Any treatment or ways to loosen skin? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Any treatment or ways to loosen skin?

Tmunney999 profile image
15 Replies

Any treatment or ways to loosen skin!?

Getting proper down about face changes every one I see keep saying I have chNged n getting me really down and just want to know what I can do to loosed this ASAP if there is anyway or anyone has had any luck doing anything?

Thanks T

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Tmunney999 profile image
Tmunney999
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15 Replies
marilynmcl profile image
marilynmcl

Have you seen your Rheumatologist about this? I think you should ask them for advice....I use Bio oil if that may help....hope you get some answers on this pet.

dianekjs profile image
dianekjs in reply tomarilynmcl

Hi Marilyn - be careful using Bio oil, my dermatologist told me not to use it because of questionable ingredients. I also found this review from Paula's Choice, a respected consumer protection/product review resource for skin care and cosmetics in the U.S. paulaschoice.com/beautypedi...

Have you tried organic argan oil? It's wonderful for skin, nails, and hair. 😊

dianekjs profile image
dianekjs

Hi, unfortunately there is no cure for scleroderma and the skin involvement that is often a hallmark feature of the disease. However, many symptoms can be treated and controlled to some degree. The physical changes in appearance are often among the most difficult aspect for patients to accept, and I understand how emotionally challenging it can be. The single most important thing you can do is to find a true scleroderma specialist to manage your care. A general practitioner or general rheumatologist simply won't have the necessary expertise to optimally treat this rare and very complex disease. There are some medications that may improve the skin thickening and tightening, but there are many considerations, including potentially serious side effects. If you're not currently being seen and treated by a scleroderma specialist, ask to be referred to one. Do you know what type of scleroderma you have been diagnosed with? For aggressive disease a stem cell transplant is the closest thing there is to a cure, but it is also very major and carries considerable risks. It's not appropriate for many. Do you have internal organ involvement?

For help with physical changes in appearance, some people have had some success with fillers or autologous fat transfer. Additionally, the skin often spontaneously softens after the first few years of disease. In the meantime, keep it as well lubricated as possible. Many like coconut oil for this as it is all natural, but Ceravé and other moisturizers may be equally effective. Be sure to stay hydrated and live and eat as cleanly as possible. Cut any or most alcohol and sugar, eat only real foods not processed junk, no smoking, etc. This will help support your immune system and give your body its best shot at improving. I'm really sorry you're dealing with this and hope that you can get the help you need. Take care and God bless.

Tmunney999 profile image
Tmunney999 in reply todianekjs

Thanks so much for taking the time to explain all this.

And yes I have a scleroderma specialist. And just the skin and a tiny tiny bit of lung envolment at the moment.

And I am looking for a specialist in the UK that does fat transfer and fillers for is with this dieses do you have any one I can contact? And also I have looked into the stem cell transplant I am getting referd to America and think I am going to have to try raise the funds to have the treatment as is a silly amount of money. Think I would rather try now why am young(22) and pretty much strong n healthy and don't want to let it get much worse so then I won't be as strong. if that makes sense.

Thanks xxxx

T

check into collagen. Its great for skin, joints, & much, much more. It comes in a tasteless powder that I sprinkle on yogurt, in soups, anything. Be sure to buy only unflavored. I buy mine from Vital Proteins. Its the one with the blue lid.

Tmunney999 profile image
Tmunney999 in reply to

Isn't that why my skin is tightening up?

dianekjs profile image
dianekjs in reply to

Scleroderma is characterized by a build-up of collagen in the tissues. Too much collagen and an abnormal deposition. Trying to boost collagen production could cause more harm than good. 😔

dordle profile image
dordle

Isn't it too much collagen that causes the hardening of our skin, also affecting joints, tendons and internal organs?

Tmunney999 profile image
Tmunney999 in reply todordle

I agree with you dordle I don't think that sound correct. Because collagen is what's causing all the problem basically so don't think I need more.

marilynmcl profile image
marilynmcl

I have used Bio oil for many years now and I have been complimented many times on how youthful my skin appears....never had any problems with this product..Boots the chemist and many other pharmacies stock this and if it contained anything harmful I am sure it would be taken off sale immediately by such a very large concern as Boots.

Frankie86 profile image
Frankie86 in reply tomarilynmcl

So is bio oil good also does any one know where I can find s scleroderma specialist

Frankie86 profile image
Frankie86 in reply toFrankie86

I'm in Birmingham not yo happy with rheumatologist

marilynmcl profile image
marilynmcl in reply toFrankie86

Well...I use it and have done so for a long time and I like it...you can only try and see if it helps you. If you are not happy with your rheumatologist then maybe have a word with your doctor who referred you in the first place and tell him or her about not being happy with the way things are going and ask if he or she would refer you to someone else...or have a word with the rheumatologist you have and express your worries....some consultants can come across as distant and cold...but they might not realise they are making you unhappy unless you let them know how you are feeling. Good luck anyway and hope you get what you need in the future.

Missnash profile image
Missnash

Hi just moisturising is the only thing you can do I think I'm also having trouble with my skin on my face but mine is a itchy rash that blisters all round my mouth and nose area it's so disheartening and also makes me so embarrassed in public so I understand how the changes in your face are making you feel! I've tried loads of different oils, creams, steroid creams nothing helps much, has anyone else had this kind of rash?

pallinurse profile image
pallinurse

I am sorry, I don't know much about changes in the face yet, but will pass this along for whatever it is worth: I have had issues with what seems to be my fascia in arms and legs getting sticky and bumpy. It felt like there was duct tape around my knees and forearms when I moved them--a feeling of restriction. I saw a physical therapist and she did a lot of work with me to break it up, and I also did specific exercises to keep it loose. I am a nurse so the therapist and I are in the process of writing a case study about what we did and what worked. The question is, will the changes last?

I apologize that I don't know enough about what is happening with the process in the face to know if similar efforts would give you any relief, but if you found a therapist willing to experiment with you trying some kind of fascial release maybe it would help a little. Sending you hugs and love!

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