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?

Hi. My name is Carol. I am familiar with Mayo Clinic connect and known by summertime 4. However, Carol is my name and I have no problem sharing that.. I was recently diagnosed with idiopathic peripheral neuropathy. This diagnosis came about after a nerve conduction test with also the electrical shock. I have many of the classic symptoms which include awful pain in y left foot and toes. Of course numbness in both legs and an inability to walk without the risk of tripping. As for the idiopathic. I have not seen a doctor since this diagnosis so hopefully they will try to find a cause if there is one. I have been prescribed Gapapentin 600 mg for fibroyalgia so they may increase that. If anyone has any information they can share with me I would appreciate that. Thank you.

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Carol again adding to above. I have significant swelling of my left foot and toes. I was told that sometimes Gapapentin can cause swelling. Has anyone experienced this from Gapapentin?

Liked by Dee

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@summertime4

Carol again adding to above. I have significant swelling of my left foot and toes. I was told that sometimes Gapapentin can cause swelling. Has anyone experienced this from Gapapentin?

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Hi Carol @summertime4, I also have nueropathy which has been diagnosed as idiopathic small fiber PN. I only have the numbness and no pain. I posted what helps me in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also have a few other autoimmune conditions and have swelling mostly in my right leg which went on for quite awhile before I was diagnosed with lymphedema. The treatment for my diagnosis is the fun of wearing compression socks (knee high). Have you asked your doctor about the swelling in your left foot and toes?

I have no medical training or background but I wouldn't think the Gabapentin is responsible for the swelling. Here's a list of the side effects: https://www.rxlist.com/neurontin-side-effects-drug-center.htm#overview

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@summertime4

Hi. My name is Carol. I am familiar with Mayo Clinic connect and known by summertime 4. However, Carol is my name and I have no problem sharing that.. I was recently diagnosed with idiopathic peripheral neuropathy. This diagnosis came about after a nerve conduction test with also the electrical shock. I have many of the classic symptoms which include awful pain in y left foot and toes. Of course numbness in both legs and an inability to walk without the risk of tripping. As for the idiopathic. I have not seen a doctor since this diagnosis so hopefully they will try to find a cause if there is one. I have been prescribed Gapapentin 600 mg for fibroyalgia so they may increase that. If anyone has any information they can share with me I would appreciate that. Thank you.

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@summertime4, Hi Carol, I am currently waiting for my EMG which is June 12th. I also have some type of neuropathy. I believe I had small fiber neuropathy for the past 15 years only I think it may have progressed to the large fiber, motor nerves. This is just my feeling after researching everything that I can. I know how frustrating it can be to hear that word “idiopathic”. My left foot is the worst as well with lots of pain and toe twitching, although I don’t have swelling but I have recently noticed some muscle atrophy in both feet. I can walk still, but not very much, just a little around the house mainly. I also have Fibromyalgia and I know that people with FM can get neuropathy. I take 600 mg. Gabapentin and 50 mg. of Amitriptyline. The combination helps me sleep which I am thankful for. You might ask for another medication to go along with the Gabapentin for pain relief. I hope that your doctors will look further into finding a cause for your neuropathy. I know how truly difficult it can be. Please take care. -Laura

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@summertime4

Carol again adding to above. I have significant swelling of my left foot and toes. I was told that sometimes Gapapentin can cause swelling. Has anyone experienced this from Gapapentin?

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Hi Carol, I have small fiber neuropathy in both feet with the numbness going upward nearing my knees. I also have, despite the numbness, a great deal of pain in both feet along with swelling of feet and ankles that has been dx as Complex Regional Pain Syndrome. I do not take any meds for it as I am allergic to just about everything! I do take diurectics and use lidocaine prolocaine cream along with lidoderm patches. I use a power chair around the house and a cane outside. I see pain management and have obtained relief for a short period of time. I also have a spinal cord stimulator implanted that is great for letting me do what I am able. It is tough when your feet hurt all the time. Haven't been able to learn how to walk on my hands yet. Keep talking and searching. It does one so much good as well as helping others.

