Ebiking and chronic pain

I gave up on cycling, because of my disability. Then I found out about e-bikes!

I’m on SSDI, so it took a long time before I could get one. Now, I’ve sold my car, and my Rad Wagon 4 is my sole vehicle. Riding it is like injecting joy, and my physical therapist is astonished at how quickly my strength and balance are improving every week.

No one within shouting distance of me will give up cycling solely because of disability again, if I can help it! 😊
It's my car too - congratulations!
 
I gave up on cycling, because of my disability. Then I found out about e-bikes!

I’m on SSDI, so it took a long time before I could get one. Now, I’ve sold my car, and my Rad Wagon 4 is my sole vehicle. Riding it is like injecting joy, and my physical therapist is astonished at how quickly my strength and balance are improving every week.

No one within shouting distance of me will give up cycling solely because of disability again, if I can help it! 😊
It's my car too - congratulations!
 
I gave up on cycling, because of my disability. Then I found out about e-bikes!

I’m on SSDI, so it took a long time before I could get one. Now, I’ve sold my car, and my Rad Wagon 4 is my sole vehicle. Riding it is like injecting joy, and my physical therapist is astonished at how quickly my strength and balance are improving every week.

No one within shouting distance of me will give up cycling solely because of disability again, if I can help it! 😊
It's my car too - here in SoCal, ebiking is a year round thing! All the best to you!
 
DocSmith, you quoted me, with no other message. Did you mean to share some wisdom? :)
 
You might benefit from a good-quality suspension seat post


- it saved my tail!
Suspension seat post is not enough for me, full suspension is my choice for biking. I too landed on my tail bone hard off of a flatbed trailer, no surgery required but long rides I can feel the dull pain. With full suspension I'm comfortable riding 20 to 30 miles daily. Sometimes I wear padded shorts. I'm 57 yo, ebiking has kept me active. It feels like luxury exercise.
@DocSmith are you still with us enjoying the luxury of ebiking?
You might be right, Doc-- on my Trek kit bike, the current seat post is pretty bad. I wonder how much weight a good one would add... and I'm also wondering about replacing the suspension stem. Seems ridiculous to invest another $400 or so in that bike, but I do ride it at least once a week for shorter fitnesss rides.

Rome, I'm curious as to your perception of the difference between rear suspension on a hard tail vs. full suspension. One of the long term options I'm considering is having Pedaluma build me an ultralight long range bike... but to do it, I'm pretty sure it has to be a hard tail.

Did you try any intermediate-advanced trails on the suspension seat post? Was it any help with traction at all, or did it just dampen a little vibration? I think a hard tail / suspension seat post ultralight kit bike would be fine for Griffith Park, but not enough for the Verdugos. I think it would be scary at speed going downhill, and uncomfortable going up.

I don't really need to worry about this for a few years, just like having a plan!
 
Great thread.

I am using the eBike to reverse a very sedentary existence the past few years. I'm 60.

I Am worried about pain I am experiencing from riding. I thought it was all my butt, but after breaking a good seat in and covering it, I realize the remainder of the pain is really in my tailbone. Aerobically, I feel like I could ride some longer rides, but from the pain, I can only do about 5 to 7 miles at this point. Concerned that the pain will interfere with this otherwise great, healthy hobby.
Fourteen years and 100 pounds ago I was in a similar boat. I wanted to bike to shed the pounds (I was up to 280, which is bad at 5'4"), butt my tailbone was killing me... right up until I switched to a cruiser.

My old conventional 3 speed, cheap Micagi Tahiti NX3:

Bike2010_front.jpg

Even back then I never did anything "stock". Custom cranks, bigger chainwheel, homebrew headlight and battery box...

Far too many bikes assume you're going to use the "crotch rocket" lean forward over the bars position, thus the straight bars and butt floss seats. The combination -- as was stock on my Aventure -- is fine for young healthy riders, but as you get older or have problems that leaning forwards causes neck, shoulder, and even wrist strain no matter how much you try to dial it in.

To that end I've come to HATE straight bars.

The more forward you lean, the more those skinny seats make sense, but something I rarely see discussed is how the farther back and upright you ride, your weight shifts until the narrow seats are pounding your tailbone by spreading the glutes. Butt flossing yourself is not a comfortable ride.

Cruiser bikes are meant for an upright riding position, thus the longer swept-back bars and wider seats. Think about it, is the same part of your body touching the seat when you're leaning way the hell forward as opposed to when sitting upright? Of course not. When leaning forward your weight gets moved to the perineal. That's the "taint' for those of you who don't know anatomy. As your stance goes more and more upright that gets shifted to the sacrum. Aka tailbone.

I'm amazed how many "experts" out there seem to scream "narrow seat, narrow seat" or "get your sitz bones measured" without taking into account stance, which completely changes your weight distribution when seated! They're so obsessed with the "aerodynamic position" they thumb their nose at any other notion.

Dialing in a good comfortable ride is more than just seat, it's also bar length and distance. Getting mine adjusted right was a bit of a trick as the cruiser bars got the right angle and width, but because of the frame length I had to get a longer neck to then push it forward. A more intermediate bar would probably have made more sense, but I was working with what I had on hand and could afford.

For now this arrangement:
newFork3.jpg

Black and red with whitewalls... It's just my "thing"

Is working for me, though I feel like the crank could stand to be a bit more forward and/or the front end a bit higher. Using a longer fork / fork adjustment thanks to the double-shoulder set helped a lot too raising the front end about an inch and a half.

The really long neck / stem pushing the cruiser bars forward, whilst retaining their longer width and angle removing any trace of shoulder and wrist pain, further helped by the (cheap) paddle grips.

Ihud.jpg

It can get a little pricey dialing these things in, but the idea of "one size fits all" is always ridiculous, more-so when it comes to ergonomics.

