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lack of colour 'traditional' colour changes in Raynauds


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#1 lizzie

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Posted 24 March 2008 - 03:47 AM

Hi all, When I first saw the rheumatologist re possibility of autoimmune disease he asked me how long I had had Raynauds. I said that I didn't think I had Raynauds as, although my fingers were nearly always cold, numb and tingling and at times dusky blue at the tips, I never had any colour changes .He pointed to the loss of pulp on my fngers and the redness (dliated capillaries) at the nailfold and said that I certainly did have Raynauds. I still do not have the 'traditional colour changes , just almost permanantly cold, odd feeling hands, yet I am considered to have severe raynauds. Just wondered if anyone else has Raynauds without the colour changes

Lizzie

#2 janey

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Posted 24 March 2008 - 04:50 AM

Lizzie,
I always thought Raynaud's had at least two color changes, but with your question, I did a little research and found that not to be true. On our What is Raynaud's page, there is a link to Merck's Raynaud's Phenomenon Page. Here's what Merck has to say:

Color changes are clearly demarcated across the digit. They may be triphasic (pallor, followed by cyanosis and after warming by erythema due to reactive hyperemia), biphasic (cyanosis, erythema), or uniphasic (pallor or cyanosis only). (Pallor is white or pale, cyanosis is bluish color, and erythema is redish)

Since I've been on Tracleer, my fingers hardly ever go white, however, most of the time they are either blue or rosy red (without having gone blue first). They are ALWAYS cold no matter what the temperature. Cold hands, warm heart. :)

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#3 lizzie

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Posted 24 March 2008 - 05:22 AM

Hi Janey, thanks for the info. I take nicardipine, losartan, plus have 8 weekly to 3 monthly Iloprost infusions and my hands are still freezing about 90% of the time. I really do have difficulty in anwering the doctors questioning about how frequently I am getting raynauds attacks as, although on the rare occasion they go red when I'm really really warm, they seem to me to be almost permanantly cold, tingling and a bit blue. there is actually not much improvement come the summer as I seem to react to the slightest breeze or change in temperature. They have been considering trying viagra- but is hard to get permission to use it (we do sometimes have difficulty getting drugs in the UK!).
Lizzie

#4 summer

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Posted 24 March 2008 - 08:05 PM

Hi Lizzie,

I was diagnosed with limited/Crest Scleroderma 12 months or so ago, raynauds developed about 10 months ago. My feet are constantly cold and without socks and slippers on they go from a deathly white colour to blue but only around the toes and underneath the feet. I have never noticed them go red.

My hands though only go that deathly white colour and not always cold, weird.

I am taking Atenolol for Tachycardia which makes my circulation worse. My Cardiologist won't prescribe me anything else. I guess it is a battle for the rheumatologist and Cardiologist to sort out. Also, my toes can go numb, this is also Raynauds.

My legs also quite often go a purple colour, it is only the beginning of Autumn here in Australia and we are still having quite warm days, so I dread to see what happens when the colder weather sets in.

Take care
Celia

#5 Buttons

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Posted 24 March 2008 - 11:27 PM

Hi Lizzie

My hands certainly have the different colour changes but they are nearly always cold especially the backs of my hands when typing. I also get the tingling & a considerable amount of pain when having an attack. My feet are always cold & when I get in the shower on a morning they go deep purple. I am taking Amlodipine(doesn't help much) & have also had an Iloprost infusion but that didn't help either. They stay icy cold most of the day but sometimes at night they seem to be 'on fire & go bright red & swollen which then seems to stay like that till the morning and after having been up about an hour they go icy cold again even wit gloves etc. My general practitioner says nothing really helps when it is secondary to another disease.
I love the warm weather but found last summer I still had to wear socks & shoes rather than sandals to keep my feet warm.
I have now had Raynaud's for about 10 years and seen it just getting worse & worse.

Jensue

#6 Sheryl

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Posted 25 March 2008 - 12:01 AM

After all the years of having cold fingers and toes and never being without a pair of slippers I am now most of the time generally warm. My doctor prescribed Norvasc. It has helped tremendously with my Raynauds. I also didn't have the severe color changes. My hands were just forever cold. Occasionally they would be warm for hours at a time. Now, my whole body is generally warm. I may have to warm up a tad in front of a heater on some very cold mornings to give myself a jump start but generally I am now warm. If this helps someone else like it has helped me then that would be awesome. Sheryl
Strength and Warmth,
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#7 PrincessB

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Posted 25 March 2008 - 09:43 PM

I was about to write that I have never experienced all the colour changes, my hands are either blue or pink, but then I remembered that the first symptom I noticed was that a couple of my fingers were going white. That stage didn't last long though and it was only a short while before I had permanently cold, mostly blue hands.

