Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@johnbishop

Hi Rick @rickhood, Reading your story kind of feels little like my own story. My wife always told me I walked like an old man even when I was in my 50s and thinking I was still young which is when I first noticed my neuropathy numbness 🙃. Now in my late 70s, I still have the numbness but am still doing relatively OK. I posted my story in the Member Neuropathy Journey Stories: What's Yours? discussion here https://connect.mayoclinic.org/comment/310341/.

My diagnosis in 2016 through the Rochester Mayo Clinic neurologist was idiopathic small fiber peripheral neuropathy but since I also have no pain and just the numbness I wasn't too happy being told that there are no real answers or treatments to help with numbness. This was what brought me to Connect. If I wasn't confident in my diagnosis, I think I might try seeking help at a major teaching hospital or health facility like MGH or Mayo.

I've been overweight most of my adult life until the past few years when I got serious and knew I had to make some changes. I've also been told by all of my primary care docs that I have prediabetes. Really didn't believe them but I have started seeing the light a little more after doing some research into the Metabolic Syndrome. Here are some references if you want to do a little digging.

— Diagnosis and Management of the Metabolic Syndrome: https://www.ahajournals.org/doi/10.1161/circulationaha.105.169404
— The metabolic syndrome – What is it and how should it be managed?:
https://journals.sagepub.com/doi/full/10.1177/2047487319886404
— A comprehensive definition for metabolic syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
— The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
— Metabolic syndrome as a risk factor for neurological disorders: https://pubmed.ncbi.nlm.nih.gov/21997383/

Since you mentioned you are also working on your weight which I think is an important piece of the puzzle, you might also want to join in the following discussion.
— Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

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Thank you John. One of the neurologists said I have prediabetes, my primary does not say that, not sure why. But anyhow I guess I really need to get the weight off and see what that does. Thank you for the links, I will check those out!

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@kwfinnie

Hi,
Has anyone experienced neuropathy caused by an autoimmune disease? Also does anyone know what treatments Johns Hopkins has to offer? Thanks. Kathy

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Hi Kathy. I also have PN caused by autoimmune disease. I have Sjogrens. I also have a dr t JHH. If you would like to discuss er can figure out a way to exchange contact info. Doreen

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@drolker

Hi Kathy. I also have PN caused by autoimmune disease. I have Sjogrens. I also have a dr t JHH. If you would like to discuss er can figure out a way to exchange contact info. Doreen

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Doreen @drolker – You can easily exchange contact information using a private message to another member. You just need to click on their member name and then click the Send private message at the bottom of the profile description.

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@johnbishop

Doreen @drolker – You can easily exchange contact information using a private message to another member. You just need to click on their member name and then click the Send private message at the bottom of the profile description.

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Thanks! I didn’t know that

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@rickhood

I have peripheral neuropathy in my feet. It started all of a sudden in May 2019, in my left foot only. A detail is that it did not start in my toes, rather it started in the entire front of my foot (arch forward) all at once and all of a sudden. One neurologist told me that sugar related neuropathy always starts in the toes.

The only symptom is numbness, I have no pain really, and not really any tingling. I also have no muscle control issues.

A year later, May 2020, I also got it in my right foot – same thing, forward part of right foot. The numbness is gradually getting worse, very slowly, but getting worse.

The only other symptom is that it is starting to hurt to stand on my feet – it feels like there is a lack of padding in the bottom of my feet.

It is worst when I first get out of bed and stand on my feet. It is best after a walk (I walk 2x day for an hour each). Also using a massage machine on the bottom of my feet almost takes the numbness away, temporarily. Something about walking and massaging makes it better. I do know that walking drops the blood sugar also. It "feels" like that would be a blood circulation problem, but my doctor says that is fine.

I have been to two neurologists and "idiopathic" (no known cause) is the word they use. One of them did one of those electrical tests and did not find any really cause although he did say some possible indication the back could be an issue, but he though not. I don't remember the details.

I can live with the way it is now, but I worry it will gradually get worse, perhaps to the point where I cannot walk? I am 64 years old.

There is no "smoking gun" cause, but these are factors that I thought could be a cause:

1. I have low B12, but I take B12 shots.

2. My blood sugar is a bit high, fasting glucose is around 104 (99 or less is standard), but A1C is in range at around 5.2-5.5 (4.3-5.8 is standard range). My primary doctor says this is not the issue, although one neurologist said even slightly high sugar can cause neuropathy. I am overweight, at 6-1 I am 220 and should be around 185.

3. My lower back has an issue, but people have looked at the MRI and do not see anything that would be causing this. A chiropractor I went to for a while thinks the issue is in my lower back, and suggested a doctor who might give me a cortisone shot there. But that doctor also looked at the MRI and did not think it would help, but said to come back later for a follow up. It might be worth doing for diagnostic if nothing else. The MRI is around 2 years old now so perhaps I should get another done, if I can.

4. I have very tight calves, but stretching those does not seem to help.

I really need to get the weight down to see it that somehow helps, working on that. 😉

Anyhow, if anyone has any thoughts, I would appreciate it.

Also, I don't feel like anyone I have been to has checked out all possible causes. I live in MA so wonder where the "best" place to go for this would be – MGH or other?