There are so many things that can mess you up. Leaning too far forward for a wider seat, leaning too far back for a narrower seat, bar too wide or narrow for your stance, bar too far forward, back, up, or down. Bar angle at your grip, seat angle, seat height...

Hell the number of people I see where they have the seat too low so they're causing knee and buttocks pain. Though conversely I don't understand the people who have the seat higher than the bars, that cannot be comfortable. My 50-something year old back doesn't bend that way anymore. I don't want the lean the freak forward crotch rocket stance because I'm after a calm comfortable ride on roads and prepared paths.

I have no plans to "send it" down a double-black, do competitive racing, or hill climb challenges... and it often seems like a lot of cycling "experts" lose sight of that; looking down their noses at us more... casual riders. Not that cultism, elitism, and insular attitudes are unique to cycling. Starts to feel like how in retro-computing the "demo scene" and I get along like sodium and water.

I played around with dozens of seats (blessed be Amazon's no questions returns!) It's funny I tried a nose-less one and that was horrifying. Not from a comfort point of view, but safety. I was shocked how much "balance" comes from that forward protrusion in the seat. Constantly felt like the bike was going to pitch over and I was gonna go flying off it.

Just like swapping out the cranks, chainring and cogsets to best match myself and the motor.

One size fits all fits nobody!

Now, all that said, I've found riding to be very therapeutic for pain. Between diabetic neuropathy, a medication induced parkinsonism thanks to some quack giving me Neurontin off-label, much less a host of prior injuries, I was very quickly becoming unable to ride my old cruiser with any frequency. The e-bike has definitely solved most of the problems I was having in both mobility and remaining strength.

It's actually starting to be a 'problem!" A good hour or two of riding -- now that I have the bike dialed in -- gives me three to four hours of solid pain relief, which makes me keep getting up and going for rides whenever the pain comes back. Thankfully I've got two batteries and two chargers. But it's throwing off my sleep; not good when you also have non-24 sleep-wake disorder. The leading reason I'm considered disabled. I'm incapable of living a 24 hour day and have to live a 26 hour cycle of an extra hour sleep and an extra hour awake.

I also think my ear-to-ear grin is creeping people out on the paths, it's just so good to be pain-free without resorting to medications. For some reason I'm now ridiculously paranoid about taking prescriptions. It's even reducing the frequency of my crippling headaches -- caused by a hyperactive ventromedial pre-frontal cortex -- that are so severe I've got a script for Sumatriptan.

Fun medication that one...
 
DocSmith, you quoted me, with no other message. Did you mean to share some wisdom? :)
Not a lot. The comments regarding measuring the 'reach', getting a suspension post, and a nice, comfy seat pretty much covered it. TBH, I was having a bit of trouble navigating the site at first. All the best to you, my friend
 
I lost the ability to lift my legs more than one inch when I was walking. I ended up with a laminectomy L3 through S1. I can walk again but I do not have as much strength in my legs as I used to before my leg strength left me. I was riding 100-150 miles a week before I had trouble walking. After surgery and I gained the ability to walk better I started bike riding again. However, without the strength in my legs I couldn't ride very far maybe only 5 miles to 8 miles.
I decided to buy an ebike but needed to find something that didn't weigh much as I could only lift 30 pounds for a period of time. I found a Orbea Gain M30 that fit the bill with power assist. I have only made one week where I have ridden over 100 miles, 111 miles to be exact, but I can ride between 15 and 24 miles now at a time with only needing the power assist at times when I am going up hills or when my legs just have any strength. My heart rate has gone from 120BPM to 85 going up one of the hills. I think my heart muscle has become stronger because of my bike riding.
I am so pleased to just be back on the bike. My bike is a drop bar road bike and I find I am in less pain when I am bent over and in the hoods or in the drops.
I told this to my neurosurgeon and he being an avid cyclist said it made sense because my back bones were more spread out and not in compression.
 
I lost the ability to lift my legs more than one inch when I was walking. I ended up with a laminectomy L3 through S1. I can walk again but I do not have as much strength in my legs as I used to before my leg strength left me. I was riding 100-150 miles a week before I had trouble walking. After surgery and I gained the ability to walk better I started bike riding again. However, without the strength in my legs I couldn't ride very far maybe only 5 miles to 8 miles.
I decided to buy an ebike but needed to find something that didn't weigh much as I could only lift 30 pounds for a period of time. I found a Orbea Gain M30 that fit the bill with power assist. I have only made one week where I have ridden over 100 miles, 111 miles to be exact, but I can ride between 15 and 24 miles now at a time with only needing the power assist at times when I am going up hills or when my legs just have any strength. My heart rate has gone from 120BPM to 85 going up one of the hills. I think my heart muscle has become stronger because of my bike riding.
I am so pleased to just be back on the bike. My bike is a drop bar road bike and I find I am in less pain when I am bent over and in the hoods or in the drops.
I told this to my neurosurgeon and he being an avid cyclist said it made sense because my back bones were more spread out and not in compression.
I can only ride about 10-15 miles at a time right now, but to get that freedom, to go do errands, to have independence is more of a joy than I can say. I'm so glad you're able to have this freedom, my friend. Congratulations!
 
Fourteen years and 100 pounds ago I was in a similar boat. I wanted to bike to shed the pounds (I was up to 280, which is bad at 5'4"), butt my tailbone was killing me... right up until I switched to a cruiser.

My old conventional 3 speed, cheap Micagi Tahiti NX3:

Bike2010_front.jpg

Even back then I never did anything "stock". Custom cranks, bigger chainwheel, homebrew headlight and battery box...

Far too many bikes assume you're going to use the "crotch rocket" lean forward over the bars position, thus the straight bars and butt floss seats. The combination -- as was stock on my Aventure -- is fine for young healthy riders, but as you get older or have problems that leaning forwards causes neck, shoulder, and even wrist strain no matter how much you try to dial it in.

