Trouble Sleeping (updated)

It’s just past midnight on Saturday and I can’t sleep. The main issue is the peripheral neuropathy again. No pain this time but the numbness is overwhelming. It’s been slowly getting worse over the past several months, but since I was preoccupied with my heart issues, I haven’t blogged about it that much. The numbness is pretty constant and goes about a quarter way up my calf. Since I still have some edema, it does feel a bit bloated, like the skin is being stretched. It’s probably just false feeling; if I can’t feel pain, I’m not going to be able to feel anything subtle.

My back is also a bit sure. I’ve staring at my iPad too long while sitting on my bed. Add the constant chest pain/pressure when I lie down, it’s hard to relax and fall asleep. The problem is that I have dialysis in about 5 hours so I need to get some rest. I’ve been kinda falling asleep on the dialysis chair and that’s definitely not good for my back.

I read online on some websites that dehydration can make neuropathy worse. I think the dialysis center is drying me out but the edema in my ankles say otherwise. I asked my new endocrinologist about medication for neuropathy and she mentioned gabapentin and Lyrica. She said both are not good drugs for someone with kidney issues. So unless the pain is unbearable, she doesn’t like prescribing those type of drugs.

Sigh… for some reason, I always had the thought that modern medicine can fix everything. Then I find out there are lots of chronic conditions that have no cure, and patients basically suffer their entire life with these conditions.

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Update: 8/1/2020

So it”s about 4:00 am and I didn’t get any sleep this morning. Okay, maybe 30 minutes here and there. At 3:30 am, my big to on my left foot started hurting. As I mentioned before, the neuropathy pain episodes are coming fast and furious. Usually I get a few weeks of respite between attacks but now it’s days. I still think it may be dehydration from dialysis lowering my dry weight, but it could be just coincidence. What has helped relieve the pain sometimes is walking or just kicking out my leg violently. I think that moves the blood down my leg to get a bit more circulation. I found this on Amazon:

*Cloud Massage Shiatsu Foot Massager Machine*

The way it’s designed allows for both foot and calf massage. I also found that sometimes massaging the calves will cause nerve response in my feet. It has a 4 1/2 star rating with over 1,000 reviews. However, it does cost $250, though if it gives me some relief, it will be totally worth it. I’d pay $100k for a machine that stops the neuropathy numbness and pain.

At this point, I may as well stay up and prepare for dialysis. Not going to get any sleep in the next 30 minutes. I guess it’s napping in the dialysis chair again. At least it’s Saturday and there won’t be any doctors or staff calling on us patients.

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Initially, Amazon showed Prime delivery for tomorrow if I ordered with the next 15 hours with one-day shipping. I decided to wait until after dialysis to make the decision since it was $250. When I just checked again, the delivery date has moved to Friday, August 7th, and there was no explanation given. It still had the Prime tag so delivery should have been Tuesday at the latest. I was going to order anyway but decided to search online for other stores. One of the search results was Vybe Percussion which sold percussive hand massagers. They also carried the same foot massager with free shipping, also delivering on August 7th. However, they also had a coupon code for 20% and the code worked. So instead of $250, I ordered the massager for $200 (plus tax). I guess you should always do a quick search before buying anything at Amazon (or Costco) since sometimes there are better deals to be found.

Hopefully it works, even slightly, since $200 is still a lot to waste if it’s ineffective.

Peripheral Neuropathy 7/28/2020

Ugh, I’m tired of writing about this but the attacks are coming in almost daily. I was at my limit when the pain episodes were occurring once a month, but now it’s almost non-stop. The pain from 7/26 subsided this morning but it was enough to prevent me from sleeping that much. As a result, I was super tired during dialysis. I think I fell asleep at 6:00 am and didn’t get up until 8:30 am. That session felt like the fastest ever since I slept through most of it.

Since my feet felt better, I took a short nap at around 1:00 pm and didn’t get up until almost 6:00 pm. But as soon as I got up, another pain site popped up on my left foot, a bit higher up on the insole than the case on 7/23. I said before that I didn’t want more medication since I’m on so many of them now but I’m beginning to change my mind. I can’t stand this anymore. Worse, this probably won’t improve with a kidney transplant since it’s the result of prior uncontrolled diabetes. Even though I have my blood sugar well controlled now, it won’t matter.

