Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@johnbishop

Hi Chris (@artscaping), I’m fortunate (if you can call it that). I only have numbness and not pain with my neuropathy. I also have polymyalgia rheumatica which does give me a lot of pain in the shoulders, arms and hands. I really notice it gets worse when the weather changes – gets really hot or cold. I’m on my second occurrence of the PMR. It went away for 6 years and then came back last year. My stress reliever is my Canon Powershot SX50 HS with 50x optical zoom. I set it up on a tripod looking out the window next to my computer. Last year a setup a bird feeder about 20 feet from the house so I could take photos. So when I’m daydreaming it’s part of my routine to look for interesting shots through the window. It fills in the voids in between customer calls and slow days since I work from home as the local telco Internet help desk.

Beatiful Summer day here in Southern Minnesota – especially if you have a/c and you’re inside :-).

John

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Good morning John,
Thanks so much for the info about skin moisturizers. I found them on Amazon. I use the Vanicream line of products for shampoo, body lotion, and heavy duty (Vaniply) stuff for face, eyelids and ears. Recommended by my dermatologist. Also found them at the Mayo Clinic store in Rochester. Sometimes I have to use some 1% hydrocortisone to clear up patches. Regarding the eyes…/resting them is good. Preservative free ointments and drops are good. I keep non preservative Refresh vials in the refrigerator….feels very cooling and soothing that way. I also use Restasis twice a day along with the heavy ointment. Takes about 15 minutes to absorb the ointment so that’s a rest time. I am now getting yearly Lipiflow treatments to preserve the remaining oil glands under the lower eyelid. Once they dry up you are in big time trouble. And then there are the daily moist heated eye packs for the same purpose…another time to rest. It is quite the battle….but the options, including irreplaceable loss of cells on the eye just aren’t attractive. My skin biopsy was .09 when it should be greater than 8.4. So….my tiny fibers are almost totally dried up, so to speak. And since they can’t do the job they were designed to do, all they can do is send back pain signals or so my neurologist tells me.

And yes, the new tram is up and running to the top of Tahquitz peak. It holds more people and turns 360 as it rises. Quite the ride. Restaurant at the top isn’t bad either. You can actually walk from the tram down into my village. Or at least I could do that years ago before a knee replacement. The mountains are green and beautiful this year with all of the rain last winter. I even have 5 apples on my tree. I have never had more than one for years of drought. The blue jays always got it before I could. I am attaching a pic of a juvenile oriole that became stunned when he hit the window on the deck in MN. We held it and sang to it for over an hour until he was strong enough to lift his wings and fly away.

I don’t have an instagram account…..sorry.

IMG_2501

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@johnbishop

Hi Chris (@artscaping), I’m fortunate (if you can call it that). I only have numbness and not pain with my neuropathy. I also have polymyalgia rheumatica which does give me a lot of pain in the shoulders, arms and hands. I really notice it gets worse when the weather changes – gets really hot or cold. I’m on my second occurrence of the PMR. It went away for 6 years and then came back last year. My stress reliever is my Canon Powershot SX50 HS with 50x optical zoom. I set it up on a tripod looking out the window next to my computer. Last year a setup a bird feeder about 20 feet from the house so I could take photos. So when I’m daydreaming it’s part of my routine to look for interesting shots through the window. It fills in the voids in between customer calls and slow days since I work from home as the local telco Internet help desk.

Beatiful Summer day here in Southern Minnesota – especially if you have a/c and you’re inside :-).

John

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Hi Chris, love the photo of the young oriole! I recently bought a big box of the Refresh vials but didn’t think to put them in the fridge to cool them down. I’ll have to give that a try. We did eat at the restaurant on top of the peak and we both enjoyed the food. The tram didn’t turn 360 when we rode it. That would be fun to do again – will have to add it to my bucket list if we ever visit So Cal again.

I think Instagram is the meeting place for the younger generation. I had to try it for a social media class and I’ve got a few younger co-workers and friends that use it. I rarely use it.

John

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I make my own lotions…sorry I cannot the recipe. If I were to do so I could be facing a law suit if someone were harmed and if it did help someone I could have the formula stolen and getting a legal patent…

I am not being cynical.

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I haven’t seen any posts about numbness in feet. This has made it difficult walking as I can’t really feel what is underfoot. Anyone else dealing with this and does anything help.

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@suzylulu

I haven’t seen any posts about numbness in feet. This has made it difficult walking as I can’t really feel what is underfoot. Anyone else dealing with this and does anything help.

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Hi @suzylulu – Most people with peripheral neuropathy have both numbness and pain. I only have the numbness with mine. I found something that has worked for me and others but may not work for everyone. You can view my story here on Connect at this link below:

https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=33#comment-36103

You might want to read through what others have shared in the discussion “Anyone here dealing with peripheral neuropathy?” under the Neuropathy Group. Here is the link: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/bookmark/?ajax_hook=action&_wpnonce=d2c60c017b

When you have numbness in the feet it is extremely important to exam your feet daily. I now wear socks all the time so that if I do injure the bottom of the feet I can tell right away. I also use a moisturizing lotion on my feet and legs to make sure the skin is hydrated.

Did your doctor give you a diagnosis for the numbness in the feet?