To that end I've come to HATE straight bars.

The more forward you lean, the more those skinny seats make sense, but something I rarely see discussed is how the farther back and upright you ride, your weight shifts until the narrow seats are pounding your tailbone by spreading the glutes. Butt flossing yourself is not a comfortable ride.

Cruiser bikes are meant for an upright riding position, thus the longer swept-back bars and wider seats. Think about it, is the same part of your body touching the seat when you're leaning way the hell forward as opposed to when sitting upright? Of course not. When leaning forward your weight gets moved to the perineal. That's the "taint' for those of you who don't know anatomy. As your stance goes more and more upright that gets shifted to the sacrum. Aka tailbone.

I'm amazed how many "experts" out there seem to scream "narrow seat, narrow seat" or "get your sitz bones measured" without taking into account stance, which completely changes your weight distribution when seated! They're so obsessed with the "aerodynamic position" they thumb their nose at any other notion.

Dialing in a good comfortable ride is more than just seat, it's also bar length and distance. Getting mine adjusted right was a bit of a trick as the cruiser bars got the right angle and width, but because of the frame length I had to get a longer neck to then push it forward. A more intermediate bar would probably have made more sense, but I was working with what I had on hand and could afford.

For now this arrangement:
newFork3.jpg

Black and red with whitewalls... It's just my "thing"

Is working for me, though I feel like the crank could stand to be a bit more forward and/or the front end a bit higher. Using a longer fork / fork adjustment thanks to the double-shoulder set helped a lot too raising the front end about an inch and a half.

The really long neck / stem pushing the cruiser bars forward, whilst retaining their longer width and angle removing any trace of shoulder and wrist pain, further helped by the (cheap) paddle grips.

Ihud.jpg

It can get a little pricey dialing these things in, but the idea of "one size fits all" is always ridiculous, more-so when it comes to ergonomics.

There are so many things that can mess you up. Leaning too far forward for a wider seat, leaning too far back for a narrower seat, bar too wide or narrow for your stance, bar too far forward, back, up, or down. Bar angle at your grip, seat angle, seat height...

Hell the number of people I see where they have the seat too low so they're causing knee and buttocks pain. Though conversely I don't understand the people who have the seat higher than the bars, that cannot be comfortable. My 50-something year old back doesn't bend that way anymore. I don't want the lean the freak forward crotch rocket stance because I'm after a calm comfortable ride on roads and prepared paths.

I have no plans to "send it" down a double-black, do competitive racing, or hill climb challenges... and it often seems like a lot of cycling "experts" lose sight of that; looking down their noses at us more... casual riders. Not that cultism, elitism, and insular attitudes are unique to cycling. Starts to feel like how in retro-computing the "demo scene" and I get along like sodium and water.

I played around with dozens of seats (blessed be Amazon's no questions returns!) It's funny I tried a nose-less one and that was horrifying. Not from a comfort point of view, but safety. I was shocked how much "balance" comes from that forward protrusion in the seat. Constantly felt like the bike was going to pitch over and I was gonna go flying off it.

Just like swapping out the cranks, chainring and cogsets to best match myself and the motor.

One size fits all fits nobody!

Now, all that said, I've found riding to be very therapeutic for pain. Between diabetic neuropathy, a medication induced parkinsonism thanks to some quack giving me Neurontin off-label, much less a host of prior injuries, I was very quickly becoming unable to ride my old cruiser with any frequency. The e-bike has definitely solved most of the problems I was having in both mobility and remaining strength.

It's actually starting to be a 'problem!" A good hour or two of riding -- now that I have the bike dialed in -- gives me three to four hours of solid pain relief, which makes me keep getting up and going for rides whenever the pain comes back. Thankfully I've got two batteries and two chargers. But it's throwing off my sleep; not good when you also have non-24 sleep-wake disorder. The leading reason I'm considered disabled. I'm incapable of living a 24 hour day and have to live a 26 hour cycle of an extra hour sleep and an extra hour awake.

I also think my ear-to-ear grin is creeping people out on the paths, it's just so good to be pain-free without resorting to medications. For some reason I'm now ridiculously paranoid about taking prescriptions. It's even reducing the frequency of my crippling headaches -- caused by a hyperactive ventromedial pre-frontal cortex -- that are so severe I've got a script for Sumatriptan.

Fun medication that one...
lol - yeah, my outrageous, face-splitting grin is weird to some folks, but they could always try a well-fitting ebike. Then they'd understand! Hey, I'm so glad you've worked all of this out. As I said, I also went through a lot - multiple saddles, 2 other ebikes - before finding the solution. But even as I worked through, the experience, and the health improvement, was a tremendous experience. Ride on, my friend!
 
Glad you found something that fits you. I think proper fit is much more important than amount of power, type of motor, and all the other stuff discussed in these forums. You might be interested in this thread ...
Thanks for that suggestion - yes, as a tool for recovery, as a health-building option for those who are sick, ill, or injured (or just getting older), ebikes are the bees knees!
 
Great thread.

I am using the eBike to reverse a very sedentary existence the past few years. I'm 60.

I Am worried about pain I am experiencing from riding. I thought it was all my butt, but after breaking a good seat in and covering it, I realize the remainder of the pain is really in my tailbone. Aerobically, I feel like I could ride some longer rides, but from the pain, I can only do about 5 to 7 miles at this point. Concerned that the pain will interfere with this otherwise great, healthy hobby.
Hey, I'm just checking in with you. I hope that the various solutions people have posted served you well. I hit a wall recently (major foot surgery) and the road back is challenging - short rides are necessary for a while - but the ebike is still a great tool for me to heal up. I hope you're doing well, my friend. All the best to you
 
Well, that's true... for almost everyone.

