Raynaud's People

[IowaDavid]

I think a decent amount of us have either seb derm, raynaud's, or both, in conjunction with the rosacea.
I have Raynaud's. I was wondering if anyone had heard any therapies that can be used for the Raynaud's that doesn't aggravate the rosacea (e.g., well, let's stay away from calcium channel blockers ;) ).
I was wondering what laser might do for the vasculature of my hands, but, I have no idea about this and it was really just a thought with no backing.
Post ideas if you've got them. I'd love to hear any ideas people have as the two conditions are kind of hard to control at the same time.

David

[yossarian]

I have possible raynaud's. I'd describe it as atypical. I've often wondered what Dr Nase might have to say about this condition considering his area of expertise.

[irishgenes]

I am not sure what Raynaud's is. I have noticed in the last few months that if I stick my hand into the freezer at the grocery store for just a few seconds, some of my fingers will blanch and go numb. It takes several minutes to warm them back up. Sometimes I will have to go out to the car and put them on the hot dashboard to get them pink again. It isn't painful. Is this Raynaud's?

[IowaDavid]

Might be, yes. Sounds like it. I guess you'd have to be seen by a doctor to know. I just know that my nose and hands gets purpley when even slightly cold and can go white at the finger tips and get numb. Running them under warm water usually causes my hands to go to a bright red as the blood flows back in.

David

[celticgirlie]

Hi David,

I have Raynaud's too. Maybe this link will be useful to you:

http://www.anyvitamins.com/treatment-raynauds-disease.htm

Interesting anyway.

Personally, I just try not to get too cold which I guess isn't too difficult here in California. I do know that when trying to "thaw out" the numbness that you shouldn't use hot water because you might burn yourself because you don't necessarily feel the temperature of the water. Also, I have heard that if your hands do turn white to do slow circular motions with your arms to improve the blood flow. Unfortunately, I just haven't been able to bring myself to do that in the freezer section of Pavilion's. I'm sure it would make me blush!!!!

Elizabeth

[cactus]

Hi David
I have Raynauds too. I went to a rheumatologist previously and he kept trying to put me on meds. for the Raynauds and I kept insisting that I would not take anything that would make my rosacea worse. Vasodilators are out, calcium channel blockers are out, and even topical nitroglycerin (I think that is what it is called) are out. So, he came up empty handed because he could not find a single med. that would not make rosacea/flushing worse.

The other thing is that I have had ETS and that took care of the Raynauds symptoms in my hands, but not for my feet. (For some reason it can't help the feet but I don't remember the biological reason why). Apparently some people actually have ETS solely to treat Raynauds. Now I am definitely NOT advocating ETS for anybody, but it was interesting how the minute I woke up from surgery, my hands were warm and they still are, over 6 months later. Prior to surgery, my hands were cold all the time and even looked "dehydrated" because there wasn't enough blood flow to plump up the tissues.

By the way, I discussed Raynauds with my primary care doc. too and she said she doesn't believe in meds. for it and the best remedy is just to keep your extremities warm. I think the only time you really need to worry with Raynauds is if you start getting ulcers on your extremities that won't heal or you start getting gangrene. I did see one patient with Raynauds who was in bad shape like that at my workplace, but she had Raynauds and Lupus so hers was more serious. Poor woman could hardly walk, it was so bad. Her feet were completely numb. She did not have rosacea, though.
Cactus

[celticgirlie]

As long as you do not have any auto-immune diseases associated with Raynaud's (Lupus, scleroderma etc.) it is "just you".

I like to think that exercise helps my circulation which in turn helps Raynaud's so I exercise moderately every day for 30-60 minutes.

Elizabeth

[Strive]

I have it, too.

I read once about a biofeedback treatment, where you are supposed to dress lightly, and go from a very warm room, to a very cold room. Once in the cold room, you put your hands into a bucket of warm water. This process is to be done repeatedly, with the idea that it "trains" your system not to constrict the blood vessels in your extremities when you experience cold.

It makes sense, but it seems like a bit of an endeavor.

