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Hi,

I was diagnosised with Raynaud's about a year or so ago.  I don't have all the 'classic symptoms' but I do have some, so I guess that is just the way my body reacts.  Anyway, when I have an attack my hands and/or feet get blotchy red/white, mostly red.  I do experience some throbbing and pain.  And they do swell.  But the worst thing I experience is an ungodly itch.  It is like an itch that I can't scratch and I look for anything to scratch with to help relieve this...which usually results in damage to my skin.  My doctor has me on calcium channel blockers for the Raynaud's and we are currently experimenting with allergy meds to help relieve the itch.  My doctor's feel that my body is having an allergic reaction to the Raynaud's.  So my question is......has anyone else experienced something like this?  Or am I crazier than I thought?!

Also, when my feet get cold they also sweat, as strange as it sounds, and since they are cold and the moisture from the sweat increases that, I sometimes have attacks that seem endless and last for hours.  My doctor suggested moisture wicking liner socks......does anyone have this problem also?  If so, do you recommend a liner sock?

At times, I feel as if I am losing my mind.  I am just trying to make sense of all of this and look for solutions to minimize my discomfort.  I totally understand what you are all going through and I wish you the best. Thank you all very much.  I appreciate any information I can get.  I wish everyone luck on their own specific issues.  I hope that in the future I can help someone out in this forum too

Thanks.
Tracy

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Treat your body as if you will live forever and your spirit as if you will die tomorrow.

Tracy,

My hands and feet have times when they itch really badly also.  I'm not sure if it would be the very same as yours.  Mine mostly itch when they have sore areas that are getting worse or when they are hot after being too cold.  But anyway I can relate to the itching like CRAZY! 

I don't get the sweating like you describe but i've read about it, so I know there are others like you!  I can see how that would really cause problems becauce the moisture would make your feet stay cold.  hmmmm

Tracy- have you been to an allergist? My primary thought at one point I was having allergies since my hands and face swell. I did a blood test for delayed food allergies- that came up with nothing helpful really- and frankly I question the worth of the test- he then had me see an allergist who after testing told me I was allergic to nothing. See an allergist and get it confirmed if you think it's an allergy- and see a rheumatologist if you haven't already done so.

Thank You!  I was beginning to feel like I was the only one who experienced this.  I'm sorry you experience something similar, though.  The itching for me usually occurs during an attack and continues until I get my hands completely warmed up and the attack ends.  It is strange.  I have scratched so much at times that I create blisters or sores, which I know is not good, but it is hard not to scratch.  If we finially figure out what helps, I'll be sure to post it.

Best wishes.

Tracy 

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Treat your body as if you will live forever and your spirit as if you will die tomorrow.

Hi,
I have been to an allergist and I have seasonal allergies and I'm allergic to bee stings.  However this allergic reaction, if that is what it is, happens only during a Raynaud's attack.  I have to go get some blood work done tomorrow....ANA, RF, & Sed rate....I will be going back to my doctors on Tuesday next week and she will be sending me and my blood work results to a rheumatologist.  So I am heading in that direction.  Thanks.  I do have very bad arthritis and degenerative joint disorder.  So I think I am heading in the right direction to get to the bottom of this.  I just was going nuts with this itch thing since I couldn't find anything about that being a symptom of Raynaud's.  I realize everybody is different and we can all react differently to the same problem.  It is just frustrating sometimes, as I am sure you all know

Thanks for your help and I wish you the best.

Tracy

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Treat your body as if you will live forever and your spirit as if you will die tomorrow.

Tracy: I've recently started having a similar experience since this past half year or so after nearly 12 years of being diagnosed with Raynauds. Specially when I am picking up or cleaning around the house, or anything which requires a lot of exercize/bending etc. My hands go nuts! They do not go through the stages they just become red and very swollen, it burns, they are hot to the touch and yes the itching is INSANE. The more I try to itch them the more it just hurts. I have not yet been able to make a connection as to why this is happening, and only during those times. I have regular attacks (though have gotten worse lately) at all other times.

Hi AngelZoo,

I know what you mean about the INSANE itch and how the scratching to relieve it hurts.  It is strange and I wish I could help you understand what is going on, but I haven't figured it out myself yet!  One thing that you have brought to my attention is that my problems seem to get worse when I work and they are not as bad when I have an attack when I'm not working.  I never paid much attention to that before, thank for bringing it to my attention.

I hope we can all get things figured out and undercontrol, until then we have this forum to share our experiences and meet and greet new friends

I hope you all have a great day and evening

Tracy

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Treat your body as if you will live forever and your spirit as if you will die tomorrow.

