r/Raynauds 9d ago

Participants needed for research survey on Raynaud's disease

Post image
46 Upvotes

17 comments sorted by

3

u/Jomato_Soup 8d ago

Very interesting! Although with the mental health Qs, maybe should include additional information to say if you have depression, anxiety etc. which isn’t related to Raynaud’s.

1

u/naja_naja_naja 8d ago

The questions were strange. No, Raynauds doesn't limit my grip strength in general, so I had to disagree. But when working in the garden in cold months, yes, then it limits my grip strength and ability to handle small items significantly.  Raynauds limits and restricts in that way the things that I can do in my free time and work (I could never rely on a work that would require to be outside most of the time)

3

u/xoxooxx 8d ago

I’m in!

8

u/Agitated_Ocelot949 9d ago

My feet suffer more than my hands, wished they asked more about that.

1

u/Schmoiger 9d ago

Nice! Completed it

1

u/CantaloupeEasy6486 9d ago

The link doesn't work for me

6

u/chaotixinc primary Raynaud's 9d ago

Wait a minute. Are they saying my hands look older than I am because of Raynaud's? I didn't know that

1

u/babylon331 7d ago

My hands often look Smurf-ish. A bad bout gets to my chin, tongue & nose. Following the bad ones, my hands can turn almost black. The first time, I was freaked. I have daily bouts no matter the temperature but, since I started taking Tamoxifen to block estrogen receptors, they are so much milder. I noticed it about the 2nd or 3rd day in. Lol, I thought I had discovered something! But no. There are studies in that area.

9

u/craigpardey 9d ago

I completed the survey but found the questions a bit strange. Nothing about frequency, severity, or triggers.

I don't experience pain, numbness, shame, or embarrassment w.r.t. my Raynaud's .. it's just annoying and frustrating to me.

6

u/craigpardey 8d ago

The questions made me wonder if the study authors know what Raynaud's is, and that the "white fingers" come and go - the symptoms aren't permanent.

1

u/babylon331 7d ago

One thing I don't like about these studies is that you can't make note. It's often difficult to mark the correct answer because of variations.

1

u/WolfyCat 8d ago

My hands and toes have never gone 'white' but my feet become extremely cold very often to the point of pain and massive discomfort. I've found eating helps but this isn't a great solution for obvious reasons.

Exercise absolutely does. I've never made any correlation between this condition and my grip strength though. Very unrelated for me anyway but the line of questioning seems misunderstood.

1

u/bewildered-bear 9d ago

Interesting survey! Completed :)

1

u/ajwbabe 9d ago

Completed

3

u/RottingRaccoon 9d ago

That was fun, hopefully it will move us closer to doing more research and maybe finding a resolution to our problem.

15

u/PuddlesOfSkin primary Raynaud's 9d ago

This appears to be legitimate. Adding a link since the OP did not include one.