Ugh, another peripheral neuropathy attack. The timing is terrible this time since I am visiting a software vendor this afternoon. That is going to suck if the attack continues until then.

This time the apparent pain point is on the outside bottom of my right foot as marked above. Interestingly, I can push hard on my calf muscle and trigger pain or numbness in my foot. However, I could not find the location that matches the current pain point. Instead, I am just making my foot number overall.

I hope this attack ends soon so I will not have to hobble around the software vendor’s office later this afternoon. I have been trying to sleep since 11:00 pm. It is now almost 3:00 am and I have not slept at all, and I am very tired.

Every time a new attack occurs, it feels like the worst one ever. The top of my right foot near the toes just started hurting and it already feels like an eight on the pain scale. Usually, the pain and numbness get worse over time before the pain subsides. It is hurting so much that I cannot even pinpoint the pain. The entire front of my right foot is hurting and very numb.

Lately, I have been getting a pain attack every few days. This sucks.

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I was pretty happy when the pain started fading after only a few hours and I fell asleep for a few hours. I just woke up at about 4:00 am. The pain is gone in my right foot, but a new attack just started in about the same area on my left foot.

I just booted up my work computer. May as well get some work done since I am not sleeping for the next few hours.

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Awesome! It is now about 5:00 am and the pain in my right foot has returned from yesterday. I guess we are back to double neuropathy again. Remember, when you feel like your life sucks, it can always get even worse.

I was hoping the last time was a one-time event. It is not.

I fell asleep at 8:00 pm last night and got up at 1:00 am this morning. Soon after, the insole of my left foot started hurting. I hate it when neuropathy hits that spot because usually it is very painful. While that was happening, toes in my right foot started hurting. I said “toes” because the pain is so widespread, I cannot even tell which toe is hurting. So right now, I am getting shooting pain in both feet.

Well, this is going to be a shitty Sunday.

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This also meant I did not eat dinner last night. I miss dinners quite often now, especially on days when I go into the office. Usually I am so tired that I just fall asleep on my bed as soon as I get home.

For the past ten plus years, each peripheral neuropathy attack has been in just one location. It changes for each attack, but it was never in more than one place each time. I remember thinking that it would suck a lot more if I get multiple attacks at the same time.

Well, that day has come.

I got an attack in my left heel yesterday. I was going to stay home and rest, but I was having issues with my home/work computer, so I drove into the office with this massive pain in my heel. It sort of backed off a bit during the day, but when I got home last night, the attack picked back up. However, this morning, a new attack started on one of my left toes while my heel was still hurting.

Arg, today is going to be a terrible day. 😭

I am eyeing my stash of expired Percocet pills.

This has been a bad week for my peripheral neuropathy. I mentioned earlier that I had an attack early Tuesday morning. It prevented me from driving to work, and I blocked off all afternoon for naps. Fortunately, that attack subsided in the afternoon, but my left big toe started hurting again that evening. By Wednesday morning, it subsided enough that I was able to drive to work after Tesla service replaced the 12V battery in my car.

After that, I thought the worst was over. I have never had two attacks in 24-hours and I was hoping I get a long break. Well, that was wishful thinking. I can feel an0other attack starting. It is in my left foot again, and this time it is between the first two toes and higher up on the foot. That is three major attacks in four days.

Kill me now.

I took a quick walk outside this morning, and I mean quick.

It was only fourteen minutes and less than two-thirds of a mile. I went out to walk because my left foot started hurting this morning at 4:00 am. I got up to use the bathroom and when I returned to bed, I felt a slight twitch in my foot. From that, I knew a neuropathy attack was coming but not the intensity. After about six hours, I can defbinitely say it is really bad, like screaming in pain bad. The walk did not do anything to help with the pain, and neither did two Tylenol pills. I have resorted to using a Salonpas patch, and so far it has not helped either.

It is becoming apparent that these nerve pain attacks are happening daily or every other day. I am trying to avoid taking another medication like Gabapentin, but it looks like I have no choice.

