Category: Pain

PRP

Today was one of a long excruciating series of attempts to find some relief for my “butt pain”. I’ve had diagnoses like sciatic nerve demylenization, high hamstring tendenosis, ischial bursitis, performis syndrome and probably some other things I’m forgetting. I’ve had cortisone injected in my spine (where the sciatic nerve comes out), in my ischial bursa and in my hamstring, I’ve had physical therapy for all those diagnoses, and I’ve even had a electrodes implanted in my spine for a pain stimulator. So far nothing has worked.

The last doctor who worked on me suggested I look into getting an ischial bursectomy, but after calling 7 or 8 doctors in places like Texas, Kansas and New York City, all of whom whose websites said they do it, I got told over and over again that they don’t actually do it. I actually found one who said they do it and they booked me in for an appointment. And yeah, the front office person who booked me in had actually checked with another staff member to make sure they do it. This was in a fancy clinic in New York City just a block from Central Park. We had to fly down there and back. And when we finally saw the doctor, he said he doesn’t actually do that procedure, but he said he was going to suggest something less drastic. I think I surprised him when I asked him if he meant PRP (Platelet Rich Plasma?) or Prolotherapy. He was going to recommend PRP, and he confirmed the feeling I’d gotten from my research that while both are not FDA approved, many people find PRP helpful, whereas prolotherapy is pretty dubious.

The best thing about PRP is that I could have it done here in Rochester, and didn’t have to fly somewhere. Also, while it took a few weeks to get in to see the doctor who could do it (who was also the guy who’d shot cortisone in my hamstring), I got the appointment to have the procedure a week later (ie today).

So I had it today. First they took a bunch of blood – they tried to take 90ml but my blood kept coagulating so they had to stop at 78ml, after jabbing those giant 17G needles in me 3 times. They centrifuge it, and the centrifuge spits out a bag with plasma and platelets,and another bag of red blood cells. Sadly, they throw out the red blood cells, so there goes some more of my left over aerobic fitness.

Then it’s into the OR where they put you face down on a table and inject some lidocaine and then the platelets right into the hamstring. The lidocaine hurts like hell getting the needle in, then it feels just semi unpleasant as they inject it, and then it feels a different type of unpleasant when they inject the plasma.

Then it’s all over, until a few hours later when the lidocaine wears off and you realize your entire leg hurts like hell all along the hamstring, and you can’t take anything except Tylenol because the whole point of the procedure is to cause inflammation to start the healing process, so you can’t take any anti-inflammatory.

I’m really banking on this working, because my only remaining option that I know of after this is to keep searching for a doctor to do an ischial bursectomy. I found a video on YouTube that showed a doctor actually performing one of those, so maybe I’ll try to track that doctor down.

Pain sucks, fighting for treatment sucks harder, and the mental toll of this whole drawn out process is enormous. It’s only taking a pretty heavy dose of an anti-depressant and the love of family that gets me through the day and keeps me from giving up.

Cross country skiing

So three winters ago, I decided to see if I could possibly get back into cross country skiing without buggering my knees up too much. For most of that first winter, I skied at Cumming Nature Center, which is about the nearest place that had rental equipment. I had just come off a really great year of kayak racing, except for the hip pain that was making it increasingly untenable to keep paddling, and I pretty much did no paddling after August except for the Long Lake and Seneca Monster races.

So I was still pretty fit when I took up skiing, and I really enjoyed skiing around Cumming which had a great network of trails and a variety of conditions. Also their rental equipment was pretty great. The only drawback was the driving distance. I usually arrived at Cumming just as the sitting pain was becoming unbearable. On the way home I’d have to stop at least once and walk around and stretch a bit to alleviate the hip pain.

After four or five times renting, I decided to buy some equipment, a mixture of stuff bought on-line and my friend Dan’s old skis. Dan introduced me to something called “Start Tape”, that was like a 1-wax system that you applied like a tape to the wax zone of your skis. I don’t know if it’s because the wax pockets are so much better engineered that when i was skiing in the 70s and 80s or just that my expectations were lower, but I’ve continued to use the Start Tape.

Buying also meant I could ski closer to home at Durand-Eastman park, which had a mixture of groomed trails and skied in trails, and wasn’t a bad place to ski as long as the weather held. I still went back to Cumming and a few times to Bristol when snow was scarce on the ground because Bristol makes snow. It’s only a 1km or so loop, but it’s consistent snow when everybody else is ice and puddles. And when the snow is good, they have an additional loop that’s about 1.8km.

