Today’s post, in which I talk pain and what the hell is wrong with me

When I started this website over six years ago, the first decision I made was that it was not about me, but rather, about bicycling. If I did write about myself, it was in the service of a larger point. 

Today, I’m breaking that rule. 

If there’s a larger message to come out of this, I don’t know what it is. 

I have struggled with whether to write this. But I have been open in discussing my diabetes up to this point; to not finish the story seems somehow dishonest.

And it affects my ability to maintain this site and bring you the bike news you’ve come to expect.

So if you’re interested, read on. If not, no hard feelings; feel free to skip it and come back another time.

Either way, we’ll be back to discussing bikes in the next post. And you can find today’s Morning Links here

……..

Let’s talk pain.

As a long-time cyclist, I thought I knew what it meant to suffer.

From the pain of struggling to make it up a tough climb or somehow make it back home when you ran out of gas miles before. To nursing bruised and broken bones and flesh, or debriding a massive case of road rash.

But nothing I’ve been through in 30-plus years of adult riding — or anything that came before — prepared me for what I’ve experienced this past summer, and the months since.

But at least now it has a name.

Diabetic Amyotrophy, to be exact.

Which means I beat the odds once again. First by developing diabetes without any of the usual risk factors other than a family history. Then developing a form of diabetic neuropathy that affects just 1% of adult diabetics.

I should play the lottery more often.

Unlike most medical conditions, it’s easy to point to when it began. According to my calendar, I took my last recreational bike ride in mid-June; my last ride for transportation at the end of July, as the pain started taking over my life and forcing me off my bike.

Surprisingly — both to me and my doctors — it came as I was gaining control over my diabetes.

When I was first diagnosed in April, I had an A1C — the key marker of diabetes, measuring blood sugar levels over a three-month period — of 14.5. A figure that was, quite literally, off the charts, as I discovered recently when I noticed the graph on my doctor’s wall only goes up to 12.5.

In fact, one of my doctors — I have a virtual peloton of physicians these days — said the biggest surprise was I hadn’t ended up in diabetic coma. Or worse.

No wonder I’d felt like crap.

Yet, despite being repeatedly told it would be impossible, I was able to bring my blood sugar back down to normal levels less than three months after my diagnoosis. My most recent A1C was just 5.8 — a level that would be on the high end of the normal range for a non-diabetic.

And through diet and medication alone, without having to go on insulin.

In fact, low blood sugar is a more of a problem these days, as I have to carefully monitor myself to keep from crashing.

As my diabetes improved, though, the pain increased. Until it became the single defining factor affecting my life.

My doctor advised me to just wait it out, guessing that it was my body’s reaction to lowering my blood sugar too far too fast. And that it would simply go away in time.

Instead, it continued to get worse. So I finally got a referral to a physician specializing in diabetes, and was lucky to find one who takes the Sherlock Holmes approach to diagnostics.

As in, when you have eliminated the impossible, whatever remains, however improbable, must be the truth.

So we began a months-long journey through a wide range of exotic blood and neurological tests in an attempt to discover what it wasn’t. Including some very scary things.

And once everything else had been considered and dismissed, we were left with this:

Diabetic amyotrophy, also known as proximal diabetic neuropathy, diabetic lumbosacral radiculoplexus neuropathy, and diabetic polyradiculoneuropathy, occurs in patients with diabetes (more likely in those with type II than type I). It usually involves weakness followed by wasting of muscles, and excruciating pain in the muscles of the thigh, hip, and buttocks.

Bingo. Although excruciating is putting it mildly.

What it doesn’t mention, though, is that the pain comes in three distinct flavors.

The first is a constant burning or freezing sensation in my feet, like they’re alternately on fire or encased in a block of ice.

Next comes uncontrollable muscle spasms in my calves and thighs lasting hours at a time, and resulting in a sensation like the lactic acid build-up that follows a hard ride. But many times worse.

Finally, I’m subject to intense, sudden shocks that come with no warning, strong enough to drop a grown man — namely me — to his knees. And striking anywhere from the waist down.

And I do mean anywhere.

Yes, even there.

You know those movies where they torture someone by shocking him with a car battery? My body doesn’t need any help to torture me. I can do that all by myself, without the need for external electricity.

The pain is constant, without relief, ranging from moderate to, by far, the worst pain I’ve ever felt, feared or imagined. Sometimes it’s just one of the three forms, at other times, all three at once.