John

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For John Bishop @johnbishop and others with dry eyes from PN or other forms of neuropathy, please take care of your eyes. On Thursday, it was discovered by my opthomologist that I am now losing cells in my right eye. So we are attacking that issue with a new medication, Xiidra. It helps retain moisture better than Restasis. It too should be kept in the refrigerator. I will also have to increase the wet hot compresses. The battle has begun in earnest. And I will do everything I can to win.

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Neuropathy is a challenge to live with and there are days I do not even leave home. There are no meds I can take due to them turning me mean-even antidepressants did this to me. No need seeing any type of specialist as the only thing they do (can do) is prescribe. A pain specialist prescribed a TNS and even on the lowest setting that was a disaster. It is what it is and my neuropathy is possibly caused by fibromyalgia.

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@artscaping

For John Bishop @johnbishop and others with dry eyes from PN or other forms of neuropathy, please take care of your eyes. On Thursday, it was discovered by my opthomologist that I am now losing cells in my right eye. So we are attacking that issue with a new medication, Xiidra. It helps retain moisture better than Restasis. It too should be kept in the refrigerator. I will also have to increase the wet hot compresses. The battle has begun in earnest. And I will do everything I can to win.

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Thanks Chris, sorry to hear of more eye trouble for you. I’m glad to hear there is something that will help. I do get my eyes checked yearly at Mayo but you never know. Keep doing what you’re doing and stay on top of it.

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I have not ever heard life is fair…I hear others say this and I do not comment w/ the usual reply…I do not comment as I do not have the answer.

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@artscaping

For John Bishop @johnbishop and others with dry eyes from PN or other forms of neuropathy, please take care of your eyes. On Thursday, it was discovered by my opthomologist that I am now losing cells in my right eye. So we are attacking that issue with a new medication, Xiidra. It helps retain moisture better than Restasis. It too should be kept in the refrigerator. I will also have to increase the wet hot compresses. The battle has begun in earnest. And I will do everything I can to win.

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Hi @artscaping,

I just thought I’d pop in and post this information on Xiidra (Lifitegrast): http://www.mayoclinic.org/drugs-supplements/lifitegrast-ophthalmic-route/description/drg-20312356

@kyjeanne and @melperez1223 have also discussed Xiidra, and I wonder if they have any insights?

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@artscaping

For John Bishop @johnbishop and others with dry eyes from PN or other forms of neuropathy, please take care of your eyes. On Thursday, it was discovered by my opthomologist that I am now losing cells in my right eye. So we are attacking that issue with a new medication, Xiidra. It helps retain moisture better than Restasis. It too should be kept in the refrigerator. I will also have to increase the wet hot compresses. The battle has begun in earnest. And I will do everything I can to win.

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I’ve not had negative results with Xiidra, but they do leave a bad taste in your mouth. They work well on moisturizing your eyes, but are expensive.

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@artscaping

For John Bishop @johnbishop and others with dry eyes from PN or other forms of neuropathy, please take care of your eyes. On Thursday, it was discovered by my opthomologist that I am now losing cells in my right eye. So we are attacking that issue with a new medication, Xiidra. It helps retain moisture better than Restasis. It too should be kept in the refrigerator. I will also have to increase the wet hot compresses. The battle has begun in earnest. And I will do everything I can to win.

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The short time (about 2 months) I used Xiidra, it worked great for my dry eyes, but I had to discontinue since insurance wouldn’t cover it.

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@parus

I have not ever heard life is fair…I hear others say this and I do not comment w/ the usual reply…I do not comment as I do not have the answer.

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@parus I agree that life is what it is. It’s also what we make it, though many things are out of our control.

Jim

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@artscaping

For John Bishop @johnbishop and others with dry eyes from PN or other forms of neuropathy, please take care of your eyes. On Thursday, it was discovered by my opthomologist that I am now losing cells in my right eye. So we are attacking that issue with a new medication, Xiidra. It helps retain moisture better than Restasis. It too should be kept in the refrigerator. I will also have to increase the wet hot compresses. The battle has begun in earnest. And I will do everything I can to win.

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Thanks. I did read up on it a bit. I am just doing a one month trial to see if it helps control the cell loss. Than I will have to battle the insurance company if it does work.

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@artscaping

For John Bishop @johnbishop and others with dry eyes from PN or other forms of neuropathy, please take care of your eyes. On Thursday, it was discovered by my opthomologist that I am now losing cells in my right eye. So we are attacking that issue with a new medication, Xiidra. It helps retain moisture better than Restasis. It too should be kept in the refrigerator. I will also have to increase the wet hot compresses. The battle has begun in earnest. And I will do everything I can to win.

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Thank you. I was just diagnosed with neuropathy recently- I have burning pain in both of my legs – a few other things too – not sure if they are related though. I have another appointment with another neurosurgeon on August 31st. I didn’t realize their was cell loss with neuropathy.. I have horrible pain when I go to bed at night – and they found a very small sheath tumor on my nerve root – L5 so I’m wondering. This whole neuropathy is confusing because everyone is so different. I have never been on chemo or do I have diabetes. I do have osteoporosis and lower back arthritis & herniated disk. I also have Polycystic Liver & Kidney disease – I had 3/4 of my liver removed about 16 years ago and a kidney transplant actually almost 11 years ago. I have aches and pains sometimes arms and shoulders but just thought that I’m getting older so par for the course..lol – I have many questions.
Thank you so much for sharing!
pk

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