Living with Neuropathy - Welcome to the group

@faithwalker007 I've had a good relationship with my pcp. There have never been confrontational discussions, and I've just tried to let his lectures about opioids roll off my back. I think he probably knows that I don't agree with him. At my last teleconference I told him about my range of pain level, and that I have less pain if I take mscontin 15mg qid. It's a challenge for me to remember the middle two. I understand that the doctors are in a tough position, trying to balance the limitations imposed on them with helping their patients find pain meds that work.

I haven't understood the mme values, and what they mean. Maybe I should Google it.

I need to read your posts several times so I can absorb everything you've said. You're a walking encyclopedia of medical wisdom.

My eyes are getting tired, so I need to put in my gel drops, put on my chin strap and Bipap mask. I appreciate everything you write.

Jim

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?

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?

I'm so sorry. I am a published author and I don't know how to dial it back. I'll try though.

@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

@parrotqueen
Hi, just wondering what your experience has been using boron for fibro. We started taking boron (3 mg/day) a couple months ago or more based on some info provided by @onamission . Also wondering how you arrived at 6 ml of boron 3-4 times per day? According to Google, 1 ml = 1g. From that it would seem that you are taking at least 18 g of boron per day. But I must be misunderstanding this because that would be way too much from what I have read.

Thanks in advance for any info you can provide. I am very interested in this. Best, Hank

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!

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

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.

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.