[IowaDavid]

Yeah. As I can close my eyes and exhale and take away some superficial redness, I can also "think" a pulse of blood into my hands. The problem is that I always have to stay cool for the rosacea (at least, as of now, hoping to change that ;) ) and to get warm for the Raynaud's is just impossible.

So, there are no topicals that can help us? I might experiment with topical Nioxin on my hands. Hmmm.... Any ideas anyone? My rosacea is far worse than my Raynaud's. But it's a little strange at times when I'm out in public and my hands are purple and my forearms are Norwegian white. :O

Like when I was teaching in Korea and one of my younger students managed (much to her credit, actually), "Teacher. Face, red. Hands, red."

Anyway. I'd be open to hearing topical suggestions. Also, is laser appropriate for Raynaud's?


David

[Bob Bear]

Sorry to barge in, but is it possible to have 'degrees' or Raynauds?

Id say my hads get cold much easier than the average person. Also, as a pianist I have to spend time warming my fingers up before playing (the muscles i mean, with exercises). Yet, I dont suffer any pain, and when its warm my hands are fine.

Id say I may be leaning towards Raynaud's type symptoms. Also have very mild KP.

[celticgirlie]

Hi Bob Bear,

I'd guess that you are right with differing degrees but I don't know for sure. Are you saying your fingers never turn white?

I've had times in my life where my Raynaud's was worse. Living in a warmer climate really helps but, overall, I am usually the one with the coldest hands. I also play piano so I know all about warming up for performances. For me it's more than the muscles, because there's usually some anxiety involved so I'm colder than usual. All I know, is that it takes longer for me to warm up (and relax) than most people.

I have only had pain while in extreme cold or should I say after the cold because it's the thawing out that hurts. I also have mild KP.

[Bob Bear]

Not really, Iv never noticed my fingers turn white. There have been times when the end of my little finger feels REALLY cold, while the rest of my hand is ok.

I must clarify that this really isnt a problem for me. Its just that other people in my family are sometimes amazed that i can have freezing cold hands while being comfortably warm. Right now my hands are fine, and during the mild months I dont notice a thing. But in the winter, when I typing on the computer especially my hands get icy.

Also, my KP is very mild. I sometimes notice some redness on the back of my arms when having a hot bath. I also have the typical small bumps. This is slightly visible but nothing to write home about. I may try something on it at some point.

[celticgirlie]

Amlactin works really well on the KP. I get mine at Costco!

I think I've always had vascular problems. Even as a child running around I would be hotter than the other kids and redder in the face. Then as I got into my teens I would feel the cold more than others. My daughter is the same - something is off with our internal mechanism that controls heat and cold (I believe it is the hypothalamus).

[thursday]

it's very reassuring to read this thread. I have bad reynauds and rosacea and it seemed to me liek they must be connected but when i questioned my dermatologist she said not as they did not often co-exist! But now i know they do, which does help.

i had a very difficult winter just gone between the rosacea and the reynauds and the two together are impossible. to cap it all, i developed chilblains on the reynauds too for the first time! to anyone else similarly affected - huge sympathies. i am now having ipl which i hope will work so we can have the heating on next winter (heating being a major rosacea trigger, i kept it off but then was crippled with reynauds...)

the notes on kp were also helpful as, on looking it up, i'd say this is what my 4 year old son may have. i have also long been terribly concerned that i have given him rosacea - he is always the only red-faced child in the playground, he flushes very easily, his skin is pimply and blotchy red all the time now and he is often hot and sweaty headed. i'm sure he has inherited my lousy temperature regulation, allergic and skin problems and i feel very bad about it. i wouldn't wish rosacea on anyone and to feel i have given it to him is hard.

[rockoutloud]

I also suffer from Raynauds and Rosacea (among other things). My raynauds first started after going on beta blockers for high blood pressure, but continued after my dosage was regulated. It gets worse every Michigan winter. I can not take any cold weater, even in heavy gloves. My hands go completely grey...like death. Oh, and man do they hurt!!! Last winter my feet started to be affected, too. While walking my dog one day last winter my toes started to hurt. When I got home, my feet were just as grey as my hands. It can be very scary. Couple that with the fact that my face just screams in the heat and I'm a total mess. :(

All three of my children (daughter is the worst), get extremely red faced during and after physical activity. I feel so guilty for possibly giving them this horrid disease.