Thanks,

Rick

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Hi Rick- I have PN from spinal issues, my feet are also numb and hurt when up on them. I found 2 shoe brands for inside and outside wearing that really help. Inside: Uggs Koolaburra- they have stiff sides and back, so they are easy to push on/off and don’t slide out of place or semi-off without you knowing. They have a low non- skid rubber bottom, which really helps with safety on all indoor surfaces. They have a mesh-top so are “breathable” and a low “fluff”sheepskin-type lining which adds to the cushioning and comfort. For outside shoes- I have Brooks running shoes with mesh top (Dick’s Sporting Goods) and also 2 pairs of “casual” from Orthofeet “ (online shopping)- they come with cushion inserts to set up as you prefer, a wide toe box and very comfortable cushioned soles.
Have you made your home safer? Suggest remove all throw rugs, use a shower mat, careful on stairs- all because you’re not feeling things on your feet as you once did. Good luck and welcome!

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@maureenb

Thank you for your response. I couldn't agree with you more on keeping active. Before the pandemic I played pickle ball twice a week, did Tai Chi once a week and rode by bike. Like all of us things changed a few years ago. Now, me and U-tube exercise together, I do weight exercises (not more than 8 lbs as I am a light weight), do 20 minutes of walking cardio and practice my Tai chi, In nice weather my husband and I still went on bike trips, but right now that is out of the question as we don't have snow tires on our bikes….lol

I was getting into a pretty good daily routine with my actives. However, things kept happening to me that prevented me from exercising, but once I got better, I would rebuild myself back up again. It can take awhile to get motivated again, but I would eventually get back into my routine. At the beginning of Dec I had squamous cells below my eye and had MOE'S surgery to remove it and they had to do a skin graft. I was unable to lift anything heavy or bend over for several weeks. I have to admit that each time I have to stop my exercises it takes me longer to get going again. I could have started doing my exercises again about a week earlier than I did, but I will blame it on Christmas 🙂

After Christmas was over I couldn't procrastinate any longer. Being 69 my balance isn't like it was when I was 30 but still pretty good. Tai Chi has a lot of moves that require balance and I was able to do them. That is one reason I noticed that the neuropathy in my feet was making my balance bad, because I was having trouble doing those moves. Now, when I do Tai Chi I have to concentrate a lot harder to do the balancing. It isn't like it used to be but I think the Tai Chi is helping my stability get a little better.

Good grief…..I wasn't planning on writing so much and I am sure it is more than anyone wanted to know. Anyways, thank you for reminding me of the importance of staying active and even though I have started my routine again you did give me more motivation to up my game and keep moving forward, doing the best I can do.

Maureen

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I can't agree more about the benefits of exercise. The kinds of activities in which each of us can engage will vary according to the disabilities with which we are dealing. However, a daily routine that includes physical activities is bound to be beneficial.

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@drs22

I have PN from my toes to my knees. I try to stay active like others mentioned above. Lately, I have found that my ankles are becoming very stiff and I feel tightness in my midfoot as well. I had ankle fusions on both feet a few years ago but my ankles feel stiffer than they did when I first got out of a cast. I was just curious if others with PN had stiffness in their ankle and/or tightness in the midfoot. Thanks.

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Yes. This probably my main issue. Because of this my balance is off and foot sensation is compromised.

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Hello, I relate closely to your situation. I am using a walker (one that bends in and out) and am fearful of falls. It seems as if we can invent electricity to move trucks down the road that science should be able to move us with more efficacy. I am 74 and have been working with PN since my 40's…most tell me there is nothing they can do to help me be better. Has anyone worked with auto immune disease and PN? Auto immune disease and cognitive impairment?

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@johnbishop

I have stiffness and tightness in my ankles but I think mine may be from wearing compression socks and not my neuropathy. Does moving around or walking remove the stiffness for you?

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Thanks for your reply. I am currently trying some physical therapy. The stiffness is there most of the time but does seem to be worse at night or if I've been on my feet for a while. Hopefully, the PT will help a little. It's uncomfortable but I think I worry more about the progression of the PN. This stiffness and tightness are new so I wonder what's next. Actually one of my physical therapists suggested wearing compression socks to see if that helped. I only tried it a day or two and didn't notice much difference.

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@centre

Hi Rick- I have PN from spinal issues, my feet are also numb and hurt when up on them. I found 2 shoe brands for inside and outside wearing that really help. Inside: Uggs Koolaburra- they have stiff sides and back, so they are easy to push on/off and don’t slide out of place or semi-off without you knowing. They have a low non- skid rubber bottom, which really helps with safety on all indoor surfaces. They have a mesh-top so are “breathable” and a low “fluff”sheepskin-type lining which adds to the cushioning and comfort. For outside shoes- I have Brooks running shoes with mesh top (Dick’s Sporting Goods) and also 2 pairs of “casual” from Orthofeet “ (online shopping)- they come with cushion inserts to set up as you prefer, a wide toe box and very comfortable cushioned soles.
Have you made your home safer? Suggest remove all throw rugs, use a shower mat, careful on stairs- all because you’re not feeling things on your feet as you once did. Good luck and welcome!

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Hi @centre-Can you post a shopping link (e.g. Amazon) for the Uggs Koolaburra you reference? I can't find the ones with mesh you mention.
Thanks

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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I am 71 yrs young and I have lived with PN for over 10 yrs. I visited Mayo in Jacksonville in 2011. I was seen by a Neurologist and had several tests, especially for MSA. The majority of the test returned normal except Sweat test, balance and body response to other stimuli. I have digestive problems, constipation and/or diarrhea. I have pins and needles over most of my body and head. The Dr. said I had a slight sign of Parkinsonism. I take pregabalin (Lyrica) for pain. The Doctor told me that HEAT and Alcohol were my two worst enemies. Anyone else???

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Too much alcohol makes my feet worse.

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