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Thank you for this group as I am finding out that there are many more who are worse off than myself and that really hurts my heart. My SFN Idiopathic is a foot full ; ) to deal with as it is. Learning to deal with a medical condition is not an easy task . some how learning to live with your NEUROPATHY and redirect the pain which again not an easy task. I will report that it seems at times that mine gets better, maybe the nerves SFN are repairing themselves which someone talked about this morning. I am very fortunate to not have Large Fiber LFN. Everyone just hang in there and somehow help someone else in the process, as that seems to help out a little by redirecting the pain in some positive way and direction. MicTim

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@mictim

Thank you for this group as I am finding out that there are many more who are worse off than myself and that really hurts my heart. My SFN Idiopathic is a foot full ; ) to deal with as it is. Learning to deal with a medical condition is not an easy task . some how learning to live with your NEUROPATHY and redirect the pain which again not an easy task. I will report that it seems at times that mine gets better, maybe the nerves SFN are repairing themselves which someone talked about this morning. I am very fortunate to not have Large Fiber LFN. Everyone just hang in there and somehow help someone else in the process, as that seems to help out a little by redirecting the pain in some positive way and direction. MicTim

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Thank you all for the feedback. I am sitting here right now is bad pain. My foot and leg below the knee are so swollen they look and feel like they are going to pop. I did take a percocet about 2 hours ago which help decrease the pain. It is back now. My toes are so swollen I cannot move them. I had to cancel lymphedema therapy today because I was having electrical work done in the house. I don't see the neurologist until May 22 so I have no clue what type of neuropathy except for peripheral. The cardiologist said the reason all the pain and swelling is on my left side is because the damaged nerve is probably on that side. My quality of life is so diminished and with my depression and pain it is worse. I am alone here. I lost my husband 14 months ago from cancer. I feel the doctors waited too long to address my pain and physical problems always using grief to account for everything. Well I don't think it has caused neuropathy. In tears right now.

Liked by Dee

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@summertime4

Thank you all for the feedback. I am sitting here right now is bad pain. My foot and leg below the knee are so swollen they look and feel like they are going to pop. I did take a percocet about 2 hours ago which help decrease the pain. It is back now. My toes are so swollen I cannot move them. I had to cancel lymphedema therapy today because I was having electrical work done in the house. I don't see the neurologist until May 22 so I have no clue what type of neuropathy except for peripheral. The cardiologist said the reason all the pain and swelling is on my left side is because the damaged nerve is probably on that side. My quality of life is so diminished and with my depression and pain it is worse. I am alone here. I lost my husband 14 months ago from cancer. I feel the doctors waited too long to address my pain and physical problems always using grief to account for everything. Well I don't think it has caused neuropathy. In tears right now.

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I’m so sorry for your pain and feelings of sadness. I’m praying for you. Hopefully, you will feel a little better tomorrow. 🙏🙏🙏🌈😁

Liked by Dee, elizabej

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@summertime4

Thank you all for the feedback. I am sitting here right now is bad pain. My foot and leg below the knee are so swollen they look and feel like they are going to pop. I did take a percocet about 2 hours ago which help decrease the pain. It is back now. My toes are so swollen I cannot move them. I had to cancel lymphedema therapy today because I was having electrical work done in the house. I don't see the neurologist until May 22 so I have no clue what type of neuropathy except for peripheral. The cardiologist said the reason all the pain and swelling is on my left side is because the damaged nerve is probably on that side. My quality of life is so diminished and with my depression and pain it is worse. I am alone here. I lost my husband 14 months ago from cancer. I feel the doctors waited too long to address my pain and physical problems always using grief to account for everything. Well I don't think it has caused neuropathy. In tears right now.

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Dear Summertime ,
You are not alone !!! I feel your pain from here . I hope where you are that you are finally asleep . I am so sorry about your loss . There are so many searching for answers , myself included . I will start the protocol in July when I am home working instead of traveling for work. I am on Gabapentin 600 and like many hate being on it . My doctor wants me to double it but I can not talk right ,walk right or remember what the hell I’m doing . But have to say without it right now it is unbearable . I wish you peace in your journey and we all have mind and body work ahead of us .