From MedlinePlus, possible Gabapentin side effects include:

• drowsiness
• tiredness or weakness
• dizziness
• headache
• uncontrollable shaking of a part of your body
• double or blurred vision
• unsteadiness
• anxiety
• memory problems
• strange or unusual thoughts
• unwanted eye movements
• nausea
• vomiting
• heartburn
• diarrhea
• dry mouth
• constipation
• increased appetite
• weight gain
• swelling of the hands, feet, ankles, or lower legs
• back or joint pain
• fever
• runny nose, sneezing, cough, sore throat, or flu-like symptoms
• ear pain
• red, itchy eyes (sometimes with swelling or discharge)

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Zero effect from Salonpas so far.

Typically, the only thing that helps with the pain is sleep. I always take Tylenol, but I do not feel is has made any impact. I have also taken some leftover opioids like oxycodone and codeine but any pain relief has been minimal. The best solution is to sleep it off, but I just woke up from bed so not tired yet. Usually the pain would prevent me from sleeping for so long that I just pass out from exhaustion. This is going to be a long, painful day.

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I feel the pain intensity is getting worse after I put on the Salonpas patch.

I can’t take this anymore.

When the whole peripheral neuropathy pain thing started many years ago, it was coming about once a month, and would go away after about 24 hours. Recently however, pain attacks are happening about every other day. There were about three episodes, but I was able to take some Tylenol and sleep them off.

Not tonight.

I am in the middle of a huge attack. It started about two hours ago and the pain intensity has drastically increased. In addition, instead of a short burst of pain each time, attack is about three seconds of excruciating pain. I have taken the usual Tylenol, used a wand massager for an hour, and walked around the first floor of my house to no avail. I am also short of breath and sweaty from shaking my leg during each attach, as it seems to help dissipate the pain. My back is also hurting for some reason; not sure how that is related.

I see my endocrinologist in about two weeks. I am ready to ask for any medication that will relieve these neuropathy pain attacks. They were bearable when only happening once a month, but I do not think I can handle every other day. If the frequency increases further to daily occurrences, then I will be in pain 24/7.

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Ugh. I just went ahead and took 5 mg of Oxycodone that was prescribed for post-transplant pain. I never took the medication after surgery since it was easily tolerable. I believe I have taken the pain medication three times in the past for neuropathy pain, but it was unclear how effective it was. At this point I do not even care. Every little bit of pain relief is welcome.

I wrote several times in the past that I feel my peripheral neuropathy has gotten worse, but I was a bit uncertain each time. However, 11-months post-transplant, I know it is worse than a year ago. If I had to guess, I think it is due to having higher blood sugar from having a working kidney and some of the medications I am taking.

For example, right now I have three areas of pain in my feet. They are not as intense as a normal attack, but each is a low-level background pain. I have never had three areas of my feet hurting at once. The overall numbness has increased as well. I can barely move my toes on my right foot, and the tingling sensation is occasionally preventing me from sleeping. Finally, the frequency of intense pain attacks have decreased from about monthly to multiple times per week. Of course, this is still better than being on dialysis, but the numbness and pain is really stressing me out.

Life sucks. Sure, it sucks a lot less without dialysis, but there are still lots of health issues to deal with.

I was working on the computer at around 6:00 pm when I got a huge spike of pain on the inside of my left foot. Instead of going away and spiking periodically, the pain basically stayed for an hour. It was a bit less intense but still pretty painful nevertheless. Afterwards, the pain started shooting again for about three hours. I think it is mostly subsided now, but I was screaming into my pillow more than once.

It is super frustrating since I do not understand the pain mechanism or drivers. Why does it start up at random? And what exactly is causing the pain? What if I gave myself a lidocaine shot? It is combination of intense pain, and feeling helpless to do anything about it that really drains me in the moment.

