Living with Livedo Reticularis
Living with Livedo Reticularis sucks! I've learned a lot about it in my 56 years. So far, no one in the medical community seems to understand how hard it is on the people who have it.
LR has continued to be an unrecognized, common disorder and has been linked to people with Sticky Blood, Antiphospholipid Syndrome, Hughes Syndrome, Lupus, and in rare instances, people with Raynauds Syndrome. (extreme cold in the extremities) These are all autoimmune disorders that have known associations with reticularis.
I've had LR for most of my life, and it's totally
frustrating! When all your friends can wear cute clothes and you're stuck covering up your skin, it hurts. When you're standing in the check out lines at the store and the cashier asks you why your hands are so red, it makes you feel even more self conscious. You wish you could just disappear!
You wonder why your skin can't be clear and perfect like your girlfriends skin? Been there, felt that!
What causes LR?
In Sticky Blood, Antiphospholipid syndrome, and Hughes syndrome, the immune system produces antibodies that attack blood platelets in blood, causing them to become tacky and stick together. This is what causes the mottling in the skin.
Sections on This Page
Pictures of LR
What are the symptoms?
Treatments and suggestions.
Possible cure? (Free Ebook)
Blood clots may become an issue for people who have these disorders. There's an increased risk of forming deep arterial and venous clots, which can lead to heart attack or stroke. Blood thinning drugs like Coumadin or aspirin are often prescribed. In a few rare cases
, symptoms can resolve and disappear entirely.
If you have LR, be sure to fill out the Livedo Reticularis Questionnaire(s)
Livedo Reticularis Images
If your doctor
has told you that you have livedo reticularis, and you have a pattern that's similar to it but it's ONLY located on one extremity or one side of the body, and
you have pus-like sores, you may have
a condition that's known as Necrobiosis Lipoidica Diabeticorum
. Please read the referring page and have your physician look into this too!
3/7/13 - I've added a second form to the questionnaire page. Please fill out both forms then read the possible good news below.
I originally thought that my own livedo reticularis started when I was diagnosed with Epstein Barr Virus in the spring of 2004. I think it just got worse so that's when I started researching it. I realized that I've actually had it since I was very young, just not as bad. I had forgotten that doctors had a hard time finding my veins when I was a child. This of course, was because of the mottling on my skin. My hands and feet have always been cold too, for no particular reason. My hands also stay beet red. Does this sound like you?
Symptoms of Livedo Reticularis
Livedo reticularis presents itself as a red or purplish mottled looking, web or lace like venous condition, which is of course visible on the skin's surface. It is usually visible on both sides of the body, seems to prefer extremities, and sometimes it's visible on the stomach. Thankfully I've never seen it on my face or back, but some people do have it there. When I had EBV, my skin would turn bright pink/red in a hot shower. I've had other women especially, comment about the same exact thing when they filled out my questionnaire.
The condition is typically visible on my inner arms, hands (top and bottom), inner thigh's especially, and tops of my feet. When my condition got worse, there was also a light spotty red rash on the top of my feet. The rash itched, but the itch was underneath the skin and nothing really helped relieve it. The tops of my hands have also always looked flushed. Sounds pretty terrible? Well it was frustrating indeed. (Ego go away...)
Then I found out I had Epstein Barr Virus and that's why I was noticing it more. My condition got worse because I was sick. I had already been to see a Dermatologist for the many symptoms before
I knew I had Epstein Barr.
He did recognize the Livedo Reticularis
, but didn’t know what was causing it or what else was going on. (My extreme fatigue, lack of appetite, etc.) He tested me for about 20 different conditions but they all came back negative.
After spending exorbitant amounts of money for blood tests, which of course I detested having to go through or pay for, he told me I was fine according to the blood tests.
Yet I still had the symptoms and he offered me no further consultation or explanation. How often does that happen? Talk about frustrating! However, he didn't test me for Epstein Barr, but my own Nurses Practitioner knew better. She suspected it and then tested me for the virus and BANG! There it was! Epstein Barr! In full force too! It had been dormant for about 30 years and reappeared out of no where.
I took lysine to see if that would help and for a time, things did get a little better. Maybe it was a coincidence? Or maybe these two conditions go hand in hand? So many questions!
My own LR seems to have settled at a low level for right now. Many people who have this disorder, report that their condition is not visible in the mornings after waking. It is only visible several hours after waking. However, some people have reported that their LR is totally visible in the mornings first thing and only gets worse throughout the day.
This is very interesting to me, because many doctors have suggested that exercise IS KEY to helping circulation, which in turn helps the disorder. Then why for many of us, is it better in the morning when we've been resting, not exercising?
Interestingly too, that many physician's have also suggested that smoking inhibits circulation, therefore anyone with the disorder should stop smoking. I know smoking is bad but how do they know that it will help? Seems like a bold assumption if exercise does NOT make the condition better too! In fact, in some people it makes the condition worse!
Some of the treatments or suggestions below are from other sources and some of them I got from my visitors, who had a genuine concern for the condition. (Thank you for writing in and telling me your stories! Every contribution is very much appreciated! Blessings!)
If you really want to help other people who have it too, please fill out both forms
about your experience. I am genuinely concerned about this disorder and the general LACK
of attention it's getting from the medical community.
Treatments and Suggestions
If you have reticularis, it might
help to get more exercise. Livedo reticularis is a disorder that brings vessels close to the skin and makes the skin look red and blotchy. If it doesn't help relieve your symptoms, at least it will raise your endorphins and may help you feel better!
