Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

Newbie who needs assistance


  • Please log in to reply
6 replies to this topic

#1 Cathy20

Cathy20

    Newbie

  • Members
  • Pip
  • 5 posts

Posted 23 May 2016 - 02:03 AM

I've been diagnosed with scleroderma since last year July. After so many years of confusion not knowing what was wrong with me, I went to numerous doctors who didn't know what was going on until I was admitted due to shortness of breath, weight loss, muscle weakness and tight skin with discoloured patches especially on the face. I had ulcers on my fingers, I couldn't do anything as the pains were so bad.

 

I went through so many tests which took about 7 weeks to bring us to being treated for pulmonary hypertension (PH); I didn't understand so much. I had to google this condition until I found this site which made this condition more understandable; it hasn't been easy, but I survived the worst. I regained a bit of strength on my muscles and my heart rate isn't acting up as it did before.  My problem now is products that I need to use for my skin as it becomes dry and scaly, especially now as it's  winter in South Africa. My face was more involved in this ordeal. It has dark patches and tightness, I've tried a few products but I don't see much change.

 

Any suggestions? Thanks for this site; its amazing.



#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 23 May 2016 - 03:51 AM

Hi Cathy.

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with pulmonary hypertension and have been suffering so many unpleasant and worrying symptoms.

 

I've included a link to our medical pages on Skin Involvement and Xerosis (Dry Skin) which contains information about skin care for scleroderma, which I hope you'll find helpful and interesting. We also have a recent thread running on "Skin Care", started by Amanda and it does contain lots of useful tips to help you.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise. I'm afraid we don't have details of any specialists in South Africa, so it would be beneficial for you to try and see the very best rheumatologist you can find.

 

Please do take a look at our medical pages and videos which contain a wealth of information about scleroderma and other autoimmune diseases.

 

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)


#3 Cathy20

Cathy20

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 23 May 2016 - 10:30 PM

Thank you so much, Joelf.

I've been checking all those recommended sites. They are helpful and now I know now which products are beneficial to my skin.

Keep up the good work.

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 25 May 2016 - 12:55 PM

Hi Cathy,

 

Welcome to Sclero Forums! 

 

As it happens, we used to have a listing for South Africa, but apparently lost the listing somehow over the years. Yes, I found him. His name is Dr. David Gotlieb in Capetown, who is known online as "Drdoc".  If he's anywhere near you, that may be a resource to consider, as well as looking through our Scleroderma Expert World Listings.

 

As you see, we have many discussions for skin care. My personal favorite is plain coconut oil, which I slather on before and after showers, and before bed. But any oil that you like and can afford is good. I just prefer to go straight to the "real" oil itself, without other added ingredients, and to shy away from hot water and most soaps, which can be very drying. I seldom even wash my hair, just skipping straight to the conditioner instead (this is gentler on the hair and the skin.)

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Robbie

Robbie

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 23 June 2016 - 02:56 PM

Hi All

I am new to the forum. I was diagnosed with Morphea in February 2012 after helping friends clean up after the Brisbane Floods. I developed the typical discoloured, thick red skin lesions around my stomach in the shape of the outside of the plastic apron I was wearing whilst sweeping up silt and muck in front of a high pressured guerney. So where the clothes were was where the scleroderma erupted.

I was recommended to a dermatologist in Brisbane and after UVB therapy (not so good as all sorts of other skin cancers erupted) and a number of ointments, the morphea seemed to be under control until a few weeks ago. Now it has erupted again, spreading to outer areas of the old patches and is so itchy I just dont know how to control the discomfort. I can't get to the dermatologist for a few weeks.

I read that coconut oil can be good. Any advice to help relieve the symptoms of this awful itch is urgently appreciated.

Can anyone help?

In anticipation

Robbie

#6 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 24 June 2016 - 08:03 PM

Hi Robbie,

Welcome to these forums!

I'm sorry to hear that you've had a resurgence of the morphea symptoms. Itching skin is so unpleasant and difficult to deal with and I've included a link to our medical page on Itching Skin which I hope you'll find helpful and informative.

Perhaps when you do have your appointment with your dermatologist, he will be able to suggest some further treatment to help you with the itching.

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)


#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 25 June 2016 - 11:17 AM

Hey Robbie, I know about itching! Before diagnosis I had tight skin on my shins that itched constantly. I would sit at work with my jeans rolled up and an electric fan blowing on them. Lunch time I would trawl chemists for various creams, return to work and slather the stuff on. At night my husband would be slapping calamine lotion on my calves. Nothing helped.

Now the following helps:

1)antihistamines, especially atarax (hydroxizyne) which the Royal Free recommended
2)low dose steroids, like 5mg,
3)moisturise, I use Balneum cream (contains urea and lauromacrogols) ensure you constantly moisturise, avoid anything perfumed or with alcohol in it.
4)keep the area cool
5)avoid fabric softeners
6)consider becoming an infrequent bather, at least moisture afterwards and don't use soap/shower gel but use an emollient instead
7)don't wash hair and body together because the shampoo and conditioner can irritate the skin

You need to accept that you can't carry on doing everything as you once did. Also itching is common in scleroderma so your specialist will be familiar with the issue and that it's not a simple one!

I hope this helps because I remember how desperate that itching made me especially as I had no diagnosis when it started.

Take care.
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)