Advice please on mouth ulcers and blisters!!

It has recently been confirmed that I have small nerve peripheral neuropathy and Raynaurds. Other autoimmune stuff still under investigation. Have had a nice day with my husband and mum. To stubborn to use a wheelchair. I know I have over done it and now for the next few days I will suffer for it. Right now my mouth is driving me mad. It feels like it's on fire! It is the most disgusting feeling, like the skin is coming of the roof of my mouth! At the moment I am using prednisolone as a mouthwash 5ml a day. If I'm bad in the morning I will use the full 5ml at once, as I have done this morning (unfortunately) and I don't like to take more until I see the doctor and ask her for advice. So it's down to usual painkillers and home made lollies. I have tried Nystan, no result. Another doctor gave me a tablet that you need to hold on the ulcer till tab dissolves" which one do I choose first" didn't even look in my mouth. I've decided my mouth swells that much I look like an extra for Planet of the Apes (sorry I've written that and the spelling doesn't look right) all sorts of rubbish comes out of my head. With my chin swelling (lesions) and looking like Kirk Douglas I could perhaps get a film part ! Only thing I'm a fifty something female! Any advice or film offers please , no Botox required lol. Hope you are having a good day LottieD x

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  • Would you wear specs because you can't see well? Would you wear a hearing aid to hear your children talk to you?

    Then using a wheelchair because your legs don't work brilliantly is just the same.

  • I have specs, I have a niece with CP. Unfortunately I can't do my job which means pushing children and young adults in wheelchairs in a wheelchair! My Rheumys parting shot was if you don't use them you lose them and I'm trying so hard. Like you I always thought that if you can get from a to b who cares. I now feel it's so different when it happens to you. I have said I will use a wheelchair when going on holiday because I know I won't be able to trot round the airport as I usually do. This illness is new to me... don't think I am being flippant about it. This is my way of dealing with it.

  • I already use a wheelchair when travelling - it was a revelation. And I would use it for appropriate applications. It doesn't have to be all the time - just where it would help you. One of my friends used to take the wheelchair and push it herself, knowing it was there when her legs finally objected too much. And if a wheelchair is a step too far - what about a rollator with a seat for the same purpose?

    Sorry about your job - that is probably the hardest thing.

  • Yes it is and I have so much respect for the young people I worked with. Even before my illness I thought where totally amazing. I miss them so much. It was a job that I chose after 26 years in a different profession to retrain for. I feel that is the worst thing that has been taken.

  • I have to second this - I know there's a big push to get people to not use a chair unless they absolutely have to, but all that ended up doing for me was putting myself through unnecessary pain and putting off going anywhere at all because walking hurt so much. I now have a powerchair and wow, it makes a huge difference to my life! I go out and do things I wouldn't have dreamed of doing before. I don't use it all the time - only on trips where I'd be walking or standing for more than a five minute stretch - and I sometimes get a kick out of people's faces when I get up from the chair. But wheelchairs are not something you are 'trapped' in - that mentality is an erroneous one. My wheelchair is freedom, not a burden, not something I'm 'bound' to, and I think attitudes about mobility aids or aids in general really needs to change, especially in the medical profession that thinks people in a wheelchair have somehow 'given up'. I know I stood in my own way to getting help and support because I didn't think I was 'that bad' and all I did was make myself suffer. But it takes a while to get one's head around to that point, and I empathise completely. The Dutchman still thinks I'm too stubborn in many instances (and he's right).

    As for mouth ulcers, I found I was lacking in various nutrients which was definitely part of the problem for me (Vit C and B-complex for me; maybe consider a blood test?). So I take Vit C in tablet form whenever they creep up on me and keep a balanced diet the best I can, and it has helped. I also do oil-pulling as my teeth and gums are in a pretty bad state due to illness and dentist visits make it worse for some reason - oil pulling with sea salt rinses has helped a lot but go easy on the saline solution if your mouth is already hurting because it WILL sting.

    I don't hold with the ZOMGTOXICITY thing because without my medication I'd probably be dead by now, however there are things modern medicine can overlook, and it's a matter of sometimes checking into the basics; I was really surprised I was struggling with nutrient absorption and of course my doctors weren't thinking about checking it out (because fat women clearly don't have these issues *eyeroll*). So if you can get bloods done to check what you might be lacking, this could help considerably.

    Good luck!

  • Yes - I think you have summed up exactly how I think.

    My husband has lung problems (due to not-lung-cancer) 22 years ago. I doubt they dreamt he'd live long enough to have heart and lung problems so it was never mentioned but they are slowly starting to appear. I find it frustrating since, although I can still manage to walk a lot at my own pace, he can't manage more than the slightest slope without getting out of breath so refuses to do them. That means I have to go out for some exercise on my own - and it is so depressing. I've identified the mobility scooter for us in a year or two though - a folding one that fits into the smallest car boot. So we can get a pair and have them in our campervan garage and tour Europe... But that is equally frustrating - because you can't really use them for a while and then get out and walk!

    Should have bought them this summer before the pound crashed... ;-)

  • Hi LottieD

    I too get mouth ulcers etc too the point I can't eat, I use corsdyl mouthwash daily this worked for me x

  • I use salt rinses (sea salt not table salt), garlic, plenty of fruit and veg. in my diet, the right amount of rest for me and exercise. The trouble with drugs is they further intoxicate an already struggling body and the body gets rid of it any way it can; by rashes, skin bleeding, ulcers, etc. as the skin is an organ, too, just like the liver and kidneys and if these are struggling then it resorts to using the skin - that is how I understand it from my experiences. There is an epidemic of fungal problems these days with everyone taking so many antibiotics that disturb and even destroy the gut flora balance. I know because I am one of the sufferers and I can now only use certain treatments that don't involve taking in more toxicity to my struggling body.

  • Hi LottieD,

    We did an article a few years ago about mouth ulcers in lupus and collected lots of people's tips for coping with them. Hopefully you can find something helpful at healthunlocked.com/lupusuk/...

  • Thanks for all the suggestions. It's been helpful to pick your brains! Definitely plenty to try. Thanks again LottieD

  • Somebody recommended liquorice when I was having ulcer problems and it worked for me. I bought a packet of chewing liquorice from my local supermarket and I just have a piece when I feel an ulcer coming. I don't usually try things like this but I was desperate and it has really helped me

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