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My year of unbearable foot pain

Discussion in 'General Discussion Subforum' started by expressions, Sep 16, 2018.

  1. expressions

    expressions New Member

    This is a doozy of a story. Feel free to skim it or read it in its entirety. Either way, I'd love any input, feedback, advice, encouragement, or warnings you might have. I feel so incredibly lost. Thanks, my friends.

    Background/context: I've had lots of trouble with very tight calves and have sustained multiple injuries to my sesamoid bones over the years. I’ve also struggled with depression, OCD, anxiety, an eating disorder, and chronic migraines over the years.

    My current symptoms: on-and-off burning pain in the arch of my right foot. Pain (deep aching) at the junction of very inner arch of my foot and the calcaneus. When I press on the nerve in the inner part of my ankle, I can occasionally reproduce some of the odd tingling down the arch of my foot. Pain is made worse with activity, but seems to occur 6 - 24 hours after the activity (and will last for 1 - 2 weeks). Burning pain keeps me awake at night, sometimes to the point of sobbing. I can no longer do most of the activities I love: walking, running, plyometrics, heavy weight lifting, group exercise classes, jumping, kickboxing, stairmaster climbing, rowing, assault biking, battle ropes, heavy weight pushing, jump-roping, kettlebell swinging, ball slamming, basketball, running with my kids, hiking, etc.).

    Pain in my left foot is in the ankle and plantar fascia, and feels more like pressure and some burning.

    The pain goes in cycles. It seems to calm down with inactivity, but will flare with activity –– and that flare can/will last for weeks. It’s a continuous cycle of hope, despair, hope.

    I’m also currently experiencing Intense lower back, hip, buttock, and sciatic pain (aching, stabbing, irritating). I am kept awake at night because of this, too.

    My current foot pain began suddenly one day last September, after I had gone for a 7 - 8 mile run. I did not experience significant pain on the run, though heel was very tender afterwards –– and increasingly so as the days wore on, to the point where I thought I had a stress fracture in my heel. I went to see a podiatrist, who sent me for an MRI. The MRI diagnosed a deep bone bruise in my heel. (Incidentally, a plantar fascia tear was found in the lateral plantar fascia tendon, but this was not where the symptoms were occurring, and the MRI stated that it might just be a congenital gap. The podiatrist ignored this finding on the MRI, though it nagged at me a lot.) He sent me for six weeks of physical therapy.

    I worked with a physical therapist after the initial bone bruise. I ceased all significant physical activity (including runs, walking kids to school, workouts, hiking, etc.) except for spinning daily at the gym (which was depressing to me, since I’d lost my social network of gym friends, who comprised my primary adult interactions since I’m a stay-at-home mom to young kids). After a few weeks, one day in October, I went on a long walk at the advice of my physical therapist. During this walk, I experienced a searing pain in the arch of my foot (seemingly out of nowhere). From that point forward, I had pain in my arch on and off, both during physical activity and rest, as well as pain in the center of my heel. My physical therapist dismissed these symptoms, and continued treating the bone bruise with icing, stretching exercises, ultrasound, and electrostimulation. It had me freaked out about plantar fasciitis, though.

    I continued using spinning (daily) as my only form of activity until the bone bruise healed (it took several months--through January). I had to limp around because putting pressure around the bone bruise area hurt. During this time, the pain in my arch and in my heel hurt even at rest. Also during this time, I began waking up and having trouble falling back asleep in the middle of the night with searing arch pain.

    (Sidenote: I’ve long released anxiety through physical activity, and part of my self definition (as well as my social life) has been as a fit, gym-going, outdoorsy person. Over the course of this pain episode, I’ve struggled greatly emotionally.)

    Around November, my podiatrist suggested that he thought I now had plantar fasciitis, and he tried Amniofix (a stem cell injection). This failed. He then sent me for PRP. In late November - January, I had a protocol of three PRP injections. I experienced no relief. The orthopedist who performed the injections thought I had plantar fasciitis based on my symptoms (he did not find MRIs reliable). When the last injection in mid-January failed to bring relief, he suggested that I just go run until the plantar fascia tendon ruptured on its own to bring me relief. He told me that surgery would be a disaster for plantar fasciitis. This is when I began to be very confused about my diagnosis, and very, very scared.

