Answering your FAQs about Scleroderma: Everything you wanted to know about my life living with Scleroderma

Today I’m answering your FAQs about Scleroderma that some of you have sent me via Twitter and Instagram. Hopefully, this post will give you everything you wanted to know about my life with Scleroderma. If you have any additional questions, please don’t hesitate to leave them in the comments and I will include them in part 2.

This post marks Scleroderma Awareness Month every June. However, each and every single day is important for each and every one of us suffering from this condition.

As Scleroderma sufferers, we are always fighting for our voices to be heard, to raise awareness for all of the illnesses, visible and invisible. But every June, we fight even harder to have our voices heard to reach those who are suffering from Scleroderma.

Know that nothing is more important than you getting all the help, answers and support you so deserve and I really hope this post can help serve you in this way.

What is Scleroderma?

Scleroderma is a very rare, chronic disease of the immune system, blood vessels and connective tissue that affects up to 2.5 million people worldwide including about 19,000 in the UK.

Whilst Scleroderma is a horrible life-changing disease, but it’s also a disease in which no two cases of Scleroderma are ever the same. There are mild cases and then there are life-threatening cases.

Like Lupus and similar, Scleroderma is an autoimmune condition, meaning that the immune system becomes overactive and starts to attack healthy tissue in the body.

The hallmark of Scleroderma is the excess of collagen that Scleroderma creates starts to affect the skin, joints, tendons and internal organs and can cause scarring, by stopping the affected parts of the body from functioning normally. 

There are several different types of Scleroderma and I discuss these differences here: ‘Early Symptoms of Scleroderma and how I was diagnosed’.

What were your symptoms of Scleroderma?

In terms of Scleroderma symptoms, looking back, my own experience with Raynaud’s, one of the key symptoms, started as early as my childhood.

I am an incredibly rare case where I have always had Raynaud’s and this then turned to Secondary Raynaud’s overtime (it is far more common to have primary Raynaud’s). For more resources on Raynaud’s I have a section devoted to this symptom here.

However the Raynaud’s became more severe in my 20s whilst I was also suffering a myriad of other puzzling conditions like carpal tunnel syndrome, fainting spells, loss of appetite, severe acid reflux, nausea, dizziness, chronic nose bleeds and aching joints. They are the symptoms I can remember!

It was this act of joining the jigsaw pieces together that resulted in me finally receiving help when I was receiving injections for carpal tunnel syndrome and my specialist asked if anyone had looked into my Raynaud’s Phenomenon more deeply. Because I hadn’t, he referred me to a rheumatologist.

I was officially diagnosed with Scleroderma in 2018 however I believe I had been suffering with it for most of my 20s.

For more information on my early symptoms head to this blog post: ‘Early Symptoms of Scleroderma and how I was diagnosed’.

What can I do if I feel my doctor isn’t listening to me?

I so deeply understand the pain of doctors ignoring our symptoms and send you all my love and deepest understanding.

Like every undiagnosed, chronically ill person reading this knows only too well, suffering in such a way is not just physically draining, but also emotionally unbearable.

If you read this post ‘Early Symptoms of Scleroderma and how I was diagnosed’ and identified with some of the symptoms I would highly suggest going to SRUK and taking some of these resources along to your next appointment.

Please don’t give up searching for the help you need. It might take several doctors to truly listen to you you, but your story and your symptoms are worthy. And so are you. So, so worthy. Please don’t ever give up.

What exercise is best for Scleroderma?

I must confess exercise is one of my least favourite things in the world….! I even have to force myself to do things like Pilates and Yoga that in spirit I love….just not the actual exercise part!

So, despite the above, I would actually highly recommend Pilates and Yoga. I cannot escape the fact I do feel better afterwards.

However, if I had to pick one form of exercise I truly enjoy it would be swimming. Because of my condition, I need to find a heated swimming pool. It’s worth hunting one down if you can. I find the benefits to be wonderful.

Otherwise, short walks for me are a different kind of therapy.

Part the problem of exercising for me is being cold and my painful joints and lungs. I would definitely start with Pilates, Yoga, Tai-Chi and swimming to see how you get on.

