A huge worrier here. I am convinced I have scleroderma. My symptoms started in September. I am a 25 y.o female.
I just felt unwell, had a bruised feeling in my ribs and vision had become blurry in one eye. I have since had rib and pelvic pain, trouble swallowing, digestive issues and most recently I am now experiencing unexplained raised rashes on legs, on/off rashes on other parts of my body with white blotchiness, red flat itchy spots on my hands, an all over feeling of being ‘sunburnt’, extremely watery eyes and I now have had joint aches on/off in my fingers though the aches seem to be going whilst the rashing is intensifying amongst a new, scary symptom: a skin toned lump on my middle finger, just below my nail on the side of my finger.
What worries me most is that I am now linking symptoms I’ve ignored in the past to this disease. I have had a chronic cough for 6+ years that gets worse at night. I also have had calcium deposits develop on my two middle toes when I was 15 years old, I blamed tight shoes at the time. I have also dealt with cystitis-like symptoms on/off since a similar age, with no infection ever present - I’m now assuming it is likely interstitial cystitis. I have also had a head CT scan that revealed incidental dural calcification.
No general practitioner is concerned re my symptoms and won't let me see a rheumatologist or dermatologist. I feel alone and scared, and can not afford to pay for this at the moment. I have had a lot of tests:
- 2 Chest Xrays (clear)
- Neck ultrasound/transvaginal ultrasound (clear)
- CT of abdomen and pelvis (clear)
- Upper gastroscopy (no problems found), gastro told me to get psychological help..
- Numerous bloodtests, all normal, including ANA/ENA that I got privately after doctors refused me them
I still have an instinctive feeling something is wrong and I can’t shake it off. I don’t think I have obvious Raynaud's though my feet have always gone very mildly purple and tingly all my life but I have always had bad circulation and am very pale skinned. However, for 4 weeks now my hands have become pruney and wrinkled as if submerged in water and this never goes away, my finger tips also feel extremely raw and tender as if some skin has come away. There is tiny parts peeling and my skin in general is very dry, irritable and itchy.
Whew, sorry about my long post, but these 5 months have been bad for me truly and I feel scared and alone. Everyone is blaming my symptoms on stress or atypical manifestations of health anxiety and whilst I agree I am anxious, I am showing real, visible symptoms but have accepted mental health therapy anyway as that is all the doctors keep providing.
My main concerns are my rashes, itchy skin and wrinkly hands. Also the new lump that has appeared on my finger! Every time I convince myself that it might be something minor like allergies a new symptom appears further supporting my suspicion. I’m also concerned re the calcium deposits I have previously had on my toes (now left lumps) and the dural calcification found. My hands and feet are also always cold, though I have always dealt with this in the winter.
I am just so frightened beyond words. What if my chronic cough is from lung damage and chest xrays can not see it? Does scleroderma cause visible damage to the oesophagus or the sensation/dysphagia? Could my itchy rashes on my body and flat itchy spots/wrinkly fingers be symptoms of scleroderma? Interstitial cystitis has been connected with auto immune diseases I believe. This new lump on my finger - hardening of skin?! I’m really afraid as you can tell.
I have had two negative ANA blood tests, one in 2017 and one a few weeks ago. I also got ENA bloods done to test for scl70 in a panic, I wish I could find a way to get the ACA blood test done to look for the anti centimetre(?) antibody but this does not seem to be provided by any hospitals and no doctor will give me a referral. I know it is possible to have scleroderma with negative bloods.. agh! I just want to cry. My eyes are becoming more blurry and irritated, skin more irritable and the lumps and IC and being ignored by GPs is making me honestly lifeless.
Any advice appreciated, I honestly just wanted to have an emotional rant as I can’t handle this anymore. Does this sound like sclero? Do most people live a long life with this disease as a whole? What steps forward do I take, do I trust GPs and ignore my symptoms?
Thank you to anyone who has taken the time to read my worrisome-minded essay.