My Story

IH8PN · 02-12-2015, 01:22 PM

I hate to say it, but no my PN is not gone. I've stayed away from posting for 2 reasons. First is I'm not sure much has changed for me in the past few months. Second is I feel I'm better off mentally if I find ways to distract myself from my symptoms rather than dwell in them. Posting may bring some baggage with it as I bring to light all the things I hate about this disease. I'd much rather distract myself.

I can echo the sentiments of many when I say that some days I feel like I'm getting better, some days it feels worse, and other times I think I'm just getting used to it.

The PN in my feet is 95% related to pressure, meaning that the pain in the soles of my feet steadily worsens when standing and tapers off fairly quickly when I sit. The other 5% is random twitching, prickling, and feelings of coldness that seem to come and go on their own.

I have been pretty good about taking better care of myself the past 3 months. Diet has gotten better with more fruits and vegetables, exercise 3-4 times a week on the bicycle, alcohol and junk food way down, and still a steady dose of supplements. I haven't noticed a significant change in pain levels with or without the above, but I feel better mentally knowing that I'm taking care of myself.

Tried capsaicin the other day because at this point I'm willing to try anything. That was a bad idea. awful burning that started a few hours after application and didn't die off until 24 hrs later. I know there were warnings from others on here about capsaicin but I had to try it for myself. I'll never do that again for what its worth.

My neurologists sucks. I told him the gabapentin wasn't working and that I'd like to taper off and try something else. He wanted me to see how I felt without the gabapentin first. I'm sick of having to suggest ideas and beg for help. Shouldn't my MD be the one to offer suggestions and help? I'd like to get off medications anyway so I'm not going to stress about not being offered an alternative to try. My next course of action may be to try and get a hold of a compound cream if I were to try a new medication.

IH8PN · 05-25-2016, 11:14 PM

It's been quite awhile since I've posted any updates. I apologize as I was hoping to post regularly as both a journal and a case study.

In general things have changed very slow or often, but I have something I'd like to share. I often hear that neuropathy improves or changes very slowly. I'd have to say that in general my "good days" have been better and more often.

I still can't pin point and cause or effect. It's maddening to have "good days" followed by "bad days" when you have no idea what the reason is.

Yesterday I had quite a bit of pain. Standing and walking were very uncomfortable. It's usual so while it took a toll on me physically and mentally, it's not something I'm not accustomed to.

Well today was a great day and I don't know why. If I did I'd do whatever it took to feel this way I'd do it everyday. I don't expect to feel this way tomorrow as I rarely string together multiple days being pain free.

As a result I did everything I could that required being on my feet. I played with my kids and did as many chores around the house as I could fit in.

It's definitely a mind trip to go back and forth between hope and despair as the pain waxes and wanes without notice. I try to stay strong as thoughts of despair consume my mind. I don't know if i'll ever get back to normal. It's been almost 3 years and while the neuropathy has improved noticeably, it's hard to believe i'll ever feel normal again.

I still check on the board once a week or so to see how people are doing. Stay strong. It's hard. I know. I struggle everyday and I know how hard it is to push on. Let's fight this disease together. One day we'll have a way to combat this, or at least manage this. Thank you all for your involvement on this board, it is more valuable than you know to fellow members.

Sorry if this post seems to rambles on. I jhave so much going through my head that it's hard to put into words. Goodnight all!!

MikeK · 05-26-2016, 10:00 AM

Your story sounds so familiar, the really good days followed by the bad days.

For me since my back surgery the pain has been reduced greatly. The pain from my back to my feet is almost gone, the burning and tingling is still there some days are better than others. For me the biggest plus is prior to the surgery I came to dread the really good days since I knew what was going to follow wouldn't be pleasant. Now I don't have that fear.

Keep exercising & moving, one foot in front of the other is my mantra.

Best of luck & I hope you continue to improve

IH8PN · 02-21-2017, 12:57 AM

I definitely haven't kept up with my symptom diary like I had originally planned so I think it's time for an update. I think the slow progression and or regression is so gradual that it's hard to know when things are changing. With the highs and lows you don't want to assume anything until you've had some consistency with symptoms.

The beginning of the year seemed like a perfect time to push through and focus on my health. I cut back from drinking once or twice a week to no alcohol at all in 2017. I also decided after finding my clothes no longer fitting appropriately that it was time to lose some weight as well. I've gone with a pretty srtrict low carb diet the last month or so and have begun fasting twice a week for about 36 hours at a time. I'm down about 10-15 lbs depending on the time of day and how hydrated I am. Fasting really causes the body to let go of the extra water so it can fluctuate a lot day to day. I even bought some basic wieght lifting equipment and am planning on putting together a home gym in a spare room at the house. I made some serious changes cold turkey and am surprised how disciplined I have been even if its been less than 2 months. Part of making a life style change is making it a habit.

It could be my nerves have healed or just taking care of myself has decreased symptomatic pain in my feet. Either way I can say that the past week I have had the least amount of pain I've dealt with in the past 3+ years. If it requires the sacrifices I'm currently making to have a reduction in pain I think I can keep this up. When you experience excruciating pain the discomfort from fasting, not drinking alcohol, not eating sugar, and exercise is nothing. I can say for certain that yesterday was the least amount of pain I've experienced in a 24 hour period since my neuropathy peaked. I hope the next time I add an entry to this thread I've have either remained at this level or improved some more. Time will tell.

