@rramsey Thank you for information about SFN and compression socks. I think I will see if my doctor has any information on it. My good friend Chris @artscaping also told me I should try the Legs Up the Wall Yoga pose to help with the edema in the legs. I just have a problem getting up from the floor. I do like @johnhans idea to try it on a bed and walk the legs up past the headboard and I'm see if that's possible for me. Hoping the sun is shining where you and the pain is on vacation for all our cyber friends.
John, I know that you have to use the compression socks for edema. If the 90 degree up the wall is not feasible for you then you might consider adding to the gradient effect of the socks by "pumping" maneuver for the lower legs. As you are sitting working on your computer place your feet flat on the floor and alternate raising your toes slowly and as high as possible off the floor and then raising your heels as high as possible off the floor. Do this slowly and deliberately twelve to fifteen times. Repeat several times per day. This will augment the action of the socks and add some additional velocity to the hemodynamics of your lower leg circulation and help move that sequestered edema fluid out of your legs.
@rramsey@johnbishop...I am doing a little research on this issue of compression socks as people were recommending these compression socks to me as a solution. I am convinced that these socks are not for SFN as SFN does not cause swelling of the feet or legs normally due to do to a myriad of things including inactivity, poor blood circulation etc. In doing this research I did come across a rare condition called Vasculitic Neuropathy. A paper published in 2005 called "Skin Denervation in Vasculitic Neuropathy" provided some insight. I am beginning to think this maybe the cause of my SFN. Since my feet symptoms are so unusual, I am beginning to think that this is an autoimmune problem affecting the small blood vessels in my skin. Since I am reading the book co-authored by Deepak Chopra called "Super Genes" (about Epigenitics), this may be due to an acquired genetic mutation or other environmental cause. The term "aaSFN", now in common use", suggests an apparently autoimmune SFN which might be treatable with iVIG or Plasmapheresis. Perhaps this is why Dr. Argoff suggested these treatments and why studies are being done with those seemingly idiopathic for SFN. Circulation problems can cause SFN in diabetics, for example. However, the vasculitis (inflammation) in this case affects the smaller capillaries in the skin that work with the small fiber nerves to provide normal blood circulation. Inflammation of these vessels is a lot different than inflammation/blockage of blood in the above described circulatory system (veins and arteries). John, would you know more about this type of vascular neuropathy? I am getting bogged down in terms such as methylation and other causes of mutations and causes of possible yet unknown autoimmune diseases...Even if it goes nowhere, it is an interesting topic (and book). Pam
@rramsey, @johnbishop Thanks for the reminder about the benefits derived from this “legs up the wall” yoga pose. Do you know of a better way to get in the pose when you have numbness in your legs? That would be helpful. May you have joy today. Chris
@rramsey Try placing a bolster or a sturdy pillow against the wall, then gradually roll your butt up on to the pillow, while slowly sliding your legs up the wall. Good luck!
@rramsey@johnbishop...I am doing a little research on this issue of compression socks as people were recommending these compression socks to me as a solution. I am convinced that these socks are not for SFN as SFN does not cause swelling of the feet or legs normally due to do to a myriad of things including inactivity, poor blood circulation etc. In doing this research I did come across a rare condition called Vasculitic Neuropathy. A paper published in 2005 called "Skin Denervation in Vasculitic Neuropathy" provided some insight. I am beginning to think this maybe the cause of my SFN. Since my feet symptoms are so unusual, I am beginning to think that this is an autoimmune problem affecting the small blood vessels in my skin. Since I am reading the book co-authored by Deepak Chopra called "Super Genes" (about Epigenitics), this may be due to an acquired genetic mutation or other environmental cause. The term "aaSFN", now in common use", suggests an apparently autoimmune SFN which might be treatable with iVIG or Plasmapheresis. Perhaps this is why Dr. Argoff suggested these treatments and why studies are being done with those seemingly idiopathic for SFN. Circulation problems can cause SFN in diabetics, for example. However, the vasculitis (inflammation) in this case affects the smaller capillaries in the skin that work with the small fiber nerves to provide normal blood circulation. Inflammation of these vessels is a lot different than inflammation/blockage of blood in the above described circulatory system (veins and arteries). John, would you know more about this type of vascular neuropathy? I am getting bogged down in terms such as methylation and other causes of mutations and causes of possible yet unknown autoimmune diseases...Even if it goes nowhere, it is an interesting topic (and book). Pam
Hi Pam @burningfeetinphoenix, I normally use Google Scholar to research medical information just because I can easily sort by year to get the newest research type information. Unfortunately a lot of the time the information pops up as a book or scholarly paper that is not free and I'm all about free ☺ I found this using Google Scholar and the abstract gives an overview without buying the article. I have no medical training or background but I think the reason why vasculitis can cause peripheral neuropathy is that inflammation can compress/affect the small fiber nerves if it's bad enough. I may be way off base, I really don't know. It just sounds logical to me.