And it’s worse at night. Much worse.

Which meant I spent most of my summer on the couch; awake all night from the pain, trying, usually unsuccessfully, not to wake my wife in the next room with my muffled cries of pain. Then curled up in a ball all day desperately trying to get the sleep I didn’t get the night before.

Relief, when it finally came, was in the form of a powerful anti-seizure medication used off-label for neuropathic pain. But it would only help for a day or two, at best, as my doctor slowly ratcheted up the dosage.

It wasn’t until a few weeks ago that it finally reached a level that offered any significant help. It doesn’t make the pain go away, but on a good day, helps bring it down to a more tolerable level.

Not that there are many of those.

Or more precisely, there are bad days, and less bad days.

On better days, I can function almost normally for a few hours, though even just going shopping with my wife is enough to wear me out. Going out on my own, unsupervised, requires cutting back on the amount of medication I take, and accepting the pain that comes with it.

And overdoing it means a relentless bout of pain that can last for days; it took over a week to get it back under control after spending just a few hours at the LACBC’s Firefly Ball recently.

There’s also a fine line between taking enough medication to control the pain and being unable to function. Too little and the pain knocks me on my ass; too much and I’m a virtual zombie until it finally wears off.

And even then, there’s no guarantee it will be enough to overcome the pain.

As a result, I’ve been unable to work, since I can’t commit to being anywhere, or being conscious enough to meet a deadline. Or guarantee that my head will be clear enough to be productive or that the pain won’t drive me back to bed.

Not that I have work to do. In fact, I haven’t worked a single day since the onset of my diabetes towards the end of last year.

Or an hour, for that matter.

It’s also kept me from making the changes I’ve wanted to this website; usually, it’s all I can do just to keep it going every day.

Or almost every day, as you may have noticed. Some days I’m just not up to the simple act of pounding out a new post.

And it’s kept me off my bike for nearly four months. While I’m determined to get back to riding, I don’t know when that will happen. Or if I can ever get back to riding the way I used to.

My life is now centered, not on the things I used to do, but the pills I have to take.

I’m finally starting to accept that.

Up to now, I’ve been fighting to overcome my pain and get back to normal. Now I’ve finally accepted that isn’t going to happen.

This is my new normal.

I have to accept that this is a chronic, and possibly permanent, condition. It may go away on its own someday, just as unexpectedly as it came on. Or it may be something I have to deal with all day, every day, for the rest of my life.

Fortunately, I’ve learned the hard way that I’m stronger than I thought I was. And I can endure more than I thought was humanly possible.

My challenge now is to find a way to live my life, regardless of what’s going on with my body. What that means, I have no idea.

But I’m looking forward to finding out.

And other people have overcome far worse.

 

55 comments

  1. jack carlson says:

    Bro-damn- I’m on a pain management program like you-gabapentin-1 I can work 2 I wobble 3 drool. I lost my job because the boss said I don’t know what you’re on, but too many knives to be ‘less than 100%’ but I can still ride! I worry about diabetes; I’m really interested in your illness. the swimming pool is my access to exercise. I got an Aquabelt from Oregon it allows me to exercise in the deep end w/o sinking. It relieved the pain from gravity. check it out It’s is important that you share w us your fight. Pot brownies would give you a body pain relief. I would make sheet trays of them so could make a consistent recipe. The hemp oil is an amazing drug! Best of luck-I’m sure you’re in everybody’s thoughts

    • bikinginla says:

      Yeah, my experience is about the same. The more pills I take, the less I can function. Unfortunately, medical pot is out for me. I may have experimented with various substances, and found that my body has no tolerance for it. One brownie and I’d be sick as a dog for days.

  2. jack carlson says:

    mayI introduce you to Terry Wahls MD when I first met her she was in a wheelchair. She has has cured herself of MS!! Eat more Kale!!

  3. Nancy Zeff says:

    Thank you for sharing. You have been so brave and always so compassionate to the survivors of cycling injuries and fatalities. Please know you are in our thoughts and that we are sending tons of warm hugs with lots of love.

  4. Matt Kelley says:

    So sorry to hear about your pain. I pray you and your Physician find a treatment to help you conquer this….God Bless….

  5. teacherlady says:

    So sorry. Thank you for sharing this news, horrible as it is. Biking in LA has been a wonderful resource, for which I have been very grateful. If you have to take care of yourself instead of taking care of the rest of us, I’ll be sad, but do take care of yourself. I’ll be keeping you in my thoughts.

