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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@saki

Hi, I'm new to to this group, a senior, I have neuropathy in my left leg that causes me some sharp pain, usually at night in legs (both) and feet and usually brief. My main concern now is scalp neuropathy that was diagnosed more than a year ago and apparently is related to the leg neuropathy. Those symptoms are lack of feeling in some areas and hair rapidly disappearing. I can't find any information about this. Can anyone help? Thanks.

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Are you seeing a neurologist?
He needs to assess you pain, movement, muscles and nerves. Have you had any imaging such as MRI or EMG. Are you taking any medications for this and is it helping?
Neuralgia is very painful and makes life very difficult…..I am sorry you have to go through this….

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Hi Colleen,
My name is Brian, and have neuropathy. Due to several sports injuries, resulting in metal plates in left leg, right hip replacement, etc........My main source of exercise is swimming.
Since the chlorine in the pool dries out my feet so much, resulting is cuts, sores, ulcers......I have had to get 2 toes amputated on left foot. My podiatrist, dermatologist, and cardiologist all say there is nothing to prevent this, and to monitor daily, apply creams, and wear swim socks.
Up until my last amputation of 5 weeks ago, I have tried this approach, but now I am about ready to put away the goggles and start shopping for wheelchairs........not what I hope for my future

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@macirish

Hi Colleen,
My name is Brian, and have neuropathy. Due to several sports injuries, resulting in metal plates in left leg, right hip replacement, etc........My main source of exercise is swimming.
Since the chlorine in the pool dries out my feet so much, resulting is cuts, sores, ulcers......I have had to get 2 toes amputated on left foot. My podiatrist, dermatologist, and cardiologist all say there is nothing to prevent this, and to monitor daily, apply creams, and wear swim socks.
Up until my last amputation of 5 weeks ago, I have tried this approach, but now I am about ready to put away the goggles and start shopping for wheelchairs........not what I hope for my future

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Hi @macirish, Welcome to Connect. It sounds like you've looked into all the alternatives so that you could keep swimming for exercise. I'm wondering if you have seen this article that mentions chlorine drying out the skin -- Why Do I Get Dry Skin After Swimming?
No amount of lotion seems to cure dry, itchy skin after swimming, especially in the winter months. What can you do?: https://www.triathlete.com/gear/swim/why-do-i-get-dry-skin-after-swimming/

Have you tried showing after you swim and using moisturizing, liquid body soap to remove the chlorine?

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@johnbishop

Hi @macirish, Welcome to Connect. It sounds like you've looked into all the alternatives so that you could keep swimming for exercise. I'm wondering if you have seen this article that mentions chlorine drying out the skin -- Why Do I Get Dry Skin After Swimming?
No amount of lotion seems to cure dry, itchy skin after swimming, especially in the winter months. What can you do?: https://www.triathlete.com/gear/swim/why-do-i-get-dry-skin-after-swimming/

Have you tried showing after you swim and using moisturizing, liquid body soap to remove the chlorine?

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Hi John,
Thank you so much for responding. I have tried those remedies, with no real luck. My most serious issues are with the left foot, and that's the leg where I have numerous plates/screws due to a tib/fib fracture in 1995. I just had a Doppler done on my entire lower torso, and have excellent circulation throughout.
I am seeing my ortho doc (he did not perform tib/fib surgery) to discuss possible damage/infection from the trauma area .....Perhaps due to the length of time of the hardware in the leg??? I'm not even sure if that's possible. Still searching!!
Thank you

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@kimegraves

Are you seeing a neurologist?
He needs to assess you pain, movement, muscles and nerves. Have you had any imaging such as MRI or EMG. Are you taking any medications for this and is it helping?
Neuralgia is very painful and makes life very difficult…..I am sorry you have to go through this….

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Thanks, yes I do see a neurologist who has done assessments and mri, and also medication that helps. So far the neuropathy is manageable. John provided me with links to a couple of websites on neuropathy that I found helpful, and I hope to learn more as time goes on.

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Does anyone else have a time every night like 9 o'clock when pain starts in feet,legs and hips from neuropathy?

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Hi Colleen, I am new here and would be grateful on information relating to feeling of pulses and tingling all over my body as well as burning sensation around the waist

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@philipwest

Hi Colleen, I am new here and would be grateful on information relating to feeling of pulses and tingling all over my body as well as burning sensation around the waist

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Welcome @philipwest, The symptoms you are describing do sound like some type of condition that affects the peripheral nerves including peripheral neuropathy. Mayo Clinic has more information on the symptoms here - https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

Have you discussed your symptoms with your doctor or been diagnosed with neuropathy?

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@johnbishop

Welcome @philipwest, The symptoms you are describing do sound like some type of condition that affects the peripheral nerves including peripheral neuropathy. Mayo Clinic has more information on the symptoms here - https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

Have you discussed your symptoms with your doctor or been diagnosed with neuropathy?

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Thanks for your reply...
Yes, he said i have nerve pain from prolonged sitting but it's been a year plus already and no relief at all

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@philipwest

Thanks for your reply...
Yes, he said i have nerve pain from prolonged sitting but it's been a year plus already and no relief at all

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Did your doctor suggest any treatments for the pain? There are some complementary and integrative treatments listed on the Foundation for Peripheral Neuropathy site you might find helpful here - https://www.foundationforpn.org/treatments/

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