One of the most frustrating things about living with Scleroderma is waiting for the next symptom to show its face.
It seems like every time I blink, I’m diagnosed with something else. Or I’m questioning every tiny new change my body throws at me. #Paranoid
Up to this point I have been diagnosed with the following, all secondary to my Systemic Sclerosis, (Scleroderma).
- Celiac Disease
- Raynaud’s Syndrome
- Neurogenic Bladder
- Sjögren’s Syndrome
- Hiatal Hernia
- Pulmonary Hypertension
- Eosinophilic Esophagitis (EoS)
- Restless Leg Syndrome
- Myofascial pain syndrome
I’m sure I’m missing a few. But you get the point. It’s constantly evolving over time with new doctors, new tests & disease progression. Autoimmune diseases obviously don’t like being alone. They invite all their friends to join them in destroying your body.
I’m grateful to my Sclero brothers & sisters from the online Facebook group Scleroderma (The Original). https://www.facebook.com/groups/sclerowhat/?ref=share
They are a fountain of information, a source of support & a reminder that I am not alone. I have asked a million questions, posted pictures looking for explanations & searched through their posts for answers.
Please keep in mind, this support group is for people with an incurable and potentially aggressive disease. Day after day you lose someone in the group. This reality is a slap in the face to your positive determination to beat this wretched disease. For me personally, I love the group. I’ve found ways of coping with the losses & the heartbreak. My Sclero family keeps me balanced, for the fact that they remind me I am not alone.
Most Sclero patients have obvious skin involvement. It creates major changes to their appearance. I don’t have a lot of skin involvement. Sclero has mainly attacked my internal organs. I find I have some anxiety thinking my skin is next. I ask a lot of questions, whenever I have a skin issue. I’m not a hypochondriac, I’m a realist. I believe my questions and feelings are valid, knowing how aggressive Scleroderma can be. We are told repeatedly that early detection of any progression is vital, to the overall treatment plan and prognosis. Usually a symptom leads to something related to the progression of the Scleroderma. It’s important to check on things & ask questions. Advocating for your life is always the right thing to do!
One symptom of Scleroderma is telangiectasias, (tiny dilated blood vessels on the skin). I have not experienced this. But if you recall in my previous posts, my original Rheumy stated I did NOT have Scleroderma, because I had no telangiectasias. He was wrong, twice. I get frustrated thinking about the what if’s, when I think of him. Perhaps if he had run some more tests, I would have been diagnosed correctly decades ago. But he did not & here we are. His arrogance & disbelief contributed to my paranoia & anxiety when it comes to new symptoms & knowing something isn’t right.
A few things I’ve brought to my support group to ask about, when I’ve been concerned about further disease progression.
- Tiny red dots on my legs
- Red dots on the inside my lower lip
- Mild tightening starting in my hands and feet
- Thickening patches on feet
- Pain & swelling of my finger & thumb joints
- Stomach issues
- Leg turning inward
- Eyesight changes
- Hair loss
Again, I’m sure I’ve missed tons. But my point is, almost everything I ask about, I get really great advice & information & I take it up with my doctor. Which leads to tests & oftentimes adding a diagnosis to the list. #NotParanoia
Itching is a huge symptom that I ask about. From time to time I have itching of my hands, (especially my right thumb joint), my legs, my feet & ankles, my ears, lower back & scalp. It gets so bad that I am not exaggerating when I say, “I could scratch my damn skin off”!!! I wake up to bleeding legs from scratching all night. It could be a million different things, but I feel better knowing I’ve addressed it with my doctors and they are trying to help end the madness!
Another beautiful thing that comes with Scleroderma are calcium deposits. They can build up anywhere and they force themselves to the skins surface. Its an excruciating experience getting them out. Sometimes Sclero patients experience ulcers as well. Mostly on the tips of a their fingers.
“People with ‘primary’ Raynaud’s phenomenon, do not get ulcers. The pairing of Raynaud’s and skin involvement in scleroderma can lead to tissue breakdown. The result of this combination is when patients develop a digital ulcer. Around 40% of people with scleroderma will develop digital ulcers.”
I have been blessed to not have either a calcium deposit or an ulcer this far in my Sclero journey. But I’m not afraid to show picture after picture to the group, if it looks & feels like I could be developing one of these issues. That’s literally what a support group is for, support!
Fight for yourself. Do not be afraid to question everything. Have faith in God & yourself to get you through all of the fear & confusion having an auto immune disease brings.