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How much do you tell your doctor?

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Keep in mind that in my area I searched for months to find a doctor who took my insurance so just changing doctors is not an option.


I'm sure I'm not the only one but do you find yourself not mentioning symptoms that bother you as they sound farfetched even to you? Or thinking you can't give him a laundry lists of things as he has already asked you twice if you suffer from anxiety attacks? Or that he has already informed you in a roundabout way that you are not a money maker for the clinic because you want more time than usual?


But I really do want to know what causes them- I want to feel that something is not a sign of a deterioration or is pretty common or something.

So have you found a way of getting answers that doesn't alienate the doctor? :emoticon-bang-head:

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Enjoy the ride,

My doctor always has me fill out a form with symptoms and things that have changed since the last time he saw me. I think you need to be persistent and let him know how symptoms are impacting the quality of your life. Some symptoms I am willing to work around and others just impact me too much and I want them addressed. So I always prioritize the most inconvenient symptoms. I also always make it a point to let him know what is working for me and if anything has improved - hope is a useful thing for doctors too.



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Hi Enjoytheride,


This may sound silly, I know, but the best way to put a doctor at ease that we are not suffering anxiety attacks is to ask for a thorough psych evaluation. Take all the tests they will give, and lay the subject to rest for once and for all. It is very common to suffer anxiety disorders either alone or along with chronic illnesses such as scleroderma. Refusing to even acknowledge the question, to pretend that we are above all that stuff like depression or anxiety, just adds fuel to their speculation and leaves it hanging as a perennially unsolved item.


If there are any mental health issues -- even the mere suspicion of them by the doctors -- then that needs to be tested for and treated, first of all. Then both we and our doctors know what symptoms are still remaining and unaccounted for. It narrows the field down for them and assists in diagnosis. And if we're positive that doesn't apply in our case, then by all means we should face the testing merrily and without hesitation, as well. Been there, done that.


As for symptoms, or symptoms being weird, I have reported all of mine at least once. I don't feel compelled to keep on repeating the symptom after it has been diagnosed and treated and documented in my medical history. If there are more than one or two new things to discuss, I make a list, organized by priority. I also schedule an extra-long appointment so that I don't set back my doctor's schedule all day long. I give them the list, let them know that it is prioritized and that it's okay if we only knock off one or two items on that visit, that any remaining items I can just set another appointment to cover.


Now, I also sort things out using my head. If my jaw aches for just four hours on one day, even if it is in spasms, I'm not likely to mention it if it goes away, is not part of an overall pattern or related to other things. I don't make mountains out of molehills or exaggerate any symptom, either. Our doctors do not like to be entertained; they want to very rapidly zero in on issues to see if they can provide any help, or not.


It also helps to do a little fact-checking with ourselves. Which of our symptoms could possibly be due to anxiety or depression or whatever? I'd say nearly all of us suffer from the effects of stress, from time to time, and some of us worse than others. Insisting that our symptoms can only possibly be due to a purely medical cause will raise an eyebrow; are we above being human? So being free to acknowledge things, like, "I was under a lot of stress at work during those three days that I had that headache, so I think that was the underlying cause. But my hip pain was in this exact spot, it lasted for six weeks and frequently even woke me up in the middle of the night. It was much worse when I attempted stairs or bent over. I tried to put it off to just stress, but I don't think the shoe fits for that one."


Things like that acknowledge that yes, we're human, yes, some symptoms occur or are worsened by stress. And that some things might bear more looking into.


Did I make any sense at all with that?

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

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