Hopeful: Hi, I don't really know much... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Hopeful

Debbiedoughnut
Debbiedoughnut

Hi, I don't really know much about computers but am trying to find someone,anyone who also has scleroderma, raynauds, and other seemingly still unknown problems. I have been seen by Prof. Chris Denton and he has explained most things to me, but a friend who knows what I am talking about would be great. At the moment it seems a very lonely illness to have. Hoping to hear from you. Best wishes.A

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Hello Debbie, welcome to this wonderful site, we are always willing to chat, listen and help the best way we can. I live with Scleroderma, secondary Raynauds, and Sjorgens. I am under the care of my local hospital and Chapel Allerton hosp in Leeds, where they have a specialist team. Take care, and you will never be alone on this site, xxx

Hi fairy56, thank you for replying to me so soon. You have made my day xxx.

Start a conversation. We might all learn.

Hi Debbie,

Everyone on this forum is experiencing the same conditions so you’re in good company :) also, the SRUK has lots of useful information and a helpline you can call to talk to someone (volunteers) - ive used this before it’s really nice to hear a voice. I also asked my GP for some counselling to discuss my diagnosis and develop some tools to manage stress (as this and the cold make scleroderma active).

Debbiedoughnut Welcome.

Scleroderma is a real game changer, it can be very daunting but it sounds like you are seeing one of the best experts Professor Denton.

I have Myositis with a Scleroderma overlap, Raynauds and dysphagia, it has been a big life changer for me, however I have found this site so helpful and reassuring.

It may be worth asking your GP or Royal Free to see if there is anyone in your area who has the disease so that you can have real chats rather than using a computer. SRUK helpline are also very helpful.

The level of information on this site is great because people are talking about their real symptoms and feelings.

Good luck and keep popping in on the site 😀

Hi MEW53, Thank you for your reply. It is lovely to feel free to share my sense of confusion with someone without feeling stupid. Some of the symptoms of these illnesses are quite odd and can vary so much from day to day. hope you are well at the moment and enjoying the summer. xx

Hi Debbiedoughnut, I have suffered with Raynuad's symptoms for 14 years I have not had any tests for an official diagnosis,only by my GP I have been taking Nifedipine since then. I have also got a rare genetic neurological condition called Ataxia, Which affects my balance/coordination, I walk very unsteady/slowly and on far with a stick I also have a wheelchair so I my son can take me out. Where about's in Yorkshire are you? I live in Hull East Yorkshire. I find people in this group really friendly and helpful. I love healthunlocked this is not the only group I am in. Love them all. Here to chat any time, take care.x

Hi Debbie

I've just been diagnosed with limited Systemic sclerosis as an overlap to my Lupus. Like you I am just at the start of this journey. Take care x

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This is a good site for learning how to deal with things and some good ideas to help with symptoms. I have systemic scleroderma and the lifestyle changes are immense. Dont anticipate what will come. Deal with today, be present to the now. You can't enjoy today if you are stressing about 1, 2, 10 years from now. Once I learned that I felt my disease was really a blessing. No personal or professional competition, no saving to live to 100 years. I am liberated and free to wear really interesting clothes, give my real opinion, and go on trips/shopping with the money from the 20 years I no longer have to save for. I learned to play, enjoy the sun, and not worry. Whatever happens is good even if it looks bad now. It is an opportunity to learn compassion, patience, and new skills.

thats what this site is for to connect with others with your condition please do not feel lonley

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