My fingers on my right hand are swollen and hurting and need to be kept cool and in the morning the right hand is like a claw, all bent in, and useless like a bunch of sausages.
If I keep them cool the raynauds will be worse, can't win.
My knees and feet are swollen too, like tree trunks, and belly bloated again.
Mouth as dry as dust and lips all sore and cracked, skin generally dry as dust.
The fungus has come back in my mouth and on tongue, after two treatments,one from useless quack who didn't even look at it.and a specialist at the hospital gave me some pills, forgot their name.Got to go back about that.
Just look at this blokes video, no way I am going on a no carbohydrate diet.No way. If you listen and act on what he says you will have no life at all.
Hey Plumcake..... ah no .... so sorry things not been improving for you.
Are you still enjoying your pineapples ? Are you having any juices ? I havent watched the above video yet, but I have to tell you that I had to cut out the carbs last december, as the 4 month candida infection in my mouth was out of control and really getting me down ! After a few courses of the anitfungal tablet plus the anit fungal mouth wash it was reluctanctly getting better. I also cut out mushrooms and any yeast based product - bread, pasta, rice.
In Feb, I had a course of metronidazole for the calcinosis infection in my knee, which brought the candida back on my tongue. The GP prescribed me some daktarin (similar to wallpaper paste consistency) as well as an antifungal tablet and after a few weeks the candida on my tongue was reluctantly clearing.
I then had to go on 2 weeks of 2mg flucloxacillin which I finished last friday, as well as using the anti-fungal paste each night, and I am pleased to say that the candida has almost cleared.
I am on day 118 of incorporating juices and a daily supergreen juice into my diet, and do feel better although today is a more challenging day with pain etc and I havent been out for 2 weeks because of the weather and I dont want my knee getting worse by getting cold !
Do you do any exercises with your fingers ? I try and massage mine and sit on them to try and make them straight ! I am not sure this is a conventional method though !
I also use pawpaw lotion on my hands each night, and then sleep on them under my pillow
I have seen you tube clips of pawpaw lotion totally straightenng the claw fingers of an older lady who has severe arthritis. at first, they had to apply the lotion using a knitting needle to access the crevices where the fingers had coiled on themselves. have you ever tried pawpaw lotion ?
I also find that I have to be disciplined with my sleep patterns as otherwise I find the self care and nurture regime demanded by a scleroderma and raynauds diagnosis a chore, as opposed to enjoying indulging in helping myself get better !
And I have stopped beating myself up that it takes me 2 hours upon waking to get moving ! I have a routine of starting my day in a warm bath filled with Oilatum plus and I then moisturise with Hydromol. This 'mermaid operation' warms me up, so helps get my joints moving a bit better, as well as eases the constant musculoskeletal pain, mainly my back, and of course, hydrates and moisturises my skin. I then put my eskimo suit and layers on, ready to get on with enjoying myself for the rest of the day haha ! (Which during the winter months, my days are spent in hibernation at home - partyyyyy central.)
This routine has been, and is, ongoing work in action for the best part of the last 16 years -to try and make this 'living the dream with systemic sclerosis and raynauds' journey as pleasant as possible for me !
What moisturisers etc do you use ? I have tried all sorts (literally), and have had my current routine in place for a few years now, which seems to be working well, especially when Prof Denton gets so excited when he is calculating my skin score ! However, I am always open to try anything new, just to feel better !
Sending love and rainbows to you, you are strong enough to get through this xx
I find it very hard indeed to read lots of text, especially if not punctuated by paragraphs etc,. Which is one reason I have not responded till now.
I haven't tried paw paw. I have a walk in chemist here at home already, all this stuff does nothing when it's flared up bad. Cetroben emollient cream in a large dispenser tub has been prescribed for the dry skin. seems ok,
What's needed is a diagnosis of what is happening and why, Rather than just treating the symptoms.
My face has now become very sore and dry in places,along the T line and no earrings now as they erupt too.
Around nose lips, eyebrows and eyes, all pockets of puffiness, which makes me look terrible, Worst first thing in the morning, wouldn't recognise me.
I take 400mg if Ibuprofen 3 times a day if needed and that hasn't stopped the puffiness.
Also now totally incontinent with my bladder.The list goes on and on,.
Natural yogurt seemed to get rid, but it came back and I've also tried Manuka hone 10+, that helps, but is very sticky.
