Sylvia’s story of using diet and exercise to thrive with scleroderma

Date: Fri 8th March 2019

Here's Sylvia Herring's story of how she used diet and exercise to help cope with her recent diagnosis of systemic scleroderma. Let us know if you'd like to share your story with us here.

My name is Sylvia Herring and I was diagnosed with Systemic Sclerosis (Scleroderma) in December 2017. I live in Southampton and am looked after by Southampton General Hospital.

When I was first diagnosed my most symptomatic issue was the acid reflux and tiredness, which was massively affecting my ability to run! Now, if you don't know… runners don't like to not run! I started running late in 2015 when I was 41 in an effort to help me lose weight. I soon got the running bug and really enjoyed the peace of mind and freedom that running brought from everyday stresses.

Before my diagnosis, and as I began getting more symptoms, running got harder, I got slower, my muscles hurt more, and it took me days longer to recover from a run, but I didn't know why. I found that when I was trying to run, I could no longer breathe, it was like I had developed asthma overnight. Backwards and forwards to the GP I went having asthma tests etc. (even though I was certain it wasn't asthma). When the GP was certain it wasn't asthma, I was put on a Proton Pump Inhibitor, which made me poorly!

I was diagnosed in 2017 and after a couple different drugs I was eventually given Pantaprozile to help manage the acid reflux. Who would have thought that acid reflux could hurt so much! I found eating the wrong foods and stress really aggravated the symptoms of this, which continued to make running difficult. I was training for the London Marathon at this point and couldn't afford to not train! After finishing the London Marathon, it took me 9 weeks to recover fully. I had my Pantaprozile dosage tripled as the acid reflux was so out of control due to the stress that running that distance puts on your body. This made me look at other alternatives and is when I found the FODMAP diet, which is recommended by The Scleroderma Association in America. FODMAP stands for Fermentable Oligo-Di-Mono-saccharides and Polyols. They are short chain carbohydrates that are poorly absorbed in the small intestine.

It bases itself on the principle that you eat clean for 12 weeks and then reintroduce foods slowly, one new food a day and very quickly you will know what foods upset you or your tummy. When I reintroduced gluten the stomach, cramps returned within an hour or two. As a result I no longer eat gluten. Through the use of the FODMAP diet I have managed to stop the regular pain, cramps, constipation and diarrhoea symptoms that the scleroderma caused me.

The first 12 weeks following the FODMAP program are pretty boring and fairly restrictive, however it didn't take long before I saw an improvement. Oddly, I have more energy and feel less tired when I eat well! Through the use of the FODMAP diet I have more of an understanding about what my gut can and cannot digest; my tummy cannot tolerate caffeine, processed sugar, chocolate, alcohol, spices, gluten, citrus fruits and acidic veg such as onions, garlic or leeks. I have found there are some real oddities along the way, for example I can eat a banana which is reasonably green but cannot eat a ripe banana! I don't know why, I just know it's true. I can eat apples but not Granny Smiths or Braeburn's. It's a real trial and error process. There are definitely some foods I miss and will still eat occasionally such as chocolate or a small glass of baileys. I just have to decide how much I want them verses the side effects. I miss cake and gluten free cake is just not the same.

I take Pantaprozile to help control my acid reflux. However, since following the FODMAP diet, I have been able to lower my dose by half and some days I don't need to take it all. Now with my acid reflux more under control, not only do I breathe better while running but my stomach lining had healed, this had cured my anaemia and removed my need to take iron tablets. Unfortunately, due to a recent flare I am back on my iron tablets but am hopeful that once the flare resolves I can come off them again. The mixture of these drugs can be awkward from a timing standpoint. I have to take the Pantaprozile an hour before I eat but I cannot take the iron within 2 hours of taking the Pantaprozile and not within an hour of eating any Calcium. I take iron 3 times a day. As you can see it can be a problem trying to time them all properly.

My diet now:

Typical day:

Breakfast: 2 slices of wholemeal, gluten free toast with sugar free jam and a greenish banana

Lunch: A salad and jacket potato.

Dinner: Chicken or fish with rice and veg.

Snacks: Fruit or dry nuts (if peckish throughout the day)

(NB: I cannot eat more than 3 pieces of fruit a day otherwise it upsets my tummy!)

Running day:

Breakfast: I will eat porridge (gluten free) with an apple about 2 hours before I run. A banana about 45mins before leaving for my run

Lunch: Lunch is late due to run and medications so maybe rice, eggs and veg

Dinner: Dinner is a big dinner of salmon, dry roasted potatoes and veg

Snacks: lots of dry nuts such as cashews and walnut

On a run day I have to wake up at least 3 hours before I need to run. I wake up to take my Pantaprozile, then go back to sleep for an hour! Then up and have breakfast. During my run I will eat on the go as I cannot use the more normal avenues of fuel such as gels as they are loaded with sugar and caffeine. I will take in a little back pack, bananas, apple, gluten free oat bars. I also get my fuel from some homemade mixtures with dates, nuts, gluten free oats and honey, pressed into little mouth sized balls ready to pop in my mouth on the way round!

These are some of the changes I have had to make to continue to fuel myself so I can continue my running whilst still being able to look after the health of my tummy. There is an app available called “FODMAP A to Z" which I use as a handy guide of the foods to eat and stay clear of. I have this downloaded on my phone and will check food items regularly to make sure they are on the list of acceptable foods!

I won't lie, running is not easy, but it helps my mental state to a degree I cannot begin to explain. I knew I was in trouble emotionally towards the second part of the year in 2018. I had put weight on, my running had taken a bit of a back seat, to the point I only ran 30 miles in October and was put on four weeks' rest in November due the arches of my feet collapsing. In December I decided to challenge myself to run every day, even if just a mile. I knew that I always felt better when running frequently but I couldn't find the motivation to get out in the wind, rain and cold, all of which of course aggravates my Raynaud's symptoms. Somehow, I managed however and felt myself get a little stronger every day and maybe a tiny bit quicker! I finished December having run every day and completed 56 miles, the highest mileage in 4 months.

Thanks for reading Sylvia's story. This July, Sylvia and 11 of her friends and family will be taking part in Race to the Stones, a 100km challenge which you can run, jog or walk, Sylvia will be running over the weekend to not only raise awareness for Scleroderma & Raynaud's UK but to raise vital funds as well. You can follow her journey here.

For anyone living with systemic scleroderma that is considering making a significant dietary change, we advise that you speak to a doctor beforehand.