[snwbdrloco84]

I have Raynauds as well. I notice when I leave my hands exposed outside in the winter for any length of time, they turn white and numb. It is quite painful until they warm up. Also, sometimes my feet are unusually cold when I sleep even if the rest of my body is warm. Very strange indeed!!

By far the worst is when I go snowboarding in the winter. You can figure how bad this is for my rosacea b/c my mask only covers part of my face so my face get extremely red for hours and sometimes up to a day afterwards. Even with the most expensive equipment like gortex gloves, my hands get numb after a hour or so during snowboarding. The gloves don't even get wet and no part of my hard is exposed to the outside. It is almost like my body knows that its cold outside so after a short while, it my hands go numb and it is physically painful :( I didn't go last winter b/c of this reason.

Ray

[irishgenes]

OK, Raynaud's people, I have found something for us which might help! This is supposed to help with Raynaud's AND weight loss, so of course, I will rush to buy some and try it. However, no OTC supplement I have taken has ever worked for weight loss, so I don't know how much hope this offers. I found this in the May 2005 issue of Life Extension Magazine. Here is the URL for the article, and the part about Raynaud's is on page 2. I'm not sure if you can read the whole article if you don't have a membership like I do. Somebody please tell me if this link works for you.
http://www.lef.org/magazine/mag2005/may2005_cover_keto_01.htm

In case you can't read that, here is the paragraph about Raynaud's: "7-Keto may also provide benefits for people with Raynaud’s syndrome, a condition marked by cold, painful fingers and toes. Medical researchers believe that Raynaud’s represents an abnormal response to cold by blood vessels. A paper published in Medical Hypotheses suggests that 7-Keto may be helpful in preventing primary Raynaud’s attacks by increasing the basal metabolic rate. Given what is known know about 7-Keto’s ability to boost levels of thyroid hormone T3, this hypothesis seems reasonable. Further study is warranted." The dose for weight loss was 100 mg. twice a day, so I guess that is what I will use for Raynaud's, too.

Anybody have any thoughts on whether this might make rosacea worse?

[IowaDavid]

I'll add this abstract. I know I keep posting about this technology (red light) but it seems to be applied to a range of diseases (with varying degrees of efficacy/source legitimacy), but I'll post this.

I'd like to hear any thoughts anyone may have...You can build things on your own to give custom-made red light therapeutic treatment arrays.

Low level laser treatment of primary and secondary Raynaud's phenomenon. Vasa - Journal of Vascular Diseases. 2001; 30 (4): 281-284.
Al Awami M, Schillinger M, Gschwandtner M E et al.

The pilot study by Al Awami was performed to evaluate the efficacy of LLLT as a new non-drug non-invasive treatment for patients with primary and secondary Raynaud's phenomenon. Forty patients ( 29 female, 11 male, mean age 51 years) with active primary (28%) and secondary (72%) Raynaud's phenomenon received 10 sessions of LLLT distant irradiation during winter months. Assessment of subjective and objective parameters was performed at baseline, one week after the last session and three months later. Variations of subjective parameters as number of daily acute episodes and severity of discomfort were assessed by a coloured visual analogue scale. A standardised cold challenge test using computed thermography of continuous temperature recordings by means of infrared telethermography was used to assess the digital blood flow. A significant improvement was noticed clinically and thermographically after 6 weeks and 3 months, respectively


Anyway, I'll be playing around with this in the coming months. I'll report back.


David

[irishgenes]

I'll be interested in hearing about your experiences with the red light, David. Are you going to stick your fingers in front of the red light as well as your face?

I tried the 7-keto for about 3 weeks. I started with 25 mg. twice a day, so I didn't really take enough to be a fair trial for Raynaud's. I know that it is supposed to be impossible for 7-keto to convert to testosterone in the body like DHEA. However, I noticed increased oiliness of my face and scalp and quit. Another failure. (Sigh.)

[arcticlobo]

A standardised cold challenge test using computed thermography of continuous temperature recordings by means of infrared telethermography was used to assess the digital blood flow. A significant improvement was noticed clinically and thermographically after 6 weeks and 3 months, respectively


David

From the abstract, they seem to infer that blood flow to the affected areas was improved. I assume that would mean an increase in blood flow...

