Member Neuropathy Journey Stories: What's Yours?

Thank you, Chris @artscaping and John @johnbishop for your thoughts. I just read up on restless leg syndrome and I don't have any urge to move my leg, and moving makes no difference in the pains. This is an all-of-the-time problem, not just at nighttime. Also, my understanding is that Gabapentin works well for many people with restless leg syndrome, and it did nothing for me. Thus, I don't think that is my problem. Chris, when you say your leg is "harmless" I'm not sure what that means. Are you currently pain free because of the therapy? The massage therapy sounds interesting and I think I will pursue that for possible relief. It certainly won't hurt to try and, if it works, I will be a happy camper! Thank you both; I sincerely appreciate getting your suggestions.

@trieste, Harmless......means can’t hurt me anymore.
Chris

So happy to hear! Thanks again!

I was diagnosed with mild Idiopathic Neuropathy about 2 years ago . Symptoms have increased: Numbness and burning sensations, and sometimes cramping, from my knees to the bottom of my feet. The symptoms have gotten worse which led me to see my doctor who is a GP. Sleeping was difficult and I also have a sleep problem and use CPAP machine. I have had both knees replaced. One 13 years ago and the most recent one 2 years ago. With the last replacement I was swollen and bruised from my groin to my toes on the left side of my body. Over a period of several week this subsided.

The neuropathy symptoms have gotten worse and I have been told nothing can really be done by my General Practitioner. He has ordered Gammapentin 200mg at bed time. I was reluctant to take it because the side effects worried me. I am also taking meds for hypertension. Losartan 100mg/ HydroChlorothiazide (Hctz).12.5 mg, Amlodipine 5 mg. & Clopidogrel 75 mg., for a suspected TIA I had 6 years ago. From what I have researched, Losartan and Amlodopine side effects include neuropathy. Although i have not had an attack of Gout on Allopurinol in over 10 years, I was told that the Hctz caused the Gout and it was discontinued. I have not seen a neurologist. Despite this, I am a high functioning 87 year old, who runs a household and takes care of a husband on hospice. I am worried about disability in the future with this diagnosis. I am interested in hearing about other experiences wit this diagnosis.

Happy to find this group as I believe that education seems to be a priority here. Support is wonderful, but at this point I am all about learning and understanding what is going on in my body, why it is happening and what should I be doing about it.
My neuropathy story is almost identical to John's. Neuropathy began five years ago (at age 66) with mild numbness in toes, then feet, ankles and now working up to the knee. Never consistent; severity and location varies day to day. More annoying than painful.
I have had enough testing done to be "diagnosed" with Polyneuropathy and my neurologist stated that he believed it would not progress. He recommended B1, D3 and B12 supplements and said I could come back anytime! I can't just let it be at that. I NEED to know! I have many questions and so, the research began. After a few leads from this group, especially Dr. Matthew Jensen's YouTube videos, I have a better understanding of my particular situation, some possible thoughts relating to cause and a better understanding of what might or might not be done about it.
My neuropathy? I have a Peripheral Neurological Disorder resulting in Polyneuropathy (nerves: currently manifesting as numbness in the lower limbs) and some minor indications of Myopathy (muscles: manifesting as slight loss of motor control in the hips.) I do not know to what extent this is Axonal loss/damage or Demyelination. I'd like to know how that is determined as it may give me a better understanding as to cause and outlook.
Background: No family history of neuropathy, but definitely diabetes and cardiovascular disease. My active and healthier lifestyle seems to have prevented those. I have always had high cholesterol and arthritis. Never treated either with medication. But, when the hips were far gone I had them replaced, five years ago! My neurologist seems to feel that was the culprit, but there are a few other possibilities including a rear-end car accident shortly after the hip surgeries. And maybe my 20+ years of high cholesterol??? What about blood sugar levels, though I'm not diabetic??? Vitamin and/or mineral deficiencies that have been tested??? I would like to dig a little deeper because there may be some contributing factors and those may determine what if anything I can do to stop the progression (if there is going to be any) of this disorder.
As for "treatment" I have tried many approaches over the last 3-4 years, giving each it's dedicated time and effort, but not always in the most organized manner. I've done plenty of physical therapy, TENS, vibrations plates, some minor attempts at spinal decompression, daily exercise, and of course the classic supplements including B1, B12, D3, Alpha Lipoic Acid, Biotin, fish oil, turmeric and will be adding Magnesium and Aloe Vera (for the cholesterol) this week. I also experimented with doing absolutely nothing for a few months.
Have I seen changes? Yes, daily; but completely random. Sometimes better, sometimes worse, Sometimes here, sometimes there! Nothing seems to have made a permanent change in the condition for good or bad. It clearly is "progressing" since five years ago it was only at my toes and now sometimes I feel numbness in my calves and shins. But, will that continue? Yes, or no, I'd like to know WHY.
So, onward I go, learning and looking for answers. But, trying not to obsess over it!

Hello @cameron2020, Welcome to Mayo Clinic Connect. Thank you for sharing your neuropathy journey experience. Your story is similar to mine. In addition to my idiopathic small fiber peripheral neuropathy, I have obstructive sleep apnea, use a CPAP plus I have high blood pressure caused by primary aldosteronism which I take spironolactone 25 mg and hydrochlorothiazide 25 mg daily. I take supplements to help with my neuropathy. They are not a cure but I do believe they have slowed or stopped the progression since I started taking them in 2016. I also have lymphedema in both legs but somewhat worse in my right leg and I wear 20-30 mmhg compression socks which don't do much to help with the way the legs feel but does keep the swelling down. When I was diagnosed with neuropathy in 2016 I started making some lifestyle changes trying to exercise more and eat healthier which I'm sure also has helped me some.

