Making the most of your appointment

Name: Making the most of your appointment
Keywords: Making the most of your appointment

Your medical team can give you lots of support, valuable information and advice. This section will help you plan what to say and what to ask at each appointment, so that you can make the most of your time.

4 min read

During appointments, it can sometimes be difficult to remember everything that your doctors and nurses have said, and everything that you want to discuss.

Here you can find a body map, a list of questions and a planner that you can take to your appointments to help you. If you can't print them, you could make your own drawings and write down a list of your biggest questions.

Body map

You can download and use the expandable body map below to show your doctor or nurse which parts of your body are causing you problems. He or she might also want to use it to explain why you are experiencing your symptoms.

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Body map

Take this body map to your next appointment.

Download | 80.25KB | 1 page

It's important to tell your doctor or nurse all the symptoms you have because even things you don't think are very important, might be big clues for your doctors about how scleroderma is affecting you.

Some symptoms may seem embarrassing but remember that you won't be the only person who has experienced them, and your medical team will not tell anyone else. The sooner you share these symptoms with your doctor or nurse, the sooner you can gain advice on their control or management.

Tell your doctor

Changes in how active you are able to be.

Changes in symptoms.

The effects of any medication you have been taking.

Changes in your lifestyle.

To help you keep track, record any changes on your mobile phone or diary.

Monitoring scleroderma

You may find it helpful to take a list of your questions to each appointment, so that you don’t forget to ask everything you want to. Leave space to write down the doctor's answers too, if you can. There may be so much information to take in during an appointment that it is easy to forget details. Don't be afraid to ask for extra time to write or ask your doctor to repeat themselves.

Your questions can be about anything, but below are some examples that other people with scleroderma have asked.

Questions for your doctor or nurse

What can be done to manage or treat my symptoms?

How long are my symptoms likely to last?

How long could I be on this medication?

How will my symptoms be monitored?

Are my symptoms because of my scleroderma or the effects of my medications? How can you tell which causes what?

Is it normal to be feeling the way I do?

I have been feeling really down. Is this a symptom of my scleroderma?

Are there any medications that can help me feel less down?

Can I get some counselling?

Are there any support groups that I could get in touch with?

Will I be able to go on holiday?

Do I need to change what I eat?

What exercise can I do?

Are there any activities that I need to avoid?

Are there any gadgets that might help me around the house or when I'm out?

Will I be able to carry on working?

Am I entitled to any support at work?

How can I explain my scleroderma to my employer?

Can I ask for some changes to my job?

If I have to stop working, will there be any financial support for me?

What's going to happen next?

How is this going to affect me over the next year?

Can I have children?

Will my children get scleroderma?

What is the life expectancy for people with scleroderma?

If you have questions that are not shown here, write them down or ask someone else to do it for you.

Planning next steps with your specialist team

It can be reassuring to know what's going to happen next in your medical care, and when. The downloadable chart below can be filled in with your doctor or nurse. It can be used to collect details of the tests and appointments you will have over the next few months, to help you plan ahead.

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