Only drawback of Bristol is that most of their customer base appears to be skate skiers, so they’re not very consistent about putting in grooves. Due to the knee problems that caused me to quit skiing the first time in the 1980s, I don’t do skate skiing any more, and I really want those grooves.

By the end of that first winter, I was tolerating the length of the drive better, and I was skiing as much as 9 or 10 kilometers at a time. A far cry from when I was training for the Canadian Ski Marathon and loppers, but I sure remembered why back when I was doing everything (skiing, orienteering, backpacking, canoeing, etc), cross country skiing was my favourite. If you don’t believe me, look at my domain name, xcski.com.

Second winter came along, and this time I did almost no paddling during the summer because of the hip pain problems. And it turned out to be a complete wipe-out for snow – the only place I skied was at Bristol, around and around that 1km loop. I think I made it up to 7 or 8 kilometers at a time. The driving wasn’t bothering me as much, and I’d often go 3 times a week. Still felt great to ski. I often felt like I was slower than the slowest skate skier, but faster than the fastest other classic skier. I took my drone a few times to get footage of myself skiing using “Follow Me” mode which was pretty cool.

It’s now the third winter. I did get out a very few times in the kayak this summer, but only for an hour or so each time. But the fitness is way, way worse this year. Most of the skiing has been at Bristol, because we haven’t had much good snow. Cumming hasn’t opened for more than a day here or there, but not fully groomed, and I managed Durand once before it all melted away. And I’m slow, just horribly horribly slow. I get one decent loop which takes about 1.5 times as long as it took me two years ago, and then the rest of it is ski for a bit, catch my breath for a bit. I’m up to 3 loops and a bit of this out and back trail called Halle-Bopp. Maybe 4 kilometers total. It’s sad. But if the winter lasts a bit longer, maybe I can add another loop or two by the end.

Except I’ve got a problem. I feel like I shouldn’t even write about this in public, because people are going to tell me to stop skiing. The problem is that my knees are acting up. My right knee especially. For a day or so after I ski, I get a terrible stabbing pain when walking up and down stairs, and sometimes even when walking on the flat. I’ve been grinning and bearing it mostly because I don’t want to give up skiing, but I’m extremely concerned.

More ranting about pain, I’m afraid

So to follow on from The current state of pain, here’s where I stand now. I’ve been paddling for about an hour every 2nd or 3rd day. I’m not very fast, and the thermarest pad I’m using to protect my hip/butt makes me very unstable. I tried biking a few times and after the first one I felt great but after the second my butt was killing me for several days afterwards, so I probably won’t be doing that again. Too bad, because Towpath Bike finally got my gear indexing set up perfectly – it’s smoother shifting that when it was brand new.

Knees

Not much change here. I think I’m getting the “stabbing pain” more frequently, especially after paddling.

Ischial Tuberoscopy Area (aka “Butt pain”)

It got good enough that I was actually able to stand a trip up to Canada, by sitting in the passenger seat with the “sciatica pain” cushion and the seat reclined a lot to keep the weight off my butt. Unfortunately I tried cycling twice and now it feels pretty much the worst it’s ever been. Hopefully it will abate over the next few weeks again.

It’s very hard to remain upbeat about this pain. It’s still restricting my activities and enjoyment of life, and OTC Aleve and Tylenol aren’t really doing much. If I forget to take it for a couple of days, I notice the pain has gone from merely nearly unbearable to completely unbearable.

I really like my new primary care physician, but she seems to have seized upon the last conclusion from the doctor who did the pain stimulator implant test who suggested I should try the Mayo Clinic or the Cleveland Clinic. That seems like a real expensive roll of the dice. I’d have to spend some unknown amount of time away from home, and I don’t know how much or how little insurance would cover.

Tooth/Jaw Pain and Headaches

The tooth/jaw pain I reported last time has been pretty much cleared up. The dentist decided the antibiotic he was giving me wasn’t working, so he switched to something stronger. Almost immediately I got a big swelling on my jaw below a tooth two down from the one he’d started the root canal on. I got that tooth removed a day or two later. After the infection died down and I got the stitches out, the root canal was finished and in a few months they’ll implant a socket where the tooth was removed so I can get a replacement.

Meanwhile, in a quest to see why I’m having all these headaches, I got an MRI of my head which showed a very bright thing in one of my sinuses. It looked scary, but when I eventually got an appointment with an ENT he said it was just a mucosal accumulation cyst, and it was nothing to worry about. About 30-40% of people have one of these and most never know it.

