Hello 👋

[Anbee123]

Hello , just thought I’d say hello ,this is my first time doing anything like this so bear with me!!! I was diagnosed with diffuse scleroderma in September ,it seems to have crept up on me very fast since I was told what was wrong Any suggestions how to get my head around it all . merry Christmas 🎄🥂

[fairy56]

Hello Anbee123, welcome to this wonderful site, we are here for each other. Yes it does take a while for the diagnosis to sink in, but as I said we are here to help each other . Am I right in thinking that you are under the care of a rheumatology dept at your local hospital, where there will be specialist nurses to answer any questions you have between appointments. Are you under a specialist team that knows all about Scleroderma.?

May you have a happy Christmas, take care, and stay warm xxx

[svanseghe57]

Dear Anbee123.First of all season's greetings to you and your family.I personally, and along with myself, many others who visit this site daily would be very grateful if you could tell us the nature of your ailments so as to allow us to extend our knowledge of this very complex disease of which we all in various ways suffer from.All the best and keep well.

[Anbee123 in reply to svanseghe57]

Hello , thanks for your reply, I have a appointment in June with the rheumatologist , I’ve seen the consultant in my local hospital a few times for tests and my diagnosis , I seem to be at the doctors often as well at the moment!! My main problems are Raynaud’s phenomenon, being tired but not able to sleep and general aches and pains I have pain killers I’m now on lisinopril which seems to be helping a bit with the raynauds it just seems everything has gone boom all of a sudden!! I’ve been going on about myself how are you ? Have you had this condition for long. How do you cope with it ? Happy New Year x 🥂

[svanseghe57 in reply to Anbee123]

I am a 62 y-o male from northern Italy ( near Venice) and have had limited systemic sclerosis in a mild form since nov. 2011.It is beyond any doubt that amongst females this illness, apart from being more commonplace, is more agressive.Scleroderma is very complex and people suffer in different ways.I also don't sleep as well asI used to but millions of middle aged people have trouble sleeping well.Even those who don't suffer from Scleroderma.However mild the disease there are some specific features that in various degrees regard almost every Scleroderma patient. For example Raynaud's,onychomychosis,intolerance to cold weather which affects not only hands but your upper body as well ( inflammatory feeling in the chest),weakness of the joints,especially the knees( I am not able to run anymore but thank God I can still walk at a brisk pace ) .What is important, is to have heart and lung testing twice a year and blood analysis also.Given that my condition is not serious I now take these tests once a year.In order to overcome Raynaud's phenomenon and the digital ulcers I once had, I take 30 mg of Adalat daily and try to stay indoors as much as possibile. Keep well and all the best for the forthcoming new year.

[positivedaybyday]

Merry Xmas Anbee123!

Welcome to our sanity site, it is so supportive & helpful. The main thing is for you to try and remain positive as much as you can, it's a very powerful tool. I was diagnosed similar to you in 2017 & the condition advanced very quickly.

Firstly you need to be be under a Rheumatologist who specialises in Scleroderma. They will guide & help you along the way & answer any questions you may have.

The disease is very complicated & individual too. There are so many support areas as you travel this path.

Have a list of questions ready when you see your Rheumatologist & take a friend or family member with you to write things down.

Try not to be hard on yourself as you will have to learn to pace yourself. Ask for help if you are struggling with any aspect.

We are all here for you. Love & hugs 😚😚😚

[catkar]

Hi,

I was diagnosed 2 years ago in January, I was devastated and thought life as I know it had finished and to a certain degree it has, but its not as bad a I feared... I have problem mainly with my feet which feel numb under the toes and this has progressed all the way to my heel now, my fingers feel swollen and stiff especially first thing in the morning .. There are too many other symptoms to list and sometimes I just wish I could have a whole nights peaceful sleep without the pins and needles and acid reflux , but I have come to accept that it is what it is ..... and try to look on the positive side as there are so many people on this wonderful site whom are suffering far worse than me.. I would however like to know whom these specialist nurses are as every time I see my Rheumy there are no nurses to ask any questions of....

Other than this list of Gripes I would like to wish each and everyone of you a happy new year and an end to all of your health problems ,,, Much love Cathie xx