Monday, February 24, 2014

Posting questions in health forums, sorting through answers

There are a number of health forums (kinda like what we once called "chat rooms") on the internet now, where you can post a question and others (usually patients) chime in with what has worked/ not worked for them. There are forums for almost any specific disease you can think of, and often more than one.

When you post a question to such a forum, you're going to get a lot of answers, and you can be almost 100% certain they will conflict (at least in the lupus forum people stay on topic. There's no one turning every conversation into "Obama this" "right-wingers that." Geez, lupus patients are fighting brain fog and they can stay on topic in a forum! Are you listening, Yahoo News trolls? Oh wait now I'm off-topic. Ironic).

Here's an example of what you might get.

This question came from a lupus online forum:

"I'm writing for advice on neuropathy treatments.
I have just tried 10 k lazer treatments for the neuropathy in my feet and it made zero difference.
I can't stand up longer than 10 mins at a time and am adjusting to walking with a cane now.
If anyone can share something that has helped please let me know."

It was met with several responses:

1) neurontin didn't help me but lyrica does, though i still get break-through pain.

2) I have a friend who had neuropathy and falling and was helped by Cymbalta

3) I was on neurontin but was struggling with bad headaches so my neurologist switched me to amitriptyline. I also have IVIG treatments, they seem to work for me.

Here's my response:

I actually was helped by neurontin. but we're all different. And it wasn't generic at the time. I imagine it is by now, as that was 2002 when I took it. My feet used to burn like mad and keep me up all night, every night. They would finally stop burning about 6am, then the ^&%$ leafblowers and lawnmowers would start up at 7am (living in South Florida at that time).

People who haven't been there can't quite grasp how torturous it can feel. Which is why I was so grateful that the neurontin worked- I could finally SLEEP! (Once the leafblowers left, anyway- I've since learned to appreciate a bedside white noise machine).

I did read the warnings on neurontin, and I knew it wasn't a long-term solution. I wanted to be drug-free, even though the drugs were helping. So i kept looking for solutions, and I was helped a great deal by 2 things: Chinese acupuncture and chelation therapy. I was doing several things at once so I can't say which helped most, but those were the 2 things (besides doctor appointments and trips to walgreens) that I did the most.

Nowadays, I stay healthy by avoiding the foods I'm allergic to, and getting enough rest and exercise.
I am now on zero lupus drugs. and have zero neuropathy since 2002

I found it very helpful to keep track of my symptoms and pain levels, and what treatments/ changes I was making in a journal. I could measure my progress, and tell which things help and which don't, because it sometimes takes a while for things to make a difference. Like acupuncture or diet change- it can take days or even a weeks before you notice a shift.

You can create a journal with something as simple as a spiral notebook, a Word document, an app like Symple, or this customizable "Symptom Tracker" that I created (it's free):


Ultimately, it's you who lives with any decision about your health care. So, the way I handle sorting through responses I get from forums is this: whatever pops out to me amongst the responses as feeling like a good thing to try, I give it a fair shot. I try stuff. Keep what works, toss what doesn't. And I keep track of my symptoms and what changes I am making, so I can connect the changes with the results.

My best wishes for great health for each and every one of you-


Carla Ulbrich

The Singing Patient

Humor, song and hope for people  who need it most- patients and healthcare workers