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Double ugh. Many websites say to keep well hydrated to avoid or reduce neuropathy. Well, that sucks for dialysis patients, especially when my nephrologist keeps reducing my dry weight. It was reduced to 87.5 kg last Tuesday, and today, it was reduced further to 87.0 kg. I have been leaving the dialysis center at ~87.5 kg lately, the lowest weight for me in recent memory. Is this just coincidence or am I drying out, causing more instances of neuropathic pain?

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This is killing me. The pain switched from the left foot to the toes of the right foot suddenly. The left foot pain was more prolonged but not very painful. The right foot pain now is super painful and spread across the bottom of three toes. Ugh, I can’t stand this anymore.

Peripheral Neuropathy 7/26/2020 (updated)

Ugh, the last episode ended only two days ago and it’s starting up again in the other foot. I can feel the stabbing pain now on the insole of my right foot. Seriously, the pain just stopped two days ago in my left foot and it’s back already. I thought I was lucky that that pain stayed away for many weeks. I want to go out and walk for a bit but the blister in my right foot and this low level shortness-of-breath is making things difficult.

Speaking of the blister, it was still bleeding/leaking this morning, I’ve been using about four layers of gauze but it’s seeping through all of that every 8-10 hours. I want to switch to an island dressing that is adhesive but not too absorbent (Telfa), but worried that the fluids will leak out everything in my socks/shoes.

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Updated: 7/27/2020

Crap! It looks like my left foot is acting up too, even while the pain is getting worse in my right foot. This is my worst case scenario, that both feet are experiencing neuropathy pain at the same time. It even appears that there are two pain sites in my left foot so I’m really getting three sharp jabs instead of just one. Great!

I just took two more Tylenol pills. I don’t think there is any way i can sleep tonight. Since all the pain sites are pretty recent, the pain intensity is just going to get worse.

Peripherial Neuropathy 7/23/2020

I’m in the middle of a neuropathy attack now. It started near the end of the dialysis session. The pain site is in the sole of my left foot, near the center of the foot. Of course, I can’t seem to do anything to affect it. Neither of the massagers do anything, and even walking did not help. It started as a constant dull pain, but has progressed to an intense stabbing pain that lasts about 5 seconds per attack and varies between 20 seconds to a minute between each stab. I’ve taken four Tylenol pills for a total of 2000 mg of acetaminophen but it hasn’t helped a bit. I’ve also been trying to sleep it off since 11:00 am (it’s now 5:30 pm) but have been unable to fall asleep due to the pain. It doesn’t feel like it’s subsiding so I guess I have to wait it out. Usually these attacks last about 24 hours. This probably means no sleep tonight either. Ugh.

Neuropathy + Shortness of Breath

Double whammy!

I’m in the midst of a pretty serious neuropathy attack. This time it’s the inside of my left foot. The jabbing pain is pretty intense that I can’t even sit up straight when the pain hits. It’s coming anywhere from 15 to 30 second intervals.

Usually the only thing that helps is a bit of walking, either outside, on the treadmill, or even just wandering in the upstairs hallway. Well, due to some heart weirdness, I’m running out of breath really fast. I went walking on Saturday for a short 1/3 mile and had to sit on the curb twice, severely out of breath. Today, even walking slowly in the hallway tired me out.

OMG life sucks.

Walking 4/3/2020

Crap. The nerve pain came back randomly this afternoon like it never went away. I guess I’m glad it subsided for about six hours so I didn’t have to squirm in pain on the dentist chair but I’m very worried at the frequency of these nerve pain episodes. It was barely bearable when it was about once a month. If this is going to be a daily event, I’m dead.

Sometimes walking will help with the pain, usually while I’m walking. I went to the garage and walked about half a mile on the treadmill. I tried going faster than 1.6 mph but got tired quickly so the pace was still 37’50”. The nerve pain only came two to three times while I walked but came back more frequently when I stopped. I took two Tylenol pills already and will try the massage wand again, but not very optimistic.