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Speaking of medical issues, I had to get another blood test today for my endocrinologist. Her sent me documents via mail yesterday so I had to run down to the lab today. I waited about 20 minutes since I did not have an appointment, but everything was fine and they only drew two test tubes: one for a comprehensive metabolic panel, and the other for fructosamine. Not sure why the endocrinologist likes that test vs. an A1C now that I am no longer on dialysis. The results are out already and similar to UCLA’s results, several items are high. Glucose id definitely high at 150-something, but I know that going in. Potassium is at 5.5 so borderline high. Creatinine is 1.50, which is lower than the 1.58 a few weeks ago, but it is still on the high end. I have to doe the same test again for UCLA on Friday so hopefully it will continue to drop.

Both my parents and my sister asked me whether the kidney transplant fixed the pain in my feet. The answer is a resounding no.

I have had pain from peripheral neuropathy before I found out about my kidney failure. My understanding is that the numbness comes from damaged or dead nerves caused by uncontrolled diabetes, and essentially there is no cure. I was lucky that I did not experience much neuropathy during my hospital stay, or even the first few weeks of recovery. However, neuropathy pain from last night and tonight have been pretty intense, and is preventing me from sleeping right now even though it is 2:00 am.

Last night, the pain was pretty high up on the outside of my left ankle. I have never experienced pain there before. Since it was kind of high up on my lower leg, I could apply pressure to the pain point and actually feel something, usually more pain. This was different than all the previous pain points where I could not feel any external pressure on the pain point. Tonight, the pain is in the same area but a bit lower. Like last night, I could push on the area and manually trigger the pain. I tried using a massage wand on the spot, but that just made it worse. The Tylenol I took has not helped yet so it looks like it will be a long night of pain attacks. I also had some sporadic pain in my right foot from neuropathy, but the entire lower from the knee down is still hurting from the fall I took at UCLA. The pain in my right leg gets a lot worse after 15 minutes of walking so I have only walked every other day recently. The nurse practitioner at UCLA said it may take 4-6 weeks to heal from a fall to the kneecap so I may have to limp around for another three weeks.

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Update: 2/26/2021 9:04 pm

So all the pain attacks have pretty much stopped for the moment. It was pretty bad yesterday while driving home from UCLA after my clinic appointment. In the hour drive home, I had three places on my left foot experience shooting pain, and one place on my right foot. Usually, the pain is limited to one location at at time, but this time, the pain was pretty much constant with four different locations hurting at random.

Of course I rather have the kidney transplant than to go back to the way things were but this multiple pain points at the same time is killing me. Good thing most of the pain was in my left foot, which is not used when driving.

I had two close calls today.

When I woke up this morning, my right big toe starting hurting. It wasn’t too bad having just started the cycle so I took two regular Tylenol pills and tried to sleep it off. I was pretty successful and when I finally got out of bed a few hours later, the pain didn’t come back. Fast forward to this afternoon. I took another nap after a work call and woke up again with pain in my right foot. This time it was on the inside of the foot, right under the big toe joint. Unlike this morning, this one hurt a lot more than anything I’ve experienced before. After each pain attack, my entire foot would go numb for a few seconds. I took another two Tylenol pills (PM version this time), and tried to go back to sleep. It was difficult since I just woke up, but managed to doze off for a few hours until my parents woke me up for dinner. The pain attacks were subsiding but I still experienced a few within the next few hours. It’s now 10:30 pm and I think it has finally subsided.

Again, these attacks are likely the result of diabetic nerve damage. However, having controlled my blood sugar and diabetes fairly well over the past few years, I thought there would not be any further deterioration in my condition. I understand if the body can’t heal from the damage but the nerve pain seems to keep getting worse. Maybe there is a lag in the blood sugar levels and [body system] damage?

I’m just hoping nothing reappears tomorrow morning during dialysis. It will suck even worse if I have to deal with nerve pain while sitting there for four hour5s.

Merry Christmas!

It’s 10:48 pm on Christmas Eve and I’m going through a neuropathy attack. It started after dinner. I was just sitting in the dining room looking at Reddit on my phone when the top of my left big toe started hurting a bit. Over time, the pain became more and more intense. I took two Tylenol and tried to sleep but I had taken two naps today already so I just tossed and turned in bed for 30 minutes while my toe kept hurting.