@rramsey@johnbishop...I am doing a little research on this issue of compression socks as people were recommending these compression socks to me as a solution. I am convinced that these socks are not for SFN as SFN does not cause swelling of the feet or legs normally due to do to a myriad of things including inactivity, poor blood circulation etc. In doing this research I did come across a rare condition called Vasculitic Neuropathy. A paper published in 2005 called "Skin Denervation in Vasculitic Neuropathy" provided some insight. I am beginning to think this maybe the cause of my SFN. Since my feet symptoms are so unusual, I am beginning to think that this is an autoimmune problem affecting the small blood vessels in my skin. Since I am reading the book co-authored by Deepak Chopra called "Super Genes" (about Epigenitics), this may be due to an acquired genetic mutation or other environmental cause. The term "aaSFN", now in common use", suggests an apparently autoimmune SFN which might be treatable with iVIG or Plasmapheresis. Perhaps this is why Dr. Argoff suggested these treatments and why studies are being done with those seemingly idiopathic for SFN. Circulation problems can cause SFN in diabetics, for example. However, the vasculitis (inflammation) in this case affects the smaller capillaries in the skin that work with the small fiber nerves to provide normal blood circulation. Inflammation of these vessels is a lot different than inflammation/blockage of blood in the above described circulatory system (veins and arteries). John, would you know more about this type of vascular neuropathy? I am getting bogged down in terms such as methylation and other causes of mutations and causes of possible yet unknown autoimmune diseases...Even if it goes nowhere, it is an interesting topic (and book). Pam
Since you brought up IVIG treatments, my Immunologist is recommending using a drug called Hizentra. It is similar to an IVIG treatment, but it is not done with an IV. You inject it into your body (not blood vessels) slowly for about 30 minutes. It is supposed to help the immune system. It is now FDA approved for neuropathy. He is going to submit it to see if my insurance will cover it. Has anyone else tried this treatment?
@johnbishop Thanks for the info on Vasculitis and PN. Well, I found out I do not have it. I read my skin biopsy report and it says "No vasculopathy (blood vessels normal with CD34 stain)". I guess I'll have to keep searching for a why my life was turned upside down in one day! Pam
Hi, @anglstratus2012, and welcome to Connect. I believe you were saying in your post you have peripheral neuropathy and you don't know what is causing it? If so, will you share what kind of symptoms you have: numbness, pain, burning?
I hate to interrupt this discussion, but I have a question and I don't know any way to get an answer other than this way. For a week or more and intermittently before that I have been having email for this topic going to spam. Just neuropathy, no other topic. Any way to change this? Also it can take a day or two until they show up in the spam folder.
Connect
Connect
Like
Helpful
Hug
John, I know that you have to use the compression socks for edema. If the 90 degree up the wall is not feasible for you then you might consider adding to the gradient effect of the socks by "pumping" maneuver for the lower legs. As you are sitting working on your computer place your feet flat on the floor and alternate raising your toes slowly and as high as possible off the floor and then raising your heels as high as possible off the floor. Do this slowly and deliberately twelve to fifteen times. Repeat several times per day. This will augment the action of the socks and add some additional velocity to the hemodynamics of your lower leg circulation and help move that sequestered edema fluid out of your legs.
