@aimeenc - I've not had a wound care specialist and only heard the term when I joined this discussion group (I live in a relatively small city in MT). The primary care doc for this condition is a dermatologist. I've also been seen a number of times by 3 different rheumatologists, my family doc (pcp), 2 other dermatologists and a vascular surgeon for this condition. The vascular surgeon was certain my problem was leaky veins and in 2012 he used a laser to destroy the greater saphenous vein between my groin and ankle (They used to physically strip the vein out, but now most use a laser to essentially cook it in place). This made absolutely no difference in LV ulcerations in the long run. My wound care is guided by my dermatologist and my wife who is very tuned in to this subject. The derm. doc is very good at consulting with and referring me to other specialists. But it is essentially left to my wife and I to determine the best wound dressing techniques to use at any given time.
@prairiesmoke - Sounds like you've spent some time in a bio-science research lab. Your point is well taken. Even though LV wounds may heal, as long as the underlying disease is still present, more breakouts are almost inevitable. We know a fair amount about the mechanism of LV. Now if we only knew more about what triggers an episode, we may be able to do something about the long term effects of our disease.
Some of the wound care techniques you describe may seem a bit un-scientific, but I remember reading a study by some medical researchers, that concluded that behind many successful home remedies, native cures, poultices, etc, there often is a solid, but unrecognized scientific basis.
Thanks for sharing. I agree with you that more LV research should be conducted at the molecular level if we are ever to fully understand this disease that affects us all.
I know exactly what you're going through. When I read your post I said to myself "oh my, that's me in a nutshell right there". First off, I'm very happy you found this post, you will be able to learn a great deal from everyone here. @gonefishinmt is a great man who's been through a lot as well and has some amazing insights as I do.
To answer your questions in sequence:
1) Factor V Leiden & Livedoid Vasculopathy:
It's becoming more and more known that these two conditions go hand in hand. Around when I was 23, I learned I had FVL. About 10 years ago, my 1st wound opened up, at first they called is Rheumatoid Vasculitis and my Dermatologist then discovered it was in fact Livedoid Vasculopathy.
You probably "learned" that they fight each other because of the posts I make. They do fight each other and here's why. FVL - clots bruise your arteries. The clot stretches the artery while blood is trying to pass through. LV inflames the arteries even more, allow seepage of blood to escape and pool in different areas of your body (most commonly within the outer skin layers of your legs). Now consider this, we are lifer's on blood thinners correct? So thinning your blood only fuels LV to increase the blood loss within the arteries. Hence the battle continues. When I try to treat FVL, my LV ulcers get worse, when I try to battle LV, my clotting factors increase. Thus creating a never ending cycle.
Right now I'm doing my own trials on different thinners to see which ones react better with LV. I've been on most blood thinners and each one reacts differently. The key for me is to be able to find the right balance between the two to allow my wounds to heal (open now for almost 10 years)
2) Pain management:
This is KEY for your mental health. Please take my recommendations to your doctor immediately. There's always different reactions for different people, but after years of experimenting with the right combination, here's what works for the exact same symptoms your mentioned above.
Opiates (optional):
Try different types if the perks aren't enough (I stay away due to mind fog)
Pain Spikes: Tizanidine 4mg / x2 daily
These will take away the nerve ending spikes that you get (key***)
Moods: Antidepressants
If you find your moods are always up/down, it's probably due to the pain. Ask for options
Stomach Ulcers: Pantoprazole 40mg / x2 daily
Prevents heartburn and stomach ulcers from all the meds (key***)
I've been in pain most of my life and people are amazed when they find out years later on how much pain i'm always in. I rarely show it and it's because of years of experimenting getting the right combination of medications that help with FVL & LV.
------- End pain management -------
3) LV rash/network of blue dark veins:
That's exactly how it all started for me. I had a really dark reddish/purple spot at my lower ankle for over a year until it completely tore off, only then did I seek help (my pride was my downfall). If you have these signs, go see a Dermatologist immediately and bring the fact sheets I posted earlier. I wish there was a discussion like this 10 years ago, I would of been able to change my diet to suit my health a lot better, and I would of started a lower-body exercise program to increase blood flow and strengthen my muscles.
4) I am on disability:
Again, it took me a long time to accept my new life and the limitations I have. But that doesn't mean you cannot work, it just means we need to work at a slower pace, and an environment that better suits our illnesses. At the moment I volunteer from home. I'm the Patient Ambassador for Thrombosis Canada and also help in many other avenues (ie. Mayo Clinic Connect). Being on disability isn't the end, instead it's the beginning to asking for help. Through income support, medication support and other support programs, you can start to get access to resources you never had before. This process takes a lot of time and effort, I recommend you start asap just because of the amount of time it takes. Once approved, you have options and don't have to stay solely dependent on disability alone, you can then work at your own pace.
5) What doctor?
Dermatologist first. The dermatologist will be the one to make the call for LV (usually). They can also set you on the right path if you start to show skin irritations. There are some creams and what not that actually harm your chances, or otherwise deteriorate your skin faster than normal (i.e. some topical ointments thin the skin layers). The key is to also ask about the "right" diet appropriate for you. I was told a high-protein diet is the key for my body to increase blood flow and help to health wounds. Less processed food (given for anyone) and a boost of vitamins (Which I buy high-end water drinks with added vitamins).