The randomness of the pain makes it a lot worse. Even after enduring the pain for years, I still don’t know what triggers it. Sometimes it starts while I’ still in bed, other times when I’m just sitting around. I’ve measure my blood pressure and blood glucose levels but there is no correlation. Maybe it has to do with blood toxicity or electrolyte imbalance? Also, the pain point seems to be random as well. Sometimes it’s the left foot, other times it’s the right. There is no rhyme or reason to it. And once it starts, nothing seems to interrupt the pain attacks or makes it dissipate. I would feel better saner if I could understand what is happening.

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Ouch! The pain is getting worse and worse. Sometimes there is a lull in the attack and you think maybe it over, then a huge spike of pain hits you. Again, there does not seem to be a pattern at all… completely random.

I’ve said this before but this time I really think that the overall numbness in my feet is also getting worse. Since peripheral neuropathy is typically related to diabetes, I’m not sure why the numbness is not stabilizing. If you believe the A1C numbers, my blood sugar has been under control for the past several years. Is there a lag in neuropathy progress as related to diabetes? Maybe there is a certain level of nerve damage that is self-propagating? When I think back to when I first started dialysis, I don’t remember noticing the numbness in my feet. These days, that’s all I feel when sitting on the dialysis chair, except when the needles are slightly off target and is hurting as well.

I like to think that if nothing else, I’ve built up a tolerance to pain over the past several years with peripheral neuropathy pain, peritoneal dialysis drain pain, dialysis dehydration muscle cramps pain, fistula needle pain, chest pain from bypass surgery, etc. I’m sure there will be more with the kidney transplant, if it ever happens.

I’m not sure what is happening but another pain attack just started on my left foot, kind of under the 4th toe joint. This is the third painful attack in three days; I don’t think I’ve ever experienced this before. Once again, it’s super painful but the duration is longer than normal so the pain actually builds intensity. I’m popping Tylenol pills like candy at this point, hoping I can head off the eventual increase in pain intensity that lasts 24+ hours.

Aaarrrggg! Another stab of pain just hit and it felt like it lasted over five seconds. Usually the pain subsides until the next attack but this time, the pain is so intense that it lingers on so that spot is in constant pain. I’m not sure what to do. I’m afraid to massage the spot too hard since the last two times I got a blood blister. Unlike a kidney transplant, I don’t think there is any way to mitigate this. It’s sad, but I can’t remember back to when I was not living with this numbness and pain.

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Fortunately, I was able to fall asleep pretty quickly and the pain was gone when I woke up at 3:30 am (still can’t sleep the night).

Another day, another neuropathy attack. However, this one feels like the worst one yet. I took at nap at around noon and got up at 2:30 pm. As soon as I woke up, my left foot started hurting. Specifically, the inside of my foot about third of the way down. It feels like it’s on the surface but no amount of massaging (with my hand, not a blister causing massage wand) has any effect. I also tried putting that foot in the shiatsu massager, since my right foot still has stitches, with zero effect. I also tried massaging my calf muscle since sometimes that causes a nerve response in the foot. I took two Tylenol pills right away. I also tried putting an ice pack to see if I can numb the area. Nothing is working, and the pain is so bad that I’m grunting out loud each time the pain comes. I’m grunting so much that I’m actually running out of breath and my heart seems to beating harder, if not faster.

I try all these things because I feel like I need to try something instead of just letting the pain kick my ass every 30 seconds, but nothing has ever worked. The best “cure” has been taking painkillers and trying to fall asleep so I don’t feel the pain, and hoping that the attacks will go away when I wake up. Sometimes that works, other times the pain is worse. It’s only 4:00 pm now so if nothing changes, I have another 22+ hours of pain to deal with.

