And Pip, yes, I think the meds have brought on my craving to do this again. Or is that not what you meant....
I've got allergies on there, and I could add meds as an answer to the trigger question. Can you believe I forgot nodules as a symptom! Maybe cuz I don't have any.
Also wanted to mention in my first post that I would leave the survey open for two weeks this time.
Inner - anyway to make this more 'scientific' so it could count somewhere? JSNM was talking about that somewhere. Buckeye, any suggestions. We're all just sitting here, might of be of some use!
And as I'm pushing in my suggestions - anybody else have some? Things they think got left out or would be more telling? Speak now or forever hold your peace!
I have a few things to add, if it wouldn't be too big of a hassle. Could you ask about costochodritis and if people get it, how often? I'd also like to know if anyone else experiences pain in their neck and the extent of it. Ooh, and if anyone else has back issues where they are stiff after sitting or bending over. (It almost feels like your spine doesn't want to straighten out.) Also, I know some people use ice and some use heat for their pain. It be interesting to see that percentage. I know a lot of people have indicated that certain foods aggravate their RA. That'd be good to know, too.
Well, sh*t. I'm adding to the length here!
Hope ya'll are all having a superfantastic and extra-comfortable evening! *hugs*
Mel those are FANTASTIC ideas!!!
I would like to know what methods people use for pain relief. It would be interesting to see.
It would also be interesting to see how many people have what type of pain. Don't ask me how to word that any better. I can't right now. LoL That's all I got..........take it from there Pippy....lol
To give you guys an idea of what I've already added:
Current age
Have you given birth
How is your blood pressure (low/high)
How is your regular temperature (low/high)
Are you a smoker
What kind of allergies do you have
How was your overall health before RA
If symptoms not symmetrical, are they on dominant side
Did symptoms come on gradually or suddenly
How long have you had RA/symptoms
Did diagnosis trigger depression
Does your insurance cover biologics
Is there a treatment you couldn't afford
Which OTC NSAIDs have you taken
Added options on non-Rx treatments: ice/cold, heat, steroid joint injections, adding specific food (like honey/cinnamon), MJ
What kind of assistive devices do you use
Do friends understand your RA (I only asked about family the first time)
Has RA affected your socializing with friends and family
An OPTIONAL place to include your e-mail if you want to be notified directly when results are posted
An OPTIONAL place to include comments to me
Do ya think we could add costochondritis to the related diagnoses question? I know it's not really a diagnosis, but that seemed the best place to fit it.
Holy crap, you've been a busy woman!!
Personally, I'd like to see costo as it's own question just because I'd also like to know how bad it actually gets (struggle through it v/s trip to the ER) and how often people get it.
OOH! How about finding out where everyone currently lives? It's all anonymous so it won't be giving away anything. I know a lot of people are undercover.
I'd like to see questions relative to things we like/dislike about whoever handles our primary RA care.
I'd also be curious to know which DMARD people started on & if it failed, after how long and at what time increment were other meds added. I see so many posters taking multiple modifiers, inhibitors, infusions, etc. and often wonder if they really feel they are deriving greater benefit with the addition of more meds.
I'd like to see a line of questioning relative to specific side effects experienced on specific RA drugs/treatments.
Thanks for your consideration.
K.
Ok - on the testing question like RF, how about at diagnosis, highest, current with a 'don't know' choice. I'm betting way too many of us have no idea what our labs say. Edited to say - but for all the big ones like RF, CCP, CRP and SED. Also, have your numbers come down and on which drugs?
How about mineral panels - so they know if they are short on essential minerals like potassium, calcium, or magnesium? Are you on supps for it.
Same for Vitamin D levels.
For those that gave birth after diagnosis - did they get remission? How were they effected after birth?
About meds - maybe I'm not clear. Lots of theories that say NSAID use can burn holes in the guts and cause these diseases. So - do people think any meds influenced getting this disease? Which ones? Hence the Accutane question.
Do you think you have 'leaky gut' that caused the onset.
More questions on stress. Were you in a situation just prior to onset?
Types of pain. Predominately ache, stabbing, throbbing, saw your arm off?
Supplements - what works for you? Probiotics? Whole lemon/olive oil, magnesium, calcium, potassium, B12, D, herbs etc. That is going to need a fill in the blank. Maybe break it up by vitamins, herbs, minerals?
Stress reduction techniques?
Reiki? Massage? Accupuncture? Accupressure. People, jump in here, what am I missing?
Katalina hit the big question and something I've wondered about. Is there anyway to design a survey that shows which drugs did what and for how long? For example, I had some (1 or 2) pred paks and that's it besides AP. Without a chart, it would be hard for some to figure out, but if they could, that would really help us figure out the truth about how long most of these drugs last. Remember the efficacy study Suzanne posted that said one of the most potent drugs was LESS effective at 6 months.
Can you please ask what your doc said if you asked about AP? Please? And how many docs 'til you got one that would say yes? If he was unwilling, why? If he was willing, did he give a 'time' frame (heard of docs saying 2 or 3 months - sheesh NOTHING works that fast!)
If you're on AP - did your doc prescribe probiotics.
Pip
Pip!2008-03-14 21:25:07I would definitely do it again. You may need to add a don't know option. Since I have been so recently diagnosed, we have not redone the basic tests yet, so I have no idea if the meds have brought any numbers down.
These are lots of great questions, but may be hard to do on this kind of survey and make it too long. I'll see what I can do.
On most questions there is a not sure/don't know/don't remember option now.
Yeah, now that my grand-daughter is back home I have the time to devote to a great survey like this. Bring it on!!I'm interested in doing another survey, but it would be more useful once I have a real DX and maybe a prescription. I'm not sure how many of us are still waiting on this, but it makes a difference.
Looking forward to it! For questions that related specifically to the health care system, could you include a response category that says something like "Not US resident, therefore not applicable"? I had concerns in your last design that you might receive misleading responses or high levels of non-response, which can each lead to different interpretations in the data.
Thanks ... can't wait to see the next version!
Hey, Suzy-Q - maybe you shouldn't have asked for our feedback!
Joy, I agree with you that it was designed mainly for the US, in everything from drug names to insurance. What I've done for version 2, if this makes sense, is to include an insurance option that is "Medicaid / Medicare / Government Sponsored" to include countries that have government sponsored healthcare. I know it's not exactly the same, but does that work? Any other particular spots where we could work it to be more global? Drug names/availability is difficult, so I think we'll just have to work with what we got on that one.
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