David, did you read the entire paper? Is this an accurate assessment?

[IowaDavid]

No...I was just searching for information last night came across that abstract--it was a page of collected abstracts or something like that. I'm going to work on getting some new arrays together and I'll report back if there are any benefits.

I'm getting really tired of having both of this diseases and only treating one. But most of the things that would help Raynaud's hurt rosacea. It'd be great if a topical treatment akin to SansRosa (assuming that pans out) would come out for topical application.

David

[rockoutloud]

I recommend trying CoQ10 to anyone who suffers with Raynaud's. I started taking the suppliment last fall. I went from not being able to go to the freezer section of my grocery store without an attack to surviving the entire Michigan winter season with only three minor attacks (all happening outside in very fridgid weather). I also recovered quicker from those attacks. CoQ10 has been like a miracle to me.

Good luck!

[Bob Bear]

I think a decent amount of us have either seb derm, raynaud's, or both, in conjunction with the rosacea.
I have Raynaud's. I was wondering if anyone had heard any therapies that can be used for the Raynaud's that doesn't aggravate the rosacea (e.g., well, let's stay away from calcium channel blockers ;) ).
I was wondering what laser might do for the vasculature of my hands, but, I have no idea about this and it was really just a thought with no backing.
Post ideas if you've got them. I'd love to hear any ideas people have as the two conditions are kind of hard to control at the same time.

David

I have mild Raynauds. By this I mean I have an attack literally once in a blue moon. I work outside in the freezing cold and rarely have a problem.

That said, the other day I was driving and it was frosty outside. My steering wheel was so cold! I then made the fatal error of smoking a cigarette. When I got out of the car, the end of my pinky was COMPLETELY white and had little sensation. This was the first time Id noticed a proper Raynauds attack.

To get my finger normal again I sat in a hot bath with my hand just resting above the water. As my body warmed I gradually submersed the hand and it was alright again with in 15mins.

Another option it seems is to use drugs. But from want Iv heard they are killer for rosaceans. Well you can imagine it cant you? Taking vasodilation med's on an empty stomach, lol, Id be claret for a month.

BB

[tkr]

hey guys, cant grape seed extract help you with raynauds because it improves circulation and is very good for rosacea to fight against capillery veins. I excercise alot and helps make my hands and feet better circulation. I am fairly thin and always had cold hands, i really avoid cold areas and try to take things that help circulation green tea i find helps too. good luck tamara

[GJ]

Sufferers may want to give ThermoMax Warm Cream a go. To my surprise it works pretty well. Not sure it would work on a harsh winter's day, though.

On a coolish evening walk recently, rubbed it into my hands, 30 mins later, bingo!, an uncommon warmth which lasted for an hour and a half or so.

A fun little experiment if nothing else.

[Twickle Purple]

GJ,

Is it scented? I've got Reynauld's and eczema so I need to be careful how I warm up or I will make my eczema flare.

--

IowaDavid,

Have you had any improvement since you've begun RLT? Have you considered a 660nm/880nm combo for the extremities?

Twickle Purple

[GJ]

There is a whiff to it, but the smell soon dissipates. No permanent fragrance. The stuff is fairly greasy though.

I always seem less inclined to flush when my peripheries are warm. One wonders what would happen if one smeared the stuff over the entirety of the body, leaving only the face untouched :?:

[Twickle Purple]

There is a whiff to it, but the smell soon dissipates. No permanent fragrance. The stuff is fairly greasy though.

I always seem less inclined to flush when my peripheries are warm. One wonders what would happen if one smeared the stuff over the entirety of the body, leaving only the face untouched :?:

I don't mind greasy, I use vaseline as a moisturizer so the feeling doesn't bother me at all. Quite the contrary, I equate it with relief.

I am an equal opportunity flusher, hot or cold, the only real criteria it seems is being awake.

Are you willing to test that scenario :shock: Ay, I could have some fun there, maybe at ESFB!! :wink:

[phlika29]

I'll add this abstract. I know I keep posting about this technology (red light) but it seems to be applied to a range of diseases (with varying degrees of efficacy/source legitimacy), but I'll post this.

