Improve your condition

[NSV69]

I was diagnosed with scleroderma about 3 years ago and also have limited cutaneous systemic sclerosis, Raynaud’s phenomenon, gastro-oesophageal reflux and lung fibrosis.

I joined this forum to find stories and inspiration and initially felt re-assured that people were managing to live with scleroderma in a positive manner.

However I also read a lot of negativity and scare mongering posts that only helped to contribute to the stress and anxiety that comes with this disease.

I have stayed away from making new posts for a few months to increase my confidence, improve self management and reduce anxiety levels.

I feel I have achieved my objectives and now wish to share some useful tips in order for fellow sufferers to help live with the condition more effectively and possibly improve symptoms.

So.....

1. Try to avoid reading generalist stories about scleroderma on the internet. This can scare the life out of you - remember that this condition effects everyone differently and the internet very rarely shares good news stories.

2. To help reduce reflux problems take ranitidine and omeprazole and avoid eating after 7pm. This medication together has really helped me.

3. If taking mycophenolate - try to take 5/6 tablets daily as research has shown this can stabilise your condition and in some cases improve it.

4. Try and get an appointment to see Prof Denton at the Royal Free in London as he is the only person who fully understands the condition and his knowledge is amazing. I had to pay for this as a private consultation but it was worth every penny as I left feeling re-assured and he is the only person who left me feeling confident that he knew what he was actually talking about. After all your health is priceless!

5. Get referred to a pulmonary rehabilitation course to help learn about your condition, help self management and improve lung capacity from exercise. My walk test results improved significantly after 6 weeks - 12 sessions and I would highly recommend to anyone with lung related issues.

6. Join a gym even if only to use a treadmill. This had improved my lung capacity, strengthened core muscles and improved my mental well being.

7. Purchase yourself a decent Oximeter to keep any eye on blood oxygen levels - especially when exercising as you don’t really want to see levels dropping below 90%.

8. Undertake deep relaxation techniques whilst at home to help utilise your lower part of your lungs via nose breathing.

9. Get referred to a breathing nurse specialist to help you to learn how to breath more effectively and utilise all areas of your lungs.

10. Finally - try to relax, reduce stress levels, remain positive be happy - try not to focus on long term but rather the here and now - no one can predict what tomorrow will bring - life is too short - enjoy it, embrace it and live life.

My lung function tests have gradually improved, my reflux symptoms have improved, fitness levels have improved and my exercise tolerance levels have improved.

So it is possible but rather than relying on the medics all of the time you just have to work hard to learn about your condition and capacity levels and make the sustained effort to fight it and most importantly stay positive and live life rather than just give up!

I hope to be able to share my battle at a conference in the near future to provide inspiration to others.

I hope you find this useful and it provides you with some hope.

Don’t get me wrong that I am under no illusion that my condition will never go away and I have further battles ti encounter and it effects everyone differently so discuss your individual needs with your doctor as I am not a medic but a realist and found that only you can control your own destiny.

Regards

[marie5454]

Thank you, that's a really positive post! Yes, we can all learn to help ourselves a lot more and not just rely on medication. We have to meet this halfway and learn to take one day at a time and live a bit more in the here and now

[zenabb]

Thank for your positive thoughts.

[frillyhilly]

Thank you, really helpful.

[Noni1]

Hi

It's so good to see a positive post. I have the same condition although so far my lung function is OK. I was diagnosed 13 years ago along with breast cancer so life was confusing and difficult for quite a while.

Now I try to live to my boundaries and then push out a bit - this year joining a gym for the first time (at the age of 69!) and walking more. I am also an obsessive knitter which certainly helps my hands stay supple. This hot weather make it a bit more difficult and the hands are a bit more achy but I still knit!

My main issue is finding foods that I can eat that don't cause swallowing and gastro issues but through trial and error that is beginning to work - I suppose it's no different to those with other food intolerance problems.

Keep up the positive outlook - we all have bad days but finding the way through these is a bit easier.

[Fee66]

Thank you for such a positive post.