Mixed Connective Tissue Disorder here, pain can be anywhere, but seems to mainly rotate through a few different spots.

One of those spots is my hands, and my thumbs specifically.

I have two e-bikes, I do have a throttle on my hub drive... and I find that it's a little hard on my thumb!

Your general point is really well taken. 64 here, I seem to have given up skiing in 2019, though I still plot a possible return, I'm not sure I'll follow through... I've been on blood thinners since about 2005, and am thinking about quitting while I'm ahead on that one. I can still bodyboard 5 or 10 days a year, but I may have to stop that in a year or two as well. I think the eMTB will be in my future for a long time.

I agree on fit... I do have an old road bike back in NYC, and I do ride it whenever I am back there. But it is SO much harder on my back and shoulders than either my kit-bike hub drive or my eMTB. The eMTB's riding position may be considered 'aggressive,' but compared to the road bike, it's absolutely comfy-- I know that's not the primary purpose of suspension and I appreciate the extra traction from suspension greatly-- I would have dumped any bike without suspension three times on my ride yesterday. But it also reduces wear and tear on my joints.

Riding the kit bike, I find that technique is very important-- it has stem and seat post suspension which helps, but only if I remind myself to hold the bars a bit more loosely while I'm going over cracked pavement or roots.

I ride a very similar distance to you. Eight to 13 miles is my usual ride, three to five times a week when I'm not flaring, with 600 to 1300 feet of vertical. During a flare, I'll only ride three or four miles on the kit bike, avoiding bumps and using as little motor as possible so I get 20 minutes of decent cardio covering a much shorter distance. Flares are weird-- on rare occasions, I find that the conventional wisdom to avoid exercise can make symptoms worse. More commonly, however, it's better for me to play hurt and fight it even if I have to dip down to 90 minutes a week of cardio. And occasionally, I can 'work through' a flare-- if I time it just right, I can shut down the flare faster with moderate exercise. Tricky business, but much better riding vs. not riding!
I'm just checking in on you, hoping you're doing well. When I switched bikes, the upright position helped a lot, and I stopped having to buy new saddles, chasing a comfortable posture. I noticed the comment on holding the bars loosely, and I solved this in two ways. I moved to a suspension front fork and added ergonomic grips (plus a suspension seat post). It made all the difference in the world. All the best to you, my friend
 
I feel ya doc! Little by slow arthritis that I had since I was 14, that was misdiagnosed three times, finally got the best of me. A musician for 50 years I finally lost a professional use of my hands. After chemo save my life it destroyed my central nervous system in my feet. I can barely walk and I spent three years laying in bed reading books about how to kill myself. I’m not kidding. One of the things that help me was a series of E bikes and E scooters. Back in the year 2000 I bought a tidal force, which was from a company led by Leah coca. Then I bought an ego scooter from a company that was started in Cambridge and then eventually the Copenhagen wheel via Superpedestrian . Well, you live in learn. I guess. But I’m very disappointed that Superpedestrian has stopped making a Copenhagen Wheel Anna switched over to 500 scooter large fleets. In other words unless you order 500 of those scooters you can’t buy singles. But getting out there with a little help from a throttle and some electricity has really been one of the joys of my life. So good luck to you and me and all the people that suffer from chronic daily pain. Very few people understand what we know. And that is it’s only gonna get worse, never better.
I wanted to check in with you, hope you're doing well. On the pain getting worse - I had the best day in 1.5 decades last week. I'm working on recovering from foot surgery, but by using journaling as a tool, deep slow diaphragm breathing with a relaxation visualization daily (or more, at need), light stretching and qi gong, better diet (less inflammatory foods) and several other tools, I'm actually hurting less. I've also reduced my medication load, and my dosages. It's out there, my friend. I have a book coming out in 2023 on ways to do it, ditto YouTube videos, slowly, one at a time (you know what pain is like - you can't schedule squat). I hope that others can hurt a little less, improve a bit. Take care of yourself, my friend
 
Thanks! I appreciate the check-in.

My sponsor in AA has added a morning meditation/prayer thing as well as the evening one, and the morning meditation does have a breathing element. Took four or five days to kick in, but this morning, it was explosive. I burst into tears-- of joy? Kind of?-- and then just ripped into three psychotherapy hours with very challenging clients. It was more mental than physical, but I felt super sharp.

It's been very up-and-down here, at least until 10 days ago. Headache pain AND musculoskeletal pain were terrible after a trip back east, which sucks, because we played two shows -- one a puiblic-access television appearance, the other a live gig outdoors with 150 people -- and we killed it! We had some serious blues players join us on stage, and I was totally keeping up, they're turning around and looking at me and smiling, audience is screaming and clapping. And the arthritis in my hands is so bad that I can't sign a CHECK without hearing the joints click and feeling the pain. I can't pick up a flatpick if drops on a wooden floor, but so long as I can hang onto it, my meter was bomb-proof, my right hand was wicked fast, and the left one was good enough!

I was so happy, so great to see everyone-- but felt like crap physically at the end of the trip.

After I got back, the good days were at or slightly above baseline, but the bad days were far worse. I had one GREAT day on the bike when I blasted through 10 miles and 1,200 feet of vertical really quickly-- then another when I got creamed by about 60% of that.

* * * * *

First, the bad news: I had a terrible appointment with a neurologist, who diagnosed me with "medication overuse headache." The criteria are both ephemeral and circular: Anyone can be diagnosed with it for using any kind of analgesic daily or nearly daily. Vicodin, Norco, triptans? Doesn't matter! That's what's causing your headache. In my case? The diagnosis was absolutely made before the appointment.

Headache from rheumatic disorder? Brain tumor? Migraine? Etiology doesn't matter!