I have noticed that since my stem cell transplant, my hands haven't been so bad. They are still cold, but pink most of the time indoors and I also haven't had any ulcers this winter (so far, touch wood!) which is such a blessing.
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#8 Karenlee

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Posted 26 March 2008 - 12:56 AM

Princess, that's great that your symptoms have subsided since your stem cell transplant!! Congradulations!! :)

My fingers instantly blanch completely white down almost past the second knuckle. Eventually when they warm up they turn a bluish purple. My right middle finger seems to be worse than the other fingers. I read that you should treat each case of Raynauds flare up as a "medical emergency", which I did not for years. Now, I wear gloves everywhere and keep a heating pad in bed to lay over them. I've had people in stores ask me "Oh, is it that cold out today?" when they see me shopping with gloves on and it's 60 degrees out. I know it's not their fault because they don't understand but it can get annoying sometimes.

#9 lizzie

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Posted 26 March 2008 - 08:21 AM

There does seem to be quite a variation in how people experience Raynauds. My nose is also effected-but thankfully doesn't go through the traditinal colour changes either!

Karenlee- from what you say I take it that you get cold hands even when in bed - so do I . I can be really toasty warm with tog 13 duvet and hugging a hot water bottle , but my hands (and nose) stay resolutely cold- I have even sometimes worn gloves in bed.

Princess B : its good to hear that the transplant has improved your hands and hopefully has put paid to the ulcers. I've been very lucky re the ulcers - have had a couple start, but have Iloprost immediately which has quickly healed them.

Lizzie

#10 relicmom1

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Posted 26 March 2008 - 02:31 PM

My fingers go stone white, then blue, then purple, then black. Per my rheumatologist, I' suppose :rolleyes: to wear gloves to bed every night and while shopping in the cold/frozen grocery store and even take a jacket or sweater with me at all times, no matter what the season, 'cause the indoor air conditioning can trigger an attack. In the winter, I'm suppose to keep the heat at 75 degrees inside ( I asked him if he was gonna pay my electric bill :lol: ) I am lucky a bit on that part because we have a woodstove that we use to heat the whole house. It's in the downstairs den (I live in a trilevel) and I sleep in the den. It's usually 85 degrees or higher in the den. Whenit's not cold enough for a fire, I have a whole body heat/massage pad made by homemedics that I sleep on and boy, does it feel good :) ! I have had cold hands and feet for as long as I can remember, nobody ever told me I had raynauds. When we go to bed, my hubby won't let me touch him with my feet, he says they are DEAD and the local funeral home is looking for a missing body :P (and this was YEARS before I was diagnosed) He said just touching him with my cold feet hurt him to the bone, that's how cold they get. But like I said, I've been this way since I was a kid, so go figure.....
Peace :)
Barbara aka relicmom1

#11 Margaret

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Posted 27 March 2008 - 01:06 PM

<<When we go to bed, my hubby won't let me touch him with my feet, he says they are DEAD >>

Thanks for the chuckle tonight, Barbara!!! Here I sit thinking that it must be a good, natural way of birth control!!!

Margaret

#12 Buttons

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Posted 27 March 2008 - 09:35 PM

My hands and feet are also icy cold in bed & my husband hates it when my feet touch his legs. He calls my hands 'chicken fingers' because they go so white & dead looking!
I use bed socks, heat pads etc and wear gloves in the house, and always when in the supermarket even in the summer.


Jensue

#13 Sheryl

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Posted 27 March 2008 - 10:04 PM

I guess I am the lucky one on the body warmer. My husband didn't mind me putting my feet between his legs. One, he was always hot so it helped cool him off. Two, he knew he wouldn't get quality sleep it I was shaking the bed because I was so cold. I could never go to sleep until my feet got warm to the bone. I tried all the heating pads and hot water bottles to keep my poor tooties warm. Nothing worked buy his huge thighs. Finally, I bought those fancy microwave booties and was going to start using them so as not to drive my hubby crazy in the middle of the night when I would re awaken and again have cold feet. I still haven't used them. I don't need Socks, or PJ Bottoms, or Gloves at all since I am now finally warm. Now if I could just get sleep. Ha! It is always something. I just can't be satisfied. I don't know what gets into me sometimes. I sure hope everyone else is getting quality sleep. Sheryl
Strength and Warmth,
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#14 summer

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Posted 27 March 2008 - 10:59 PM

I would just like to add that last night I experience for the first time the different colours of the change in Raynauds.

My hands were so cold that they turned that deathly white colour, I then warmed them up by putting them in a sink of warm water. After a few minutes they turned red and started to tingle, when I took them out of the water they started to turn white again with my knuckles and near my capillaries of my nails blue colour.

Many thanks
Celia