    • bikinginla says:

      Thank you for the kind words. I may have to miss a few posts here and there, but I plan on keeping this site going. The community we’ve built here means too much to me to quit now.

  6. John Lloyd says:

    Ted, That you have kept up the blog as regularly as you have during this time is a testament to the fact that you’re one tough hombre. Please know that I’m pulling for you, big time, as I know are many in the bicycling community here in SoCal and around the country.

  7. karl says:

    Agony and it’s abatement would appear to be typically neglected by nonindividualistic care focused on employer concerns not just cost Mitigation. If the pain is the main problem because it’s system is broken then maybe actualrelief is still to come, rrlief that allows you to enjoy more then it’s absence as you can also get your cardio etc. Again. Luck will have little to do with such care being found. Finding it wli llmake it available to others not as well known.

    Treasure your strength and put it to use to find a doctor willing and able to do more of the work. Know how much what you are being denied costs. Clearly throwing money at this problem is something others can have a great say in if allowed. Sharing even more of this hellish predicament will best restore your ability to share much more of the good news as well again.

    You have become a true journalist- no mere blogger. Run to where this assignment takes you. It cant be worse then where you have been? For a time now consider blogging about the pain. And search for cure Fulltime. In comparison the shame is nothing tk fear you all but say above. Wake us up.

    • bikinginla says:

      Thank Karl. I appreciate the thoughts, but I want to keep the focus of this site bicycling, not my health. I may report back as things change, but my passion, and that of my readers, is riding bikes.

      • Karl says:

        I read the first of two recent WSJ articles on the bus a few days ago concerning the medical malpractice women, even or especially affluent ones, have been suffering. Since then the regulator has ‘black boxed’ it’s former warning to not grind up potential cancer’s and quickly kill the patient by doing so as has been going on now for years, even after the first belated warning.

        I want to encourage you to read about this but also deliberately leave off the keywords for several reasons.

        One woman still loved her doctor- as she assumed accidents happen. Then after going public even more so she found out that at the time of her lethal procedure that same doctor had already lost another patient- lost- killed.

        A true second opinion from possibly out of state is one thing you may not have been able to pursue yet. I took the time on my 3.5 inch touch screen to type earlier this week, and just now note your prompt and VERY kind acknowledgement of all of our contributions nearly, but am not persuaded that your immune from any act in error, in pride, insecurity that we do not trust you enough to have you not suffer so silently etc.

        Some runner’s you know cut there feet off to keep running- literally. Insurance does not pay for that.

        Wishing for a cure to the ailments no longer exercising ‘flying’ wise impart, despite hoping it will get you back aloft sooner, is not the only stratagem. You want to bike. I believe for a certain reasonable amount you can get relief from at least the pain that stops you.

        A clinician who understands the full importance to you of being able to ride more, much more, like you used to, is going to be very hard to come by.

        there are people as you know as well who are born without the ability to know when they are breaking there bones etc.

        Other ways of not doing stuff pain would protect us from exist besides pain.

        I think it is obvious you would rather never have pain, even lose some/MORE ability to feel period, if the ‘distractions’ you report about could be culled or prevented from denying you sleep at least even if far worse at times of your choosing?

        An employer wants 8 hours about a day. You want to ride far less then that.

        I mean, forgive me, you NEED to ride more then you are able to now.

        most people do not know what it is like to be as fit as us

        including most doc’s etc.

        many commentor’s refer to ‘chronic’ but my point is if so then management, not cure, deserves PRIMARY attention.

        Customized to your very personal priorities with an emphasis on them be assisted in despite the impact on other’s. ‘Experimental’ etc. perhaps.

        Malpractice in pain treatment has been the rule.

        One hospice ad has a doctor credibly saying- her practice PROLONGS life. The pain kills faster in so many ways then almost anyone can understand.

        I do not believe someone in your shoes can be selfish. I find that you concern yourself with not being that despite likely agreeing intellectually with me.

        I am this cruel: do you really want to ride like you hope to again? How badly? If I didn’t cry writing last time I certainly could have drier eyes this time.

        Expect almost nobody to be sympathetic about your need to ride a bike like a little boy. Expect us to be jealous if you manage it. But decide. Take a long view. I would rather have you out there riding more in the short term then being able to do this priceless blog as much as now.

        Focus is everything. American medicine will not help you if your not willing to risk everything especially your pride seeking help seeking help. Not merely seeking help from it.