And get this: The neurologist makes the decision about whether your pain has increased with absolutely no input from you. "See, your pain is increasing." "Whoa! I never said that." "Well, you avoid sunlight on days when you take no medication, right?" "Yes, of course." "Well, that means your pain is getting worse." "Absolutely not. I avoid headache triggers because that's what I was told to do in order to delay onset of headache." "That's because your pain is getting worse despite the medication." I guess some folks never read Kafka.

Also told the neurologist I was jet-lagged and had just come back from a grueling trip with a brutal rehearsal schedule, but no: The headache is caused by the medication I'm taking to relieve it. There are two protocols for this fictional diagnosis: With one, you gradually replace the medication with something else (American) and the other is stop the other medication completely first (European). Of course, this neurologist follows the European version. My way or the highway!

"We would taper you 10% every two weeks." "But I can go several days without medication anyway, you can see that from the refill schedule. There's no dependence with opiates at doses this low, only with SSRIs." "Well, you could try cold turkey, but you'd be very uncomfortable."

Really? On days when I don't take the medication, I feel fine. "What medications might we try if I discontinued the opiates?" "I have no idea, there are hundreds of them." I swear, I'm not making this up.

No one wants to believe they were referred to a specialist who has completely lost their mind. Could all this be true? I did a thorough literature review, and at first, I was like, "Gee, wow, dozens of studies on this disorder, maybe there's something to this."

But half of them are meta-analyses which reference the first half, and 2/3 of those have "stopping medication" as the endpoint, not improved quality of life or reducing pain. Dig a little deeper, and there are about a dozen other articles written by the sane doctors which state the obvious: There is no objective criteria for the diagnosis, it may not even exist, and even if it does, it's done nothing to help find a better treatment. 30% of patients relapse, which is defined as 'resuming medication.' Are they better off or worse? Not measured.

And people wonder why no one trusts health care providers these days.

* * * * *

Now, the good news-- maybe very good news: Magnesium and Vitamin B2, 400 mg. each recommended by primary care. It's only been two weeks, too early to be sure, but I'm more optimistic than I've been in at least 10 years. Headaches either start later in the day-- and who cares if a headache starts at 11:00, so long as it's not bad enough to keep me awake? Or they are bimodal and much shorter: Headache starts just before lunch, take the supplements after lunch, and the symptoms don't come back until after dinner. Hey, I can deal with that!

The other thing: My energy level might be increasing. Though slowly. Like the decrease in pain, it's not a huge difference-- 5 to 15% most days, but over 30% on others. Magnesium has something to do with nerve conduction, DNA synthesis? And the B2's benefits may accumulate over months. I don't want to get my hopes up, but it's encouraging.

I don't put a lot of stock in anecdotal reports, that's the LAST data point I look at. But if you look at "Medication Overuse Headache Treatment," there's... er, not a lot of positive patient feedback. I found one first-hand case report that said "I quit all my meds, and I feel great! I'm so ashamed, the answer was right in front of me all this time!" Exactly one.

But magnesium and B2? Hundreds of posts and testimonials on multiple platforms. "I didn't believe this would work, but the headaches are half as bad and half as frequent."

This should mean more riding! My goal: A 38 mile transit from one end of the Verdugo Mountains to the other with 4,500 feet of vertical. We'll see how the training goes-- I'll hit this thread again in a week or two, let you know it goes!
 
Fourteen years and 100 pounds ago I was in a similar boat. I wanted to bike to shed the pounds (I was up to 280, which is bad at 5'4"), butt my tailbone was killing me... right up until I switched to a cruiser.

My old conventional 3 speed, cheap Micagi Tahiti NX3:

Bike2010_front.jpg

Even back then I never did anything "stock". Custom cranks, bigger chainwheel, homebrew headlight and battery box...

Far too many bikes assume you're going to use the "crotch rocket" lean forward over the bars position, thus the straight bars and butt floss seats. The combination -- as was stock on my Aventure -- is fine for young healthy riders, but as you get older or have problems that leaning forwards causes neck, shoulder, and even wrist strain no matter how much you try to dial it in.

To that end I've come to HATE straight bars.

The more forward you lean, the more those skinny seats make sense, but something I rarely see discussed is how the farther back and upright you ride, your weight shifts until the narrow seats are pounding your tailbone by spreading the glutes. Butt flossing yourself is not a comfortable ride.

Cruiser bikes are meant for an upright riding position, thus the longer swept-back bars and wider seats. Think about it, is the same part of your body touching the seat when you're leaning way the hell forward as opposed to when sitting upright? Of course not. When leaning forward your weight gets moved to the perineal. That's the "taint' for those of you who don't know anatomy. As your stance goes more and more upright that gets shifted to the sacrum. Aka tailbone.

I'm amazed how many "experts" out there seem to scream "narrow seat, narrow seat" or "get your sitz bones measured" without taking into account stance, which completely changes your weight distribution when seated! They're so obsessed with the "aerodynamic position" they thumb their nose at any other notion.

Dialing in a good comfortable ride is more than just seat, it's also bar length and distance. Getting mine adjusted right was a bit of a trick as the cruiser bars got the right angle and width, but because of the frame length I had to get a longer neck to then push it forward. A more intermediate bar would probably have made more sense, but I was working with what I had on hand and could afford.

For now this arrangement:
newFork3.jpg

Black and red with whitewalls... It's just my "thing"

Is working for me, though I feel like the crank could stand to be a bit more forward and/or the front end a bit higher. Using a longer fork / fork adjustment thanks to the double-shoulder set helped a lot too raising the front end about an inch and a half.

The really long neck / stem pushing the cruiser bars forward, whilst retaining their longer width and angle removing any trace of shoulder and wrist pain, further helped by the (cheap) paddle grips.

