Ssc and secondary raynauds

[Sylviaherring]

I was recently diagnosed with systemic sclerosis and secondary raynauds. I have had raynauds for around 3 years. The first year just hands, last year hands and feet. However just lately after being cold and then getting warm my face goes bright red and sore. Is this likely to be related to the raynauds?

[LucyJean]

Hi Sylvia, usually it is your nose that gets particularly affected in Raynauds, but if you are very sensitive then all exposed skin and extremities may be more vulnerable. How much has your skin been affected by the scleroderma? Do you have more prominent blood vessels, such as telangi on your face? Has your skin been tighter or more delicate there?

I wouldn't be worrying too much but I would be putting some really decent moisturiser on my skin at all times and also wearing a Factor 50 sunscreen for when you are out running (I am hoping I have remembered it correctly that you are the marathon runner?) Make sure you are wrapped up well with plenty of layers and perhaps consider covering more of you facial skin than normal (leaving enough room for you to breathe of course

Sorry, I don't have a definite answer for you.

All my best

Lucy xxx

[kel55 in reply to LucyJean]

you can have it anywhere and everywhere, even internally. Raynauds is just the name for microvascular disease of the skin! it is nothing to do with sclorodermia it is just one of them things that 60% of sclorodermia sufferers also have raynauds, meaning 40% do not! it also needs diferent medication

[LucyJean in reply to kel55]

sruk.co.uk/raynauds/what-ra...

Hi there, I am attaching the link with further information about what Raynaud's is on the official Raynauds and Scleroderma website. Thought it might be useful as it talks about the difference between Primary and secondary Raynauds and what to expect from the condition.

Lx

[kel55 in reply to LucyJean]

sorry but this link was great until it was linked to autoimune diseases. the Uk is the only place in the world that links the two! l have had this arguement with the scoiety before and l have offered to meet them for me to show modern research, post 2009ish where it is said that there is no such thing as primary or secondary

[Sylviaherring in reply to LucyJean]

Hi Lucy. Thank you for remembering I am marathon training!

I am lucky so far and only have scarring on my forearms which look like little burns. My skin on my hands and face is certainly much drier of late and quite uncomfortable at times. I'm usually ok when running as I warm up but my working environment is cold (never above 12°) and the wind howls through so I am struggling more there

[LucyJean]

Gosh, not the ideal environment for someone with scleroderma that's for sure! Do you mind me asking what it is you do? I don't want to be stating the obvious because I am sure you are doing it, but it is essential that you have really quality thermal base layers...plus multiple clothing layers on top...headgear really important as we lose a lot of heat there. Regular hot drinks and foods if possible.

Your skin is probably not behaving in quite the same way as it used to so that moisturising is essential. GPs can prescribe thicker emollients if the off the shelf jobs are not enough. Look after yourself. Please don't push yourself too hard. Fighting against scleroderma leads to problems...working with it is the answer and doing as many practical things to help your body as you can.

Are you going for London Marathon this year? Let us know your runners number we can cheer you on!

Lxxxx

[Sylviaherring]

Hi Lucy. I'm a manager in a builders merchant. It's basically a huge warehouse with 4 triple doors open permanently!! I normally have to wear 6 layers including a base layer, 2 pairs of trousers and at least 1 sometimes 2 pairs of gloves. Even then my finger nails are all but purple or white for at least 8 hours of the day. I feel the cold so badly. I realise that feeling the cold is part of the condition but man I'm so cold!!!!

[LucyJean]

I think I will mount a campaign on your behalf to get you your own personal blow heater to stand near!!! Lxxx

[Sylviaherring]

Lol if only health and safety was so simple ! Did you know there is no legal low working temp

[LucyJean]

Hmmm, but scleroderma comes under the Equality Act 2010 so your employer has to make reasonable adjustments and you can sometimes use the Access to Work Scheme to get equipment/adaptations to help you.

gov.uk/reasonable-adjustmen...

If you are in an environment that would compromise your health then I would have thought that reasonable adjustments might be about making it more user friendly for you??? Worth a shot??? I am sure your GP or Consultant would back you? Perhaps a referral to a local Occupational Therapist who might be able to support and advise you???

Just a thought

Lxxx