently acquired, but I'm not really counting those because they should heal quickly.

    I'm on a regime of heparin that should help, I'm working hard as I can to gain weight, I have more herbal topical applications in the mail and specialized padding is in the future. Unfortunately there's not a lot I can do with my diet (extremely severe restriction...I eat the same thing every meal) but I figure I can cancel out that downside by my aggressive management of these sores in every other area possible.

    Here's hoping! :victory:
     
  11. Tristen

    Tristen Senior Member

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    I felt cornered (to say the least) with the whole bed bound illness period. But your dealing with an additional level of challenge on that one. Again, I am amazed with your attitude in spite of such extreme adversity. For myself, that's a major part of the definition of true success in this life. But I'm sure you would agree the catalyst for this level of growth has been overkill.

    Yes, you can get the doughnut pillows and other foam wedgies and all kinds of props. Question is if you can tolerate them. There are medicated dressing for this purpose as well, but normally used on open wounds. PT and PT are good at working with these skin issues too. But, you can't beat the knowledge of a Nurse who has done wound care in places like SNF's (skilled nursing facilities).

    Your way ahead of me on this one. I'm just concerned that you get this turned around before it gets worse. All the best.
     
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  12. Calathea

    Calathea Darkness therapy

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    Dainty - have you tried bamboo batting? I don't know a huge amount about the MCS side of things, but as a quilter I've been noticing some of the newer battings that have emerged on the market lately. Soy is another one, no idea how that would react either.

    I don't have bedsores, but I'm having problems with finding it painful to lie in bed these days and am waiting on a visit from the district nurse to discuss mattress toppers. My chemical sensitivities are at the level of fussing about toiletries, cleaning products and the like, but I think that's fairly mild. Any suggestions as to what I should get or avoid?
     
  13. Dainty

    Dainty Senior Member

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    Thank you, Tristen. I really appreciate all the concern and info. I feel badly at how my level of sensitivities knocks out just about all the options. It's like the hands of everyone who wants to help me are tied! And that's no fun for others to experience.

    From what I've read of bamboo, most of it on the market is actually rayon that has been made from bamboo. Rayon is created from a highly chemical process. This page has info on the details. The Federal Trade Commission is actually cracking down on companies for false labeling in this regard:

    A few years back I looked into bamboo fabric, and while I loved the feel of the samples it wasn't something that worked for me. I haven't looked into soy, yet.

    The problem I keep running into with any batting, even organic cotton batting, is that it cannot withstand the home processing required for any fibers to be tolerable to me like a fabric can. In order for a single piece of organic unbleached, undyed cotton to be tolerable for me it must go through several cycles of being boiled for days, soaked in baking soda water, soaked in vinegar, and then washed, and the process is repeated over and over and over again. After some time it's brought out to me and I'll test it, and if it causes a reaction then it has to be processed some more.

    What am I reacting to in this natural fiber? Who knows. Some fabric is better than others. Some can never be processed enough to be tolerable. It's baffling. But it's the way things are for me, and since the reaction is life-threatening it isn't something I can just choose to put up with.

    So since batting and stuffing can't be put through this necessary process, they're generally out of the picture for me, though it hasn't stopped us from trying it.

    The latest attempt is trying samples of buckwheat hulls, millet hulls, and kapok. The last one is more of a stuffing/batting so we'll see how that goes. The hulls would make for a sort of beanbag-type setup. I used buckwheat hull pillows before my sensitivities became severe, and recently learned that quality and differences in manufacturing could account for my previous issues with it. The hope is I can tolerate one of these and we'll make a mattress - essentially a giant natural beanbag for me to sleep on. IF these samples don't work there's also cherrystones (pits) to test as a possibility.

    It'll take some time, though, as even if/when we find a suitable filling the fabric to hold the mattress together needs to go through the above mentioned process, and we're just purchasing it now.

    I've begun to develop a routine of rotating positions that should maximize my sores' chances of healing while still barely allowing me enough rest/sleep to keep me going without crashing. It's a delicate balance, and I did have a mini-crash where I was forced to forget about being careful with my sores for a day or two because my body's demand for rest and sleep overwhelmed every other priority. But I think I can manage these and still be okay, I'll just be a bit out of it and a little more fragile than usual until we can find a softer bedding solution.

    Avoid synthetic foam, that's about the worst one. If you're certain you don't have a latex allergy then natural latex is a very safe option, however make certian it says "100% natural latex" because labeling may say "natural latex" and still contain a fair amount of synthetic rubber made of petrochemicals.

    Cotton batting that isn't organic is also a bad idea. With other textiles such as wool batting it doesn't matter nearly as much (you just want to make sure they didn't do sheep dipping or carbonization), but cotton has a very high amount of pesticides used on it. If you can wash the fabric then all measureable amounts of pesticides can be removed, but you can't exactly wash batting. Also, with cotton batting you get the potential issue of dust mites. So if you are to consider cotton batting at all, I'd recommend it be organic and you pair it with a dust mite cover. Cotton tends to lose its loft though so it isn't ideal as a topper anyway.

    Wool is probably about the best you can get. It keeps its loft, conventionally has fewer chemicals (though with fabrics will depend on processing, see here), and apparently there's no worry of dust mites. The main concern is if you're getting a sheepskin, which will be tanned with very harsh chemicals that continue to outgas and go right into your lungs. If you want the benefits of a sheepskin without the chemicals I know of at least one place that sells a fleece woven into an organic cotton backing that should mimic the effect splendidly. I have no affiliation with that company but they helped me with samples of cotton batting a few years ago and demonstrated excellent customer service.

    I strongly recommend people get the most chemically safe option they can afford, even if their level of tolerance would allow for a compromise. One reason is that chemical sensitivities can worsen (don't I know it!) and the best way to make sure they don't is to stay as far "ahead" of them as possible. The other reason, though, is just because it's healthier to have fewer exposures to toxic chemicals, and with this condition we need to take advantage of every possible inch of health we can lay our hands on.
     
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  14. Calathea

    Calathea Darkness therapy

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    I can't afford anything, I'm going to be getting whatever the district nurse can loan me.

    I should have mentioned that wool isn't an option, as I'm vegan. I've used non-organic cotton batting for both the sofa quilt and the bedspread quilt, and haven't noticed any reaction to it at all, either when I was handling it directly to make up the quilt or after the quilt was made. The bedspread has been washed by now. I've tried lying on top of it and the duvet, and it made no difference whatsoever to the pain.

    On looking up bamboo batting, apparently it is indeed processed to high heaven. It sounds as if soy would be as well, judging from this page. Have you tried asking around in quilting communities, though? I realise that you've tried an enormous number of things, but people who are experts in layering fabrics might have a trick or two up their sleeves which is new, or at least have useful ideas about the best way of working with hulls etc.
     
  15. WillowJ

    WillowJ Senior Member

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    hugs for you, Dainty. I don't have any suggestions to add, just well wishes.

    all the best to you, too, Calathea
     

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