Ihud.jpg

It can get a little pricey dialing these things in, but the idea of "one size fits all" is always ridiculous, more-so when it comes to ergonomics.

There are so many things that can mess you up. Leaning too far forward for a wider seat, leaning too far back for a narrower seat, bar too wide or narrow for your stance, bar too far forward, back, up, or down. Bar angle at your grip, seat angle, seat height...

Hell the number of people I see where they have the seat too low so they're causing knee and buttocks pain. Though conversely I don't understand the people who have the seat higher than the bars, that cannot be comfortable. My 50-something year old back doesn't bend that way anymore. I don't want the lean the freak forward crotch rocket stance because I'm after a calm comfortable ride on roads and prepared paths.

I have no plans to "send it" down a double-black, do competitive racing, or hill climb challenges... and it often seems like a lot of cycling "experts" lose sight of that; looking down their noses at us more... casual riders. Not that cultism, elitism, and insular attitudes are unique to cycling. Starts to feel like how in retro-computing the "demo scene" and I get along like sodium and water.

I played around with dozens of seats (blessed be Amazon's no questions returns!) It's funny I tried a nose-less one and that was horrifying. Not from a comfort point of view, but safety. I was shocked how much "balance" comes from that forward protrusion in the seat. Constantly felt like the bike was going to pitch over and I was gonna go flying off it.

Just like swapping out the cranks, chainring and cogsets to best match myself and the motor.

One size fits all fits nobody!

Now, all that said, I've found riding to be very therapeutic for pain. Between diabetic neuropathy, a medication induced parkinsonism thanks to some quack giving me Neurontin off-label, much less a host of prior injuries, I was very quickly becoming unable to ride my old cruiser with any frequency. The e-bike has definitely solved most of the problems I was having in both mobility and remaining strength.

It's actually starting to be a 'problem!" A good hour or two of riding -- now that I have the bike dialed in -- gives me three to four hours of solid pain relief, which makes me keep getting up and going for rides whenever the pain comes back. Thankfully I've got two batteries and two chargers. But it's throwing off my sleep; not good when you also have non-24 sleep-wake disorder. The leading reason I'm considered disabled. I'm incapable of living a 24 hour day and have to live a 26 hour cycle of an extra hour sleep and an extra hour awake.

I also think my ear-to-ear grin is creeping people out on the paths, it's just so good to be pain-free without resorting to medications. For some reason I'm now ridiculously paranoid about taking prescriptions. It's even reducing the frequency of my crippling headaches -- caused by a hyperactive ventromedial pre-frontal cortex -- that are so severe I've got a script for Sumatriptan.

Fun medication that one...
Hey, Jason-- noticed your hand grips! I have something similar, same design anyway, on my Trek kit bike and I love them! I feel like I'm still learning to use them, but if I hold the grips just right, they seem to dampen the bumps quite as bit.

As for the hyperactive ventromedial prefrontal cortex: Listen, I got no beef with neurologists generally. I've partnered with a neurologists on some very hairy cases-- with MS in particular-- and that was one awesome clinician! One reason I liked her? She admitted what she didn't know. Why did the lesions disappear in our patient? She admitted she had absolutely no idea-- and guarded my client like a hawk.

My mom's neurologist when she had Parkinson's was the same way. He admitted that a lot of what he did was near alchemy, warned me about some supplement treatments that were shady, others that were safe, and some that might work. He did great by my mom. I love that guy.

But the idea of functional specificity in brain structures is incredibly complicated and nuanced, and there is a ton of neurobabble out there. I do believe that area of the PFC is involved in headache pain... for most patients. But I believe others could feel it somewhere else.

We also know, for example, that the speech center is in the parietal lobe-- Broca's area, I guess-- but... left or right side? Usually the left side if you're right handed, but if you're left handed... sometimes it's on the right, sometimes on the left. Or maybe even somewhere else. And I remember my mom (a speech therapist) working with an aphasia patient whose speech center should have been entirely destroyed in a terrible accident... but the structures are super plastic. She learned to speak again, slowly, but quite well-- so something else took over; we have no idea what.

I also worked on a PR campaign in the '80s for something called a neurometric analyzer that was supposed to revolutionize treatment of all kinds of neuro disorders, compare PET imaging with a database of norms or whatever. And that sh*t never worked.

I don't want to contradict OR question your doctor's advice, I'm just sharing my own experience: I really trust some neurologists more than others. Other areas of the brain may be involved in pain processing for you. What makes sense to me is that it depends on the cause of the disorder and the way your own brain functions.

For me, I would never take triptans, I don't want any stroke risk, I'm on blood thinners. If I wasn't, I might consider them. And I think serotnin drugs are junk, right across the board. We don't understand the serotonin system, full stop. Norepinephrine is also super tricky. GABA can be super risky, but is way, way simpler.

Maybe ask your doc about Magnesium and B2? Who knows, maybe a month from now, I'll be back here saying I was crazy, it doesn't work. But so far, so good, two weeks in, headaches are much better.
 
Thanks! I appreciate the check-in.

My sponsor in AA has added a morning meditation/prayer thing as well as the evening one, and the morning meditation does have a breathing element. Took four or five days to kick in, but this morning, it was explosive. I burst into tears-- of joy? Kind of?-- and then just ripped into three psychotherapy hours with very challenging clients. It was more mental than physical, but I felt super sharp.

It's been very up-and-down here, at least until 10 days ago. Headache pain AND musculoskeletal pain were terrible after a trip back east, which sucks, because we played two shows -- one a puiblic-access television appearance, the other a live gig outdoors with 150 people -- and we killed it! We had some serious blues players join us on stage, and I was totally keeping up, they're turning around and looking at me and smiling, audience is screaming and clapping. And the arthritis in my hands is so bad that I can't sign a CHECK without hearing the joints click and feeling the pain. I can't pick up a flatpick if drops on a wooden floor, but so long as I can hang onto it, my meter was bomb-proof, my right hand was wicked fast, and the left one was good enough!