Usif · 06-28-2017, 10:36 PM

You are such an inspiration to all of us. Thank you for posting updates. This is giving me hope

springsjean · 04-04-2018, 12:03 PM

Quote:

Originally Posted by IH8PN

Not the end of the week, but I feel the need to post an update. Partly because it's been a bad day pain wise, and partly because I need something to take my mind off the desire to drink. My pain went up enough to cause my feelings of despair and stress which is ultimately putting my sobriety in jeopardy.

How can I expect to get better or seek the advice of others if I can't hold up my end of the bargain?

First my stats regarding the PN.

-87 days since left foot symptoms
-40 days since right foot symptoms
-15 days on Nortriptyline (up to 30mg a day for the past 2 days)
-12 days sober
-9 days on supplements (and working to improve my diet)

I can't believe these symptoms and pain have progressed so rapidly up to this point.

I know it would be ridiculous to think that after such a short time frame for "healing" I'd really have significant results already. But the past few days leading up to today gave me signs of hope. The burning in my feet and legs has been noticeably less and not very noticeable in my arms or upper body. Since I'm on the shotgun approach to recovery I cant say whether its the Nortriptyline or supplements that helped. Maybe it's a combination. I'm just happy that there is some relief and I'll worry about figuring out the reason later. That's the good news!!

The bad news is that today I've had increased pain in the soles of my feet. The feeling of walking on "bunched up sock" increased in the ball of my right foot. And the ball of my left foot is still walking on "rocks" which seemed sharper today. For some reason walking around barefoot feels better. Maybe the pressure is distributed just right to make it more tolerable. Walking around in shoes (pretty much any shoe, I've tried every pair I've owned) makes it worse. Anything with arch support is the worst. Makes it hard to leave the house or go to work!!

That brings me to the worst of my pain right now. My right foot has a dull ache which was brutal today. It's hard to pinpoint where it's originating, but the "arch supports" in shoes make it worse, so I'm thinking its originating around that area of my foot. Anyway it's impossible to stand in one spot for more than a minute or two without having to move or sit down. Sometimes its worst in the heel area and sometimes it seems to radiate up to my ankle. As soon as I sit down it quickly subsides as it is very much pressure/position dependent. At the same time I can't replicate the pain by pressing on the sole of my foot. Feels very much like I'm walking on the bare bones. One thing I have noticed is that I get a vague cramping feeling in the same area when I'm relaxing in bed. I'm not sure I'd associate the dull pain with PN, but the burning and dull ache began on the same day 40 days ago. It came on so suddenly and expectantly, I'll never forget that day as long as I live.

Anyway the pain made it very hard to concentrate on anything other than getting off my feet today and as we all know, stress only makes the nerves more agitated. I needed to put my feelings down to take my mind off of alcohol and continue to track my journey.

Days like this are really going to test my resolve to fight this condition. I'm still so young and have a lot of responsibility with a toddler and I don't have time to take a day off and feel sorry for myself. Thank goodness I have my first appointment with a psychiatrist next week. I really need to get my mental health in check to properly attack my physical problems.

Just curious, have you ever been properly tested for lyme and coinfections?

One of the symptoms of bartonella is burning soles of feet. and anxiety is many people with lyme first symptom. I have lyme for 15+ years and battling peripheral neuropathy now which is why I am visiting here.

Freeform · 06-16-2023, 01:15 AM

Hey did you break by now it's been awhile? Are you back to normal?

G.paton · 03-26-2024, 03:37 PM

Hi new member
I can relate to a lot of what people are suffering with
My problem was diagnosed 2 yrs ago
With my toes in both feet , right is worse
Can only describe it as frostbite, and burning , very uncomfortable, seem to get it worse when I drive , especially when stuck in traffic, can get unbearable at times , and have to get out of car , exercise my foot , what makes matters worse also got plantar fasciitis
I have spoke to my specialist and having b12 blood test which in some case can help with adjustments, then physio, then stick wave treatment that can relieve nerve endings and promote repair to them , so have a few things to try , definitely won't be trying the drugs route.made my mind up about that , hope this helps anybody , we all have different thresholds of pain , at the moment mine is tolerable

JILLB · 05-07-2024, 02:46 PM

I've had PN for almost 10 years and I'm still finding new symptoms that can be linked to autonomic dysfunction. The latest one is stomach problems - ibd - bloating, pain etc that tends to crop up when I'm stressed or anxious. I'm working on solution for that one.
I can recommend Vioxx sox, only available on-line. I rub magnesium cream on my feet and put my sox on at bedtime. No more RLS and foot pain. I also belong to a zoom group from the Western Periphery website. We zoom twice a month - it's wonderful to chat with people who understand PN. My greatest fear is falling, so I go to the gym 3 times a week to strengthen my legs. I've had to cut back on my beloved gardening (can get down, can't get back up). I worry about what the future will bring, but as they say, We Go On.

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