Please help

[DaisyLA]

I have limited systemic scleroderma/raynauds/calcinotis cutis and I’m a 36 year old woman.Being in isolation all I’m doing is reading about scleroderma and it’s all so overwhelming and terrifying.i was just diagnosed a few months ago. I have an EKG and lung scan scheduled for next month, everything is scary. What I wanna know, is how common is facial distortion with this condition, and how rapidly does it occur? I’m reading a lot about patients with their mouths and chin area kinda disappearing. Can you feel that happen? How quickly does it occur and is that pretty common? Does it happen to most patients with systemic limited scleroderma? Please share if you can. Thank u!!

[Elle-St-Joan]

Hi,

Stop reading! Everyone is different and can be affected in different ways. It is good to have knowledge but not when you are isolating, you will make yourself ill with stress. Your best course of action is to speak to your consultant about your own health and how best to move forward.

Hope this helps.

Take care

[DaisyLA in reply to Elle-St-Joan]

Elle - thank u so much for ur response, that’s exactly what I needed to hear

It’s so nice to have a community like this I can reach out to with questions and concerns. I don’t know you but I appreciate u so much!! Stay safe out there!

[lennyplus4]

Hello, hope you are staying healthy. To be honest I too read a lot of information & became worried a couple years ago but then I read & asked questions that made me feel more secure because of all amazing people on here. Remember everyone is different but have some similar situations.

Raynards for me make hands turn colors & hurt horribly when too cold. CREST- my hands now have that that natural curve & becoming more as time moves forward. I become stiff then need to stretch to work out. I stretch my fingers frequently as well as my feet & toes in hopes to delay progress. I have had PFT, MRI/CT of chest, hands, & knees. Originally done for base. So far slow progression. I hope this helps. Prayers for you & all during these times. Stay positive keep hope 🌻

[DaisyLA in reply to lennyplus4]

Hi Lenny thank you so much for your reply it is much appreciated

What do you mean by natural curve though? I'm finding that my right hand wants to close more than my left, if that makes any sense... It just feel tighter than my left. Is that what you mean?

I never even thought about hand stretching exercises. How often do you them and for how long? Thank you so much for your help.

xoxo

[bloo]

Stop reading! That's my best advice its frightens you to death. I too have limited systemic scleroderma I've been diagnosed 10 years next month, look after yourself try to eat well and keep as active as you can. Any questions you have write them down and take them when you see your rheumatologist. I'm very fortunate in I have a very understanding and supportive employer which helps enormously I printed some info and gave it to them also good for family members to help them get their heads round it SRUK has some good stuff you can send for

Sending a virtual hug you can do this 👊😘

[DaisyLA]

Bloo - thank you so much for your support. I love this group

[MFC911]

Dear Daisy,

I have the same problems. I was diagnosed about twelve years ago after about the same time having the medical profession poke, prod, test, more pokes,prods, blood tests, more tests than a lab rat (I’m 59 by the way).

My biggest problem at first was putting on weight due to the steroids I was on. That is better now as the dosage is vastly reduced.

The facial distortion you refer to is so very rare that you need not worry.

When I was first diagnosed I went to my computer and started “the search”

WRONG! If you are worried speak to your consultant. They know you and your case history. If you want to scare yourself silly watch a good horror movie. If you look to the internet for medical information you will end up

with a head full of distorted nonsense that is not relevant to you anyway.

The time you spent looking for scary stuff is better used doing a crossword,

reading a good book. Repainting your kitchen. Anything but please, please don’t scare yourself into the loony bin by trying to second guess the professionals.

It’s hard work being stuck indoors anyway. Try and use your time doing something you enjoy. Put on some relaxing music and do some drawing or whatever takes your fancy. Once you have all your medication regime in place and your body starts to react to it everything will settle and you will feel more comfortable in yourself. Take long cool baths and use loads of moisturizer keep your skin in good order and try to enjoy doing it. Indulge yourself with all those bath things you girls love. Currently you have the time so put it to good use.

Take care of yourself, stay safe & keep well. Most of all try not to worry.

All the best. Mark.

[DaisyLA in reply to MFC911]

Thank u

[svanseghe57]

Dear Daisy . Please do NOT worry too much, at least for the time being. As Elle- St- Jet says our illness affects people in very different ways.I ' m a 62 y-o male and have had a mild form of scleroderma for 9 years . I lead a completely normal life and the illness has not affected me at all but despite this ALL of us must take an ECG and lung function test at least once a year as a precautionary measure. All the best.

[DaisyLA in reply to svanseghe57]

Thank u for the support and kind words

[svanseghe57 in reply to DaisyLA]

Not at all.Once again keep well and keep in daily touch with this site.

[creditcrunchie]

Hi. /I totally support all that is being said.......it’s great to have all the information available but do not become a compulsive researcher.I too am self isolating and last week I used the good weather to catchup on all my outdoor jobs but of course still wrapped up with loads and loads of layers..............this week is harder! I have lots of things to sort out but keep thinking tomorrow is another day and so I have written THE LIST which embraces all my chores, phoning friends who are on their own etc etc. Although today I feel I’ve been very lazy I have tried to sort out on line shopping for two friends and trying to sort a couple out with contacts who may help them shop. I think we need to stay in touch with as many people as we can and drive away those unpleasant thoughts that can be a torment. Keep safe.

[DaisyLA in reply to creditcrunchie]

Thank u xoxo

[Jak62]

Hi there,

I have limited scleroderma, was diagnosed age 29, am now 58. I don’t have any facial distortion and other symptoms have developed very slowly. My heart and lungs are fine, tho I do have digestive issues. I agree with Elle-St-Jet. Try not to freak out. Get good advice. Every person is different.

I’d add, eat well! Do some research and do everything you can to create a healthy lifestyle for yourself. This will give your body its best chance. Maybe check out meditation and also low dose naltrexone. These are things that have helped me.

Best of luck.

Regards

Jen

[DaisyLA in reply to Jak62]

Thank you Jen!

xoxo

[Crafty-grower]

Felt for you reading your post, remembering how I first reacted when I got my diagnosis....reading everything and getting scared..then my GP told me it will impact everyone differently and not all the things that could happen will necessarily happen to me. I then tried to focus on the gift of what I have right now and the bit I can control, how I look after myself (better diet and exercise regime appear to be helping).

[DaisyLA in reply to Crafty-grower]

Thank u