Reticularis has been discussed by Dr. Weil, whom I really admire. His mom had LR and he calls this condition 'sticky blood'. Since the blood has a hard time circulating, two things to try are vitamin E
or a daily aspirin. Both of these will help with the thinning process of the blood and both are natural choices. They are by far much healthier than using a prescription blood thinner like Coumadin.
Another natural blood thinner is black strap molasses. Also drinking cider vinegar
mixed with water everyday helps to clean toxins from your blood and may help with the symptoms.
Vitamin D is an immunity boosting vitamin! It helps the body get uninterrupted REM sleep which heals the body. Make double sure you are getting ample amounts
Gut flora is very important to livedo reticularis and needs to be re-established with fermented foods, kefir, yogurt, or colostrum.
Fish oil taken daily also thins the blood and could be a great help. If you can't take aspirin for example, fish oil is a viable alternative. Cold pressed oils are high in omega fats
and are important to LR.
Although reports of depression with this disorder are sparse, I have to assume that it would be a problem with most people who are suffering from Livedo Reticularis. I know I got really depressed when mine was full blown. I can only imagine how other people might feel if their condition is worse than mine.
Getting a full body massage can increase circulation and promote relaxation. It can also improve delivery of oxygen and nutrients to the body.
Alcohol also thins the blood, so maybe having a drink a day will help keep the condition (and the doctor) away! Dark red wine's have the most nutritional benefit and also help to warm the blood.
Ginger root, garlic, and cayenne help to 'warm' the blood, and that helps circulation. Follow manufacturers instructions for dosage, or increase it. You cannot OD on these supplements.
has been called the 'super antioxidant'. If you can't tolerate it, there are two viable alternatives. One is selenium
and the other is NAC
(N-Acetyl-L-Cysteine). These two important supplements help support the liver! It is extremely important to keep Glutathione levels high!
I did a health cleanse to see if it would help. It didn't help the appearance of livedo reticularis, but I felt better afterward. I am always looking for natural holistic ways to improve the condition. There are several types of cleanses available so you have a lot of good choices.
- Some people with autoimmune disorders [which I fully suspect livedo reticularis to be], respond well to acai berry products, which has a high ORAC (oxygen-radical absorbance capacity) value. However, so does dark chocolate. In fact, anything that has a high ORAC value helps provide more oxygen to the blood.
Please be sure to get plenty of the other essential nutrients you need too. Extra supplements are needed to combat other things such as viruses or cancer, and may be key in helping to keep your livedo reticularis to a minimum!
Information on this web site is provided for informational purposes only and is not intended as a substitute for the advice provided by your physician or other healthcare professional. You should not use the information on this web site for diagnosing or treating a health problem or disease, or prescribing any medication or other treatment.
*Update (May, 2008)
- I am getting so many new filled out forms that it's hard to imagine the people who haven't found my site yet. I want to email each and every one of you, although that seems impossible right now because there are so many. I really was thinking 'foundation'
time until I found out you had to have a minimum of $10 million to start one. HA! Maybe I should consider starting a charity to start raising money for the foundation. We need someone to help us! My own Livedo Reticularis looks about the same most days but even at it's worst it's not as bad as some of the people who have filled out the form. I want to hug all of you! Thank you for taking the time to fill this form out! I am hopeful one day it'll be recognized by the medical community.
*Update (February, 2009)
- My own livedo reticularis comes and goes. When it's warm it's always better. When it's cold, it gets worse. I've started noticing my face has red splotches especially when I get out of the shower. They disappear but are nerve racking. Thank God for makeup. There have still been no doctors to come forward to help us, but I will keep this page up as long as it takes. Someone, somehow, will notice that we need help. Also, LR seems to affect women more than men, but recently I've gotten 2 LR forms filled out by younger men who have it. One of them had Epstein Barr Virus just like me, when he noticed the LR too! Hmmmmm......
*Update (January, 2011)
- My livedo reticularis is about the same. Its been the coldest winter on record across the US. This simply doesn't fair well for anyone with LR. Not any changes for me, except this past summer, I was very sick. The informal diagnosis was simply 'colitis', which can mean a lot of different things. I am not sure if there's any association to LR. I am still frustrated with the medical community. Why don't they know more? And of course, tons of people are still filling out the questionnaire but so far, there's more questions than answers. Wished I had better news!
*Update (February, 2012)
- No new news except that recently someone contacted me from my site and said some things about LR that I simply don't know how to take. It's all very discouraging! It's been years now and no help!
*Update (November, 2015)
- My condition has seemed to take a turn for the worse. Bug bites or bee stings irritate my skin to the Nth degree and are a huge concern. I avoid them at all costs. My skin looks more mottled than it used to and I've been trying iodine and vitamin E as much of the time as possible. It is very likely that this condition will continue to take its toll on me. It makes me very sad. *Sigh*
*Update (March, 2013)
- Someone recently contacted me and gave me some new information that could potentially be the KEY to livedo reticularis. I've worked hard in the last couple of weeks compiling an ebook that could help you!
If you have had any type of vaccines or dental work, your symptoms could be directly related to mercury toxicity
This FREE ebook is specifically written for those suffering from livedo reticularis
. There is another version on my site but you'll need to download the version on this page, written just for LR! I am SO excited. This may be exactly we've been waiting for!
I hope you will also consider donating to this site in appreciation, but it's certainly not required!
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If you have questions, please ask them using the form on this page
Always consult your physician before using natural remedies, especially for anyone with preexisting conditions or anyone currently taking prescription medications. Although many efforts are made to ensure that the advice given on this site is professionally sound, the advice is not intended to replace a mutual relationship with a medical provider.
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