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Hello,

 

I am new to this board and have been reading through posts and learning about scleroderma for a little while now.

 

I think I may have started developing symptoms that point to scleroderma over the past few months. I certainly started noticing more as I read more about the condition and now can’t tell if it’s just anxiety related or if the symptoms were there and I just had not taken much notice of them prior to, or if they have actually just manifested right at the time I was reading into it.

 

Symptoms started with a red spot on my finger that persisted for months during winter. For a week or so the finger also swelled. Many primary care physician visits were made and all sorts of topical creams and ointments were tried. The spot persisted so I had blood work ran for a whole range of things inclusive of ANA and a ENA panel. All of these tests reported negative. These tests were repeated again around a month or so later and again were negative. After hearing the word scleroderma I began googling and have been panicked ever since. From that point is when I started to notice/develop reflux, a few nail fold haemorrhages. I’ve also noticed a couple of tiny pin point size telangiectasia on the back of my hand.

 

I was referred to rheumatology where I was examined along with the blood work and the outcome was that I had chilblains.

 

Since then I’ve noticed periungual erythema in many of my fingers and my hands get bright red halfway down when I stand or walk/exercise which I find embarrassing and concerning. I don’t get the typical Raynaud's color changes but my hands are always cold and have been for as long as I remember. I’m just wondering if the redness I see could be in fact Raynaud's?

 

I’m very worried. I understand the kind folk on this board are not medical practitioners and therefore cannot offer any true medical advice or diagnosis however I was just curious that if I did have scleroderma, can it be managed and treated so as a near regular life can still be lived? I’m a mid 30s male and was just about to embark on starting a family however I’m very concerned now. I understand everyone’s sclero journey is different however just looking for some reassurance.

 

Best wishes.

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Hi J210429,

 

Welcome to these forums.

 

I'm sorry to hear that you're experiencing worrying symptoms; of course, it's possible that they could relate to scleroderma, but equally they could be due to any number of other health problems. At the present time, it's possible that you're jumping the gun a bit. As you do seem to be quite concerned, I would suggest that you go back to your primary doctor, with a view to obtaining a referral to a specialist (if it subsequently did turn out to be caused by scleroderma, then you would need a referral to a listed scleroderma expert.)

 

Obviously without second sight, or a definite diagnosis, it's impossible for me to predict the prognosis of the disease and therefore reassure you, but many of our members (myself included) lead a perfectly full and active life in spite of it, so it certainly is not the end of the world. 

 

Certainly, if you're feeling anxious and worried, I would be inclined to deal with that as a priority.

 

Anxiety is a symptom that needs to be addressed and minimized when one is dealing with a chronic illness such as scleroderma and as it's perfectly normal to experience depression and anxiety along with illness, it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with.

 

Kind regards,

 

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13 hours ago, Joelf said:

Hi J210429,

 

Welcome to these forums.

 

I'm sorry to hear that you're experiencing worrying symptoms; of course, it's possible that they could relate to scleroderma, but equally they could be due to any number of other health problems. At the present time, it's possible that you're jumping the gun a bit. As you do seem to be quite concerned, I would suggest that you go back to your primary doctor, with a view to obtaining a referral to a specialist (if it subsequently did turn out to be caused by scleroderma, then you would need a referral to a listed scleroderma expert.)

 

Obviously without second sight, or a definite diagnosis, it's impossible for me to predict the prognosis of the disease and therefore reassure you, but many of our members (myself included) lead a perfectly full and active life in spite of it, so it certainly is not the end of the world. 

 

Certainly, if you're feeling anxious and worried, I would be inclined to deal with that as a priority.

 

Anxiety is a symptom that needs to be addressed and minimized when one is dealing with a chronic illness such as scleroderma and as it's perfectly normal to experience depression and anxiety along with illness, it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with.

 

Kind regards,

 

Hello Joelf,

 

Thank you for your reply. It’s reassuring to hear that in spite of having scleroderma you and other members are living a perfectly full and active life.

 

I’m a very active person myself and once again jumping to conclusions i’m concerned about the possibility of having to give up gym and physical activity if I were to have scleroderma.

 

I read on a number of websites that most people with the limited systemic form live a full length/expectancy and near normal life, obviously with the aid of a medical team and treatment. Would you suggest that’s correct?

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1 hour ago, J210429 said:

 

I’m a very active person myself and once again jumping to conclusions i’m concerned about the possibility of having to give up gym and physical activity if I were to have scleroderma.

 

I go to the gym four times a week (providing it hasn't been closed due to lockdown) and have done both before I was diagnosed with scleroderma and afterwards. In fact I put down the success of my treatment to the fact that I've always been very fit.

 

1 hour ago, J210429 said:

 

I read on a number of websites that most people with the limited systemic form live a full length/expectancy and near normal life, obviously with the aid of a medical team and treatment. Would you suggest that’s correct?

I would emphasise that scleroderma affects everyone differently and because I have had a favourable outcome, sadly it doesn't mean that it would be as good for everyone else. As I said in my previous post, many of our members live full and happy lives, despite having scleroderma. However, like most things, a positive attitude goes a long way and I have no intention of dying anytime soon ( barring my being run over by a bus or some such eventuality) and fully intend to live for a good long time ( if only to get my money's worth out of my pensions! :wink:)

 

Kind regards,

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