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Hi Carol, I am sorry for your loss, my condolences to you. I also have idiopathic neuropathy, my doctor says she just can't determine the cause. She is great and I trust her so I am left to deal with the reality. I my suspicions, such a a bad back with nerve issues, but it really doesn't matter at this point. I take 2700mg of Gabapentin a day, alot I know, but the pain without it is unbearable. I also take tegratol for muscle cramps, without it my foot will cramp all night causing me a bunch of pain. I have altered my diet some, limited my alcohol intake, and walk as often as possible. As you can tell by the responses, we all suffer in some way, and battle this horrible condition the best we can. take care of yourself, keep talking to us or whoever you can, remember you have our group anytime you need us, we are in this together! Take care.

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Happy Friday!
I received my leg brace this week. There is certainly a difference with the way I walk. The front of my right foot lifts when I walk. I am hoping this will help with my falling.
On the other side, I feel the neuropathy in both feet getting worse. My right foot is the worse, but I am feeling that both sides are getting weaker.
Is this common? Do your legs, ankles and feet get weaker?
In addition, my right foot (the worse one) swells. Is this common, too?

Have a great day!
Ronnie (GRANDMAr)

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@grandmar

Happy Friday!
I received my leg brace this week. There is certainly a difference with the way I walk. The front of my right foot lifts when I walk. I am hoping this will help with my falling.
On the other side, I feel the neuropathy in both feet getting worse. My right foot is the worse, but I am feeling that both sides are getting weaker.
Is this common? Do your legs, ankles and feet get weaker?
In addition, my right foot (the worse one) swells. Is this common, too?

Have a great day!
Ronnie (GRANDMAr)

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Hi Ronnie @grandmar, Happy Friday indeed! I'm happy to hear you received your leg brace and hoping that it will make a big difference. My legs, ankles and feet certainly seem a lot weaker than they used to be. I know that periods of inactivity make it worse for me so I try to keep moving and doing some sort of non strenuous light exercise. Have you thought about or tried yoga? I have been thinking about starting some when my leg gets all healed.

John

Liked by Dee, grandmaR

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@johnbishop

Hi Ronnie @grandmar, Happy Friday indeed! I'm happy to hear you received your leg brace and hoping that it will make a big difference. My legs, ankles and feet certainly seem a lot weaker than they used to be. I know that periods of inactivity make it worse for me so I try to keep moving and doing some sort of non strenuous light exercise. Have you thought about or tried yoga? I have been thinking about starting some when my leg gets all healed.

John

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@johnbishop
Thank you, John!
I have been thinking about all sorts of activities.
My concern with yoga is my lack of core strength and my instability.
I suppose I can look on YouTube to find a program for people like me.
I have been getting into the pool.
I do all sorts of exercises.
I do the exercises I did in PT as well as swim laps, every other day.
I am also working on my stability in the pool.

Have a fantastic weekend!
Ronnie

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@grandmar

@johnbishop
Thank you, John!
I have been thinking about all sorts of activities.
My concern with yoga is my lack of core strength and my instability.
I suppose I can look on YouTube to find a program for people like me.
I have been getting into the pool.
I do all sorts of exercises.
I do the exercises I did in PT as well as swim laps, every other day.
I am also working on my stability in the pool.

Have a fantastic weekend!
Ronnie

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I’ve been doing yoga for about 25 years and had to stop Vinyasa (flow) because of of worsening balance. Now I do Yin and Restorative types, which use props like bolsters and blocks. It requires very little standing but has lots of static stretching and meditative breathing. It’s fantastic. I am also trying to do more recumbent biking at The Y because it’s hard to get good cardio exercise with limited mobility.
BTW.. has anyone been diagnosed with CMT, Charcoal, Marie Tooth disease?

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I am Jeanray…….Live in Florida. Diagnosed this week with peripheral neuropathy. It manifests mostly in my right leg, but also goes into the left leg and feet. I have had numbness in my goes and feet for some time. No indication of being diabetic. I do have some low back pain, I had a fall last summer and had a "bone bruise" on my right knee?? One thing that comes to mind is that I've had restless leg syndrome from time to time at night since I was in my 20's….I am 78. Doctor suggested Lyrica might lesson the symptons, has anyone had experience with that……

Liked by Dee

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