2nd a vascular surgeon is necessary also. They can help to manage your FVL, while also watching out for different signs and symptoms related to LV. Avoid having only one specialists making all the decisions. My dermatologist manages my wounds, while my vascular specialist maintains my blood flow, while my regular MD records and watches all specialists. Your network need to work together.
There's a 3rd possibility also, you may have "PTS" Post Thrombotic Syndrome which is common with people who have FVL. PTS symptoms include chronic leg pain, swelling, redness, and ulcers (sores). Talk to a "thrombo" specialist, specifically a Hematologist who's familiar with PTS.
6) Compression Stockings:
Also, if you don't already. I would start looking into compression stockings. These are key to maintain proper blood flow for FVL and preventing LV from flaring up further. My legs have been wrapped with compression bandages for many many years now. When I removed them (to change them), my legs start to swell right away cause a lot of pain. Find the right "fit" for you. Start with light compression and work your way up as needed.
I hope this helps you. I know how scary this might all be, I've been through it myself. You haven't found out if you have LV yet, but take it from me, FVL is a pre-cursor to LV. I'm finding more and more studies that support that fact. Don't wait to see your regular MD, make notes of everything you've learned here and ask the right questions, push to go see these specialists.
Glad to see you're back on the post and congratulations on being named Patient Ambassador for Thrombosis Canada - a well deserved honor! You are a wonderful resource for all of us on this post and I for one am grateful for your shared wealth of information.
@gonefishinmt Thank you so much Gary. I've always said, if you're going to suffer anyways, might as well try to help others to prevent them from going down the same path.
I've also truly appreciated your posts as well. They lit a fire under me to start sharing more and learning more through your shoes.
I know exactly what you're going through. When I read your post I said to myself "oh my, that's me in a nutshell right there". First off, I'm very happy you found this post, you will be able to learn a great deal from everyone here. @gonefishinmt is a great man who's been through a lot as well and has some amazing insights as I do.
To answer your questions in sequence:
1) Factor V Leiden & Livedoid Vasculopathy:
It's becoming more and more known that these two conditions go hand in hand. Around when I was 23, I learned I had FVL. About 10 years ago, my 1st wound opened up, at first they called is Rheumatoid Vasculitis and my Dermatologist then discovered it was in fact Livedoid Vasculopathy.
You probably "learned" that they fight each other because of the posts I make. They do fight each other and here's why. FVL - clots bruise your arteries. The clot stretches the artery while blood is trying to pass through. LV inflames the arteries even more, allow seepage of blood to escape and pool in different areas of your body (most commonly within the outer skin layers of your legs). Now consider this, we are lifer's on blood thinners correct? So thinning your blood only fuels LV to increase the blood loss within the arteries. Hence the battle continues. When I try to treat FVL, my LV ulcers get worse, when I try to battle LV, my clotting factors increase. Thus creating a never ending cycle.
Right now I'm doing my own trials on different thinners to see which ones react better with LV. I've been on most blood thinners and each one reacts differently. The key for me is to be able to find the right balance between the two to allow my wounds to heal (open now for almost 10 years)
2) Pain management:
This is KEY for your mental health. Please take my recommendations to your doctor immediately. There's always different reactions for different people, but after years of experimenting with the right combination, here's what works for the exact same symptoms your mentioned above.
Opiates (optional):
Try different types if the perks aren't enough (I stay away due to mind fog)
Pain Spikes: Tizanidine 4mg / x2 daily
These will take away the nerve ending spikes that you get (key***)
Moods: Antidepressants
If you find your moods are always up/down, it's probably due to the pain. Ask for options
Stomach Ulcers: Pantoprazole 40mg / x2 daily
Prevents heartburn and stomach ulcers from all the meds (key***)
I've been in pain most of my life and people are amazed when they find out years later on how much pain i'm always in. I rarely show it and it's because of years of experimenting getting the right combination of medications that help with FVL & LV.
------- End pain management -------
3) LV rash/network of blue dark veins:
That's exactly how it all started for me. I had a really dark reddish/purple spot at my lower ankle for over a year until it completely tore off, only then did I seek help (my pride was my downfall). If you have these signs, go see a Dermatologist immediately and bring the fact sheets I posted earlier. I wish there was a discussion like this 10 years ago, I would of been able to change my diet to suit my health a lot better, and I would of started a lower-body exercise program to increase blood flow and strengthen my muscles.
4) I am on disability:
Again, it took me a long time to accept my new life and the limitations I have. But that doesn't mean you cannot work, it just means we need to work at a slower pace, and an environment that better suits our illnesses. At the moment I volunteer from home. I'm the Patient Ambassador for Thrombosis Canada and also help in many other avenues (ie. Mayo Clinic Connect). Being on disability isn't the end, instead it's the beginning to asking for help. Through income support, medication support and other support programs, you can start to get access to resources you never had before. This process takes a lot of time and effort, I recommend you start asap just because of the amount of time it takes. Once approved, you have options and don't have to stay solely dependent on disability alone, you can then work at your own pace.
5) What doctor?