-
Like -
Helpful -
Hug
2 Reactions@rramsey @johnbishop...I am doing a little research on this issue of compression socks as people were recommending these compression socks to me as a solution. I am convinced that these socks are not for SFN as SFN does not cause swelling of the feet or legs normally due to do to a myriad of things including inactivity, poor blood circulation etc. In doing this research I did come across a rare condition called Vasculitic Neuropathy. A paper published in 2005 called "Skin Denervation in Vasculitic Neuropathy" provided some insight. I am beginning to think this maybe the cause of my SFN. Since my feet symptoms are so unusual, I am beginning to think that this is an autoimmune problem affecting the small blood vessels in my skin. Since I am reading the book co-authored by Deepak Chopra called "Super Genes" (about Epigenitics), this may be due to an acquired genetic mutation or other environmental cause. The term "aaSFN", now in common use", suggests an apparently autoimmune SFN which might be treatable with iVIG or Plasmapheresis. Perhaps this is why Dr. Argoff suggested these treatments and why studies are being done with those seemingly idiopathic for SFN. Circulation problems can cause SFN in diabetics, for example. However, the vasculitis (inflammation) in this case affects the smaller capillaries in the skin that work with the small fiber nerves to provide normal blood circulation. Inflammation of these vessels is a lot different than inflammation/blockage of blood in the above described circulatory system (veins and arteries). John, would you know more about this type of vascular neuropathy? I am getting bogged down in terms such as methylation and other causes of mutations and causes of possible yet unknown autoimmune diseases...Even if it goes nowhere, it is an interesting topic (and book). Pam
-
Like -
Helpful -
Hug
4 Reactions@rramsey Try placing a bolster or a sturdy pillow against the wall, then gradually roll your butt up on to the pillow, while slowly sliding your legs up the wall. Good luck!
-
Like -
Helpful -
Hug
2 ReactionsHi Pam @burningfeetinphoenix, I normally use Google Scholar to research medical information just because I can easily sort by year to get the newest research type information. Unfortunately a lot of the time the information pops up as a book or scholarly paper that is not free and I'm all about free ☺ I found this using Google Scholar and the abstract gives an overview without buying the article. I have no medical training or background but I think the reason why vasculitis can cause peripheral neuropathy is that inflammation can compress/affect the small fiber nerves if it's bad enough. I may be way off base, I really don't know. It just sounds logical to me.
Vasculitis and peripheral neuropathy
-- https://journals.lww.com/co-rheumatology/Abstract/2019/01000/Vasculitis_and_peripheral_neuropathy.8.aspx
-
Like -
Helpful -
Hug
1 ReactionSince you brought up IVIG treatments, my Immunologist is recommending using a drug called Hizentra. It is similar to an IVIG treatment, but it is not done with an IV. You inject it into your body (not blood vessels) slowly for about 30 minutes. It is supposed to help the immune system. It is now FDA approved for neuropathy. He is going to submit it to see if my insurance will cover it. Has anyone else tried this treatment?
-
Like -
Helpful -
Hug
2 Reactions@cwallen9 The info. from the manufacturer says it is is CIDP. Is this what you have? I have idiopathic SFN. Sounds promising. Pam
-
Like -
Helpful -
Hug
1 Reaction@johnbishop Thanks for the info on Vasculitis and PN. Well, I found out I do not have it. I read my skin biopsy report and it says "No vasculopathy (blood vessels normal with CD34 stain)". I guess I'll have to keep searching for a why my life was turned upside down in one day! Pam
-
Like -
Helpful -
Hug
1 ReactionYes and my doctor doesn't know what is causing it.
Hi, @anglstratus2012, and welcome to Connect. I believe you were saying in your post you have peripheral neuropathy and you don't know what is causing it? If so, will you share what kind of symptoms you have: numbness, pain, burning?
-
Like -
Helpful -
Hug
1 ReactionI hate to interrupt this discussion, but I have a question and I don't know any way to get an answer other than this way. For a week or more and intermittently before that I have been having email for this topic going to spam. Just neuropathy, no other topic. Any way to change this? Also it can take a day or two until they show up in the spam folder.