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Hi~
I have recently been diagnosed with Raynaud's but it seems the only reason they are saying that it is "Raynaud's" is b/c all of the other tests were normal and by physical appearance. Is that how everyone else was diagnosed?
Also my history is a bit different than most. I have never had Raynaud's symptoms with color change etc before January 2012. I have always been a "COLD" person but not just my feet or hands. When I get cold my lips always turn blue/purple and have all of my life but never extremeties turning colors. So in early January I noticed that my toes were numb and thought they were just cold or something so I put my slippers on...I always wear socks even to bed. I never thought to actually 'look' at my feet for at least a week. My toes just never became un-numb and then they started to hurt when I was walking. Like the carpet was rubbing on them through my sock or something. Finally, I was getting into the shower and my feet hurt when the warm water hit them. It felt like I had just ran through the snow and jumped into a hot tub. I turned the water down until it was cold on my body and it still burned my feet. That is when I began really looking at them and noticed that the numb spots were actually blueish/purple, almost bruise looking. They were like poka-dots on my toes! I noticed that the edge of the big toe was red and swollen looking. So I still didn't think too much of it. Then over the next month it began to slowly spread to the first 3 toes on each foot and the sores were appearing there as well. Sometimes even my heel would randomly go numb but had no bruise spots.? Finally I went to see my GP (my sister forced me, she is an RN) and she said she had never seen the sore/bruise spots with Raynauds and that usually an "attack" will not last for more the 24 hrs. However, I have been having this attack for almost 3 months now!!!! Is this normal? She ordered labs and sent me to a rhumetologist who also ordered more labs. All of my labs were normal other than my TSH being low. They did order T4 and T3 and they were normal so they dismissed that. I do have a kidney disease that was diagnosed in 1992 when I was 11 yrs old. It is called IgA Nephropathy and I have an online support group for that and they say that it most likely isn't related at all. That is what the rheumotologist said also.
How do you get an attack to go away after almost 3 months of CONSTANT numbness and sores?? I have never had this happen in my hands and am hoping that it never will. The Dr. did say that it could get worse and worse every winter, which upsets me b/c I snowboard Has anyone heard of Raynauds coming on this quickly and being this extreme?
S

Hello, Snowflake, and welcome to the forum.

There is no test for Raynaud's so diagnosis is typically made by history and/or clinical observation of symptoms.

From your description of the sores on your toes, it sounds as though you may have chilblains (perniosis). Chilblains can occur in people who have Raynaud's as well as those who do not. For more information on (and pictures of) chilblains, I recommend these two web sites: epodiatry.com and mayoclinic.com.

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Judith
Secondary Raynaud's with underlying systemic sclerosis

Thank you Judith for you response. After reading about the Chilblains it sounds just like Raynaud's to me but longer lasting without the "white" phase. However, the biggest difference from my symptoms and the Chilblains one's are that I do not have ANY itching at all. The photos of Chilblains showed extremely swollen toes too, I would say mine were only swollen on the side of the toe...it almost looked like an ingown toenail but it wasn't, does that make sense.? I have had ingrown toenails before, so I know how painful and red/swollen they can be! Also, my swelling wasn't as red as the photos of Chilblains, but more blue/red/purple.lol that is a lot of colors to describe the swollen part. They swelling spots were much smaller than the sores that were blue/purple. I had both, a small swollen spot on the side of some toes by the nail and then the blue/purplish sores on the tips of my toes and a little on the underside as well. Some of the 'sores' were big like the end of a pencil eraser and others were small like the tip of a pencil lead. The numbness was the most intolerable symptom for me and it seemed to go numb outward from the sores. The sores were the numbest part which was good since they didn't hurt
I forgot to mention that I am already on the highest dose of Cozaar (100mg) for my IgA. They talked about a calcium channel blocker but thought it may cause my BP to drop to low. I may have to take it though on days that I go snowboarding. I live in the Pacific Northwest so it is wet and colder here 8-9 months out of the year The strange thing is I grew up here and began snowboarding when I was 20. I even moved up to live on Mt. Hood in Oregon during the summers to ride and then moved to Breckenridge Colorado for 3 years to ride out there. The whole time I was snowboarding daily and NEVER had this problem!! Which is a good thing I guess.
After reading a lot on Raynauds though I will mention that I have been under the most emotional stress that I have had in my life lately. Maybe that was the trigger for me. When you guys have attacks how long do they last?
S

Hi,
I was diagnosed with secondary raynauds to systemic scleroderma (they think). I currently have two ulcers, both middle fingers. Worst kind of pain I've ever had, it seems to radiate to other fingers, hand and arm and kept me awake many nights. The only thing I found that helped the pain was gabapentin, which I discovered by accident. Neither of the Rhuematologists I saw had ever heard of that working, and in fact didn't seem to know much of anything to help except channel blockers for cure treatment. I am taking nifedipine, benazepril, and starting last week, viagra, 1/4 pill a day. I've tried many kinds of hand lotions, including dermatologist prescribed, and the one that has been most effective is Dermasil which I get at the dollar store. The ulcers are better, but not going completely away. I've been out on disability for 2 months and last year for 3 months with 1 infected ulcer. My job was always stressfull but now even more so as I think they are trying to get me to quit or terminate me. I've worked for the same company for 27 years, mostly as a manager. Several months ago I decided I could no longer handle being a manager and as I was assured by two upper management people that it would not affect my pay rate, I stepped down to a customer service position. A month later they cut my pay considerably (and I had not had a pay raise since July 2007). I'm going to have to return to work in a few weeks, fingers healed or not and I'm sure it won't be long before they will be ulcerated and painful once again. None of the doctors seem very confident that I will qualify for long term or permanent disability for raynauds and so for I don't have any life threatining effects from the scleroderma, but it is very difficult for me to work when I am in pain, and when I take the gabapentin, I forget to do things and I make mistakes. My job requires constant use of computer and handling industrial parts. Well, I have really rambled on here, I hope this is helpful to some and maybe generates some feedback. I'm new at this!
Raynauds in CA

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raynauds in CA

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Ray Nauds

Hey dfox~
Are the fingers with the ulcers also numb? I have never seen what a raynuads 'ulcer' looks like but I think that is what the purplish spots on my toes are.? They are completely flat, you can run your finger across the toe and spot and there is no change in how the sking feels to the person touching it....does that make sense??lol There is a change in sensation for me though. But numbness on the toes with the spots is really bothersome to me. It is getting so bad at night that I cannot sleep.
I have an accupuncture appt today and I hope that will help. I have never tried accupuncture for anything before and am a little nervous;-P But at this point I will try most anything. I sure hope you get some relief soon!
S

You have symptoms of Rheumatoid Arthritis.

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Ray Nauds

@RayNauds-are you saying this to me (snowflake) or dfox??lol I wasn't sure?
S

Snowflake
The 2 fingers I have ulcers on usually feel cold to the touch. My nails are messed up and the skin is dry and cracked, the more severe one has a real thick scab, like a little round cap on the tip. The one I had last year was badly infected, though I have not had gangrene. The nail was lifted up and my finger was swollen. I have pictures, but don't know if there is a way to post them. It was the worst pain I've ever had, sometimes burns and radiates to other fingers and hand. Pain pills and sleeping pills did not help at all, the only thing that gave me relief was gabapentin (neurotin), which I discovered by accident. If it weren't for that I think I would have gone out of my mind. Good luck with the accupuncture.

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raynauds in CA

My hands were blue so doc sent me for a blood test to confirm raynauds... And the thrilling prospect of rheumatoid arthritis which should be hitting anytime now (I'm 33). I just ignore it all and pretend it's not there... Power of the mind works wonders.