Dermatologist first. The dermatologist will be the one to make the call for LV (usually). They can also set you on the right path if you start to show skin irritations. There are some creams and what not that actually harm your chances, or otherwise deteriorate your skin faster than normal (i.e. some topical ointments thin the skin layers). The key is to also ask about the "right" diet appropriate for you. I was told a high-protein diet is the key for my body to increase blood flow and help to health wounds. Less processed food (given for anyone) and a boost of vitamins (Which I buy high-end water drinks with added vitamins).
2nd a vascular surgeon is necessary also. They can help to manage your FVL, while also watching out for different signs and symptoms related to LV. Avoid having only one specialists making all the decisions. My dermatologist manages my wounds, while my vascular specialist maintains my blood flow, while my regular MD records and watches all specialists. Your network need to work together.
There's a 3rd possibility also, you may have "PTS" Post Thrombotic Syndrome which is common with people who have FVL. PTS symptoms include chronic leg pain, swelling, redness, and ulcers (sores). Talk to a "thrombo" specialist, specifically a Hematologist who's familiar with PTS.
6) Compression Stockings:
Also, if you don't already. I would start looking into compression stockings. These are key to maintain proper blood flow for FVL and preventing LV from flaring up further. My legs have been wrapped with compression bandages for many many years now. When I removed them (to change them), my legs start to swell right away cause a lot of pain. Find the right "fit" for you. Start with light compression and work your way up as needed.
I hope this helps you. I know how scary this might all be, I've been through it myself. You haven't found out if you have LV yet, but take it from me, FVL is a pre-cursor to LV. I'm finding more and more studies that support that fact. Don't wait to see your regular MD, make notes of everything you've learned here and ask the right questions, push to go see these specialists.
Sorry it's taken me a few days to think over your advice but I think I'm ready to ask a second round of questions of you:
1.) You recommended I read the 3-page attachment you posted previously on LV treatments. On page 2, column 2, it mentions individuals who have LV that were found to also have anticoagulant (sp?) were helped by taking coumadin, a blood thinner but in your post above, you mention a disorder like Factor V Leiden works against LV, so I guess I'm still confused which way it is.
2.) Right now, I have the livedo reticulitis pattern of blue weblike veins (below the skin) on the back of my left calf. Did your LV start out with this type of vein pattern on the back of your leg? If so, how much time passed before you started experiencing ulcers on your leg?
3.) I read LV occurs bilaterally in both legs. Do you have LV on both legs? If LV is connected to the Factor V Leiden I have and the extensive damage done by the massive DVT I had in 2002 (top of stomach to left ankle solid), then could I expect my right leg may be safe from LV?
4.) Somewhere I read that you aren't fond of coumadin and its side effects. I've been on coumadin since 2002 at a pretty high dose of 10 mg/day. Recently I learned about eloquis but my general md is hesitant to let me switch. What are the long-term side effects of coumadin?
5.) I live in Illinois, across the river from St. Louis, where there are several great teaching hospitals. I am surprised, however, that the interventional radiologist, who has treated me I developed my DVT in 2002 and who monitors the stent in my stomach due to May Thurner Syndrome, didn't recognize or seem to know anything about LV. Do you possibly have any names for a dermatologist or a vascular doctor in my area who might be familiar with LV?
6.) You mention I should go see a dermatologist now. Is there a way for a doctor to diagnose if it's LV or not without an ulcer to biopsy?
7.) I am wearing my compression stockings during the day religiously and I sleep with my legs elevated, but I still have terrible, achy leg cramps in the affected leg all night, every night. I get some help from sleeping with a heating pad. Did the LV cause you pain before the ulcers presented themselves?
Again, thank you, for your valuable insight and wonderful, positive outlook.
@aimeenc - I've not had a wound care specialist and only heard the term when I joined this discussion group (I live in a relatively small city in MT). The primary care doc for this condition is a dermatologist. I've also been seen a number of times by 3 different rheumatologists, my family doc (pcp), 2 other dermatologists and a vascular surgeon for this condition. The vascular surgeon was certain my problem was leaky veins and in 2012 he used a laser to destroy the greater saphenous vein between my groin and ankle (They used to physically strip the vein out, but now most use a laser to essentially cook it in place). This made absolutely no difference in LV ulcerations in the long run. My wound care is guided by my dermatologist and my wife who is very tuned in to this subject. The derm. doc is very good at consulting with and referring me to other specialists. But it is essentially left to my wife and I to determine the best wound dressing techniques to use at any given time.