Peripheral Neuropathy Pain 4/3/2020

Ugh! It’s about 5:00 am in the morning and another pain attack just started. This time it’s in my left big toe. I had woken up after sleeping about 2.5 ours and suddenly the pain just appeared. This is the fifth time in about three weeks. I’m not sure what is going on. I took two Tylenol pills but it’s too late. The frequency of the pain attacks are already <30 apart, and the pain is pretty intense. Unfortunately, I have a dentist appointment at 9:00 am (in four hours). I don’t know if I can sit still in the chair for any length of time with the neuropathy pain.

Thinking back, even though the acupuncture appointments didn’t help much with the numbness and tingling, I don’t think I had a pain attack while seeing the acupuncturist. Since the insurance coordination mess-up and COVID-19 stay-at-home orders, I haven’t been seen the acupuncturist for about a month. I think it’s too risky to go at this time but maybe in the future.

I may have to call early in the morning to cancel my dentist appointment if it’s going to be >30 minutes.

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Since the pain point was in my big toe, I took a massage wand and held it there for about 20 minutes. Surprisingly, the pain subsided quite a bit and was gone this morning. Again, not sure if it was the Tylenol or the physical agitation that helped.

Neuropathy Pain During Dialysis (updated)

Crap! The outside of my right foot just started hurting and it’s pretty intense. I don’t think I’ve ever had the nerve pain start up during dialysis. Right now it’s occuring about a minute apart and probably will start increasing in frequency and intensity soon. I hate it when it happens during dialysis since I can’t get up and walk around. Also I don’t have my Codeine pills here, only regular Tylenol so I took two pills. It probably won’t help and there is still 2:09 left on the machine.

I can’t believe it’s happening again so soon after the last occurance. It used to be about a month between attacks. If this is going to happen every few days, then I’m dead. I probably won’t have any choice but to get more medications for nerve pain.

Damnit, I hate this. The nerve pain and numbness won’t go away after transplant so there is really no hope for relief.

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It’s about 12:45 pm and there is 16 minutes left on the dialysis machine. The pain has mostly subsided for about 45 minutes, with very occasional attacks. I don’t know if it’s the Tylenol or if this is a new pattern: shorter duration bit more often episodes. My foot is still twitching so it’s not over yet.

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Nope. Wishful thinking. I just got home and the same spot is hurting again like the lull never happened.

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The pain is a lot worse than I remember pre-surgery. I guess I’m paying for the three month’s of peace I had. I’m not sure I can function if the pain comes back every few days. There is no way I can concentrate enough to work and definitely no way I can sleep.

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It’s almost midnight now. My foot was hurting all day until I managed to nap a few hours. However, as soon as I woke up, the pain returned. This is also kinda new. Previously, I would never be able to sleep while the pain attacks were happening. Once I did fall asleep, typically the pain would stop when I woke up. I took two Codeine pills in the afternoon and two regular Tylenol pills after dinner so I’m maxed out on acetaminophen for today. Fortunately, the pain intensity seems to be slightly less so many this episode is winding down.

If felt weird walking around the upstairs hallway at home. I was so tired from the lack of sleep so I felt like I was going to fall asleep while walking the 20 feet over and over again. As soon as I get in bed, the pain would keep me awake. I think taking two Codeine pills finally knocked me out but the drug effects wore off too soon.

Neuropathy Pain 3/25/2020 (updated)

Arg! After almost three months free from nerve pain, my neuropathy is happening again! Since I got so little sleep yesterday, I went to bed at 9:30 pm tonight. After sleeping for ~1.5 hours, I was woken up by a sudden pain in my left heel. It’s just starting so the attacks will increase in frequency and intensity. There has been no remedy in the past other than taking Tylenol and trying to sleep it off. Typically the attacks lasts 24 (or more) hours and is bad enough to make me cry out in pain each time. Unfortunately, if it runs it’s normal course, I will be sitting through the worst of it during my next dialysis session. In the past, these pain episodes would be at least about a month apart. I just had one last a week ago so this is a change for the worse as well.

