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By October 17, 2009 - 3:46pm
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My question isn't about a single problem or illness, but more about who to talk to. Now we can look things up on the Internet, as well as ask friends, neighbors, or go to a doctor, someone at the gym, or a dietitian, how do you know who to ask about what? where do you get the best advice? With so many kids on information coming from different directions, who do you go to on a regular basis, or when you have a major health problem?

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Yes, I do think many of us do research this way and especially those of us with a disease/condition that is not well known in the medical community. My condition, RSD Reflex Sympathetic Dystrophy or CRPS Complex Regional Pain Syndrome, is easily explained as a form nerve damage, that is a very simple explanation. This disease or monster (as I call it) does not follow a set path or progression in each patient. The severity of this disease is not directly related to the severity of the injury that caused it. Each RSD/CRPS sufferer responds differently, each of us has an individually tailored medication regiment. One of the things we discuss alot is medications and their various side effects. We discuss how to find a good doctor, what type of doctors we see. We ask questions about various physical therapies. We discuss new symptoms and what they might mean. We talk about and try to explain medical terminology that often seems confusing and contradicatory. And many of us read and do research on a daily basis, sharing the new information and research we find. We ask each other how we cope with things like staying warm, depression, or difficult family members. These are not things you will find in articles but they are important to me for my survival.

The other benefit is the understanding and support from those like you. Sometimes, the only person that truly can understand is someone afflicted with the same condition.

I hope this answers your question.

October 24, 2009 - 5:17pm

HI Reruho:

Thanks, that's interesting advice, particularly about what different sites and people can tell you, or getting other views. Is this something you think many people do?

October 24, 2009 - 2:07pm

Hi cssmith,
I would have to say if you have a particular health issue, I have RSD/CRPS, is to find a forum that deals with that topic. I am currently on 3 forums that deals with my health issue. We ask questions of each other and share information/articles that pertain to our health issue. I have found that many times I get excellent information about a procedure that you do not gleam from internet articles. I do research on the questions asked so that I can help this others find answers and to broaden my knowledge base. And, I find after you read 20-30 websites on a health issue, you get a good feel for what is good information and what isn't.

My old doctor told me to become an expert on an condition I had to protect myself, because doctors can't know everything. I now question things that I do not feel are kosher. I have also told doctors "No" to a treatment because I knew it was a dangerous treatment for me. You have to be an advocate for your health.


October 23, 2009 - 8:39pm

Thank you susanc.

You're right, it is general, but the part I'm curious about is how people "simply pull it all together" as you say. You list a lot of different sources, but its hard to tell which to follow with so many varying opinions. Shopping for medical information that I "like" is what I'm trying to avoid, and wondered if anyone in the comunity here had a better strategy for "fitting it all together".


October 19, 2009 - 12:22pm

Thanks for these responses. I guess I meant more informally? Where do people feel they get information from? How do you put it all together with so many different sources?

October 19, 2009 - 11:12am

Excellent question!

There are a few ways to know "who to talk to" in the medical, health and wellness fields, as well as how to look online to find credible and reliable health information.

How to Find a Credible, Online Medical/Health Website:
Look for sites that end in ".edu" or ".gov", and if the site ends with ".com" (as does EmpowHer.com), look for the "About Us" section and make sure there is a Medical Advisory Board. (You can view EmpowHer's "About Us" section at the link:
https://www.empowher.com/company. Other sites may have credible information and/or personal stories that are helpful, but always verify the information at a site that does not sell products and is a company that is fully transparent.

How to Find a Quality Health Care Professional In-Person:
Depending on the condition or topic, every health profession has a credentialing board or "over-seeing" professional association that sets the gold standard for that profession. Many "health professionals" can add a title after their name, and not have the credentials, certifications, training and standards that need to be fulfilled every year (to maintain these credentials).

For instance, if you need to talk with someone about nutrition, food, weight, body issues, you can talk with a nutritionist, but make sure this person is a Registered Dietitian (R.D.). Same with any medical specialty; even if they are an M.D. (medical doctor), you want to make sure they have specific training in the specialty area.

Lastly, there are many individuals who have great knowledge, experience and hands-on training that do not meet the above criteria. The one example I can think of would be those in the complimentary and alternative medicine fields, as this is still an area with much controversy in the medical model. For those professions with no real credentialing system are national/international professional association in place, make sure to seek these individuals out with a critical eye, ask for referrals and talk with lots of their previous clients, and be sure to tell your primary doctor about any new medications or treatment regimens.

Does this help?

You can always ask us to help find a doctor in a specialty area and location, too!

October 18, 2009 - 6:47am
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