I was so happy, so great to see everyone-- but felt like crap physically at the end of the trip.

After I got back, the good days were at or slightly above baseline, but the bad days were far worse. I had one GREAT day on the bike when I blasted through 10 miles and 1,200 feet of vertical really quickly-- then another when I got creamed by about 60% of that.

* * * * *

First, the bad news: I had a terrible appointment with a neurologist, who diagnosed me with "medication overuse headache." The criteria are both ephemeral and circular: Anyone can be diagnosed with it for using any kind of analgesic daily or nearly daily. Vicodin, Norco, triptans? Doesn't matter! That's what's causing your headache. In my case? The diagnosis was absolutely made before the appointment.

Headache from rheumatic disorder? Brain tumor? Migraine? Etiology doesn't matter!

And get this: The neurologist makes the decision about whether your pain has increased with absolutely no input from you. "See, your pain is increasing." "Whoa! I never said that." "Well, you avoid sunlight on days when you take no medication, right?" "Yes, of course." "Well, that means your pain is getting worse." "Absolutely not. I avoid headache triggers because that's what I was told to do in order to delay onset of headache." "That's because your pain is getting worse despite the medication." I guess some folks never read Kafka.

Also told the neurologist I was jet-lagged and had just come back from a grueling trip with a brutal rehearsal schedule, but no: The headache is caused by the medication I'm taking to relieve it. There are two protocols for this fictional diagnosis: With one, you gradually replace the medication with something else (American) and the other is stop the other medication completely first (European). Of course, this neurologist follows the European version. My way or the highway!

"We would taper you 10% every two weeks." "But I can go several days without medication anyway, you can see that from the refill schedule. There's no dependence with opiates at doses this low, only with SSRIs." "Well, you could try cold turkey, but you'd be very uncomfortable."

Really? On days when I don't take the medication, I feel fine. "What medications might we try if I discontinued the opiates?" "I have no idea, there are hundreds of them." I swear, I'm not making this up.

No one wants to believe they were referred to a specialist who has completely lost their mind. Could all this be true? I did a thorough literature review, and at first, I was like, "Gee, wow, dozens of studies on this disorder, maybe there's something to this."

But half of them are meta-analyses which reference the first half, and 2/3 of those have "stopping medication" as the endpoint, not improved quality of life or reducing pain. Dig a little deeper, and there are about a dozen other articles written by the sane doctors which state the obvious: There is no objective criteria for the diagnosis, it may not even exist, and even if it does, it's done nothing to help find a better treatment. 30% of patients relapse, which is defined as 'resuming medication.' Are they better off or worse? Not measured.

And people wonder why no one trusts health care providers these days.

* * * * *

Now, the good news-- maybe very good news: Magnesium and Vitamin B2, 400 mg. each recommended by primary care. It's only been two weeks, too early to be sure, but I'm more optimistic than I've been in at least 10 years. Headaches either start later in the day-- and who cares if a headache starts at 11:00, so long as it's not bad enough to keep me awake? Or they are bimodal and much shorter: Headache starts just before lunch, take the supplements after lunch, and the symptoms don't come back until after dinner. Hey, I can deal with that!

The other thing: My energy level might be increasing. Though slowly. Like the decrease in pain, it's not a huge difference-- 5 to 15% most days, but over 30% on others. Magnesium has something to do with nerve conduction, DNA synthesis? And the B2's benefits may accumulate over months. I don't want to get my hopes up, but it's encouraging.

I don't put a lot of stock in anecdotal reports, that's the LAST data point I look at. But if you look at "Medication Overuse Headache Treatment," there's... er, not a lot of positive patient feedback. I found one first-hand case report that said "I quit all my meds, and I feel great! I'm so ashamed, the answer was right in front of me all this time!" Exactly one.

But magnesium and B2? Hundreds of posts and testimonials on multiple platforms. "I didn't believe this would work, but the headaches are half as bad and half as frequent."

This should mean more riding! My goal: A 38 mile transit from one end of the Verdugo Mountains to the other with 4,500 feet of vertical. We'll see how the training goes-- I'll hit this thread again in a week or two, let you know it goes!
There are a lot of people treating pain that should be selling Earth shoes - they'd do less damage that way. I was a doctor back during the onset of the fibromyalgia scare - I kept hearing doctors talking in hushed tones about whether we should believe people when they reported that they hurt. There isn't a single other symptom on the planet that we doubt our patients about, so what's the problem? After all, pain is the #1 reason globally people see a doctor. It made me physically ill to listen to such rubbish - not coincidentally, most of the sufferers were women, who have always been given the short end of the stick in HC. I'm deeply sorry you got such a fool. I always believed my patients - and I was very, very rarely wrong to do so. I would suggest being a bit more circumspect about things like travel and all, but you're clearly having a blast, so...deep slow diaphragm breathing with relaxation visualization, daily or twice daily, journaling, sleep management, anti-inflammatory diet, and just do the best you can. Take care of yourself, my friend!
 