As I read through the emails I get the impression that there is a great<br />
difference between time of onset of LV (earlier in life vs later in life)<br />
and also the severity of LV (small lesions versus large ones). According<br />
to Mayo notes aproximately 20% of people with LV have Leiden Factor V for<br />
blood clotting. I know 2 other people with Factor 5, one of my daughters<br />
and a distant cousin and neither of them appear to have LV. My LV diidn't<br />
appear until after 40 and was agrivated by a wound to my ankle, as was my<br />
grandmother's LV. Our LV was localized to the ankle area. Many on this<br />
list have severe LV that covers large areas of skin. I think what we are<br />
seeing is a genetic trait with partial dominance and/or incomplete<br />
penatrance. How many of us have close relatives with Factor 5? How many of<br />
us had injuries to our legs, ankles or feet PRIOR to getting LV?<br />
<br />
My younger daughter does not have Factor 5, but to be on birth control<br />
pills was told she needed to be checked for Factor 5, since both me sister<br />
and I have Factor 5. Factor 5 is inherited, most probably from my dad, who<br />
seemed to have blood that clotted very quickly. When my younger daughter<br />
was born I had at least a dozen surface clots on each thigh, I had the vein<br />
removed in two surgeries but it did nothing to stop the LV ulcer. A<br />
vascular surgeon did surgery and then tried injecting the veins in ankle to<br />
stop LV. That didn't work,only made the whole area turn brown and small<br />
pinhead size blood clots appeared. That was about 15 years ago. A young PA<br />
in the dermatology clinic figured out that I had LV about 10 years ago.<br />
Wound care since then has been not all that helpful. They used an<br />
experimental sonicating treatment to help with wound healing, but the<br />
machine operated at 10 times the speed needed for optimal healing and<br />
destroyed the tissue I did have that was healing. They also kept putting<br />
nonstick pads on the ulcer that had latex in them. I am allergic to latex.<br />
If you have latex allergies please watch for warnings on Telfa and other<br />
dressings!<br />
<br />
My LV starts as small blood clots that then rupture creating a hole in<br />
skin that leads to more tiny clots that then rupture and make more holes<br />
and pretty soon I have an ulcer. I also get tiny clots on soles of my feet,<br />
then the skin peels like it would for a regular blood blister. If I use a<br />
cortizone cream on the area around the ulcer to reduce the inflamation, my<br />
skin thins and I get more and more of the tiny clots and that make the<br />
ulcer larger. Please be careful when using cortizone or its derivatives.<br />
<br />
My doctor has me on 2 regular aspirin a day for blood thinning, and I eat<br />
dark chocolate to help keep veins flexible (best excuse I ever found for my<br />
chocolate cravings). I have taken warfarin for clotting and also the<br />
injectable blood thinner, they didn't seem to affect the LV either way.<br />
<br />
This has gotten pretty long, but I have tried to outline what I have found<br />
to work and not to work (mostly what didn't work). It really helps if you<br />
have a doctor who listens to you, takes you seriously and isn't afraid to<br />
think OUTSIDE the box.<br />
<br />
Sheila<br />
<br />
Please excuse the long delay, I've been swamped lately. To respond to your 2nd set of questions, I'll do my best, but remember that these answers are from my own experiences and should only help to guide you to ask the right questions with your specialists.
1) The reason why I mention FactorV fights LV is due to the fact that FVL is a clotting disorder that needs anticoagulants to ensure clots aren't being formed all the time. Now in the pages I attached, Low-Molecular Weight Heparin is administered to help LV. You don't have to have a clotting disorder to receive the injections. I was on the injections for 2 years straight. In the end, it didn't seem to help my ulcers and got increasingly harder and harder to find areas on my stomach and thighs to inject myself. This in itself doesn't go against LV, but when your arteries are battered and bruised from clots like mine are, it gets increasingly difficult to get the needed oxygen from the blood to the wounds themselves. Oxygen = healing.
Bad blood flow and terrible blood pressure works against trying to heal the wounds. It's because of my lack of oxygen to the wounds that I was given the opportunity to go into a Hyperbaric Chamber for two hours a day, for six weeks straight. Having pure oxygen pumped into my body was thought to potentially help heal my wounds (also found on the LV pages I uploaded), but again, nothing happened to help heal my wounds.
See one condition gives you clots and damages your arteries. The other condition swells your arteries and increases chances of blood seeping to the skin (eventually creating chronic ulcerative wounds). While it would seem that the two would work together, in my experience they don't. Once you have open wounds, they are constantly fighting off infections due to the lack of nutrients needed from oxygen in the blood. Your immune system is constantly in overdrive. Unfortunately, I go on and off antibiotics more than I would like just to ensure my wounds don't become so infected that they have to operate and/or potentially amputate.
I hope this clears the air a little. It's a frightening thought I agree, but not all cases are the same with LV.
2) For me it started with a deep bluish/purple spot near my outer ankle on my left leg. I can't remember if it started with vein like structures since I didn't pay too much attention to it until it for over a year until started getting really soft to the touch and extremely sore. Once the skin layers underneath the top layer started breaking down, it felt almost like I could swish my skin around under the outer layer of skin. I always thought it was just a side effect of the blood thinners, boy was I wrong and so were my specialists who also thought the same thing.
Again, I would see a dermatologist and have a professional look at the area of skin. If there's any small micro-wounds already present, they may take a biopsy which is highly recommended.
3) Yes, both my legs are affected, but a great deal differently. Since most of my clots have affected my left leg, I have 3x more chronic open wounds present. The right leg has two smaller wounds, one of which closed up since it was directly tied into an artery. Over time, both legs got really bad, but it took years before my right leg showed the effects. That was one of the hardest points in all of this, I always had one good leg and that changed as well.
Again, FVL & LV affects everyone differently. Please don't take my experience as how it will happen (if it does at all) in your situation.
4) I have a love/hate relationship with Coumadin. I was on it for 12 years before I was able to switch to a different type of anticoagulant. Coumadin always made my arteries hurt, made me feel weakened and I would bruise a lot easier. And let's not forget, the need to do your INR constantly, which for me, would never seem to normalize. I was constantly worried about falling, or having accidents that could make me bleed internally.
