Hey Tom thank you for your extremely detailed reply. What an amazing story and for you to have waited ten years for improvement is amazing and hats off to you. Did they ever say it was tarsal tunnel or another entrapment in your feet? I’ve had this thrown around but I don’t have any evidence e.g no tinels, no EMG, no sign on an MRI. The physio said she could see a thickened nerve on ultrasound and then the next week the podiatrist also trained in ultrasound couldn’t see one. Did you ever try an injection? The pain latency is such an issue for me. Did you bother keeping a pain diary? Nerves are fascinating.
I have no deficiencies or diabetes. I over pronate slightly but do this in a controlled way, I have seen a endo who wanted to put me on thyroxin. In the MRI they saw fluid in my ankles which can happen with active people - I am a big hiker and runner - did your pain go away overnight or was it gradually fading? Do you remember doing anything differently in the lead up to the walk where you felt okay do the first time? Ten years - shows nerves can heel themselves even after all that time!
Yes, we went through all those possibilities and diagnostic tests. I probably saw a doctor every 6 weeks during that ten year period? Plantar faciitis, tarsal tunnel, entrapment syndrome , periferal and /or central nervous system autoimmune disorders, etc. I can’t even remember all the different things we tried.
Gabapentin, oral steroids, injections, etc… I don’t remember the more esoteric things we tried with the autoimmune and endocrinological theories. All kinds of biomechanical treatments like the ultrasound above, stretches, night boots, etc. Most things made it worse some things jyst didn’t do anything. Gabepentin helped which means it was some type of nervous system issue. But… again no diagnosis… just theories.
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I learned to manage it. I figured out what irritated it, and stopped doing those things. Again, that took a while because of the big time delay. Before, I figured it all out, I would do things and if I felt fine over the next day or two I’d think that was OK. Then when it would go south three days later, I’d be confused as to what I did.
Yes I eventually kept an activity and pain diary. That’s how I was able to ultimately figure out that I wasn’t looking far enough in the past for the cause and effect.
The return was definitely gradual. It wasn’t like one day it was spontaneously better. I just kept eliminating things that I found to be an irritant. Then as time eent on, the activities that I DID do were less and less limited. For example, standing for 5 minutes was painful… standing for 10nwas excruciating. I learned to sit down when having an office door discussion instead of just standing there. Eventually, I found that 5 minutes wasn’t as painful… maybe it was 6 or 7. That gradually became 10. Maybe I wouldn’t even notice the pain. Etc… at some point it getsnto the point where you notice… hey, it doesn’t bother me like it used to….i wonder if I could try a walk? And so-on.
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Can I ask - how does you make sure you don’t lose faith in the medical system? I also then thought it was something in my head. However it only started in the other foot when adjusting to new met pads which the doctor gave me thinking I had Morton’s neuroma. I felt this twang once when standing and then slowly but surely I developed the same symptoms. The right started when I got new running shoes and went for full blown 15k in them without easing in. You can get entrapment from Switching shoes apparently. My only other question is whether I have done some damage to my nerves but not caused an entrapment - how do I even work that out …
My dad is a doctor. Not to “brag” but he was one of the best doctors in Texas—voted by his peers many years in a row. I know for a fact that I was always seeing the very best doctors in their respective fields. So, I have an inside baseball perspective on “the system”. That can cut both ways…. I know what a good doctor is, and what a bad doctor is. There are an astonishing number of truly mediocre and even bad doctors. Doctors who don’t care, who don’t try or think, who make bad judgements.
Also, I’m an engineer. I know what good diagnostic thought processes sound like. I know when someone is truly thinking about the problem and applying their expertise to try and work out what’s wrong, and when they are just bullshitting me. I’ve had lots of that at one point or another with various family members over the last 57 years.
But, you have to separate your problem from the quality of the THINKING done by the doctor. Some problems are just plain hard. That’s not anyone’s fault, and it doesn’t mean “the system” is failing you. Bodies aren’t machines, and we can’t take them apart and find the broken piece in lots and lots of cases.
But, I don’t quit on a hard engineering problem in my own professional life, either. Just because I haven’t figured it out, yet… doesn’t mean that I’m never going to. That just me.
