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Ryan123

I’m so frightened right now. Please help.

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I’m new to all of this and absolutely terrified and would really like someone to offer some guidance/advice. Please help. 

 

I’m a 34 year old, otherwise seemingly healthy female living in Seattle. Over the the past month I’ve had some very odd symptoms that now that I’m putting together, seem it could be this. Slightly dry and bloodshot eyes, weird rashes, more broken blood vessels than I’ve ever noticed, GI issues, cold feet that turn blue only when I’m sitting, weight loss and some back pain. I’ve battled severe health anxiety and depression for most of my life and this just feels like too much to bear. I’ve been to four doctors in the past week (twice to the ER) and no one will listen to me. They all seem to think I’m fine and it’s “anxiety” which I know it’s not. They’ve done the basic blood work and took a sed rate and c reactive protein and all were undetectable. I’m begging to get into a rheumatologist as soon as possible as if this is something, I want it caught early but that’s proven to be difficult. Health has always been so important to me and the prospect of all this is preventing me from functioning in my day to day until I get some answers.

 

Please please help with any advice or reassurances you may have. I want a long healthy life with children and am just so frightened.

 

Thanks in advance everyone.

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Hi Ryan,

 

Welcome to these forums!

 

I'm sorry to hear that you've been experiencing worrying symptoms.  I've included a link to our Symptoms Checklist, but would point out that the symptoms you describe could easily relate to any number of health problems and are not particularly typical of scleroderma, which is a complex and rare disease and not something which can be easily diagnosed by putting a few symptoms into a search engine.

 

However, far more concerning is the amount of anxiety you're experiencing. One thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune diseases. Please note I have no medical training (apart from an out of date first aid certificate and a fondness for telling my medical team how to do their job) but I would suggest that some of the symptoms with which you're suffering could be due to your anxiety and stress.  Anxiety is a symptom that needs to be addressed and minimised when one is dealing with a chronic illness such as scleroderma or any other medical problem 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,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Jo,

 

Thank you so much for the reply. Yes, agreed googling symptoms is never the best path forward but after reading a bit more through the forum, I’m definitely a bit more alarmed as I feel that so many things other people are experiencing, I’m experiencing but maybe to a lesser extent at this point? I just wonder if it’s very early. In any case, I know anxiety is hugely detrimental to any health issue so I agree, getting that under control is paramount. I have an appt with a rheumatologist tomorrow so I’m hoping I can get a few more answers and/or tests. 

 

Thanks again 

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I would much rather be working. I was a professional truck driver going down the road, not much to worry about. I drove a flat bed truck and I was known for my friendly demeanor and to never give up. I owned my truck, but I started with not being able to load my truck, then I got a head injury and things went down from there. Because of the scleroderma I lost my truck and a lot of money, so if you are reading this it gives you an idea of the cost. Now I sit and watch tv and I do what I can and if others don't like it they can go jump in a lake.

 

I need help with most everything I do.The pain at times is almost unbearable and I would not wish scleroderma on my worst enemy - oops, my body is my worst enemy! And yet I am mostly happy; my son does the driving because I don't feel safe.

 

I hope you find the answer you are looking for.

 

 

 

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Hi Quiltfairy,

 

I'm so sorry that scleroderma has taken so much of a toll on you and your life and I do hope that things will improve for you.

 

Ryan, I would just say that scleroderma does affect everyone differently and sadly some, like Quiltfairy, are affected very badly. Others (like yours truly) are able to carry on with their lives, thankfully without too much disruption and whilst obviously not ecstatic at the prospect of having a chronic illness, are nevertheless able to have a good quality of life, despite it. 

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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