There are a lot of people treating pain that should be selling Earth shoes - they'd do less damage that way. I was a doctor back during the onset of the fibromyalgia scare - I kept hearing doctors talking in hushed tones about whether we should believe people when they reported that they hurt. There isn't a single other symptom on the planet that we doubt our patients about, so what's the problem? After all, pain is the #1 reason globally people see a doctor. It made me physically ill to listen to such rubbish - not coincidentally, most of the sufferers were women, who have always been given the short end of the stick in HC. I'm deeply sorry you got such a fool. I always believed my patients - and I was very, very rarely wrong to do so. I would suggest being a bit more circumspect about things like travel and all, but you're clearly having a blast, so...deep slow diaphragm breathing with relaxation visualization, daily or twice daily, journaling, sleep management, anti-inflammatory diet, and just do the best you can. Take care of yourself, my friend!
Whoa! Thanks for the blast of positive energy-- and great perspective r.e. believing patient reports. I find the same thing as a psychotherapist-- in fact, I had a client just today who found him or herself doing the opposite-- wondering if he/she'd invented a traumatic event that actually happened just to get attention. We reality-tested that: Probably not! (And good point about women not being believed, too-- and the way that looks shows up differently in different cultures.) Also great advice about the visualization. I've got to switch the journal to a keyboard-based one, b/c the joints in my hands are too stiff.

It's not that patients/clients never lie. Of course they sometimes might, and there's occasionally an element of credibility assessment, particularly w/ court mandated DV w/ an aggressor, for example. But it is very rare that someone lies to me, and when it does happen, it's usually the client who figures it out, in a collaborative way, with me.

I actually did email the band leader to offer my resignation, because one of the hot young guitarists who sat in with us did a set with the band a few weeks ago-- said, "Hey, this guy is fantastic, if you need me to leave so he would come on full time, I'll totally do that." And they might... but they haven't pulled the trigger on it yet, I notice! Maybe next year or the year after, I'll just do five or six songs with them, a couple of songs with another band, etc. instead of doing 10 songs one night, and the same 10 songs with completely different arrangements plus five others two nights later.

Had a quick four-miler on the kit bike tonight... not as easy in high humidity, but still felt good. What's tricky at dusk as we get older is also vision-- everyone is walking their dogs or jogging and I'm the only one with a light! One very close call with a jogger who was coming at me on the wrong side of the road around a blind right curve... a guy about my age, too. We both did the correct thing-- veered to the left, because he could jump the curb and I couldn't, and if there was a car behind him, I could dodge it faster than he could. No hard feelings.
 
I wanted to check in with you, hope you're doing well. On the pain getting worse - I had the best day in 1.5 decades last week. I'm working on recovering from foot surgery, but by using journaling as a tool, deep slow diaphragm breathing with a relaxation visualization daily (or more, at need), light stretching and qi gong, better diet (less inflammatory foods) and several other tools, I'm actually hurting less. I've also reduced my medication load, and my dosages. It's out there, my friend. I have a book coming out in 2023 on ways to do it, ditto YouTube videos, slowly, one at a time (you know what pain is like - you can't schedule squat). I hope that others can hurt a little less, improve a bit. Take care of yourself, my friend
Thank you very much! I don’t know if I mentioned it in my original post or not but your kind email to me brings another point of essential importance when one suffers 24 seven 365. That is don’t isolate get out there end of the world and even if it’s an expression of compassion from a friend online or what have you it’s all grist for the mill. Good luck with your book. Sounds interesting! By the way, I was an audiobook producer, and if you need any advice or help with that aspect of your publication, reach out to me, take care.
 
I lost the ability to lift my legs more than one inch when I was walking. I ended up with a laminectomy L3 through S1. I can walk again but I do not have as much strength in my legs as I used to before my leg strength left me. I was riding 100-150 miles a week before I had trouble walking. After surgery and I gained the ability to walk better I started bike riding again. However, without the strength in my legs I couldn't ride very far maybe only 5 miles to 8 miles.
I decided to buy an ebike but needed to find something that didn't weigh much as I could only lift 30 pounds for a period of time. I found a Orbea Gain M30 that fit the bill with power assist. I have only made one week where I have ridden over 100 miles, 111 miles to be exact, but I can ride between 15 and 24 miles now at a time with only needing the power assist at times when I am going up hills or when my legs just have any strength. My heart rate has gone from 120BPM to 85 going up one of the hills. I think my heart muscle has become stronger because of my bike riding.
I am so pleased to just be back on the bike. My bike is a drop bar road bike and I find I am in less pain when I am bent over and in the hoods or in the drops.
I told this to my neurosurgeon and he being an avid cyclist said it made sense because my back bones were more spread out and not in compression.
Wow! Thanks for this great post and I’m very sorry that you went through all of this with your legs. After the chemo something happened to my feet that I still don’t understand I can barely stand up some days and I have all sorts of pain in my feet doll Cakes, shooting pains, pins and needles, ice, cold, razor blades, sometimes more than one symptom at a time. Sometimes the Two Feet don’t even agree with the kind of pain you’re feeling in other words, my feet are awful fucked up! The ironic thing about all of this is that in my early 40s, I became very devoted to foot reflexology; either Japanese or Thai. I was able to write a lot and there’s a foot reflexology place on every corner I swear, and here’s another little medical mystery that’s hardly ever spoken of most elderly people die in a hospital from pneumonia. How did they get into the hospital? Well they fall down and they break a hip and why do they fall down because they don’t take care of their feet why don’t they take care of their feet, because with age comes stiffness, and the lack of flexibility that allows us to work on our own feet , and believe it or not a lot of these deaths that come from lack of foot care to falling down to broken hips to hospital visits to kill us with pneumonia could be avoided if there were enough geriatric physicians in the country to take care of the elderly, but just as the baby boomer age wave is cresting (we are now just about in the middle of the baby bloomer edge wave I was born in 1956 which was halfway between 1946 and 1964 so I’m 65. Anyway, we have more elderly than ever before and if you look at the statistics of how many young people are going into geriatric care, it’s dismal and abysmal and it really I think requires some kind of socialized medicine that completely but I think the government should somehow train people maybe not to be full doctors, but something like a nurse care practitioner just for the elderly get a doctors spend millions of dollars on their education and that’s why there’s so many plastic surgeons so few pediatricians and hardly any geriatric physicians in this country into kick in the ass ha ha ha
 
Back