Home Remedies & Herbal Treatments

[SophieMed]

Hi, I'm a student researching scleroderma. I want to hear about scleroderma from people who actually suffer from the condition, so that I can write accurately and with sufferers in mind. I'm looking into herbal treatments like creams, oils, vitamins etc. I was wondering if anyone has tried any that have or haven't worked for you? I'd really appreciate any response, thank you. : )

[cheeselover342]

Hi SophieMed. I have been seeing an acupuncturist for a few years, first of all to treat my hemi facial spasm, which proved difficult to target as it's caused by a blood vessel pressing on a nerve at the base of the skull, commonly on the left side. I have continued to see her as she treats the whole body with a mix of massage, aromatherapy and acupuncture for stiffness, aches, arthritic joints and so on. She made up a massage oil to help my gut issues, which seems to have helped - turmeric, tangerine and frankincense in a coconut carrier oil (massaged into the abdomen every two hours when tender). Turmeric is a well known anti inflammatory and I try to add this to food as well, when possible e.g. soups. She also prepared a general body lotion using lavender, geranium and frankincense which is very soothing. Of course I have no way of knowing if the oils and/or the acupuncture is helping but I certainly feel more relaxed after treatment which I think goes a long way to tackling some of my issues. The plus points being that it's non invasive; the negative the cost. I hope that helps with your research.

[positivedaybyday]

Hi Sophie,Wow, you've entered a very complex disease!

The only time I tried some homeopathic treatment was via a friend's contacts. All I knew at this stage was that my whole body was inflamed.

The tablets had no effect. As its many years ago (2017) I didn't keep the bottle of tablets.

My case was so rapid in progression. It was diagnosed later as Acute Diffuse Cutaneous Systemic Sclerosis.

I was placed on Mycrophenolate which in most cases manages the progression of the disease.

Unfortunately for me it didn't work.

I had 2 options:

1. Continue on Mycrophenolate in the hope at some stage it would kick in. My Roden score on my skin kept increasing with my whole body tightening. This was not an option for me as I was at the end of my tether.

2. To be put forward for stem cell treatment. In the end this gave me the only chance of living as by January 2018 my Roden score was 48! The highest score is 51!!!

I chose this option & luckily for me I passed extra tests at The Royal Hallamshire Hospital, Sheffield. The extra tests were to confirm my body would probably cope with this invasive procedure. Also it was confirmed that my major organs had not been affected by the Systemic Sclerosis as I had been caught early!

When I was originally in Salford Royal Hospital I was administered many different creams & lotions to help the intense itching. None really had a positive outcome.

The only one which gave me a bit of relief was Cetraben ointment. This did not contain fragrance, colouring, additives or preservatives.

The ingredients are:

45% light liquid paraffin

35% white soft paraffin

Cetostearyl alcohol

Polysorbate 60

This emollient is used to moisturise and soften the skin & give relief to skin tightness.

I wish you luck with your research in this complicated sphere.

I hope you find a little of this information useful.

If you have any further questions please don't hesitate to contact me.

Thanks

[Pomoc]

My wife, the sufferer, is an Ayurvedic practitioner and is now using some of the herbal medicines to treat herself as well as shortly travelling to India for Panchakarma detox. We can talk privately if you wish. Good luck with your research.