But long before I got to see the ENT, the headaches went away on their own. It seemed to coincide with the progress of the antibiotics. They tell me it’s very rare for infection in the lower jaw to cause headaches, but it sure seems like it did.

Diabetes?

While I was dealing with all these other things, I got a blood test that showed that my A1C had gone from 5.7 last year to 10.7 this year. I’d had this year’s blood test done at a local blood lab that I’d only just discovered was near me and I was finding it hard to believe my A1C had gone so completely to hell in just a year, so I asked for a second test which I had done at the same lab I used last year. This time it was 11.1. That’s full blown diabetes. My doctor put me on insulin – at first slow acting stuff before bed, and later I was also put on fast acting stuff before each meal. What a pain.

When I got my gall bladder out they warned me that it might take a while for my digestion to accommodate the lack of a gall bladder. I wonder if that’s what caused the diabetes? I hope so, because it means it might go away again.

Also, I started noticing that I was rubbing my feet against each other, and it seemed like I was doing it because my feet were always freezing cold and the skin on my feet are always tingling. My doctor did some simple tests and says it’s not due to lack of circulation or lack of nerve sensitivity so it’s probably not due to the diabetes. But it’s still annoying.

The current state of pain

Let’s see where I currently stand.

Knee Pain

I’ve had knee pain since I was approximately 14 years old. It’s mostly a diffuse unlocalized pain that is usually moderate but sometimes gets worse. But the worst is this stabbing pain that feels like somebody going jabbing an ice pick under my knee caps. That doesn’t happen too often, thank goodness,

Back then, the usual doctor’s approach was “Take these anti-inflammatories and stay off it for a few months”, which I would do and then restart doing stuff and then it would flare up again. Sometimes they’d tell me to do some stretches and exercises to build up my quads. Never did much except make them hurt more. Over 40+ years I tried everything from physio to having an arthroscope shoved in there to acupuncture, and no physical cause or any form of relief was ever found. But in 40+ years, I’ve also made peace with the limitations it’s placed on me. Gave up running, orienteering, backpacking, canoe tripping, walking too far, and also got more aware of doing things that could hurt them, like sitting with my knees bent.

Unfortunately in the mid to late 80s cross country ski racing was really becoming heavily biased towards skate-skiing, which was just terrible for my knees. I recently restarted skiing with several self-constraints: no skating, no skiing without groomed tracks, no racing, no more than 3 or 4 times a week. (I did 3 days in a row once and got stabbing pains in my knees afterwards.)

Ischial Tuberoscopy Area

This pain (aka “Butt pain”) came on about 2.5 years ago, and steadily got worse all through the 2021 kayak season. By April or May I was stopping in the middle of training paddles to stretch and rest my butt. By June, I was stopping frequently in the middle of races to lift my butt out of the seat. By the last race of the season, I got out of the boat and realized I would never paddle again that season. A month later I was on a long car ride (not driving) and it was so painful I was holding back the tears by the end of it. The pain was a major reason for retiring from work at the end of 2021.

This pain feels like it’s right on the “sit bones”. One of the many doctors or physical therapists I’ve seen in the last year and a bit explained just how complicated that area of your body is – as well as the sit bone (aka ischial tuberoscopy), there are bursae there, your sciatic nerve comes through and several muscles including the performis and quadrilateral femorus attach to your hip right there. It’s a very small area, near the surface and the pain level is directly related to how many hours and how hard it’s being pressed. Unfortunately because of all the things I’ve had to give up because of my knees, this pain has forced me to give up just about everything I planned to do in my retirement, like kayaking, cycling, traveling, visiting family, sitting at a computer, etc.

I’ve spent so much time in the last year seeing doctors and physical therapists and trying all kinds of diagnostic and therapeutic measures. Pretty much the last kick at the can was a spinal cord stimulator trial, but that failed. Nobody will give me any pain meds other than OTC Aleve and Tylenol, which do almost nothing (not nothing, just almost nothing). I’m kind of despairing right now.

Other Hip Pain

I haven’t actually been feeling for a while but I sometimes get an intense stabbing pain in one hip joint or the other. I started walking the dogs twice a day instead of once because walks seemed to help.