I just took one of my dwindling Tylenol + Codeine pills. Hopefully I can fall asleep and have the pain disappear early. If not, it will be a terrible dialysis session tomorrow.

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No luck. The pain is increasing in intensity each attack and causing me to breathe harder. Since I’m still short of breath from coughing and surgery chest pains, it’s making breathing even harder. I don’t think I will be able to sleep for the next 24 hours until this episode passes.

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It’s 1:45 am and the pain is a lot better. This is after using a massage wand for 20 minutes and the violently swinging my left leg to get the blood flowing. I think it’s been over 15 minutes since the last pain attack so maybe it has subsided early. Or it’s the Codeine working and I’ll be in pain in a few hours as it wears off.

Peripheral Neuropathy & Nerve Pain

In addition to numbness and tingling in my feet, I used to get pretty several nerve pain about one a month. Each occurrence would last about 24 hours and painful enough to prevent me from sleeping or working. The apparent location of the pain point would vary each time as well.

Since the heart surgery, the numbness and tingling seems to be much more intense than before, but the pain part has been rare. I think it only happened once or twice and I’ve been relatively pain free for the past three months. However, it seems the pain is starting up again. There’s a sharp pain that appears intermittently in my left foot. I was hoping that the nerve pain was somewhat related to my heart issues. Once the blocked arteries were bypasses, maybe the pain will go away too.

I guess not.

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I also spoke to the rounding nephrologist yesterday regarding the neuropathy. I read some articles online that correlates neuropsthy with dehydration. The only major change I can come up with between now and a few months ago is my weight loss and a lot of that is fluid removal. I’m still pretty thirsty most of the time and they keep dropping my “dry” weight at dialysis. I thought if they let me drink more and increase my weight, it may relieve some of the neuropathy. However, the doctor said she hasn’t heard of this relationship before and suggested more medication (Gabapentin) for the neuropathy.

Peripheral Neuropathy 3/11/2020

I think the diphenhydramine in Tylenol PM does have something to do with the increased neuropathy in my feet and legs yesterday. I only slept from 6:00 am to 7:30 am this morning so I’m super tired from basically four days of no sleep. I did go to work while skipping rehab but decided to come home early after a few meetings. I got home around 2:00 pm and slept until 6:00 pm, then again after dinner from 8:30 pm until now-ish. I still need to sleep more but at least I was able to get a few naps in.

The numbness feels like it’s subsided a bit. My feet are still numb but it’s no so unbearable like it was yesterday. I read that the half-life of diphenhydramine is about 6-12 hours so all of it should be gone within 1-2 days. Good thing it’s metabolized by the liver instead of the kidney. Otherwise I’ll never get rid of it. The breathing sounds and cough is better too so maybe that is a result of the extra medication. Problem is that I still need to find a sleep aid if I can’t use Tylenol PM.

I did not take organic chemistry in college so no idea what this means

Also, even though it feels like the numbness is better, I still don’t feel great. The vascular surgeon wants me to ask the dialysis team to start using the fistula tomorrow. I think you have to sit very still in case the needle comes out, whereas the tubing is locked to the catheter. I don’t know if I’m ready for it with the current neuropathy levels and the need to move around in my chair.

Peripheral Neuropathy 3/10/2020 (updated)

Wow, the numbness and tingling in my feet is driving me crazy today. It felt really intense this morning while I was trying to sleep. The combination with my chest pains kept me from falling asleep all night/morning. Now during dialysis, it feels even worse and I’m not sure why. My weight and fluids are not that high compared to last session.

I don’t know what to do. There’s still 2.5 hours left and I’m starting to feel like I did that time in December when I had to go to the ER. I don’t want that again.

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I asked the technician if I can stand up and stretch my legs and he said no. I think they’re really worried about low blood pressure and me fainting if I stand up. My sitting blood pressure is at 152/85 so I think it’s ok to stand. Anyway, he gave me a paper towel soaked in ice water to put on my head and neck. That helped to cool me down a bit but doesn’t do anything about my neuropathy. I feel a bit better and sitting up as much as possible to stretch my left leg but it still sucks. 2:04 left on the dialysis timer…

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There’s an old Hispanic guy in the chair in front of me. He’s confined to a wheelchair and I’ve never heard him speak English. He alternates between sleeping and looking over at me. I’m not sure what he wants.