I recently asked to the switched back from Xarelto onto Coumadin to experiment and see if my wounds would change at all. So far (1.5 months now), no positive changes, only negative changes (which might be due to infections recently, it's hard to say).
5) Contact the National Blood Clot Alliance (stoptheclot.org), I'm sure they have a list of hematologist in your area. Or alternatively, click the "make an appointment" button up top on the right hand side of this website. Most specialists don't know about LV because it's extremely rare. Only my dermatologist (who has 100's of patients weekly) knew about LV, but he even had to look it up since throughout his career, he had only dealt with one other patient with LV.
6) That's a good question. I'm not sure at all if they can diagnose LV without the progressive symptoms. Again, my specialists originally thought I had Rheumatoid Vasculitis, which was incorrect, but LV shows as being similar to other Vasculitis type conditions which makes it even harder to diagnose.
7) I've had leg pain for 20 years now Marlene. Having survived multiple clots in both legs, my arteries, muscle structures and nerves are never going to be the same. Clots force the walls of your arteries to expand, thus forcing other events to happen in the affected areas. Once you've had a clot, you never really recover 100%, there will always be damaged tissue and usually calcified clot remains.
I would speak to your doctor about the possibility of getting different pressure grade stockings. I used to wear compression stockings 24/7, only removing them to shower and/or to let my legs breathe from time to time. Unfortunately now, even if my wounds were to heal, there's still extensive damage and I would have to wear compression stockings for the rest of my life, or otherwise suffer through the swelling and the pain.
I'm sure you'll have more questions which is good. Write everything down, speak to your doctors, get advice from multiple specialists since therapies come from different departments. (ie. FVL = Hematologists, etc & Wound Care / LV = Dermatologists, etc.) Each condition needs to be treated from the appropriate specialist. Keep your own copy of your records so you can bring them with you whenever you see anyone.
Make sure to keep an accurate log of your medications, the effects or lack thereof. Keeping track over the years has helped me to be more informed about the decisions to try new therapies or not.
For the last five months i suffer from livedoid vasculopathy.I am on dipyridamole and acetylsalicylic acid treatment with no great improvement.Does anybody from the group know about any potential healing effects of electromagnetic fields?
Hi @patientrea. Welcome to Connect! I've moved your post over to this thread about treatment options for LV because we've had some good discussion here that I thought you would benefit from. I encourage you to read back through these posts. I'm also tagging, @mlemieux, @gonefishinmt and @marlene64 in hopes that they will welcome you and possibly be able to provide some insight into your question.
Hi @patientrea. Welcome to Connect! I've moved your post over to this thread about treatment options for LV because we've had some good discussion here that I thought you would benefit from. I encourage you to read back through these posts. I'm also tagging, @mlemieux, @gonefishinmt and @marlene64 in hopes that they will welcome you and possibly be able to provide some insight into your question.
Hi @kelseydm.Many thanks for your fast answer!The discussion you mentioned is extremely useful and I hope that other people living with this strange disease will again join and help.One more question:Are there any possibilities of complete healing of the ulcers without reccurence;
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@prairiesmoke - Sounds like you've spent some time in a bio-science research lab. Your point is well taken. Even though LV wounds may heal, as long as the underlying disease is still present, more breakouts are almost inevitable. We know a fair amount about the mechanism of LV. Now if we only knew more about what triggers an episode, we may be able to do something about the long term effects of our disease.
Some of the wound care techniques you describe may seem a bit un-scientific, but I remember reading a study by some medical researchers, that concluded that behind many successful home remedies, native cures, poultices, etc, there often is a solid, but unrecognized scientific basis.
Thanks for sharing. I agree with you that more LV research should be conducted at the molecular level if we are ever to fully understand this disease that affects us all.
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1 ReactionHi @marlene64,
I know exactly what you're going through. When I read your post I said to myself "oh my, that's me in a nutshell right there". First off, I'm very happy you found this post, you will be able to learn a great deal from everyone here. @gonefishinmt is a great man who's been through a lot as well and has some amazing insights as I do.
To answer your questions in sequence:
1) Factor V Leiden & Livedoid Vasculopathy:
It's becoming more and more known that these two conditions go hand in hand. Around when I was 23, I learned I had FVL. About 10 years ago, my 1st wound opened up, at first they called is Rheumatoid Vasculitis and my Dermatologist then discovered it was in fact Livedoid Vasculopathy.
You probably "learned" that they fight each other because of the posts I make. They do fight each other and here's why. FVL - clots bruise your arteries. The clot stretches the artery while blood is trying to pass through. LV inflames the arteries even more, allow seepage of blood to escape and pool in different areas of your body (most commonly within the outer skin layers of your legs). Now consider this, we are lifer's on blood thinners correct? So thinning your blood only fuels LV to increase the blood loss within the arteries. Hence the battle continues. When I try to treat FVL, my LV ulcers get worse, when I try to battle LV, my clotting factors increase. Thus creating a never ending cycle.