Im so glad to hear that other people have this itch.Ive had an extremley stressfull week.Work is manic,2 of my bitches had litters(1 a suprise),I made the decision to put my horse to sleep(that happens next week) and then I have been looking for a new one.All these stresses as flared up my Raynauds,I was doing so well,the weather has warmed up in Scotland,Yippee and I even stopped taking the nifedipin.But now it is back mildly like it used to be,but I have got this itch 24/7.What do people put on their skin to calm it down.Sorry for the moan but as I said its been a bad week. Lorna

HI I ITCH ON THE BOTTOM OF MY FEET AND SOMETIMES THE FINGERS. EVEN WITH WARM WEATHER. I USED TO THINK IT WAS DRY SKIN. NOT ANYMORE. CATHY

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Cathy

The itching is indeed intense. When absolutely unbearable, I have found over-the-counter antihistamine (Benadryl) to be somewhat helpful. When really desperate, I have at times run my hands under cold water (yes, that seems odd) because it seems to be the warming-up period after prolonged cold exposure that brings it on. I definitely use rubber gloves when washing dishes also, or handling logs to put into a fireplace, because I found that the sudden change from cold hands to a hot contact can also bring the itching on. I do find the itching to be the most annoying aspect; fortunately for me it is not as freqent as the other symptoms!

bluefingers,

I thought it was interesting that the itching you get happens mostly when your hands are warming up and that cooling them down can bring a bit of relief.  Thats the same with me!  It doesn't make sense to me.  I guess my theory is that damage from the raynauds spasms cause a bit of inflammation which causes the heat, itching and redness...and cooling them down calms that a bit.  Mine also itch when I am getting a sore or a sore is getting worse. 

Lorna,
Please keep in mind that different things work for some people and not another. I have no medical back-up to place on this suggestion, but I have found that if an itch becomes unbearable during a flare up, especially on my feet, that Emu oil actually helps. I know it sounds corny, like a snake oil remedy, but over the years those of us who get desperate try everything. I have a female friend who has Raynaud's on her feet, and suffers terribly with itching on her feet and legs when she experiences a flare up. She suggested Emu oil to me and I was surprisingly pleased at the almost instant relief I found. Told me she had been using it for several years, so I figured what the heck. It really did help. And use it on your legs up over your entire calf area. It is not expensive, does not stain and it has worked for me. I have found that scratching the itching causes pain instead of actual relief. Seems to make it worse in the long run. Really works well as a moisturizer as well. Can't promise what it will do for you, but I think it is definitely worth the try. I found it in a salon and it is not expensive. Hope it helps. Let me know if you find that it works for you. Good luck.

Robert

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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.

Hello Everyone,

It's been awhile since my last post but I have been 'listening in' on some of what has been going on.  For the most part I have been ok, not to many attacks  I've been to a few doctors and was diagnosed with pheriperal neuropathy (because of severe arthritis) and Restless Leg Syndrome.  I don't know if there is any connection with those and the Raynaud's since Raynaud's is vascular??  I have some more testing to go through, but so far I am currently on a combination of meds that have helped me a lot with my other health problems.   About a week ago I had started to sleep through the night!  It was the beginning of the first full nights sleep I had gotten in years!  So now my doctors can concentrate on my Raynaud's issues.

With that brief summary out of the way, ha, I would like to add that my itch starts and ends my Raynaud's attacks and I too have gotten relief by running my hands under luke warm to cool water.  I found that for me trying to bring my hands to the room temp seems to work best.  If I do use cool or cold water, I try to time it just right so that I don't worsen the attack by cooling my hands to much.  Also, with much experimenting (and please check with your doctor first) I have found that when I feel the itch start, I take the antihistamine Chlorpheniramine Maleate (brand name Clor-trimeton).  For me it works better and faster than Benadryl.  Actually Benadryl didn't do anything for me and my itchy hands and feet.  But the Clor-trimeton did, and usually within 10 to 15 minutes of the onset.  It is strange but I can tell that I am starting to have a Raynaud's attack because my fingers start to itch, however my toes mostly only itch after when my hands and feet start to warm.

I have just recently found out that I have Raynaud's attacks during times of extreme heat also, that is fairly new to me.  In the past couple of days our weather has been in the 90's here in western NY and I had an attack yesterday while spending several hours in the warm weather.  So now I am wondering if maybe the reason my attacks lasted so long this past winter becasue I warmed myself up to much during a 'cold' attack??  I have found a happy medium, my body is happiest when the temps are between 72 to 80 degrees.....anything over or under seems to spark an attack.  

Anyway, I hope everyone is doing ok and that everyone is having as few attacks as possible

Be Well.

Tracy   

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Treat your body as if you will live forever and your spirit as if you will die tomorrow.

Hi.  I just recently joined.  I have had Raynauds from the birth control pill since 1985.  When I stopped taking it after one year it got much better.  I used to stand out in the cold and have my face, legs and hands turn white and red and actually feel hot and itchy.  Since that time, the Raynauds has not gotten worse but I always have my skin turning white, clammy, red and itchy.  My skin is always clammy when it reacts.  I live in FL so it is easier to control the environment I am in except for air conditioning.
My skin always itches from the cold or if it too hot.  I really do not know what to do to control the itching but I try to put my hands under warm water.  I am sorry I could not be more helpful.



