I did a silly,silly thing

[Gerty]

How stupid,dump am I why should I think that anybody would believe me its beyond me so why did I do what I did was because I thought well for years and years now nobody believe my symptoms of S.L.E or fibro and now more recent sjs because its sorta of like if it don't happen it can't happen If I can't see it then it just don't happen. Even tho I don't have or

should I say not DXed yet for Raynaud's I think I might have it.So I took photos and showed my partner silly me he is colour blind   he told me he could not see a think even tho my fingers and hands were black he told me to show my hands to him so I did the next time It happend nope your imagining things I can't see any thing at all. So I put the photos on my Facebook to see what my friends thought. They could see it but said hinting it was just a joke or something. I tried to tell them no I have not docked them with paint shop pro because they know I can do that. They all went against me and made me feel like I'm going mad/nuts insane. One even said wash your hands I told him they are not dirty its a medical thing he did not come back. One said welcome to the twilight zone   I'm feeling really bad today about this because you can't show people sle fibro or sjs you can only try and explain it but with this you can see it but still made no deferents

I bet ya If I told them I seen a UFO they would want to know more.... NOT HAPPY JAN! http://www.flickr.com/photos/36463334@N00/

[Joe S.]

Okay, enough putting yourself down. I understand the feeling that everybody believes that it is "all in your head". It is not in your head it is real. So photo shop it in colors that your DH can see.

[anita]

Gerty,

You should not feel stupid.  You were expecting others to understand...and they just don't get IT.  Get those pictures to your doctor.  You need a physician to assess this color change.  I never knew Raynaud's cause a black color.  Please let us know what you doctor has to say.

Anita

[Gerty]

Okay, enough putting yourself down. I understand the feeling that everybody believes that it is "all in your head". It is not in your head it is real. So photo shop it in colors that your DH can see.

sorry Joe I don't understand what is a DH ? maybe we call it something diff here not sure

Anita I was going to show the dr but in 2 minds now Just not sure what to do

[Gerty]

http://www.flickr.com/photos/36463334@N00/ for any body that wants to look I have added some pics here

[Joe S.]

Gerty, I think DH = Dear Husband.

Are you sure you that you did not use photoshop? If you did you could have done a much better job. I could not really see it. I am color blind.

They look very painful. Take care of yourself. Try some hand Reflexology.

[Gerty]

Thanks Joe I don't have a DH LoL I only have a DB Dear boyfriend I only used paint shop pro to size them down to make it easy to upload cause they were very large

[DragonflyC]

Hi, Gerty.

Ouch! Your hands look like they must hurt.  How do they feel?  What I see in your pictures has me concerned.  

I agree with the others that you need to see your doctor, preferably a rheumatologist.  They have ways of diagnosing Raynaud's, as I posted in response to your previous thread (http://www.nhlbi.nih.gov/health/dci/Diseases/raynaud/ray_diagnosis.html).  I never had a doctor do more than look at my hands until my rheum examined me using nailfold capillaroscopy; I suspect my other doctors didn't know that there were tests they could do.  

Typically, Raynaud's starts at the fingertips and works its way down the hands if not dealt with fairly quickly.  Your pictures don't look exactly like that, but we know that each person's disease experiences can differ.  Whether or not you are dealing with Raynaud's, there's a problem and your doctors need to help you figure it out.

In the meantime, looking around the Raynaud's Association forum related to coping strategies might help you find some ways to keep things under control (http://www.raynauds.org/support/forums/forum/categories.cfm?catid=4&zb=4774219).  While your doctor can help you with a diagnosis, if you are dealing with Raynaud's, they'll probably want you to start with those types of coping strategies before resorting to meds.

Best wishes,
C.

[Gerty]

Hi Dragonfly

thanks again for your information I will look at them after I reply here. I first noticed it around 6 years ago now but nothing like it is now. My right hand feels colder then my left one does and its very hard to warm up esp my fingertips. I have told Dr's in the past and they say nothing at all about it but I have a new GP that seems to take me more seriously and seems to try and DX things as well. and right now I don't have a rheumy and have not needed to see one for over 10 years now since my S.L.E has been in remission. but will be taking pics to my GP to see what he says.

The joints in my fingers do have pain and have had pain again in them for I guess the past 8 months now. That only feels mild like arthritis pain in my joint esp when my BF wants a massage or me to squeeze his fingers he has OA and very painful but it hurts me to do this now but I don't tell him it hurts me Gee if he knew he would get made LoL my hands and fingers esp tips are very numb but when they get cold the tips of my fingers are very numb or more numb I have this in my feet as well

but with my feet when I stand on a hard surface or esp when taking a morning shower will go very very white soles with blue tops and under my toes and parts are red and white with the white soles of my feet there is a yellow ting to it as well and If I raise my foot of the floor as the colour starts to come back I get purple around my heal and the balls of my feet as well my toes have been very numb for about 15 or so years now with no other symptoms oh yes sometime toes get pain in the joints and burn if I squeeze the toes thanks for your reply and links

[Gerty]

  Lizzythat was so beautiful it made me  just reading it I mean gosh poor lady having to cope with that and all people can think of is them self's. thank you so much for sharing this story with us.

[gphx]

Hi Gerty, please remember in addition to the fact some are colorblind those who aren't experience a great degree of variability in color perception. Even the same person sees color in different ways. I worked in an industrial photo lab many years ago and was told how we see color changes even with the foods we eat.

That said, your photos, especially H7 and H6 look as different as day and night to me. They don't even look like the same person though obviously the hand is the same. They don't even look like the same ethnicity.

Here's the thing. The truth is all you have. If you lose that you lose you. Stick to your guns and don't worry about what other people think. Show them to the doctor and show them to doctors until you find one willing to help you, hopefully the first time. Be true to yourself first!

[Gerty]

thanks so much for your input and thoughts on this gphx it is true we all see out of a different pair of eyes but thanks for looking tho its great that you took the time Its great that everybody took there time to look thanks so much for that

[Babs659]

Hi, Gerty.  I honestly don't know if you have Reynaud's after looking at your pictures.  Mine look like the image below.  It's not my hands in the picture but an image off the web, but mine get just like this.  Good luck either way.  

http://www.riversideonline.com/source/images/image_popup/ans7_raynaudsdisease.jpg

[LizPetillo]

Keep doing 'silly' things!  *thumbs up*
Not that you need my approval but .... I approve of your methods.

[mac]

Wow, people can be so insensitive.  Maybe that is why the world is in the shape it's in?  Anyway...

Gerty, I can see the difference in your photos and am thinking these were shot over different days.  Is that correct? 

I took a look at Babs659 and have to agree my Raynauds does act more like her's but it has gotten worse over the years and does tend to cover more area and the color variation is much greater than it used to be, getting much whiter and then much bluer/almost a black as they warm up.  The feet get really cold and hard to warm as well but as I usually keep them covered have not paid attention to any color changes.

But back to your photos...my DH's hands were recently similar to your's in color and they became swollen and itchy.  Do your's itch at all?  Turns out he has eczema. (gee, an AI!!!)  so best bet is to share these photos with your doctor as the other's have said, for while it does resemble Raynauds it may indicate something completely different going on.

As someone infamous once said,   'Don't let the Bas#@$('s wear you down!'  We're here for you!
((((Gerty))))