I'd like to hear any thoughts anyone may have...You can build things on your own to give custom-made red light therapeutic treatment arrays.

Low level laser treatment of primary and secondary Raynaud's phenomenon. Vasa - Journal of Vascular Diseases. 2001; 30 (4): 281-284.
Al Awami M, Schillinger M, Gschwandtner M E et al.

The pilot study by Al Awami was performed to evaluate the efficacy of LLLT as a new non-drug non-invasive treatment for patients with primary and secondary Raynaud's phenomenon. Forty patients ( 29 female, 11 male, mean age 51 years) with active primary (28%) and secondary (72%) Raynaud's phenomenon received 10 sessions of LLLT distant irradiation during winter months. Assessment of subjective and objective parameters was performed at baseline, one week after the last session and three months later. Variations of subjective parameters as number of daily acute episodes and severity of discomfort were assessed by a coloured visual analogue scale. A standardised cold challenge test using computed thermography of continuous temperature recordings by means of infrared telethermography was used to assess the digital blood flow. A significant improvement was noticed clinically and thermographically after 6 weeks and 3 months, respectively


Anyway, I'll be playing around with this in the coming months. I'll report back.


David

David

This is the only thing that worries me about RLT. It sort of implies in that article that blood flow is increased in the hands which of course helps raynaulds (which I also have) but how will this affect rosacea.

I know this question is in the wrong thread but I just wondered.

Sarah

[Twickle Purple]

I know this is addressed to IowaDavid, but I'll pipe in that I have the symptom of flushing as my primary rosacea aggravator. The RLT makes me paler and calms my flushing. So it's not as simple as 'increased blood flow', there's got to be more to it. Otherwise I'd go redder instead of whiter on my face. I can't wait til there is some real science to this!

[phlika29]

TP

Thats fine to reply it was only addressed to David because it was his post. This is my only worry, that in the long term it increases blood flow.

Many thanks for all your replies to all my recent questions.

Sarah

[GJ]

It has been suggested that the Yag / Gemini type lasers work (reduce flushing) not by destroying the deep-lying feed vessels but by normalisisng their function. (I have no clue how this might work).

Might we suggest that, over time, LLLT does something similar?

The hands of a Raynaud's sufferer are cold because the vessels do not work properly. The face of a rosacean is red (largely) because the vessels have ceased to work properly.

A device that normalises vessel function, could, quite conceivably, prompt an increase in blood flow in the peripheries and a reduction in blood flow in the face.

You've gotta love a device like that!

[phlika29]

GJ

I'm liking your theory.

Sarah

[Froggirl]

It would be great if there was an answer to how to treat Raynauds without making rosacea worse.

I developed Raynaurds whilst on Beta blocker and Clonidine but it hasn't gone since i stopped them. It's just getting worse all the time too, which is weird because the weather is warming up.

My Raynaurds is becoming quite extreme, i've always had cold hands and feet but now they go white and numb for days at a time and then when they rewarm they hurt like crazy go bright red and swollen. It also happens to my nose and ears and knees. I had it on my face too when i was on clonidine but thankfully that stopped. In my knees the swelling gets so bad that it's hard to walk and when the redness goes down bruises come up.

I've been noticing that my skin on my arms has gone all blochy too, i haven't seen my doctor about it yet but it looks like the pictures of livedo vascularis on this website:

http://www.dermnetnz.org/vascular/livedo-vascularis.html

Has anyone else with rosacea and raynauds got this as well? I guess it makes sense as it's just another thing caused by blood vessels acting abnormally.

[Strive]

I posted this info a looooong time ago, but I wonder if anybody's tried it?
(I confess I have not.)


"I read once about a biofeedback treatment, where you are supposed to dress lightly, and go from a very warm room, to a very cold room. Once in the cold room, you put your hands into a bucket of warm water. This process is to be done repeatedly, with the idea that it "trains" your system not to constrict the blood vessels in your extremities when you experience cold."

[Strive]

""

[Steve95301]

Attached to this post:

http://img406.imageshack.us/img406/6259/raynaudsphenomenonid1.png