        I believe that a pain treatment that costs far more then any salary could be picked up by some of your readers in concert, especially if it both got you back the saddle on writing less tragically. But your past service remains no matter what. We owe you this debt being paid in the most meaningful way. Nom de plum’es work- you respect them yourself- one of your most special excellencies that.

        Ask WHAT WOULD A BILLIONAIRE DO?

        (beg, borrow, steal)

        More of the first two please. I don’t believe you have to suffer alone at night in order to gain greater mobility in the day. I/We can’t help you squeak loudly enough without your passion for rest and recreation being respected more however out of character/habit/tradition doth it repulse.

        Most who suffer excess sedation etc. don’t miss as much. I did not visit your link about those who suffer more. I will someday. But I think your wrong in claiming your suffering the loss of access to the beach etc. on your own is not most exquisite.

        Or I’m just mistaken. Till I know that though I say it is your turn to be advocated for by strangers amongst us as the asshole who couldn’t stop with one even non-perfunctory chime. Your suffering makes me angry- at you to the slightest degree as well. Mainly at the slow progress against malpractice cursing another friend of mine, but also at that friend. I lack the words, only clich’es. Pretend you have lady parts to get in gear… we are all vulnerable. real strength comes to those who do not overquell the organic ouch, and who even when with reason dare upon it dwell. Snivel freely and some will hold less, not more, ire. May your family show there compassion in action as well; Recognising that youru K9 can not do the googling for you… that takes humans.

        Acceptance must not be premature! That is for cartoons. Only facts, real ones, can support such a surrender, and those ladies who have been killed got no notice of the risks, of alternatives, etc. I fear neither have you enough -reason to abstain from further ‘complaint’- to post this, abandoning caution in the spirit of it.

        Without malice. Believe it or not. I swear to you I do. As I hope you have the tools to properly process the criticism despite what you have been and are still going through.

        Real men risk death before losing liberty to roll needlessly even if the chance is uber small of that I say.

        And I’m not saying risk death. Unless if it’s from humiliation. Then I say risk it or never ride again because I also have failed you.

  8. You have been in my thoughts, my friend. I knew you were in pain but had no idea of the level and persistence. Is the pain from the neuropathy considered treatable or reversible?

    • bikinginla says:

      Thanks Richard. Unfortunately, the only treatment is increasing the dosage of my meds as I build up a greater tolerance. This condition can sometimes go away on its own, which is what we’ll have to hope for.

      My doctor does think they may be able to alleviate some of the weakness by treating a pinched nerve in my lower back, but there’s not much they can do about the neuropathy.

  9. Sorry to hear that you are now a member of the chronic pain club, another club I never wanted to join. The worst thing about chronic pain (from my experience) is trying not to bite the heads off people when you’re having a bad day. My pain tolerance is on the high side, until I reach my limit, then I turn into a real pansy, and a bitchy one at that. So I feel for you and I feel for your family.

  10. Calla Wiemer says:

    You’re awesome. Thank you for pushing through it in service to the LA biking community.

  11. […] an explanation of why the Daily Ted hasn’t been daily as of late. Today’s post, in which I talk pain and what the hell is wrong with me I’m really sorry to find out Ted has joined the Chronic Pain Club, that is a club that should […]

  12. Bro Dave says:

    You are in my prayers.

  13. Dear Ted,

    You’re a very brave soul to carry such burdens while continuing to advocate (despite the reduced frequency of posts) for better bicycling conditions. I admire and respect you even more for sharing the details. And while you’ve focused your column on bicycling, not the author, the real story is that the column reflects the dedicated integrity of its writer. We are closer to transportation equity because of you.

    Please let us know if we can carry some of the load for you to keep the column active and current, if you so desire.

    Sincerely,
    Brenda

  14. Jason says:

    Wow, Ted… I don’t know what to say. I’m sure my words are cold comfort, but your blog has been at the top of my go-to list for the better part of a year. You obviously have no obligation to share with us what you’re going through, but I’m glad you did… my thoughts are with you, hombre.

  15. Joyce says:

    Wow, I am sorry to hear about your diagnosis and everything you have had to give up since. You will be in my thoughts. I hope that you get the miracle you hope for and the pain goes away.