I’ve been lucky for a few weeks. Each time neuropathy pain occurs, I’ve been able to take some pain medication and sleep it off. Not tonight. I felt some pain at the top of my left foot yesterday. I quickly took some Tylenol and the pain went away. However, it came back to the same spot about an hour ago while I was sleeping. The pain woke me up and I’ve been trying to massage the spot with no avail. I also took another two Tylenol pills but it had no impact this time. The pain feels like it’s coming from just under the surface of the skin but no amount of hitting or putting pressure on the spot has any impact. In fact, due to the neuropathy, I don’t feel anything there at all except the nerve pain.

In addition to the persistent pain attacks, I’ve notice a huge increase in the number of one-off nerve pains. They would be super painful, but only hit once. Next time, it would be in a different spot. I have no idea what’s going on with that. Maybe it’s affected by the edema so hopefully draining some of the fluids will help.

I’m fully awake now. There is no sleeping anyway in the midst of an attack. I’m going to walk up/down my short hallway to see if that helps.

I haven’t post about this in awhile, other to talk about the occasional pain episodes. However, the constant daily numbness is still ever-present. Each time I think about the neuropathy, if feels like it’s getting worse. I can’t blame the amiodarone I was taking early on anymore: it’s been eight months since I stopped taking it. Not sure if the other arrhythmia medicine (Multaq) contributed to the growing numbness, but I was on that for only a few weeks and stopped last month.

I mentioned that I purchased a shiatsu foot and calf massager. The few times I tried using it, the massager seems to make the numbness stronger. That may not be a bad thing since walking also increases the numbness for awhile. I assume it’s the increased blood flow in the the lower extremities. I need to be more consistent to see if there’s any real difference. However, sometimes I feel the numbness seems to be crawling up my legs, especially when I’m lying down. My new endocrinologist did say that anti-neuropathy medication are mostly ineffective and she would avoid them unless the pain/discomfort was overwhelming. I guess it is sometimes but most of the time it’s just there in the background, irritating but not debilitating yet.

I moved the massager upstairs to my bedroom. My room is not that big so the massager is quite noticeable since it’s pretty large. Here is a photo with my iPhone 8S for size comparison:

It took some reading but I think I have the orientation and usage figured out. It’s still not ideal for calf massages since you’re supposed to put the massager on a bed or ottoman and let the weight of your lower leg push down on the massager. Being seated, I don’t think there’s enough pressure against the rollers for a good massage. However, the massager weighs a ton so it’s not that easy to move around. Even switching from foot to calf mode in the same spot sucks.

I tried it for about 15 minutes each on my feet then calves. You definitely fell more of a tingling in your feet afterwards. It actually makes the neuropathy numbness worse. Hopefully it’s just a reaction from improved blood flow and I’ll get used to it after more use. No pain yet after one day so hope that lasts too.

Ugh. I’m starting a lot of posts with this word.

I was feeling pretty good tonight. I got over 5 hours of sleep today, broken up into several naps. I had a decent dinner, and my chest pain/pressure wasn’t bothering me too much. Anyway, I walked for about 20 minutes on the treadmill for about 0.6 miles. At the end, I started feeling a sharp stabbing pain in my right foot, right below the inside of the ankle. I think this is the first time that exercise made my neuropathy worse, or even appear out of nowhere.

I used to think that exercise helps relieve the pain somewhat. I did notice a huge wave of numbness in my legs/foot when I stopped walking on the treadmill. But exercise triggering the neuropathy pain? I didn’t expect that.

It’s been only 10 minutes and the pain is already excruciating. I took two Tylenol pills already but likely it won’t do anything. I guess no sleep tonight. I just hope it subsides by the time I have to go to dialysis. I can’t imagine sitting for four hours while feeling a constant stabbing pain in my foot.

I hate my life.

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Let me reiterate that this was a problem that used to appear every month or so. I can deal with one night of no sleep and sharp pain each month, though it was pushing my pain tolerance. Now that this seems to occur once every few days, plus my recent erratic sleep patterns, I am exhausted all the time. I was trying to get some work done around noon today but I kept nodding off in front of the computer. After about 30 minutes of this, I finally went to take a short nap and woke up at around 2:30 pm. Luckily, I did not receive many emails or text messages from work.