I will answer with ****
I'm currently researching some of your questions, particularly with regards to the pain in your feet. I'm taking more of a systematic approach to one problem at a time. Let's focus on the leg issues for the moment.
*** Thank you. Good idea.
My Foldi textbook on LE for Physicians and Therapists has excellent information on both vascular issues and LE and their relationship to one another. However, reading it is one thing; deciphering it is another.
**** Yes, I know what you mean.
My first question is: Have you had any history of DVTs (deep venous thrombosis) in your legs?
***** Absolutely not. I say that emphatically because I not only did not have anything like DVT, but I did not have any varicose veins or a even a single spider vein before my legs increased so much in volume. The vascular problems are so obviously related to the pressure on them. Several months ago, my legs began to increase in volume at an incredible rate. An area would balloon out over the persiod of a few days to a week and , boom - the spider veins would develop directly over that area. The varicose veins took a little longer than a week to occur. There is another interesting to point. I had the edema for many years where it had reached a certain volume and had stabilized there. One factor that may have caused the acceleration of the edema is that for the four years previous to it getting worse, I was eating 2 cups blueberries a day. The bioflavonoids in them I think are part of the benzo-pyrones so tauted to help both vein integrity as well as LE in general. It was around the time that I stopped eating them that the edema and veins got worse. I have to say, though, around that time, I also a lot of skin infection very probably due to the mouse invasion in my home.
Have you had a doppler study of the lower extremity done on the vascular system, particularly the veins ?
**** I was going to but, when the vein trouble became obvious, I realized that a test for CVI was not necessary - varicose veins = CVI. And due to the rate at which they began to develop, I felt that I should do what I could to slow the progression down. A very large part of slowing it down, is keeping off my feet. Last time, I took the time to be on my feet more than usual, in order to go to get a blood draw and an echocardiogram, my feet took such a beating and it took three days for them to return to their normally painful/dysfunctional state. It is not so much the pain that worried me, but the fact that I caused more damage. Standing on them causes more veins to blow out and that is something that seems irreversible and will add to the overall problems significantly. I just received the "Rusperin C" and hope that it will help the veins. As sick of frozen blueberries as I am, I am starting back on them.
Can you be more specific about the "nerve pain" -- is it a result of direct damage to the nerve fibers? Myelin sheath? Chemical changes in neurotransmitters? If you can narrow the nerve "damage" a bit to the best of your knowledge that would help. As I am finding out, there are more than one reason for nerve pain to occur, and it can be related to LE or be something completely different.
**** There are a lot nerves on the top of the foot (along with blood vessels) that apparently (according to an LE instructional dvd) need to be protected because they are particularly vulnerable - I guess because of the pressure of the edema. This pain is much more so on the top of the right foot. My right foot is also larger than my left - the reverse was true just naturally before any edema. At a time that the pain there began, I saw some veins there become prominent - all of a sudden. This leads me to believe that the vein problem is related to the pain. Not necessarily that the vein problem caused the pain, but perhaps the increased pressure from the edema there blew out the veins and that same edematous pressure simultaneously caused an increase in pressure on the nerves. Of course, the veins screwing up can also, in and of itself, cause edema due to their negative effect on surrounding tissue. So, it could be that the general existing edema put pressure on the veins, they blew out and as a result - more edema (and pressure on the nerves) due to vascular insufficiency.
One thing I do know for sure is that the less I am on my feet, the better. It is not undoing the problem, but is slows down the rate at which they become more damaged. The disadvantage to having my feet up the way I do is this - I sit in a chair with my feet up on a fairly stable TV tray table. That helps keep my feet and calves and knees from swelling , but since I have whole body edema, this creates a problem for my thighs and butt and torso. My thighs and butt become much bigger over time and I think I understand why. Particularly because of my increased volume and therefore, weight, the pressure on my butt, with my legs up like that, is quite high. The lymphatic fluid from my feet and calves has nowhere to drain. There is a downward slope between my knees and the tops of my thighs so the fluid drains towards the tops of my thighs and is all stopped when it gets to my butt that has so much pressure on it from the chair below it. It is far from perfect, but what I do is get up before too long and walk around a bit so that the fluid can get passed my butt and head upwards to drain - not that it does that very well but I think that it does help slow down the increase in the thighs and butt volume during my awake and up and around time period . What would be much better would be if I could lie on a foam wedge (like a slant board) so that my whole body was elevated - so to speak. That way my whole body, including my poor neglected thighs and butt and torso and arms could drain. With the way I currently sit with feet and calves on the TV table, my butt and thighs really get large - especially if I do not get up often. But, standing up is generally not good. I am substantially larger when I lay down to go to sleep at night than I am when I get up after lying down. In the beginning of the edema, I would go back to my normal size by morning - not so now. I am 5' 6" and I used to be an acceptable 130-140 pounds. When I went to get the echocardiogram, I saw a scale, got on it and was horrified. I have gained 70 pounds and know that much, if not all, is water weight. The problem with lying on a slanted wedge is that I will not be able to even work on my computer as I do now with my legs up.It is hard enough getting things done as it is. But I would do it as much as I can - once I can clear the area of a room out and get my old massage table out of the attic and purchase a custom-made wedge to place on it.
Is the pain in your feet more intense when standing or walking? Does elevating the feet relieve the pain?
**** Yes, to both questions. However, even with my feet up - I can wiggle my bad (right) foot and get a stabbing pain. I should mention that even the underside of my feet are really painful as well as the tops. I think that the underside pain is also, in part, related to the vein complication. I think that vein problems may be more prevalent in people with LE than is thought because of this - When I recently attempted to bandage my feet and legs (and unwrapped because of the pain), I noticed varicose veins that I otherwise did not see - the feet being wrapped for only several minutes, compressed the tissue back enough to SEE the varicose veins that were otherwise not seen due to the surrounding edema enveloping them !!! Although, I suppose anyone who does bandaging would see them and take note of them.
TOM Said : With regards to your question about compression improving vascularization, I am refering to improved up-flow of blood through weak and/or damaged veins, usually the result of damage to venous valves. Compression helps weak/damage veins over come the forces of gravity and improve venous flow and the exchange of fluids between arteries, veins, and even lymphatics resulting in healthier tissue function. This is particularly important in post-DVT syndrome, Chronic Venous Insufficiency, and other venous and arterial maladies. And, yes, spider veins and vericose veins can occur with LE but only if venous insufficiency is also present. It is not rare since LE can also affect venous flow.
*** Thanks for clarifying that - I understand. When you say that vein problems can occur with LE but only if VI is also present - you know what I am thinking ! With my vein problem being caused by the edema. Since I malabsorb nutrients, it is possible that my situation with vein integrity is more extreme than the average person with LE. Also, the rate at which the recent increase in volume occurred could account for the venous damage.
I will continue reading up on this but will be asking more questions as I go along so bear with me.
**** Thank you very much, Tom. Take your time. I will personal message you a link to the Casley-Smith article on Benzo-pyrones use in LE, in case you have not seen it. There are some benzo-pyrones, aside from coumarin, that I think probably are safe - the bioflavonoids, for one. The article I will send the link for is a synopsis of a lot of hard work on the part of the two LE researchers from Australia - it is very interesting. You may already be familiar with their work.