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rach9

rash on chest with neck tightening

6 posts in this topic

Hello everyone, I been sick ever since my hernia repair surgery.

 

It started with an itchy black spot in the center of my chest in 2012. Now the rash is larger with ridges around my neck.

 

I have heart and lung involvement.

 

Just got diagnosis of Scleroderma a month ago and skin on hands has tightened.   Does any have any advice on skin tightening because at my neck hurts so bad from the tightening. I go see my rheumatologist and lung doctor  tomorrow.

 

Hopefully they will have good news. It feels great have someone to talk to who understands your pain.

 

 

Love you all and thanks

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Welcome rach9, I am a new member here too, however I have had scleroderma for 10yrs, since I was 15. I have systemic scleroderma and quite extensive sick involvement, not least of which on my chest, so I totally understand. Unfortunately, I personally haven't been able to find anything to help with the tight skin. I use a lot of moisturiser which helps to soften the skin a lot and lesson the pain of the skin pulling. I'd also like to direct you to a painting I did about how I feel with the tight skin of scleroderma, particularly on my chest, which is one of my worst areas. It is in my photos on here, under the name sclera girl. If nothing else I hope it connects with you and may help translate your tightness, pain and frustration into a visual. Good luck, and keep posting. There is a wealth of knowledge on here. Jess xx

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Hi Rach9,

 

Welcome to these forums!

 

I'm very pleased you've found us and joined our community, but sorry that it's because you're suffering with Scleroderma. Thankfully, I only have minimal skin involvement, but unfortunately like you, my lungs have been affected.

 

I've included links to our medical pages on Skin Fibrosis, Lung Involvement and Cardiac Involvement and Amanda has produced some very helpful and informative videos which I hope you'll find interesting.

 

We do recommend that our members, if possible, consult a Scleroderma expert as this complex disease really does require a specialist to deal with it.

 

Please do keep posting and let us know how you get on with your rheumatology and lung doctor appointments.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jess,

 

Thanks for the helpful advice regarding your tight skin and what lovely paintings you've done! I've included a link in your post to them, so that our members will be able to view them easily and enjoy them.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Rach9,


 


Welcome to the forums!  I'm really glad you've joined us, but sorry it's due to recently being diagnosed with Scleroderma. I see that Jo gave a few really good links to several topics. I do hope you find them useful. I look forward to knowing you better!



Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Rach9

 

Welcome to the forums! The main advice I have about dealing with skin tightening is moisturise! I had a lot of tight skin when diagnosed and am thankful it has softened in many places but I remember the endless moisturising that went on, and still does to a lesser degree. My tight skin itched like nobody's business and it was antihistamines, in particular hydroxyzine, that really helped with this. Steroids can also be helpful but at a low dose like 5mg or 7.5mg but they should be administered by your scleroderma expert because they can precipitate a renal crisis.

 

You may find it worthwhile trying something like gabapentin/pregabalin if you are getting a lot (as in you can't sleep and it's driving you nuts) of discomfort from your skin. It's actually an epilepsy drug found to be beneficial in anxiety disorders and neuropathy. I take it for neuropathy and also found it helped with the discomfort I was getting from my skin. It's an alternative to the painkiller route.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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