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19 minutes left. I’m not sure how I lasted this long. My nephrologist came by on her rounds so that distracted me for 15 minutes. The problem is they lowered my dry weight some more to 90 kg.

16 minutes left. I was going to ask them to let me off a few minutes early since my session will end right at 1:00 pm and I have another appointment at 1:15 pm right across the street. It’s really busy in here though. I’ll try to put on the manual tie-on mask now to save time.

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It’s now 6:20 pm and at home. I had an appointment to see the vascular surgeon after dialysis. The plan was to go to cardiac rehab after that but I was so tired that I just came home around 2:00 pm. I then took a long nap since I did’t sleep this morning but when I woke up, the numbness and tingling in my feet was even worse, if that’s possible. I had to walk around the upstairs hallway in my house to try and get the feeling to subside.

Peripheral Neuropathy 2/27/2020 (updated)

While washing up this morning, I was thinking that my neuropathy wasn’t too bad. It’s gotten a lot worse during dialysis, especially the left foot. It’s really been bothering me all morning and there is still one hour left on the dialysis machine. I also have a long (and probably painful) dentist appointment right after dialysis so I don’t know how I’m going to sit still for two more hours after four hours of dialysis.

I really think the acupuncture experiment is a fairure. I do believe the feeling in my right foot has improved a tiny bit, but the apparent increase in numbness intensity is making sitting and sleeping more difficult. My worst fear is that there will be no improvement in the peripheral neuropathy after the kidney transplant surgery any my quality of life will still be terrible.

That and knowing the transplanted kidney will fail in 10-15 years is pretty depressing.

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The dentist appointment ended up lasting 3.5 hours so all together, I spent almost eight hours on my ass all day. The pain wasn’t too bad during the dentist appointment and I took a codeine pill when I got home so everything is okay so far. The neuropathy hasn’t let up though. Both my feet are pretty numb right now and difficult to ignore. I managed to sleep for an hour while on the codeine pill. Not sure how I’m going to fall asleep tonight.

Intense Neuropathy

Right now, the numbness in my feet is pretty overwhelming. For some reason, the neuropathy has been very intense this weekend. During dialysis yesterday, there were several times that I felt like asking the nurse to disconnect me so I can get up and walk around. Still not sure how I sat through all four hours without another panic attack.

This afternoon we went to my sister’s house and played mahjong. That means I sat in one place for probably 5-6 hours. Maybe that has something to do with the numbness in my feet right now. It is unclear whether this is just the condition getting worse, or it’s a result of all the acupuncture I’m getting. I’ve told my acupuncturist that I have a bit more feeling at the bottom of my feet but at the same time, the numbness is also more intense. I don’t know if that is what she expects from all the acupuncture therapy.

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I just took a closer look at my lower legs and ankles; they’re pretty swollen. It’s probably due to sitting for a long time. Maybe the increased numbness is from the edema.

Peripheral Neuropathy 1/30/2020

My neuropathy is definitely… different. Once again, the numbness feels more intense, but it seems I have more feeling in the soles of my feet. I’m not sure what is causing this since there are so many variables. it could be acupuncture, or the Amiodarone from 7 weeks ago finally wearing off, or just general recovery/weirdness post heart surgery.

I don’t know if I like it better. I think it’s bothering more than before. I have my legs up on the dialysis chair but I want to sit normal since that seems to be better for the numbness. However, that will likely drop my blood pressure and it’s pretty low already. Arg, so many things to think about.

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I fell asleep for a bit while typing this post. The machine took another blood pressure reading and it was 134/71. My feet are still numb however so I think I’ll sit upright for awhile to see if it helps.

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Ugh, I just sneezed and my chest hurt real bad. Sitting with my legs raised also puts pressure on my chest. Sitting in a dialysis chair for ~~three and a half hours~~ three hours and 45 minutes is harder when your chest scar is acting up.