Right now I'm doing my own trials on different thinners to see which ones react better with LV. I've been on most blood thinners and each one reacts differently. The key for me is to be able to find the right balance between the two to allow my wounds to heal (open now for almost 10 years)
2) Pain management:
This is KEY for your mental health. Please take my recommendations to your doctor immediately. There's always different reactions for different people, but after years of experimenting with the right combination, here's what works for the exact same symptoms your mentioned above.
Inflammation: Naproxen 500mg / x2 daily
Relives pressure and inflammation (key***)
Pain: Ratio-Oxycocet (perks) 4-8 / x4 daily
Relieves most pain (key***)
Opiates (optional):
Try different types if the perks aren't enough (I stay away due to mind fog)
Pain Spikes: Tizanidine 4mg / x2 daily
These will take away the nerve ending spikes that you get (key***)
Moods: Antidepressants
If you find your moods are always up/down, it's probably due to the pain. Ask for options
Stomach Ulcers: Pantoprazole 40mg / x2 daily
Prevents heartburn and stomach ulcers from all the meds (key***)
I've been in pain most of my life and people are amazed when they find out years later on how much pain i'm always in. I rarely show it and it's because of years of experimenting getting the right combination of medications that help with FVL & LV.
------- End pain management -------
3) LV rash/network of blue dark veins:
That's exactly how it all started for me. I had a really dark reddish/purple spot at my lower ankle for over a year until it completely tore off, only then did I seek help (my pride was my downfall). If you have these signs, go see a Dermatologist immediately and bring the fact sheets I posted earlier. I wish there was a discussion like this 10 years ago, I would of been able to change my diet to suit my health a lot better, and I would of started a lower-body exercise program to increase blood flow and strengthen my muscles.
4) I am on disability:
Again, it took me a long time to accept my new life and the limitations I have. But that doesn't mean you cannot work, it just means we need to work at a slower pace, and an environment that better suits our illnesses. At the moment I volunteer from home. I'm the Patient Ambassador for Thrombosis Canada and also help in many other avenues (ie. Mayo Clinic Connect). Being on disability isn't the end, instead it's the beginning to asking for help. Through income support, medication support and other support programs, you can start to get access to resources you never had before. This process takes a lot of time and effort, I recommend you start asap just because of the amount of time it takes. Once approved, you have options and don't have to stay solely dependent on disability alone, you can then work at your own pace.
5) What doctor?
Dermatologist first. The dermatologist will be the one to make the call for LV (usually). They can also set you on the right path if you start to show skin irritations. There are some creams and what not that actually harm your chances, or otherwise deteriorate your skin faster than normal (i.e. some topical ointments thin the skin layers). The key is to also ask about the "right" diet appropriate for you. I was told a high-protein diet is the key for my body to increase blood flow and help to health wounds. Less processed food (given for anyone) and a boost of vitamins (Which I buy high-end water drinks with added vitamins).
2nd a vascular surgeon is necessary also. They can help to manage your FVL, while also watching out for different signs and symptoms related to LV. Avoid having only one specialists making all the decisions. My dermatologist manages my wounds, while my vascular specialist maintains my blood flow, while my regular MD records and watches all specialists. Your network need to work together.
There's a 3rd possibility also, you may have "PTS" Post Thrombotic Syndrome which is common with people who have FVL. PTS symptoms include chronic leg pain, swelling, redness, and ulcers (sores). Talk to a "thrombo" specialist, specifically a Hematologist who's familiar with PTS.
6) Compression Stockings:
Also, if you don't already. I would start looking into compression stockings. These are key to maintain proper blood flow for FVL and preventing LV from flaring up further. My legs have been wrapped with compression bandages for many many years now. When I removed them (to change them), my legs start to swell right away cause a lot of pain. Find the right "fit" for you. Start with light compression and work your way up as needed.
I hope this helps you. I know how scary this might all be, I've been through it myself. You haven't found out if you have LV yet, but take it from me, FVL is a pre-cursor to LV. I'm finding more and more studies that support that fact. Don't wait to see your regular MD, make notes of everything you've learned here and ask the right questions, push to go see these specialists.
Take care!
Martin R. Lemieux
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3 ReactionsHey Martin:
Glad to see you're back on the post and congratulations on being named Patient Ambassador for Thrombosis Canada - a well deserved honor! You are a wonderful resource for all of us on this post and I for one am grateful for your shared wealth of information.
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1 Reaction@gonefishinmt Thank you so much Gary. I've always said, if you're going to suffer anyways, might as well try to help others to prevent them from going down the same path.
I've also truly appreciated your posts as well. They lit a fire under me to start sharing more and learning more through your shoes.
Have a great day!
Martin
Hey Martin,
Sorry it's taken me a few days to think over your advice but I think I'm ready to ask a second round of questions of you:
1.) You recommended I read the 3-page attachment you posted previously on LV treatments. On page 2, column 2, it mentions individuals who have LV that were found to also have anticoagulant (sp?) were helped by taking coumadin, a blood thinner but in your post above, you mention a disorder like Factor V Leiden works against LV, so I guess I'm still confused which way it is.
2.) Right now, I have the livedo reticulitis pattern of blue weblike veins (below the skin) on the back of my left calf. Did your LV start out with this type of vein pattern on the back of your leg? If so, how much time passed before you started experiencing ulcers on your leg?
