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Anyone here dealing with peripheral neuropathy?
John, Is there any way to get the vitamin/mineral combo without joining facebook. I do not use facebook and do not want to if I can avoid it. Thank you for any help
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@rramsey I found it on their website. Looks complecated. Will try it though! Pam
@rramsey and @burningfeetinphoenix — You can order the products from the Facebook groups website and use the instructions on the website for taking the supplements but you will lose the ability to search the Facebook group for any questions you might have and to see the stories of other members of their group and their symptoms/diagnosis that have been helped. You easily find the success stories of the members who have posted them in the close to 9,000 member group by searching the group using #theprotocolworks.
It is a little confusing trying to order until you figure out how it's layed out – Just look for "Order 1". through "Order 11." followed by a link for US (USA), UK (United Kingdom) and CDN (Canada) to buy on Amazon for the selected country. Some members in other locations around the world have put together a list of how to get the products for other locations but you can only access the list from the Facebook group by searching or asking a question in the group. The Facebook group which is a non-profit (501c3) will soon release their own version of the supplements to reduce the number of pills to about half of what we take daily now. The only other caveat I know is that the Hemp Oil is ordered through the group using PayPal or mailing a check. That process was put in place so that we don't get expired or soon to expire hemp oil which happened in the first year or so the Facebook group was formed.
Link to order the elements – http://solutions2pnpd.com/products/
Instructions for taking the elements – http://solutions2pnpd.com/instructions/
I would discuss the supplements with your doctor before taking them.
Thanks Pam, and thank you John for the clarification. John, for you, in reference to my original question about authoritative guidance for the use of compression socks. The rational for not wearing compression socks for SFN is because theoretically, from a physiological standpoint, the socks are capable of causing some degree of venous stasis and reduced arterial blood flow creating an anoxic environment around the associated nerves. Although this may be minor, any reduction of oxygen to an already damaged, oxygen deprived, oxygen hungry nerve may be pathologically detrimental to the protective myelin nerve sheath and ultimately to the nerve proper. I hope that there is someone in the group who has expertise in neurophysiology who can authoritatively comment on this controversial question.
I do not have the edema problem that you do(bless your heart), but my mother does. I recall that you said you have difficulty complying with your physicians recommendation to elevate your feet and legs several times per day. Here is a tip that may help and not require some many times per day. A yoga instructor taught her to lay on the floor with her buttocks against the wall and her feet and legs extended vertically 90 degrees up the wall. Hold this for several minutes(at least 15) while periodically wiggling the toes and flexing and extending the feet and ankles. Then finish by "milk" the toes, feet and legs by massaging from the toes downward to the waist. It is done first thing in the morning, sometime in the afternoon and at night before going to bed. These "super" elevations may cut down on the multiple minor elevations that he recommended and be more efficient and therapeutic for you. If you decide to try this, I hope it helps. Thanks again for your guidance with the supplements.
@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
@johnbishop I saw a video where they laid on a bed a walked their legs up the wall by the headboard.
@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.
Just did my legs up the wall on our bed on vacation in Kauai. I know friends, poor me. 😎 It rejuvenated me a lot after an active day.
Chris and John if it’s tough getting your legs straight up the wall you can modify this pose in different ways…. 1st, try stacking firm pillows next to the wall and lying down so the pillows are between your butt and the wall and your legs are propped on the pillows at an angle,with you feet maybe touching the wall. You’ll probably be at about a 90 degree angle.
The 2nd option is to lie on the floor with your legs on a chair at about a 90 degree angle.
The benefit of this pose is having your legs higher than your heart so just play around with whatever works for you. Just make sure your back in supported well.
I hope this helps as it it really is a remarkably restful pose. Think… falling asleep. 😴 Aloha. Margot
Chris, try laying in a doorway with your legs against the right door facing. The door facing should be at about your waist. Bring you knees up until you feet are flat on the floor, then bring the right knee to your chest, which you can assist with your hands or a strap and place it just inside the door facing on the wall. Once you have the right leg in place on the wall you can pivot your body to the right with leverage from that leg allowing you to bring the left leg up the same way. At that time both feet will be on the wall and you can comfortably slide them upward into the vertical 90 degree position. If flexibility prevents this maneuver then an alternative is to lay at the foot of a chair or sofa and bring your feet up on to the the sitting surface. This will place your thighs in the 90 degree position. You can place straps around your ankles that are long enough for you to be able to pull your lower leg into the full 90 degree position. You may have to do one leg at a time. If you can't reach the feet to do the "milking" maneuver the wiggling and flexing and extending of the feet and ankles should help a great deal. If this doesn't work then John's headboard suggestion may be the answer.
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 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!
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.
Vasculitis and peripheral neuropathy
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