Worried about how quickly neuropathy progresses

Hello @minniemya and welcome to Mayo Clinic Connect. I can certainly understand your concern about neuropathy given your problems with balance and a broken foot. Balance problems are always a concern to us as we age. You are wise to be using a cane. The more support you have the safer you will be.

Since you posted in the Diabetes Endocrinology discussion group, I'm guessing that you have diabetes. Is that correct? Unfortunately, neuropathy is a side effect of diabetes.

I would like to invite you to the discussion groups that Connect has on the topic of neuropathy. Here is a link to those discussions, https://connect.mayoclinic.org/group/neuropathy/. As you can see there are many people dealing with this problem. I would like to invite @johnbishop to introduce you to these discussions as well as some members.

If you care to share more, do you have pain or just numbness? Has your doctor prescribed anything to help?

Hello @minniemya, I would like to add my welcome to Connect along with Teresa @hopeful33250 and other members. I think one of the best things you can do to help yourself is to learn as much as you can about your neuropathy diagnosis and available options you have for treating the symptoms. There is another discussion that you might find helpful by reading through the posts -- Has anyone tried treatment for diabetic neuropathy ?: https://connect.mayoclinic.org/discussion/has-anyone-tried-treatment-for-diabetic-neuropathy/.

@cehunt57, @bobf46, @davelobb12, @callalloo and others may have also have some suggestions.

@minniemya, Hi I’m Cheryl (@cehunt57).
I am diabetic and have struggled with neuropathy. It was two kinds, peripheral (mainly extremities) and autonomic (effects internal organs). The thing that helped the most was getting and keeping blood sugar under control. My diabetes has been a complicated journey; still is. I ended up having a pancreas transplant. That story is elsewhere. After that the peripheral neuropathy resolved. I do still have flare ups of the autonomic neuropathy. Mine effects my stomach and is called gastroparesis. My best takeaway is that if your neuropathy is related to diabetes, make that a priority. Diabetes cannot be separated from any other aspect of health (like your broken foot). It only complicates things like diagnosis, treatment and recovery. My hope and prayer for you is that your foot heals, neuropathy resolves and diabetes is controllable.

I have been diagnosed with idiopathic peripheral neuropathy. It started last year in May with numbness in parts of the soles of my feet. I ignored it for a while but in September I saw a doctor and was referred to a hospital. I saw a specialist in November and then did nerve conduction studies in January when I was confirmed with IPN.

For a long period at the start of last year I was eating a lot of sweet cakes and drinking a few glasses of wine every evening. It was speculated that the wine could have done it (but only if I am especially sensitive). I am not diabetic. Recently I am wondering if I am pre-diabetic.

My concern is that since the middle of February my neuropathy has worsened. My ankles are now a bit numb and stiff. And it has also reached my knees which now feel quite tight in the mornings. Walking feels like wading through 3ft of water. Foot pain comes and goes. Some nights are fine. Others are not.

My next appointment with a specialist is at the end of April.

Has anyone experienced such a rapid progression of symptoms similar to this ? If so, do you know the cause ?

Welcome @domokane, I'm glad to hear you are not ignoring the neuropathy symptoms. You will notice that we moved your post to an existing discussion on the same topic here:
--- Worried about how quickly neuropathy progresses: https://connect.mayoclinic.org/discussion/worried-2/.

If you click the link above, it will take you to the beginning of the discussion where you can read what others have shared helps them. I haven't experienced the rapid progression but there are others with similar experiences. My best suggestion or advice is to learn as much as you can about your condition and what treatments are available and to ask questions at your upcoming appointment with a specialist. I've always been labeled pre-diabetic and have often wondered how much of a part it played in my neuropathy. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Is your upcoming appointment with a neurologist?

I was diagnosed with IPN many years ago and the progression has been slow as to new areas, but faster as to degree of numbness in the original areas. That is still largely limited to my feet. I have a lot of stiffness (tightness?) throughout my body, particularly if I sit or lay down for long periods. I believe this is due to arthritis. This is lessened by getting outside and walking around the block. It is difficult to get started but the rewards are big. But then, the stiffness comes back as soon as I become inactive. I have been pre-diabetic for years. I, like you, go through periods where I eat a lot of sweets and am constantly trying to control this. However, my doctor told me that carbohydrates are a big contributor as well.

I think you might find the following discussion helpful. I also have a problem with eating too many carbs.
-- 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/

@domokane sorry to hear about your neuropathy issues. I'm always feel stiff when I first get out of bed, but that goes away fairly quickly. Various foot and legs pains when resting at night, some days, weeks and months are better than others. I also experience numbness and muscle fatigue/weakness from my HNPP. Sometimes I think everything is progressing too fast and get worried and then it subsides a little again after a few weeks or months. Your description of feeling like you are wading through 3 ft of water is very visual. I can't say I've felt that. I've always had a sweet tooth and sometimes felt numbness and tingling in my face after overdoing the sugar, but believed it may be hypoglycemia. I've had zero alcohol since I was pregnant 40 years ago, but I do remember that at 21 when I woke up with whole body numbness for the first time (not like novacaine, but the very very dulled sense of touch that has never stopped) it happened in college after drinking too much the night before so there could be alcohol connection. Coincidence? With HNPP the myelin sheath disappears in spots off the nerves leaving them very vulnerable to damage. I first had my hip go numb at 17 after overdoing a new exercise band. Repetitive motion can increase numbness for me. Stretching too far is bad for me too. Have you been doing anything very physical lately? The bottom of my feet are the worst for numbness. I've also had issues with various meds and supplements cause very strong pins and needles that can last up to 2 weeks after I take the meds. Are you taking anything new? I hope your specialist can provide some answers.

That’s a very helpful answer - thanks. Indeed it explains a lot as I have been coming to the conclusion that the change was so fast it was physical rather than chemical. And it also makes sense as I did do some hiking and biking a month ago thinking it would counter the effects of the rising numbness and then I did a daily hike two weeks ago just before it got much worse. Also, I drove for seven hours yesterday and by the end I was a bit stiff but last night I had no foot pain. I will try doing a very mild daily exercise for a few weeks and see if that helps and if there is any chance of recovery. Thanks !

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