My eyes have become so dry that the slightest particle irritates them so bed making is a nightmare as is any gardening. Cos straight away I'm in the bathroom washing out my eyes. I've also a cataract which is much worse than it worse, so tiny typing it hard too.
I haven't taken a bath in many years, as it has always drained my energy and I don't feel safe that I can always get out again. No one to help here.
I haven't been diagnosed with sclerorderma, but my sister had it. I wonder if the fungus in my mouth has spread to my face. Don't know but not seeing the specialist for 3 months.
Will be seeing a GP, the locum is best, this week for blood test results and to ask for referral to someone who can make some kind of diagnosis on the state of me lately..
although i am sorry to read of the difficulties you are going through at the moment. Hopefully when you get to see the consultant you should get some answers and a useful treatment plan put in place.
Have you looked at the raynauds and scleroderma website on raynauds.org.uk ? there is some great info on there which may help you with your symptoms.
as well as you could take some leaflets into your GP surgery when you go this week. there was a lady who posted on this site, that she had been feeling ill for years, went to her GPs and saw a locum who bingo, knew straight away what her symptoms were displaying ! I so hope you have the same experience!
In the meantime I hope you do lots of things that make you feel good, and please update on here how you get on. I will be thinking about you ! x
So sorry for the long delay replying. It's been a tedious time and am very tired and often in a lot of pain.
I haven't been given any treatment plan, I now am taking another course of Fluconazole. Also haver some Solvazinc effervescent tabs form hospital specialist.
As soon as I got on here i saw the post about the sweet tooth and reached for the chocolate bar, NO NO with this fungus.Though the specialist didn't mention sugar he said lay off milk, cheese is ok, after first saying no dairy. None of which I would keep to. I do avoid too much dairy milk and use Soya milk, have done for years,but it tends to curdle in coffee.
I saw a nurse last time and she more or less told me nothing wrong with Vit D nor Zinc and I had taken up 20 minutes of her time already so better leave and let her get on with other patients.
Neither would she offer any help with the stress incontinence,
"It;s up to me to do the pelvic floor exercises, you've had treatment already."
I'm not really sure what to look for or even if I want to look at the raynauds ans scleroderma site to be honest.
I don;t have raynauds that bad and on;t have scleroderma., thank God.
I still have the dry sore areas on my face and now neck and behind ear. got some cream for that from the nurse.(Daktacort) But she didn't say how long to apply, and when to stop. I stopped using it once the symptoms had cleared up and straight away it was back.
#
The GP's simply do NOT listen to you and say they can't treat more than one thing at a time, but they should realise I'm telling them all the symptoms so they can id the cause.
Obviously out of their league to do that.
Just keep treating the symptoms NHS, it gets you more scripts for more cash back from the pharmaceutical companies
.
Thanks for the info, ltd will take a look at the site anyway, probably already have done.
I also believe I have had yeats infections for many years which is not surprising as I have a bad diet and am atticted to sugar even though I am not over wieght. Though do you think Raynaurds is related to this and have you desided to download the 'yeast infection no more' thing ?
if so would you recommend this way of tackeling Candida ?
In a word NO I would not recommend it for the reasons below.
I am a sweet lover too, and cos of the dry mouth with the Sjogrens syndrome I often end up sucking them before bed, though usually a sugar free one.
My diet is good on the whole, plenty of fresh fruit veg and nuts etc, every day.
The specialist I saw said to avoid dairy. I didn't do much towards that either. But it has more or less gone now. I expect it to erupt again.
Dentures contribute to the problem which this video below mentions. It's better than that lengthy one I posted earlier. I have some manuka honey 10+ so spread some of that in my tongue which soothed it,and natural yogurt, nothing special.
I am dead against that blokes view, on eating only meat and veg I posted NO LIFE THEN? on the comments. ha ha He says about Zylotol causing diarrhoea. ha ha
His voice is verbal diarrhoea in my opinion. He can stuff his diet where the sun don't shine, glad I never found Part 1
Try this ladies advice,much easier and nicer.
As you may notice I'm at breaking point with my health mentally and physically, which is why I'm very outspoken and mickey taking.
Try to eat a decent diet though, that's most essential and even me with a good diet Im lacking a lot of nutrients essential for well being, most people are. now.
Im on Vit D 5000 iu as my vit d level is very low and Zinc but haven't got the results of the last one yet, either an 0844 call to quacks or walk down along the freezing wind blown sea wall.
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xx
Undiagnosed and positive ANA
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How symmetrical is your skin involvement?