  16. JD says:

    My story is so similar to yours, an over ten year battle with my health. The electric motor kept me in the saddle for the last several years. Then I pulled my left hamstring and can’t spin the crank. Dr. finally clears me to ride and I hurt my knee. The branding, searing, scorching voodoo pain. The tingling numbness which never goes away. The recurring bizarre injuries for no apparent reason. Wondering why no one else notices the vibration sensations in various parts of my body. We’re now 1%ers and the 99%ers have no idea. Our prayers are with you my friend and fellow sufferer.

    “Because He lives, I can face tomorrow
    Because He lives, all fear is gone
    Because I know Who holds the future
    And life is worth the living,
    Just because He lives!”

  17. Peter R says:

    Sorry to hear about your neuropathy. I have similar stuff going on, although not, I think, as severe, from cervical myelopathy. I, unfortunately, cannot tolerate the anti-seizure drugs like Lyrica, they really zombie me out.

    I saw above that you cannot tolerate medical marijuana. But have you tried some high-CBD/low-THC strains? Names like “Harlequin”,”Juanita La Lagrimosa” C4, “Charlotte’s Web”.They don’t get you high but help quite a bit with the spasms and shocks.

    Best of luck. For me, the worst part is not being able to ride.

  18. AcrossLA says:

    Thank you so much Ted.

    I have to say you’re part of the reason why I returned to writing. The ability to touch so many with your passions is a rare gift that we all strive for. Your perseverance is inspiration that we can go greater things.

    – Zachary

  19. Ted: I have long proclaimed your ability to remain “intrepid, devoted, impressively emotionally resilient” as you chronicle all the many ills that pervade our local cycling scene (while I also celebrate your ability to highlight and bring to light the more positive aspects of our 2-wheeled world). My awe for your devotion to our community has now risen to a level for which I have no true adjectives. I will have to make one up: You, sir, are fanfriggintastikallyindominable. THANK YOU for persevering for us. Thank you for sharing your truth with us. Thank you for being YOU. We [BIG HEART] you!

  20. D. D. Syrdal says:

    I’m so sorry to read this. You really are incredibly strong to be able to keep writing through all this, and you continue to be one of the finest resources for the cycling community, anywhere. I hope this will go away as suddenly as it came, and soon.

    • MovingCarefully101 says:

      Make a foot bath with a handful of MgSO4 salts
      http://costcocouple.com/dr-teals-epsom-salt/

      if you get results, splash on arms, face and legs

      B vitamin deficiency attacked with plain yogurt and brewers yeast

      Tetanus shot every 5 years. Riders tend to have puncture wounds from DIY service and falls.

      • bikinginla says:

        Thanks for the suggestions. My latest blood panel showed I actually had an excess of of it, rather than a deficiency, I am current on my tetanus shot; got my last one just a couple years ago. But that foot bath is a good suggestion.

  21. Ralph says:

    Bummer. Thanks for what you are doing here and I hope it makes the pain easier to tolerate.

  22. Easy says:

    Sorry to hear about this. Thanks for writing your blog.

  23. pat benson says:

    Best wishes for better health and less pain

  24. paul livingston says:

    I know a little about pain but wow, i had no idea you were going through all that… Sending good vibes your way man, hang in there! And thank you for getting me in touch with Laura from the L.a. Times… Hope you have a peaceful holiday this week~

    • bikinginla says:

      You know far more about pain than anyone ever should, Paul. I’m glad you’re doing better; hopefully I’ll get there soon.

      And you’re welcome, glad I could hook you two up. You’ve got a story everyone should hear.

      Hope you have a good Thanksgiving too; if nothing else, we can both be thankful we’re still here.

  25. Thanks for sharing with us.

  26. Peter says:

    I hope you have had some improvement in your pain and disability since writing this.

  27. Brooke McCoy says:

    Thank you so much for sharing your story! My husband is 38 years old and was recently diagnosed with DIABETIC AMYOTROPHY. Your story mirrors his so closely. He actually cried when he read this blog post. As you know, this is such a rare condition. We have been fighting it for months—-and he just received his official diagnosis in July. I didn’t know if I might could email you–just to ask a few questions about your condition now and the treatment you received/are receiving. I don’t mean to push into your private business, but truly i have not found anyone else to connect with on this. I have joined “neuropathy” support groups online, but none of them have even heard of this. Our doctor isn’t treating anyone else for this, and his GENERAL PRACTITIONER had not even heard of it. It is very disheartening. I would be so very grateful if you would allow for me to email you on my husband’s behalf. I am now following this blog and am providing my contact information. Thank you for your time, and I hope you are feeling much better now.

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