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Regards,
Phyllis

Stick Lady,

I'm trying to get ahold of you....your email address didn't work for me. I also get what appears to be Raynaud's attacks from extreme heat, cold, and stress. I'm wondering if you could reply to this and let me know about yours? I'm very stressed about this, because no one seems to think you can get a Raynaud's attack from extreme heat and so far, there's nothing much online I can find about it being triggered by heat. Do you have any info or links to back this up? I get attacks everyday, during the day because of stress and sometimes cold (I just get the white from cold) and at night, in the shower...I get very dark blue attacks. (I take VERY hot showers). It is consistantly every night, without fail. Please let me know more. I would really appreciate it, and it would really put my mind at ease!

Edited: 08/29/2007 at 04:04 PM by eddieteddie

Just a little clarification, a Raynaud's attack is not brought on by warmth. The disorder erythromelalgia is. You can be affected by both disorders at the same time though.

In Raynaud's, the blood vessels constrict or narrow and the flow of blood is decreased mostly to our extremeties, and other external attachments (i.e., ears, nose, nipples, ect.) when this process is reversed, meaning you warm up, blood is allowed to flow freely and it does so, initially, with a force. The tissues and every other structure within that area is rewarmed and stimulated--nerve endings included--which can give you that itching sensation, which is actually a very, very, very mild pain being felt--your nerve endings being stimulated.

I know it is hard to wait for your doctor's appointment to discuss this, but honestly, that is your best bet short of doing your own research on the subjects.

I'm sorry that I can't be of more assistance to you with this.

Karen-

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I will persevere & live strong.

Secondary Raynaud's to Ehlers-Danlos Syndrome, Hashimoto's thyroiditis.

Good suggestion Keith! Glad you pointed that out!

Karen-

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I will persevere & live strong.

Secondary Raynaud's to Ehlers-Danlos Syndrome, Hashimoto's thyroiditis.

Karen,
I understand that you don't want to discuss my situation...I know that you aren't a doctor. My doctor hasn't been a great help (to put it very mildly). I'm just looking to try to figure it out as much as I can myself...maybe help him, or at the very least, have info to take to a new doctor. Talking to others who are having similar "happenings" helps me feel not quite so alone, and helps with info. I've found two people on this site who claim the same weird reactions as I have. Thank you for the advise to seek medical help. I have done that, and will continue to do so, but also, I prefer to continue talking to people with similar occurances....I've been handling this for a year, mostly alone, and it is nice to talk to people with similar "symptoms" who have supportive advice. I have a reaction to heat, that looks exactly like Raynaud's as well as a reaction to cold and stress that looks exactly like Raynaud's. I have read the description of Erythromelalgia and it does not at all apply to me:

Symptoms
If you have been diagnosed with EM, symptoms may include hands or feet that are very red to purple in color, are perhaps swollen, hot to the touch, and have burning pain.

I have non of those things. I know you feel I should not talk about my symptoms, until I see a doctor. I understand why you say this. Please understand my position also. I need support and productive ideas of how to deal with "whatever" is happening.

Thank you, though for your responses. I understand where you are coming from and appreciate your trying to help.

I'm so glad I found someone else who is having this same very strange occurance! Right now I'm freezing, and can't really move my hands, so please forgive mispellings. I guess I'll have to cool the showers off...it stinks, though, because I REALLY love hot showers!! What does your reaction look like? Is it the same weird bluish color? I'd really like to hear more about your reaction...it's great to hear that I'm not alone. Sorry that you have it, though!

EddieTeddie,

I'm sorry that you felt my post was written with the intent to silence you. If that is what you feel it conveyed than I do apologize, for this couldn't be farther from the truth. I merely gave some clarification to your confusion about symptoms and how they relate to the disorder of Raynaud's phenomenon.

Prior to my post in question, I did read all of your previous posts, as I did those of other member's responses to you and honestly, you have repeatedly contradicted yourself. And I can, most certainly, relate to your position and frustration in seeking a connection to other people that share your same or similar symptoms, as all of us on this forum can. You are certainly not alone in being brushed aside or having had your symptoms dismissed by the medical community. I was offering you "support" and I thought I was being "productive" in that support by bringing to your attention another disorder that shares the symptoms that you were describing. In fact, another member posted a similar explanation as well. Finally, a third member, who has Raynaud's and also erythromelalgia gave you some idea for relief with adjusting the temperature of the water regarding your showers, which relates to the latter condition.

When I suggested "...doing your own research on the subjects", it was meant as a means of raising your own awareness about how symptoms will differ between individuals as well as, how individuals will respond to various modalities. And also, how one author's definition and description of a disorder will differ from that of another, although both are found to be correct. Arming yourself with knowledge, in this way, will give you a better chance of having a more productive visit with your doctor(s) in identifying "whatever" is afflicting you.

I applaud your determination in wanting to talk to others with similar "happenings" and I regret it deeply if you felt that my post came across as inferring the opposite. Again, I apologize to you for any wording that might have come across as seeming I was not offering you "supportive advice".

I would like to respond to one statement of yours by saying that you are not alone and you will never be alone, because this forum exists and you have found us.

Karen-

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I will persevere & live strong.

Secondary Raynaud's to Ehlers-Danlos Syndrome, Hashimoto's thyroiditis.