3.) I read LV occurs bilaterally in both legs. Do you have LV on both legs? If LV is connected to the Factor V Leiden I have and the extensive damage done by the massive DVT I had in 2002 (top of stomach to left ankle solid), then could I expect my right leg may be safe from LV?
4.) Somewhere I read that you aren't fond of coumadin and its side effects. I've been on coumadin since 2002 at a pretty high dose of 10 mg/day. Recently I learned about eloquis but my general md is hesitant to let me switch. What are the long-term side effects of coumadin?
5.) I live in Illinois, across the river from St. Louis, where there are several great teaching hospitals. I am surprised, however, that the interventional radiologist, who has treated me I developed my DVT in 2002 and who monitors the stent in my stomach due to May Thurner Syndrome, didn't recognize or seem to know anything about LV. Do you possibly have any names for a dermatologist or a vascular doctor in my area who might be familiar with LV?
6.) You mention I should go see a dermatologist now. Is there a way for a doctor to diagnose if it's LV or not without an ulcer to biopsy?
7.) I am wearing my compression stockings during the day religiously and I sleep with my legs elevated, but I still have terrible, achy leg cramps in the affected leg all night, every night. I get some help from sleeping with a heating pad. Did the LV cause you pain before the ulcers presented themselves?
Again, thank you, for your valuable insight and wonderful, positive outlook.
Marlene
As I read through the emails I get the impression that there is a great<br />
difference between time of onset of LV (earlier in life vs later in life)<br />
and also the severity of LV (small lesions versus large ones). According<br />
to Mayo notes aproximately 20% of people with LV have Leiden Factor V for<br />
blood clotting. I know 2 other people with Factor 5, one of my daughters<br />
and a distant cousin and neither of them appear to have LV. My LV diidn't<br />
appear until after 40 and was agrivated by a wound to my ankle, as was my<br />
grandmother's LV. Our LV was localized to the ankle area. Many on this<br />
list have severe LV that covers large areas of skin. I think what we are<br />
seeing is a genetic trait with partial dominance and/or incomplete<br />
penatrance. How many of us have close relatives with Factor 5? How many of<br />
us had injuries to our legs, ankles or feet PRIOR to getting LV?<br />
<br />
My younger daughter does not have Factor 5, but to be on birth control<br />
pills was told she needed to be checked for Factor 5, since both me sister<br />
and I have Factor 5. Factor 5 is inherited, most probably from my dad, who<br />
seemed to have blood that clotted very quickly. When my younger daughter<br />
was born I had at least a dozen surface clots on each thigh, I had the vein<br />
removed in two surgeries but it did nothing to stop the LV ulcer. A<br />
vascular surgeon did surgery and then tried injecting the veins in ankle to<br />
stop LV. That didn't work,only made the whole area turn brown and small<br />
pinhead size blood clots appeared. That was about 15 years ago. A young PA<br />
in the dermatology clinic figured out that I had LV about 10 years ago.<br />
Wound care since then has been not all that helpful. They used an<br />
experimental sonicating treatment to help with wound healing, but the<br />
machine operated at 10 times the speed needed for optimal healing and<br />
destroyed the tissue I did have that was healing. They also kept putting<br />
nonstick pads on the ulcer that had latex in them. I am allergic to latex.<br />
If you have latex allergies please watch for warnings on Telfa and other<br />
dressings!<br />
<br />
My LV starts as small blood clots that then rupture creating a hole in<br />
skin that leads to more tiny clots that then rupture and make more holes<br />
and pretty soon I have an ulcer. I also get tiny clots on soles of my feet,<br />
then the skin peels like it would for a regular blood blister. If I use a<br />
cortizone cream on the area around the ulcer to reduce the inflamation, my<br />
skin thins and I get more and more of the tiny clots and that make the<br />
ulcer larger. Please be careful when using cortizone or its derivatives.<br />
<br />
My doctor has me on 2 regular aspirin a day for blood thinning, and I eat<br />
dark chocolate to help keep veins flexible (best excuse I ever found for my<br />
chocolate cravings). I have taken warfarin for clotting and also the<br />
injectable blood thinner, they didn't seem to affect the LV either way.<br />
<br />
This has gotten pretty long, but I have tried to outline what I have found<br />
to work and not to work (mostly what didn't work). It really helps if you<br />
have a doctor who listens to you, takes you seriously and isn't afraid to<br />
think OUTSIDE the box.<br />
<br />
Sheila<br />
<br />
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2 ReactionsHi @marlene64,
Please excuse the long delay, I've been swamped lately. To respond to your 2nd set of questions, I'll do my best, but remember that these answers are from my own experiences and should only help to guide you to ask the right questions with your specialists.
1) The reason why I mention FactorV fights LV is due to the fact that FVL is a clotting disorder that needs anticoagulants to ensure clots aren't being formed all the time. Now in the pages I attached, Low-Molecular Weight Heparin is administered to help LV. You don't have to have a clotting disorder to receive the injections. I was on the injections for 2 years straight. In the end, it didn't seem to help my ulcers and got increasingly harder and harder to find areas on my stomach and thighs to inject myself. This in itself doesn't go against LV, but when your arteries are battered and bruised from clots like mine are, it gets increasingly difficult to get the needed oxygen from the blood to the wounds themselves. Oxygen = healing.
