Living with Neuropathy - Welcome to the group

I have many symptoms and health problems. My care seems scattered with many doctors but not brought together to find or help problems. All I know is my legs and feet are becoming worse and feel I'm losing my ability to walk. Losing my balance also. My feet are so painful and swollen I cannot wear shoes. I wear compression stockings for leg swelling but my feet and ankles still swell a great deal. I have hot red feet and legs at night. I have trouble sleeping and am not Diabetic. Don't know what is causing this. I also have chronic back problems and carpel tunnel in both hands. I am at a loss as to what to do! I take Pregablin to no avail and have Opiods for my back pain. I also take a nsaid. I'm having increasing problems and am worried I will end up in a wheelchair. My feet are also extremely sensitive to cold. I can't win...what is wrong with me? Can I be helped?

@jimhd
Good morning Jim,
I have severe memory issues so I only take medication once a day. When I’m hospitalized and tell them I take all my medicine once a day it usually weirds them out but it works for me. I was wondering if you had ever discussed with your doctor your memory issues regarding your mid-day doses? Perhaps an extended-release version would be a better option. Because of my memory issues I was on the fentanyl patch which is changed every three days. That could be another option for you.
Jake

Hello @irishpat70, Welcome to Mayo Clinic Connect. I also wear compression socks (20-30 mmhg) to help with swelling in my legs from lymphedema. Here are other discussions on Connect that you may find helpful.

- lymphedema: https://connect.mayoclinic.org/discussion/lymphedema-2f0573/
- Prognosis in treating carpal tunnel left untreated for 50 years: https://connect.mayoclinic.org/discussion/prognosis-in-treating-carpal-tunnel-left-untreated-for-50-years/
- Please help with sleep problems: https://connect.mayoclinic.org/discussion/0616/

Have you had any tests to find out the cause of the fluid buildup in your legs and feet?

@irishpat70
Hi, I am wondering, since you placed your post under the neuropathy group, whether you have been diagnosed with peripheral neuropathy (PN)? If not, are you intending to be tested for it?

As to what can cause PN other than diabetes, I have heard a myriad of different causes from a number of different people in this forum. My wife's is from chemotherapy (a fairly common cause), but quite a few people say theirs was from different surgical procedures. Some have gotten it simply from an injection. A vitamin b12 deficiency caused another person's case. And there are other causes as well. Just FYI. Best, Hank

@faithwalker Renee, I LOVE how you write!!!!! I don't want you to dial it back, as it is so meaningful and just perfectly written. It's just that you have such writing talent that your words really get to me. Keep it up!!!! LoriRenee1

Thank you for the complement. I’m trying to write my novels again but the focus issue is getting in the way. I will continue the fight!

Sorry I meant to say 6 mg of boron three to four times a day - I'm taking about 21-24 mg per day. I arrived at that dose based on what it took to get rid of all my RA and OA pain. I think it helps with fibromyalgia also. But what really helped with fibromyalgia is I went off ALL sugar. It's hard to do that - there are over 187 names for sugar and you have to know them all in order to avoid it. Going off all sugar fixed almost everything in my body! I am following the diet in the book called The Candida Cure by Ann Boroch - I've been doing it for six years almost and although I am going to be 70 soon, many days I feel like I'm in my 20s. I also take turmeric, boswellia serrata, multivitamin, B complex, vitamin D3, vitamin K2 (mk4, mk7), vitamin C, aloe vera, bioquercetin, zinc, calcium, magnesium, boron (approx. 20 mg/day), collagen peptides, CoQ10, PQQ, NAC, sunflower lecithin (works great for memory), and more. The boron just took all my skeletal pain, arthritis pain, fibromyalgia pain - all of it. I have a tough time taking many prescription meds - so I rely heavily on herbs, vitamins, minerals. I have a lot wrong with me such as hypopituitarism (due to a pituitary tumor), and about 15 autoimmune diseases from myasthenia gravis to rheumatoid and osteoarthritis, hidradenitis suppurativa (which is controlled by turmeric), Reynaud's (which stopped by I don't know how or why it stopped), and peripheral neuropathy. I also have Mitral Valve Prolapse and Panic Disorder. Going off sugar helped everything on my body and I lost a bunch of weight, I read that somebody here has carpal tunnel - I had surgery for that 30 years ago and it fixed it instantly and I wondered why I didn't do it sooner,. (I type 130 wpm and was a pianist.). I hope something I have written here will help somebody. I got my peripheral neuropathy down to just bugging me maybe 2-3 nights every month or two. I used to wake up in horrible pain every morning with PN pain. I'm not sure what caused it to stop bugging me who much - I was hoping the PQQ (which must be taken with CoQ10 - and NAC rounds it out nicely). Now and again it will bother me for a couple days, then it disappears again. I find cannabis CBD is VERY effective for almost any pain. It made me a little bit sleepy the first few times I took it - now I only feel relief when I use it.

So Hank (jesfactsmon), somewhere in all that, my fibromyalgia just disappeared. I think sugar had a big part in it, I DO take gabapentin (900 mg 3-4 times a day), boron, and all that other stuff. The PQQ may also play a part in that. And staying active is also important.

I have to say the usual disclaimer of be sure to ask your doctor before you do anything serious. My doctors didn't know what to do to help me - so I just took off on my own. My infectious disease doctor knows everything I am doing and approves.

@faithwalker007 Renee, I'd love to read your books. Titles, please.

Okay lol in order of publication
Beast of Stratton
To Soar on Eagles Wings, Book One of the Snowy Range Chronicles
Racing Hearts
Through Raging Waters, Book Two of the Snowy Range Chronicles
Crazy Woman Christmas, A Cowboy Christmas Series Novella

@parrotqueen
It sounds like we have a lot in common regarding supplements.
Many of the things you are taking are similar to what we take, but some of what you take we don't (and we're not familiar with boswellia serrata -will look it up) and we are taking some things which you do not list. We did take PQQ for a while but did not notice much effect. My wife took CO-Q10 with it but I did not. We also take acetyl l carnitine (with r lipoic acid), l carnosine and Niagen and Mito-Q, all for mitochondria boosting, but we did stop NAC I am ambivalent as to whether we should start that again. We both reduced sugar drastically in 2014 but are not fanatics -maybe we should be. My wife has PN and fibro along with a few other annoying things. We both suffered through the candida albicans scourge back in the 80's but came through it, thankfully by a STRICT diet for a time.

Thanks for clearing up the boron question. It sounds like I need to find out if Linda (my wife) needs to up her boron intake for her fibro. You certainly sound a lot like me in that you research everything and are doing as much as possible to help yourself via supplements while trying to avoid drugs. A compatriot for sure!

Thanks again, Hank