Wellness

[Imadickens]

About 13 years ago I started having some shooting pains in both of my feet. It kept getting worse until I would pace the floor in agony. I saw the three top specialists in NYC. The first had no idea what caused my neuropathy. The second told me I was diabetic (I wasn't then and was just diagnosed a few months ago) without even looking at me or my med history! The last was great but he said the best he could do was manage pain, which is what I've been doing since.

I did two rounds of IvIg, which were horrid! I got so sick I had to be hospitalized . After the second time my husband told doc no more! So, now I'm on many heavy duty pain killers but pain still surfaces. I have it on both feet, tops of toes. It feels like I am either slicing my toes with razors or burning them with cigars. This past year it is now in my hands. It feels like my finger tips have been dipped in acid. It is being caused by an auto immune (unknown) which is also attacking other body systems run by sensory nerves, like teeth, tongue, and my body thermostat! I am hot 24/7, not flashes, hot to the point of getting sick and dilerious!

have any of you experienced this and have any suggestions? All help gratefully accepted!

[kaney]

I sympathize with you.My husband and I both have non-diabetic neuropathy.  It took time to find the right neurologist. At first gabapentin helped. But now I'm on Lyrica for the second time, and this time it helps a lot. Now my husband is trying it too.Nothing makes it go away, but this minimizes the pain.

[MalteseMomma]

I am so sorry for your pain.

. I have not been diagnosed but I have that pain in my feet and now my legs also. Many yrs ago I tried to explain it to my Dr but as I sat there and he was on his knees, masageing my feet ,while i tried to explain the pain ,I felt silly (love my Dr have had him all my life and raised my kids with him too) so I said never mind.Should not have let it go.

My grandaughter has diabetes and has same ,but worse and she is on dialsis 3x a week and they tell her .nothing much can be done for her except for the pain. I have read lazor treatments help but have not tried them.

I hope you find relief soon.

[Imadickens]

I'm tapering off the Gabapentin as I was hallucinating ! I was on 900 mg 3x daily, with option to add another 900! I tried Lyrica, which helped, but made me cry all day! Do you take any pain killers too?

If you are near NYC I'd love the name of your neuro! Mine retired!

[Leeny]

I am sorry to hear this and hope you can find some better relief. I hate to say it, but I've been experiencing some of those same symptoms. I am not saying I have this or not, but I go in for my physical in the fall and am going to bring it up. I have the hotness thing all the time. It's not the same as hot flashes. My feet feel like a bee is stinging them and shooting pains at times. I do have plantars facitis in my left heel which doesn't help the situation. I am not diabetic so I am not sure what is going on. I do suffer from fibromialgia which is something in itself. Do you wear any leg braces/or supports? I've had a brother in law that suffered with PN. and that helped him. Again, Good Luck!

[Imadickens]

I haven't heard about that! I have been reading about wearable Tens units like Sensa and Quell. Haven't tried any yet! Hugs to you and your grand! Hope things get better!

[Leeny]

I forgot to mention I am on Tramadol 50 mg 3x's a day and can take up to 6. This is strictly for pain. I try to stay with the 3 a day. 

[IMW]

I suffer with pn. Am on 3600 Gabapentin daily. It helps a lot. Still have pain in arms, hands etc. Was diagnosed with an A1c of 5.7- 

I also take Gaba nucleic acid, vit d, omega oil, b vitamins duloxetine-etc.

I can walk a few blocks on my best days, otherwise 1/2 a block. Before the gabapentin couldn't get from the bed to the bathroom.

Prior to the pn I was walking 5 miles daily, doing Pilates daily, doing a bit of weight bearing exercises and the body blade for 6 minutes daily.

I've had to give all of it up, the hardest struggle is the mind, how not to become depressed in the face of a chronic incurable, debilitating and extremely painful disease. I have had to work hard at acceptance and having gratitude. 

[SilleeMee]

I was diagnosed with scleroderma fourteen years ago. With this disease comes neuropathy. I had it in my hands and feet...mostly in the joints of my fingers and toes, very painful! Gabapentin was the first drug I was put on and it helped for many years with no sides whatsoever. Then I started developing bone pain which the gaba did not help. Docs put me on vasodialators to help increase blood flow to my nerve endings and it helped but dizziness was a side and I decided to stop taking it. I weaned off gaba also. I started looking for alternatives.

In the last several years I have changed my lifestyle for the good...no smoking or alcohol...healthy diet and exercise a must everyday. Started taking turmeric sups about a year ago.

I am pain-free today . 

[Havarti]

Research methyl-B12, also known as METHYLCOBALAMIN It has to be methyl-B12 not regular B12. Unlike regular B12 (cyanocobalamin), METHYLCOBALAMIN is active in spinal fluid. Because of this, it is able to help heal damaged nerve cells and restore the signal between the brain and the nerves. You can get it at a health food store in tablet form; some people give it by injection. It is water soluble sort of like vitamin C, so the body rids itself of any excess. I first found out about this trying to help my diabetic cat when the vet said there was nothing that could be done (that I should euthanize him). Methyl-B12 took this cat from needing to be carried to the littler box to walking normally in a very short period of time. Since that time it has also helped several human friends with neuropathy. I am not a doctor, nor medically trained in any way, I just did a lot of research and found something few know about that worked wonders affordably & quickly. Do your own research and make your own decisions, I just pass along the info in case you never knew this might be an option to research and consider.

Wishing relief fast, no matter what finds it for you! I had neuropathy from back problems so I can really relate to the misery you are experiencing.