It is great to hear that you are a high functioning 87 year young person. A positive attitude and learning as much as you can about your condition and available treatments will help you in the long run. A couple of sites I have found helpful for learning about neuropathy are

- Neuropathy Commons: https://neuropathycommons.org/
- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You mentioned numbness, burning sensations and sometimes cramping in your legs. Have you discussed the symptoms with your doctor?

Just wondering if it might be similar to some issues I had with swelling in my legs before I was diagnosed with lymphedema. The main thing my doctor was worried about was a possibility of a DVT (deep vein thrombosis) or PAD (peripheral artery disease)
-- Mayo Clinic Q and A: Evaluating and treating leg numbness and cramping: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-evaluating-and-treating-leg-numbness-and-cramping/

Hello @mamamarch, Welcome to Connect. Thanks for sharing your neuropathy journey. I too have had 20+ years of high cholesterol along with 100+ pounds of extra baggage to carry around with me daily 🙂. I'm sure the extra weight contributed negatively to both my high cholesterol numbers and made it harder on my legs with the neuropathy. I've also done my share with PT, TENS units, a cheap inversion table to help with the back and various supplements before I settled on the protocol I'm currently taking (https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/).

I like your glass half full outlook. It will go a long ways helping you learn as much as you can about your condition and hopefully finding something that will help you. You mentioned having an active and healthier lifestyle seems to have helped you. I'm with you on focusing on both of those areas of my life. I think both have helped me the past couple of years since I've become more focused on it.

You mentioned you have some minor indications of Myopathy. There is a recent discussion here that you might want to view if you are looking to meet others discussing the condition - Non Specific Myopathy: https://connect.mayoclinic.org/discussion/non-specific-myopathy/.

The short answer to your question - Can You Stop Neuropathy From Getting Worse?: https://health.clevelandclinic.org/can-you-stop-neuropathy-from-getting-worse/

What have you found so far that has helped you the most?

So sorry to hear of your trouble. It must be so difficult. I have several illnesses but for now at least the Peripheral neuropathy is the most disturbing.

Hello, It is good to discover this site and begin to read through some of the stories others have posted. I sometimes feel quite alone in my struggle with neuropathy. It is difficult even for my beloved spouse to understand. I look well and continue to be very active--blessed in that way. I ski vigorously, walk several miles a day when that is not possible, bike during the summer, etc. But I hurt, too. And am mostly numb from the waist down. I am 67 years old, male, retired (mostly). My only other health concern is aortic stenosis. My heart functions well, but I will need a valve replacement in the next few years.

My story began as some of yours did, with a sharp pain in one toe in one foot. Nobody could figure out why. I saw a podiatrist, who removed the nail and another, who cut a tendon. No change. I could still do what I was doing, but end up with screamworthy pain at times. If I took off my shoe, it would pass quickly. Later, I noticed that the toes on that foot had become rather numb, especially the third and fourth toes. And then, a month or so after that, I noticed that the other foot was also becoming numb. I went to my GP; he diagnosed me with Morton's Neuroma and told me to buy wider shoes, which I did. Little improvement.

About that time, I had a cystoscopy done, to see if there was a way to manage frequent urination--prostate enlargement was not the problem it turned out. But instead, I ended up with a urinary tract infection. The doctors ordered cipro and within days, I had shooting, burning, prickling pain up and down my legs. Soon after, numbness set in. This was 7 months ago. Since, the burning pain and superficial numbness has crept up to my waist. I have also experienced burning and odd feelings of discomfort around my ribs and heart on the left side, and often, tingling and "falling asleep" feelings in my fingers on both hands, especially at night in bed. That can quickly be remedied by moving my hands, but it comes back quickly, too. I have no idea if that is related to the PN in my lower body.

I've been to Mayo twice and have another appt soon. So far, no diagnosis beyond idiopathic. Most tests are normal, although my autonomic reflex screen was somewhat strange. I need to have that repeated without taking certain medications. But to this point, the docs have ruled out some conditions and still do not have an answer as to why I am going through this, whether it will go away, continue to progress, etc. All of which makes me very, very anxious. I have a hard time thinking about anything else. Doc prescribed Gabapentin but it does not seem to help; rather, causes my vision to blur slightly and often, I have a slight headache. I am thinking of discontinuing it.

I am using an app called curable.com to try to reprogram my brain from focusing so exclusively on the pain. This has been the most helpful thing so far. Also: prayer.

But it feels pretty lonely and sometimes kind of hopeless. I desperately want to handle aging better than this.

Sitting is very difficult for me. An hour or so and I'm pretty uncomfortable. I desperately want to see my Mom (89 and not in good health) and two of our kids, all of whom live in the NW, far from us. So we are planning a trip. I must admit, I am concerned about traveling and discomfort--and I don't want to continually complain about my neuropathy sensations to my wife!

Well, thank you for listening and also sharing your stories. I hope to glean some helpful information from you and if nothing else, my story, will also help you to know that you are not alone in your suffering.

Yeah, I don't know that there are any easy answers, but from what I've heard and read, it is helpful to keep digging. Sometimes acupuncture and massage do seem to help people. And sometimes, according to my neurologist anyway, these things can fade or go away. You never know. Gabapentin did not help me, but my understanding is that there are some other meds worth trying. But meds also have side effects. I have found some help from an app called curable.com dealing with chronic pain. One of the images that I resort to is this: pain is like a merry go round moving fast. Remember that when you were a kid? Sometimes you'd be on the merry go round and other times, one of those pushing it. Fear/anxiety/focusing on that pain is like a person pushing the merry go round. The more you push, the worse the pain gets. But it's so hard not to keep thinking about it, keep asking what's next, will it get worse, etc. I'm working on not shoving that merry go round quite so much.