I discuss more options in this blog post here: ‘Natural Therapies for Scleroderma’.

Are there certain foods and/or drink that I should avoid in order to reduce my reflux and heartburn?

The gut is affected in up to 90% of patients with systemic sclerosis, the type of Scleroderma that I have, so awareness of nutrition is particularly important if you have this form of the condition like me.

The technical name for the gastrointestinal symptoms that occur in Scleroderma is called Gastroesophageal Reflux Disease, (GERD/GORD), and occurs when acids from the stomach escape into the oesophagus, that then causes a burning sensation.

On a basic level, it is advised to avoid alcohol, caffeine, spicy foods, and fatty foods. As an extra step, decreasing the consumption of acidic foods, like tomatoes, can improve acid reflux.

I also avoid eating two to three hours prior to bedtime as lying down can exacerbate the reflux of acid into the oesophagus.

If you’re looking for some recipe ideas for Scleroderma, that help with GERD, I have a whole section of scrumptious recipes made in mind for those of us with Gastroparesis and GERD. Head to my Recipe page here.

My Courgette Soup is very popular and the perfect place to start!

I discuss some things that are good to eat here: ‘Natural Therapies for Scleroderma’.

What medications do you take for Scleroderma?

I would be hesitant to reveal all of my exact medications as this is so deeply personal to each individual.

I personally take medication for my Raynauds, Gastroparesis and Gerd, Arthritis and Lungs (this is just for my Scleroderma).

However, I discuss some natural therapies that I take alongside my prescribed medication above that I would be happy to divulge in. You can read this blog post for more information: ‘Natural Therapies for Scleroderma’.

I have just been diagnosed with Scleroderma, what should I do next?

Firstly I would just send you so, so much love. And whilst love can’t always fix things and it can’t change things it can be a presence for you as you come to terms with your diagnosis and beyond.

So first things first gather a strong support base that can help you.

When I was diagnosed with Scleroderma it changed my relationships forever. However, now I am left with a small but deeply nourishing set of humans who love me and who I can lean on when I need them.

I would suggest going to the Scleroderma charity SRUK and leaning on all the support they offer. There is a Facebook group and so much advice on specialists and doctors. I would also recommend finding a counsellor who specialises in chronic illness.

Otherwise please be gentle and loving towards yourself. There are two posts that I wish I had read when I got my diagnosis. They are as follows:

• Losing Friends to Chronic Illness– This is one of my most-read posts and it still rings true today. It helped me heal after being so abandoned during my battle for a diagnosis.
• Chronic Illness and Mental Health– This is a post from my heart about the relationship between chronic illness and mental health. In it, I describe the lessons I have learnt and how they have helped me.

Is there a cure for Scleroderma?

Sadly no, there is no cure for Scleroderma.

However, the impact that Scleroderma has on everyday life varies enormously from person to person. For many people, it can be very mild and easy to live with. For others, it can cause serious physical disability and become life-threatening. This depends a lot on which parts of the body are affected, and how. There are two types of Scleroderma that discuss this in more detail: localised scleroderma and systemic sclerosis.

Are you able to work with Scleroderma?

Yes, I am still able to work. However, I could never work a typical 9 to 5 job ever again.

I am a freelance art and music history writer for 4 days a week and then work on my blog for 1 day a week.

As of 2020, I am trying to reduce my working week to 4 days as my fatigue is very debilitating and I find taking a day for rest and away from the structure of a workday helps me thrive that much more.

♥♥♥♥♥♥

Scleroderma Resources:

• https://www.nhs.uk/conditions/scleroderma/
• https://www.sruk.co.uk/scleroderma/what-scleroderma/
• https://www.webmd.com/skin-problems-and-treatments/scleroderma
• https://patient.info/doctor/systemic-sclerosis-scleroderma

Thank you so very much for taking the time to read this post and engage in any way you can with this very important Scleroderma Awareness Month.

I’m truly beyond grateful and your constant love and support is the strength that I will use to create the seemingly impossible things.

To read all my posts about Scleroderma the dedicated category is right here and I also have a Raynaud’s category right here.

Do you have any more questions you’d like to ask me about Scleroderma? Please leave them below so I can answer them for you.