It's been only a few days that I came across this forum and I've already found some of the posts invaluable. I was diagnosed with limited sSc in late August and the Internet has been my only advisor...It's good to know that on this forum there is a person on the other side, one that I dare call my family based on the type of discussions occurring...
So here is my story...
- 35 yo white female, living in London, with 2 little and very energetic children (5 yo girl and 21 mo boy)
- no family history of Scleroderma or any other autoimmune disease
- living a busy life with a demanding job in big corporation (managed to switch to a 4-day working week earlier this year for family reasons, and before my diagnosis)
- generally quite healthy and nutritionally conscious, never smoked - fit (170cm, 60kg), exercise conscious (gym 2-3 times/week+ I've always been into sports and exercised), try to watch what I eat (fish, pulses, nuts, greens, fruit, etc mostly)
SYMPTOMS and DIAGNOSIS
- Suffered with severe Raynaud's since May '16 which led on occasions to a permanently purple finger and a digital ulcer on it that took almost 2 months to heal (this is what prompted me to go to the GP)
- Had some Reynaud's since about Jan'15, right after the birth of my son, however didn't seem major at all and didn't bother me (1 or 2 fingers only, get blood back in quickly)
- had some sort of dark lesions under my nail bed on 3 of my fingers. Perhaps some puffy fingers
- no other real symptoms that I could think of as typical for Scleroderma (i.e. no skin involvement, GERD, swelling and pain, calcinosis, etc.)
- diagnosed with limited systemic sclerosis in mid/late August '16 - ANA positive, Anticentromere antibody present. Nailfold capillary suggesting abnormal capillaries
- I've been taking 20mg/day Nifedipine since end-August. Still suffering from Raynaud's but no ulcers/lesions/blue fingers at this point
- I'm clearly early in my Scleroderma journey, but I know there are plenty of you with a lot more info from both personal experience and research. First, I have no idea what trigger caused "the perfect storm" this summer for me to provoke the onset of the disease, however I'd like to minimise those future triggers as best as I could. That's why I described my situation/lifestyle above as it could perhaps help in your assessment and advice. WHAT CAN I DO TO LIMIT THE PROGRESSION OF THE DISEASE AS MUCH AS I COULD?
- I've noticed that when I go to the gym and exercise (cardio/strength training classes/high intensity classes) I tend to get Reynaud's - I certainly don't want to stop exercising but seeing the white fingers is disturbing - WHAT SHOULD I DO ABOUT IT?
- I'm conscious that I need to limit the frequency of Reynaud's - but what is likely to happen over the years if I'm not as successful at limiting the attacks? I'm especially worried about my internal organs..
- Would you recommend any specific alternative medicines/additives to help with the disease (i.e. ginkgo balboa, ginger, fish oil , etc?)
I'd be really grateful to any advice given! Good luck to all of you with keeping this beast at bay!