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I dunno… I only know what worked for me, as outlined above. Which is obviously where I would start. Figure what you can do and what you can’t. If you have pain the nerve is still “alive”. There’s truth in the saying “pain is how I know I’m alive”.
Eliminate the things that irritate it. Nerves take a very long time to heal. They are very sensitive to reinjury, even after they are seemingly healed. Get back to a point where you aren’t in debilitating pain every day. Get to a point where you can get through a week without debilitating pain. A month. Etc. Once you can do that you are giving your nerves time to really heal. That doesn’t mean they will…but, what other option do you have? In the absence of more informed advice (by a diagnosis), let it rest… hope it heals and that you can build on that success.
Again, that is just what worked for me, and I have no statistics or medical validation to back it up. I spent countless hours talking this all over with my doctors and my dad. So I can say the approach was concurred with… since they had nothing better to offer. And, ultimately it did work…. For me.
No. It started like plantar fasciitis in my left foot. That was the original diagnosis, and all the treatments were the standard treatments for that. I was training for IM, at that time and had been a 20 hr per week athlete for many years by then. It was a normal mid week run, during a normal training week. Nothing special.
I’d had PF many times as many high volume triathletes do. Then like you, it developed in my right foot. That’s not unusual for PF to move between feet as you compensate for the pain in the affected foot. Then it got worse from there…thus began the next 10 year journey.
The time you take to respond and the care you show is a testament to what your father and his example instilled in you. Thank you for all your contributions.
I can attest to the good vs bad doctors during the last three years. You can learn pretty quickly which doctors are just going through the motions and giving basic diagnoses vs those that are putting in the time trying to find the answers. I had one spine doctor lecture me and my wife and dominate the conversation for 15 minutes ending with “it’s in my head”. When I finally got a chance to ask my own questions and showed him my atrophied right arm and shoulder he could not hide the fact that he only glanced at my medical file. He apologized and said he would get back to me. He did. Three weeks later and with a 180 degree change in his diagnosis. There was no way that guy was going to operate on me, even if he was the best surgeon at that particular hospital.
My advice, is if you have someone who can go with you to your appointments have them come and take notes. It can be overwhelming. My wife was and continues to be amazing through this process. She was on top of everything and I would have been lost without her. If you don’t have someone, take your own notes and compare them to what the doctor actually writes in the notes. Ask a ton of questions and ask for clarifications. Don’t let them rush you out of the examination room. Sometimes they aren’t exactly the same thing or are not detailed enough.
Good luck.
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This cannot be overstated. If you are not practiced at having deep, difficult, technical discussions and processing that data in real-time (most people aren’t)…. You will not think of questions until after you’ve left the office. Taking someone with you can be a huge help. I always go with my wife for that very reason—it’s literally my job to argue with people who think they are experts all day, every day.
If a doctor shuttles you out, that’s a bad sign.
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amitriptalene made me unable to sleep. I have a lot of meds for which I react the opposite way most people do - I didn’t find that one sedating. The opposite.
I lack the expertise to say whether being on it means one is doing more damage.
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I tend to go into appointments with a WRITTEN list of questions so I don’t forget to ask anything
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How are you this week Dr TC?
Thanks so much everyone for all your kindness and support. It has been really reassuring to speak to you and to know that eventually in one way or another this will resolve itself and it’s about advocating for yourself and patience. My next step is to try and injection and to see if that fixes it.
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getting little bits better, though had to go to the ER tues night for a migraine that was a side effect of a treatment I had in early Jan. Fortunately IV meds and fluids made it go away. I’d spent hours vomiting and unable to keep fluids down.
How are you?
Oh no. That is awful I am glad they were able to help you at the ER.
after not keeping any food down, when I finally felt ready to eat in the er around 9 pm they gave me saltines and it is the tastiest thing I think I’ve ever eaten
those suckers were delicious
cant wait to see the ER bill, they were probably $10 for a two-pack
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I’m Ok.
Came down with a cold, probably from too much stress and not enough sleep—it’s been very busy at work.
Life goes on.
@Tom_hampton how’s your cold?
@GFD how are you?
I had a pain flare Mon but it was a lower pain level than previous flares.
I had a massage yesterday and she fixed my lower back issue and found a right hip problem that she also addressed. I slept for 6 hours straight last night. Life is good today.