I wonder if anyone can give some advice on this subject? As I’ve started sitting much more, I’ve developed sore areas below the ‘sitting bone’ areas of my pelvis, where the muscle mass has atrophied through rweduced walking.
I have a pressure relieving cushion from my wheelchair(used outside of the house) which I use on my kitchen chair & ‘Repose’ lilo seat & full sized for in bed. I use sudacream in the morning & before bed, although there’s no visible redness. A low dose of Nortriptyline makes little difference, ibuprofen sometimes helps, but isn’t good long term.
I try to employ ‘mind over matter’, but am not sure how long to sit through the discomfort.
I’m wondering whether to ask for pregabalin or gabapentin?
If it’s like this now, what will it be like when I’m a full-time wheelchair user?
Hi, I do know about this as my area of work , if you have skin loss or pain over a bony prominence especially as at risk from long time seated or lying you are at risk or or may have developed pressure ulceration. the tissue damages below, like a cone shape the narrow end been at the top of skin layer. You say no redness which is good, if it goes red, press it, if is stays red, not turns white and back to red, it is a grade 1 and can result in further tissue damage if not treated. Keep assessing the area and others regularly. I would get in touch with district nurses as they are trained in this area to reassess your equipment, and give a good skin inspection if you wanted it? We have a pressure ulcer co-ordinator team but not all areas have this. The repose are very good, there are alternatives however and may suit you better? Do you pump up the repose weekly? As it can lose air. Also if you can relieve your own pressure hourly and in bed use a 30 degree tilt with pillow in back to take pressure off the sore area. The pressure relief is the main thing, also you say you us escudo cream, I would request to try a cavil on cream or medi honey or other barrier product for intact skin, the sudocrem can be a bit drying on skin and if any moisture problems can work against, stopping absorbent products from working etc… I can’t comment on analgesia, speak to the GP, but the pressure relief is the main thing for this. Hope it feels better soon Take care Ally xx
Totally agree with Alley; get any pressure off that area; lay on side in bed. Believe me you don’t want a pressure sore and once you get one that area becomes prone.
You say you have a pressure reliving cushion but there are many grades/types; as Alley says speak to your District Nurse or MS Nurse. A pressure sore can appear very quickly but can take years to repair.
Thanks for this Allyf12. The district nurses supplied the repose to me - and at the time I was using E45 cream which they said was ok, but the MS nurse said to use sudafed and my GP prescribed it! My skin feels well moisturised from it, though I might ask for one of the alternatives that you mention. I’m planning to talk to my GP on the phone about analgesia and my OT is asking for wheelchair serices to map my bottom for exact pressure areas and the appropriateness of my cushion.
With regard to in bed, do you mean to put a pillow under the small of my back to achieve a 30 deg tilt? The discomfort is less in bed on the repose, & I go to sleep on my side, but wake up on my back…will be ‘interesting’ to try to change this habit!
Hi again, Yes wheelchair services can get you a made to measure cushion for your needs. The pillow needs to be along your back so as to tilt you and not fall on your back when asleep, can get repose wedge cushions to do this too, put pillow case over it. If it’s so sore now please be careful, it if goes it can take a while to heel if full thickness damage to tissue. District nurse should be able to give you leaflet with diagram of 30degree tilt, if not I can get one to you, PM me if you want to. NICE guidelines have pressure relieving leaflet with advice too. Take care Ally x
I get this a lot, I can only drive a few miles before the pain becomes unbareable, it then renders my legs useless and I cant stand without really bad pain, I am taking baclofen for it and it is helping a lot, I can drive further and the pain isnt so intense when I try and get out of the car, ive just gone up to 10 ml 3 times a day and when I go on longer journeys I can take 20 ml an hour before we leave. I sit to the side on our sofa and lay on my side to sleep.Hope you feel better soon
Thanks Barnabycrumble. I already take Baclofen (& the nortriptyline) - wasn’t aware that this w/should help - it doesn’t for me!
My MS nurse has suggested that I try gabapentin or pregabalin - while being mindful of not causing further damage. I sit on my wheelchair cushion in the car, which helps, although I have to put another small cushion underneath it, so that I sit as level & upright as possible, to compensate for the fact that all car seats seem to be designed with a slope, and bucket shaped like a racing car, which makes transferring in & out ‘interesting’!
Had a total knee replacement op 3weeks ago - and l have had a sore bum - having to sit down a bit more lately. l have been using the special cushion out of my wheelchair -but now l have ordered a ‘donut’ shaped cushion from Amazon. lt is supposed to help relieve pressure areas. l do try not to sit for more then 30mins without moving about. So no going to the cinema for me just yet. I can’t seem to get comfy at night. Tried placing pillows between legs or underneath feet. l have a memoryfoam mattress and pillows which normally are very comfortable.
l bought a revolving seat that sits on the car seat to help get in and out of the car. lt enables you to swing both legs round together.
You can’t drive whilst sat on it - well its not recommended to.
I asked my OT about a donut shaped cushion as the pressure relief/treatment cushions recommended by my district nurse and in the local disability catalogue are not this shape - the DN said something about having some pressure there to help with the healing…
I’ve thought about the revolving seat option, but as I have trouble moving my legs and am already piled up on 2 cushions, I think that this would add, rather then remove, problems for me.
My MS nurse wanted to keep doping me up with gebapentin and I refused as I detest taking meds. A pressure sore was developing at the base of my spine and on my lower back and I was getting really worried about it and kept complaining to my MS nurse about it. She came in one day with a waxy consistency healing salve. After reading that it contained calendula and almond oil, beeswax, eucalyptus oil, east cape manuka oil and cypress oil I was happy as it was natural. She said she bought it from a shop online and gave it to me as a gift. It healed the developing sores admirably and three months down the line the sores have not developed. I also got a new cushion recently and that has made life much more comfortable plus I got a new cushion for the car.