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Hi Everyone,

I hope everyone is doing well. I have had a really tough couple of days. I am so confused and don't really

know where to start. I am definitely not a wait and see person.. :crying: For months I have had such pain off an on on my left side. No one seems to be concerned but me about this. I feel like there is something stuck in my back but I don't know if it is the muscles or the skin or even worse the heart. It is in the same area where they did the skin biopsy but it is not from that. This started way before that. It is also what started me on my quest of the endless doctor/hospital visits. How long do they wait before they test the organs to make sure that they have not been affected. :temper-tantrum: My skin symptoms started after all the muscle and body aches which have gotten better with the exception of my feet. This nagging ache is really freaking me out. I do have an appointment with my Rheumatologist on Thursday and feel I need to touch base with the primary. I also located a specialist 45 minutes away thanks to this website. I am sorry if it seems like I am whining just no one understands the fear like you guys do. Any insight from you would be great..you are the experts... Thanks so much for listening...All the best



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Hi Christine,


I hope your rheumatologist and primary care physician can get to the bottom of your pain in the next visits. Sometimes we need to be pretty firm in reporting a symptom that concerns us.


I ended up at a scleroderma center of excellence and before my diagnosis they put me through a complete battery of tests which looked at my heart, lungs, and kidneys. They found evidence pretty early in the process of lung problems, so that may have had some bearing on how much testing was done at the outset. Also, since I have no tell-tale skin involvement, they needed to rule out other diseases. That was my experience and I'm grateful they were so thorough - I think most patients and experts would both agree that screening for problems early on is best.


Now, about your pain. I'm no doctor, but I kind of wonder if it might not be related to esophgeal spasm and/or GERD. I was seriously convinced I was having a heart attack for the first dozen spasms or so! :blush: Just a thought and maybe something to ask about.


Will you let us know how you get on Thursday?


Best wishes,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Thank you Jeannie for the insight. It is greatly appreciated. I will definetly let you know what happens on Thurday. I think you are right and it is time to push a little harder with these doctors. Thank you again

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Hello Christine


The only thing worse than pain is pain without a known cause BUT you may well get a cause to attribute your pain to after you see the rheumatologist. It's so frustrating when things are going on with the body you live in and you don't know what they are! :angry:


I was diagnosed in August 2007 and had my tests, lung function, renal function and ECHO in September 2007 when in hospital for Iloprost. My understanding is that the tests should be sooner rather than later to establish a baseline and to enable treatment should there be any internal involvement.


Please let us know how you get on when you see the rheumatologist.


Take care, keep posting and I hope tomorrow is better! :happy-day:

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Christine,


I'm sorry to hear that you're feeling so worried; it must be horrible and constant pain is very wearing.


I was diagnosed in July 2009 but came to the diagnosis back to front if you get my meaning. I had suffered with painful joints, Raynaud's, swollen fingers etc. for quite a while but it was when I developed a cough and breathlessness that I was referred to a top lung hospital before I saw a rheumatologist, who then confirmed the diagnosis of Scleroderma. At The Royal Brompton (lung hospital) they did just about every lung test known to man on me and took innumerable blood tests and started me on treatment double quick, so it wasn't until after all that, that I was referred by them to a rheumatologist at The Royal Free Hospital. I agree with Jeannie and Amanda that these tests are better done as soon as possible; in my case I had a very favourable outcome because the fibrosis and inflammation on my lungs were treated early.


I've also found that I have needed to be quite proactive with my general practitioner and the nurses; as Scleroderma is such a complex and unusual disease, they had simply never heard of it and my doctor has only ever come across one other case in her experience.


Please let us know how you get on with your appointment on Thursday and I do hope you soon feel a little better.

Jo Frowde

ISN Board Member

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 Christine,


I'm sorry you have a nagging pain in your left side. You did mention that was what started you on your endless quest of doctors and hospital visits, and it sounds as though you are still worried that it is some sort of severe, undiagnosed problem, probably a heart problem.


If you've already had a full battery of tests to rule out all the common causes of left side pain (which it sounds like you have), then are there any particular tests that you feel still haven't been done? If so, what are they? I ask because you may want to mention those specific tests (or concerns) to your rheumatologist.


Remember it is a falsehood that every pain needs to be entirely accounted for. Many of us have had aches and pains that the best doctors can do is rule out a serious cause. And lacking that, it is then chalked up as "one of THOSE things"...bothersome, common, but not life-threatening, and when the life-threatening angle is taken out of it, ideally all of our associated anxiety or concern should evaporate.


Sometimes we get too wrapped up in it though and we fail to realize when the urgent need for attention of a pain has passed, and the worry has taken root. If you find that normal reassurances just aren't reassuring at all, even though all reasonable measures have been taken, then it might be time to make sure the worry tree hasn't grown out of control.


Meanwhile, try to keep a cool head as you sort out what has been done, what could be done, and perhaps even what nothing can be done about, as you prepare for your rheumatologist appointment. Good luck to you in sorting it all out, and let us know what comes of it, okay?



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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