Just a few ideas that have helped me.

[Skwiglee]

Hi!

This is my first blog, but second attempt. I went to add a link and lost the lot! Anyhow, I'll give you a very brief history first.

The symptoms of Scleroderma hit me very quickly, six years ago this month. My hands became fists, with my nails almost growing into the palms. And then the digital ulcers! I live alone with no partner or family. Thankfully I have a wonderful GP. The less I comment on my consultants, the better! The word 'patronising' springs to mind!

Anyhow, I went from a golf playing, horse riding 10000 stepper, with a really full on job. To someone who had to throw myself onto my bed like a penguin, as I couldn't get in any other way. However, I have always held the strong belief that the body can heal itself, if given the right 'tools'.

Aromatology: This is NOT aromatherapy. I became a case study to someone, who is now a really good friend, as part of her training. At this time my ulcers were so bad that my knuckle bones were visible. The medical professionals wanted to lop them off! I guess swearing is not allowed on here Well, I still have 10 fingers which are uncurling. What she did is hard to explain, so this is really brief. Neat oils are applied to the skin, in a poultice form. This disinfects and dries the ulcers. All I do now is use a cuticle remover pen, to soften any dry skin or any potential ulcers. She also has a very effective remedy for IBS!

Bowen: When I started having Bowen therapy I had no skin slack whatsoever. Bowen vibrates the fascia of the body and improves its flexibility. I am lucky in that my therapist is trained to the advanced level.

Hot stones: This is something I came across recently. It needs to be carried out by a holistic therapist and not as a beauty treatment. Firstly, my face was incredibly tight - as I have read that some of you have similar problems. I actually looked like I had had a stroke! My therapist simply 'wiped' a stone across my cheekbone, and the tightness disappeared and has never come back. The next stage is what I call my £25 smile I couldn't even push a grape in my mouth without effort. Not only did the hot stones release my face, but also my throat and chest area. And she hadn't even touched me there. What's more, once it's released it stays that way. I'd had terrible problems with my hamstrings and walked like an old crone. I had some serious falls because I had a lack of balance. But I now stand up straight.

I could go on, but I don't want to bore you. I have always been interested in how the body works, so I checked that I have the correct nutrients. For instance I take Natures Best Veintain - which has ginkgo, cinnamon and ginger. I have also recently added the highly nutritional Chia seeds to my diet. I keep a positive frame of mind and suggest you read 'The Power of Now' by Eckhart Tolle and 'How Your Mind Can Heal Your Body ' by Dr David Hamilton. I also use sublimal 'positive' CDs playing all night. If anyone wants further information or links I can happily supply.

[living-the-dream-ssc-ray]

Skwiglee - thank you so mouch for posting and sharing !

I am on my 16th year of the scleroderma and raynauds experience and have a very similar story to yourself. The similarities with lifestyle, diagnosis and symptoms is quite uncanny!

However, although I am a hayhouseradio.com addict (Eckhart Tolle and David Hamilton have shows on there, and I have their books also !), I am ashamed to say that I have not tried any of the techniques which you have described, and what great results!

I was told the about the benefits of Bowen in scleroderma a few years ago, but at the time I was not feeling very good and didnt fancy the travel to get to the venue where it took place. Poor excuse I know, but I have spent quite a few years similar to that penguin which you so well described !

I am very excited to read about your experience with the hot stones on your face, again, your description matches my experience with the lack of movement and stiffness etc Unfortunately over the last 8 years or so I have developed the latent stage sign of scleroderma - telangectasias on my face and now my trunk. so what with the stiff skin and the red spots, I am thinking of giving the Phantom of the opera a run for his money haha

so I think I am going to look into this £25 smile wonderfulness ! thanks for sharing !

Do you use Louise Hay's affirmations ? I affirm every day 'that all is well in my world and only good will come of this' and I have to say that since I got into this habit, my ability to cope with the diagnosis changed up a gear. and, as Dr Wayne Dyer (he is my fave on hayhouse) says - 'when you change the way you look at things, the things you look at change'.

I started a blog at the end of last summer highlighting material which I had come across which helped with my mission to 'feel good'. cosmicfairy444.blogspot.com if you have a spare minute ! I started the blog at the end of the summer to give myself a distraction over the winter from having to be indoors due to turning blue at the smallest temperature change ! and thats with medication. However, I would prefer to stay in than have Iloprost which seems to help some folk.

I put pawpaw lotion on my hands every night, and then sleep on my fingers to try and stop them from beinding in more. Have you tried pawpaw products ? I have posted on here about them before as I had such a great result with it.

Thanks again for sharing, Living the Dream x

[Skwiglee in reply to living-the-dream-ssc-ray]

You have made me think about my skin. I do have thread veins on my chest, but they do look a lot better since the hot stones 'released' my skin. I do have little circular pink marks on my face - but I just put those down to the many falls I have had, flat on my face! So make up and a fringe helps.

One thing I saw that you wrote about, is calcium lumps. Have you tried the homeopathic remedy Silica 30c? It expels foreign objects from the body, splinters etc. I have used it for 20+ years and is completely harmless. Xx

[living-the-dream-ssc-ray in reply to Skwiglee]

ooo no thanks for this !

I have not heard of this use for silica before - i will check it out this week at the health store, as the calcium lump on my left knee is really challenging me ! its been there over a year, I am on and off antibiotics because of infection and I can only wear track suit bottoms because of it Living the dream !

