Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 11-25-2012, 08:52 PM #1
musicgirl757 musicgirl757 is offline
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Default Telling your doctor about new symptoms....

How do you present your primary doctor with a new pain symptom or other symptom that you believe is unrelated to your RSD without them saying oh it's all related to that RSD you have. I am tired of my new symptoms that might be other issues going on with me being slid under the rug (an easy out for them when they are not sure). So nothing ever gets done to treat my additional problems and I keep feeling worse. For example, I have a hard lump on my leg that keeps growing and is very painful. Any suggestions?
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Old 11-25-2012, 10:16 PM #2
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You just have to tell your doctor. There is no special way of telling him, just be honest. Most medical professionals will hear you out, then observe the problem(s). Any good doctor will know that not everything is rsd related if somebody has rsd.
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Old 11-25-2012, 10:38 PM #3
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Quote:
Originally Posted by musicgirl757 View Post
How do you present your primary doctor with a new pain symptom or other symptom that you believe is unrelated to your RSD without them saying oh it's all related to that RSD you have. I am tired of my new symptoms that might be other issues going on with me being slid under the rug (an easy out for them when they are not sure). So nothing ever gets done to treat my additional problems and I keep feeling worse. For example, I have a hard lump on my leg that keeps growing and is very painful. Any suggestions?
See a different doc...
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Old 11-26-2012, 10:00 AM #4
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I would prepare for all my appointment by making a list of the things that I wanted to discuss with my doctor, including new symptoms. Then at the appointment I would just lay it out, open and honest.

If your doctor doesn't take your new symptoms seriously and doesn't actively try to help you with them, then you do need to find a new doctor. I did and after I did my care and my health improved 1000%. Don't underestimate how important it is to have a doctor who takes you and your health seriously. My original primary care doctor when I started treatment for RSD was the doctor I had all my life. He delivered me when I was a baby for goodness sakes. But when he told me that I would have to get used to living my life in a wheelchair...that was it. I was done with him. He didn't care about helping me, only with pumping me with pills and forcing me to do treatments I did not believe in. So I dumped him and got a new doctor who is absolutely wonderful.
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Old 11-26-2012, 09:53 PM #5
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It is very difficult to change doctors sometimes. Another thing you could do before "giving up" on your existing doctor is writing them a brief (1 page) letter. Make sure the letter is not accusatory in tone, but be specific as to what you want and need from your current/old doctor.

1. You have enjoyed being their patient for X years.
2. You have told him/her of your new symptom on the past X visits.
3. He has not done anything about it.
4. You really need him/her to address this new problem or you will have to seek new treatment with a different doctor, this is very serious to you.
5. You would like a Referral, or test, or X treatment.
6. It is very frustrating and sad to think about leaving their practice.

Above all, be Polite, thankful and gracious! You don't want your old doctor to "bad-mouth" you to a new doctor because your new doctor will get your old doctor's medical records and read them or talk to the old doctor. Depending on the size of your community, the new doctor may know the old doctor personally too.

TOS and Pain Management is not a big field so its likely that they know each other and they could and will talk to each other.

Word from the "been there-done that" club.
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Old 11-30-2012, 10:15 PM #6
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I agree with NerPain4... "Above all, be Polite, thankful and gracious!" We needed tests run, and a larger refill on meds when my daughter went to college. (Yes, its extremely hard, but God demonstrates His care for her everyday. Its been 13 years). We brought homemade cinnamon rolls to the office staff as a thank you for caring for her. THEN the doc got more compassionate, more focused on what she actually needed! The 'catch more flies with honey' theory in action!
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