Bad blood flow and terrible blood pressure works against trying to heal the wounds. It's because of my lack of oxygen to the wounds that I was given the opportunity to go into a Hyperbaric Chamber for two hours a day, for six weeks straight. Having pure oxygen pumped into my body was thought to potentially help heal my wounds (also found on the LV pages I uploaded), but again, nothing happened to help heal my wounds.
See one condition gives you clots and damages your arteries. The other condition swells your arteries and increases chances of blood seeping to the skin (eventually creating chronic ulcerative wounds). While it would seem that the two would work together, in my experience they don't. Once you have open wounds, they are constantly fighting off infections due to the lack of nutrients needed from oxygen in the blood. Your immune system is constantly in overdrive. Unfortunately, I go on and off antibiotics more than I would like just to ensure my wounds don't become so infected that they have to operate and/or potentially amputate.
I hope this clears the air a little. It's a frightening thought I agree, but not all cases are the same with LV.
2) For me it started with a deep bluish/purple spot near my outer ankle on my left leg. I can't remember if it started with vein like structures since I didn't pay too much attention to it until it for over a year until started getting really soft to the touch and extremely sore. Once the skin layers underneath the top layer started breaking down, it felt almost like I could swish my skin around under the outer layer of skin. I always thought it was just a side effect of the blood thinners, boy was I wrong and so were my specialists who also thought the same thing.
Again, I would see a dermatologist and have a professional look at the area of skin. If there's any small micro-wounds already present, they may take a biopsy which is highly recommended.
3) Yes, both my legs are affected, but a great deal differently. Since most of my clots have affected my left leg, I have 3x more chronic open wounds present. The right leg has two smaller wounds, one of which closed up since it was directly tied into an artery. Over time, both legs got really bad, but it took years before my right leg showed the effects. That was one of the hardest points in all of this, I always had one good leg and that changed as well.
Again, FVL & LV affects everyone differently. Please don't take my experience as how it will happen (if it does at all) in your situation.
4) I have a love/hate relationship with Coumadin. I was on it for 12 years before I was able to switch to a different type of anticoagulant. Coumadin always made my arteries hurt, made me feel weakened and I would bruise a lot easier. And let's not forget, the need to do your INR constantly, which for me, would never seem to normalize. I was constantly worried about falling, or having accidents that could make me bleed internally.
I recently asked to the switched back from Xarelto onto Coumadin to experiment and see if my wounds would change at all. So far (1.5 months now), no positive changes, only negative changes (which might be due to infections recently, it's hard to say).
5) Contact the National Blood Clot Alliance (stoptheclot.org), I'm sure they have a list of hematologist in your area. Or alternatively, click the "make an appointment" button up top on the right hand side of this website. Most specialists don't know about LV because it's extremely rare. Only my dermatologist (who has 100's of patients weekly) knew about LV, but he even had to look it up since throughout his career, he had only dealt with one other patient with LV.
6) That's a good question. I'm not sure at all if they can diagnose LV without the progressive symptoms. Again, my specialists originally thought I had Rheumatoid Vasculitis, which was incorrect, but LV shows as being similar to other Vasculitis type conditions which makes it even harder to diagnose.
7) I've had leg pain for 20 years now Marlene. Having survived multiple clots in both legs, my arteries, muscle structures and nerves are never going to be the same. Clots force the walls of your arteries to expand, thus forcing other events to happen in the affected areas. Once you've had a clot, you never really recover 100%, there will always be damaged tissue and usually calcified clot remains.
I would speak to your doctor about the possibility of getting different pressure grade stockings. I used to wear compression stockings 24/7, only removing them to shower and/or to let my legs breathe from time to time. Unfortunately now, even if my wounds were to heal, there's still extensive damage and I would have to wear compression stockings for the rest of my life, or otherwise suffer through the swelling and the pain.
I'm sure you'll have more questions which is good. Write everything down, speak to your doctors, get advice from multiple specialists since therapies come from different departments. (ie. FVL = Hematologists, etc & Wound Care / LV = Dermatologists, etc.) Each condition needs to be treated from the appropriate specialist. Keep your own copy of your records so you can bring them with you whenever you see anyone.
Make sure to keep an accurate log of your medications, the effects or lack thereof. Keeping track over the years has helped me to be more informed about the decisions to try new therapies or not.
I hope this helps Marlene.
Take care, chat soon!
Martin R. Lemieux
For the last five months i suffer from livedoid vasculopathy.I am on dipyridamole and acetylsalicylic acid treatment with no great improvement.Does anybody from the group know about any potential healing effects of electromagnetic fields?
Thank you very much for your time.
Hi @patientrea. Welcome to Connect! I've moved your post over to this thread about treatment options for LV because we've had some good discussion here that I thought you would benefit from. I encourage you to read back through these posts. I'm also tagging, @mlemieux, @gonefishinmt and @marlene64 in hopes that they will welcome you and possibly be able to provide some insight into your question.
Hi @kelseydm.Many thanks for your fast answer!The discussion you mentioned is extremely useful and I hope that other people living with this strange disease will again join and help.One more question:Are there any possibilities of complete healing of the ulcers without reccurence;
Thanks again!!
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