I have tried homeopathy before, when I was first diagnosed in 1997. I chose to see a homeopath rather than take the immunosupressants, which looking back probably was not a good choice, since the snake's venom tablets and bees wax tablets which I was prescribed didnt have any effect and so three or so months later I found myself and my statue body of stone which was even more stiff, back at the Dr Gloom who had given me the initial diagnosis and who had backed it up telling me that I had a 15month life expectancy !

So I red carded him and got myself to the Royal Free with the lovely Prof Denton, who has, and continues to encourage and support me throughout this rollercoaster ! I had a very aggressive onset of scleroderma which settled itself after 7 years, with Cellcept 2mg per day for a few years, on about year 3 post diagnosis, being the magic ingredient ! I am very much an alternative medicine fan, however for the onset of my scleroderma, it was not potent enough.

Have you heard of Edgar Cayce ? He was healing scleroderma patients in teh 1920s - not just getting it under control and live with the symptoms, he was literally curing people! This gives me huge hope that there must be a cure out there without the need for the cytotoxic drugs which are available at the moment ! Cayce used castor oil packs over the liver - I am ashamed to say that I have the gear, but have not got round to getting messy with the oil ! have you tried a castor oil pack ? xx

[lollipop]

wow skwiglee thanks for starting the blog, i have been diagnosed just over a year and have non healing ulcers and curling fingers plus very hard skin, i like the sound of bowen therapy, aromatology and hot stones

just need to find out where i can get it in lincolnshire. you have given me hope that my fingers may improve as that is a big worry to me xxx

[Skwiglee]

I hope this can be seen by everyone, so that I don't need to repeat myself. Firstly Aromatology, if you google Penny Price Aromatherapy (she is the one who runs the courses). They should be able to tell you the nearest Aromatology therapist in your area. I can't tell you how wonderful it is to get rid of those nasty ulcers. And even be able to do the washing up! Not my favourite task! I'm not sure if anyone gets IBS, but putting 2 drops of a tincture in your navel and the pain's gone. The navel is the thinnest skin closest to the gut - if you're wondering

Right! Next is Bowen. If possible try to find a Bowen therapist who does both mind and body, as a lot is embedded in the subconscious. The fascia is one long sheet of connective tissue which holds us altogether. As such, a procedure may be carried out on the little toe, but you get a feeling in your head. I had a great trouble walking and I used to cry just trying to lift my feet to get me up my 20 steps to my flat. I had a couple of sessions on my psoas - which connects your legs to your trunk - tah daaaah! I can walk again.

Finally hot stones. As I said this is not as a beauty treatment. So if someone starts laying stones on your spine - you've gone to the wrong place! They relax the skin permanently. For instance, I may still have a bit of a problem swallowing bread, but I can stuff my face now and I eat so much quicker.

I've forgotten everything I meant to say, but I'm a bit wary of leaving this blog to check! Lets see I have told my consultants all this, but got patted on the head. But if I had listened to them I would have no fingers and stuck in a wheelchair. Remembered now! I have refused any treatment even including the driving knob thingy! I drive 3 hours there and back for Bowen to Somerset, and that is 3 hours stretching my hands over the steering wheel, without even noticing it. I do love my automatic though Zac the Zetec is more like flying than driving.

The only thing I did allow was to go on Preds and Methotrexate. I was sick for 3 days every week. The whole experience set me back along way. I spent so long in bed, this resulted in me not being able to walk. So I told them to sod off with the drugs.

I don't use any special creams. Except for my Sally Hansen cuticle pen stick. Well it's designed to soften hard skin! and as a pen it works a treat. Because my fingers are bent I've developed callouses in different parts of my fingers. I'm interested in nutrition so I broke scleroderma down into mini illnesses and tackled it that way. So for instance I looked at my skin and what supplements would be best to take, to benefit my skin. I checked what amino acid would be best for my adrenal glands etc

I used to be an animal breeder, with very low vet bills. Because they had the best nutrition and supplements. Which is why my GP let's me get on with it, as he knows what I'm doing.

Since reading The Power Of Now which was very much a Eureka moment. I've improved much faster and personally I don't feel the need that I once had for affirmations. But this has been a 6 year process and the more I learn about quantum physics - the lovely Brian Cox and David Hamilton - the more confirmation I get that we are just a bunch of chemicals controlled by the mind. A bit deep for a Thursday night, so I'm gonna watch Lee Nelson! Did I tell you about laughter? No? Well that can wait for another time. Sorry if there are any mistakes coz I can't scroll back. Night all!

[Skwiglee]

I hope that I don't come across as - holier than thou - regarding nutrition. The one thing that has got me thru all this is copious amounts of Red Bull!! One thing I have just come across in the past few weeks, and has made a huge difference is Chia seeds. I'm not a big meat eater and want to improve my muscle strength. They are tasteless little seeds, you only need a tablespoon a day and I mix them into yogurt or porridge. For once, something really good for you that doesn't taste bleugggghhhh! I have had so much more energy and surprisingly sleeping much better and deeper. Check them out on Google!

[living-the-dream-ssc-ray in reply to Skwiglee]

OMG - red bull !!!!! Do you have a juicer ? I have ditched all caffeine and have fresh juices each day - I have more energy than I used to have before, as well as my energy levels are more constant rather than up and down fluctuations ! btw - I did used to have a likeing for red bull having spent a few years of my 20s in a vodka red bull haze and then scleroderma said 'enough of enjoying yourself like that' haha ! x

[Skwiglee]

I'd forget my head if it wasn't screwed on! I meant to leave the phone number for Louise who does my hot stones. 07540469077