Tooth/Jaw Pain

Back in October or November, I had two fillings put in by a new (to me) dentist. He warned me that I had a filling there that was almost too large and I’d probably need a crown there sooner or later. One of those new fillings was painful right from the start – I hoping it would just sort itself out and it kind of did. The pain diminished but then recently got worse. The first thing they did was to correct my bite by reshaping the top of the filling, and that helped for a week or two, but then it got really, really painful on a Friday afternoon. So I suffered through a weekend and when I got back to the dentist he scheduled and then did a root canal (on the same day my stimulator trial was declared a failure, so it was a really great day, let me tell you.) It’s been getting better every day as the antibiotics take hold. But I’m also now painfully aware that I grind my teeth at night and clench them during the day if I’m not thinking about them. The dentist said they’re checking with the insurance company as to whether I’m eligible for a night guard.

Headaches

I get headaches nearly every day, and they often last all day. Sometimes I think they’re eye strain, but sometimes they wake me up in the middle of the night and then they’ll wreck my sleep and be with me half the day. I think at least the middle of the night ones are probably related to the teeth grinding. The day time ones might be as well or they might be eye strain. I’m thinking I might have to see my optometrist again to check my prescription.

Ear ache

I’m not sure why “headache” is one word but “ear ache” is two, but that’s the way it looks right to me.

I’ve fairly recently had a sort of hotness and ache in my left ear. That’s the same side as my painful tooth (and infection) so it might be related. It’s only a small inconvenience so I wouldn’t mention it except for the possible connection to the tooth.

Gross as this might sound, I produce a lot of ear wax. I had to buy a second set of AirPods because the first set got clogged with wax and I kind of broke something trying to clean the screens. Back when I worked at the Ministry of Transportation and Communications (the only place I ever worked that was so big and old-fashioned that they had a company nurse and doctor) the company doctor syringed out my ears once (after I got a complete blockage) and after 3 days of fruitless syringing suddenly this chunk of wax about the size of two joints of my pinky splashed down in one of those weird banana shaped basins doctors like. These days I use a paper clip that I’ve twisted to put a loop in the end to scoop out wax. I’m sure a doctor would scream if I showed them what I’m going but I’ve been doing it for years.

Restless Leg Syndrome?

If you’d asked me five years ago about Restless Leg Syndrome, I’d say it was a made up thing to sell drugs. But sometime over the last few years I’ve found myself with my legs twitching without any reason. If I feel it coming and concentrate on it really hard, I can stop it, but only for as long as I concentrate. As soon as I go back to reading or whatever, it starts up. Slightly annoying.

To sum up

I don’t where I’m going forward from here. My therapist thinks the knee and butt pain are related to past trauma, which is why they’re not responding to treatments. But I’m not seeing any pain relief in therapy either. I keep asking him when I can expect any sort of change, and he just says it’ll happen when it happens.

But while I wait, I keep hoping for physical medicine to prevail. But I don’t see what I can do on that front. I’m also going to start pursuing “alternative medicine” for pain relief.

A weird thought

I had a weird thought the other night. There are a couple of programming tasks on my massive “to do” list that I figured I’d power through in the first few months of retirement before I started spending hours and hours alternating between training in my kayak and touring on bikes with my wife.

Well, life doesn’t always work out the way you intended and none of my todo items has been checked off because the pain that last year made it uncomfortable to sit for too long, and which was just on the “barely tolerable” end of things by the end of a normal length kayak race has now progressed to absolutely intolerable for even short stints at a desk chair or kayak. I’ve spent about 15 minutes total all winter in my erg, and haven’t even put my kayaks in the water. Normally by this time of the year I’d have 30 or 40 hours on the erg and about the same on the water. And I limit my sitting at my desk chair to short periods to deal with bills and paying taxes and the like. Even the library easy chairs are uncomfortable verging on painful these days.

But back to my weird thought. I have a new iPad. I can’t afford a new laptop. So I was thinking that for those programming tasks, what I might try is to install “code-server”, which is a hosted version of Visual Studio Code, on my linux server. This gives you the full power of a pretty extensive IDE available through an iPads web browser. I could try coding up one of those projects using that, maybe using the git integration to push the app to a free heroku instance for testing and debugging. I wonder if that’s doable?

Well, in order to find out, first I’d have to install code-server and make it available through my web server. Oh, what’s this, it appears you need to use nginx as your web server rather than Apache to do that. Well, no problem, I’ve been intending to make that switch to make it easier to use LetsEncrypt to put everything behind https like I should have years ago. Oh wait, one of my sites uses Perl fastcgi. Looks like there’s some extra hoops you have to jump through to configure that. And also convert all my .htacess files into clauses in the nginx configuration files.

Sigh, this is going to be a full in yak shaving exercise, isn’t it? I just wish the pain killers I take to be able to sleep at night didn’t leave me dizzy and disoriented all day, or that they actually killed the pain instead of just knocking me out.