    During the time I was getting PRP injections, my podiatrist was telling me that rest would heal the plantar fasciitis and/or the bone bruise (he said that the two were “feeding” one another). He said that my case was difficult, and this scared me. I had abdominal surgery (related to diastasis recti developed during pregnancies) scheduled for December 27, and he was hoping that the rest afterward would allow my foot to heal.

    For the month or so following the surgery, I hobbled around when I did walk around the house, and didn't put weight on my foot. During that time, my calf became extremely tight to the point where I could hardly take a step without limping or contorting my foot to avoid putting pressure on the heel or part of the arch. It also swelled up to twice its normal size, and I became concerned about what was happening to me. (I never did figure out the cause of the swelling.)

    At this point, my depression and anxiety regarding the non-healing of my foot were causing a significant impairment to my daily living activities.

    In late January, I began deep tissue/physical therapy (Airrosti), which I’d done for calf pain several years before. This doctor didn’t think I had a nerve issue, but also was unsure whether it was plantar fasciitis, since the burning pain was towards the inside arch of my foot, and not really in the plantar fascia. He worked with me on soft tissue manipulation, physical therapy strengthening exercises of my foot and gluteal muscles, nerve flossing, taping of my heel, and extensive stretching exercises. I continued to stay off of my feet as much as possible, but did do some ellipticalling and spinning.

    It was around this time period--February--that I began really seeking out an answer frantically. I went back to my podiatrist, who recommended that I start with ESWT (shockwave therapy) to treat what he thought was plantar fasciitis. I then went for a third opinion with a foot and ankle orthopedic surgeon, who suggested that the problem may be Baxter's nerve entrapment. I started on Gabapentin, which brought minimal relief.

    Shortly afterwards in very early March, I began seeing yet another specialist: a chiropractor who performed dry needling, soft tissue manipulation, nerve flossing, Graston, and further adjustments of my pelvis, spine, and calcaneal bone. He said he'd never seen anyone with calves as tight as mine. I've heard this repeatedly over the last several years. This lead to an MRI of both calves, which showed significant edema, and which had me very concerned. That became another avenue to pursue. I did a couple of months of chiropractic work on my calves and foot, to no avail. I continued to hobble along. The chiropractors at this point began to wonder aloud if the orthopedic surgeon might be right about a nerve issue.

    I got an EMG study of my foot and leg in March. It was negative. I was told, though, that there is a 50% false negative rate for nerve issues. So at my request, the orthopedic surgeon performed a diagnostic nerve block (with cortisone and lidocaine). I experienced no relief.

    Also in March, I saw a physiatrist to inquire about nerve prolotherapy. He suggested that the pain in my foot was due to a problem in my hip joint. He suggested an MRI of my hip. He gave me a cortisone injection into my hip. He said that he might also do prolotherapy injections into my ankle ligament to tighten it, since its laxity was probably also contributing to my foot pain. He said that I should focus also on treating my hip and getting new orthotics from a podiatrist colleague of his, but that nerve prolotherapy wouldn’t help. I never followed through with the MRI of my hip.

    I saw a third chiropractor during this time (someone who came highly recommended by several friends). He was fairly stumped as well, but also noted my tight calves and the possibility of a nerve issue.

    I talked to a renowned nerve surgeon over email and on the phone in March and April. He ordered a MR neurography study of my foot and ankle, and it showed hyperintense signal of the medial plantar nerve along the arch, where I was feeling much of the burning, stabbing, and tingling. The MRI also showed plantar fasciitis, achilles tendonitis, nerve entrapment further up in my calf, lateral plantar nerve entrapment, and a few other issues (like venous stasis). The surgeon advised that I first see his colleague in Baltimore, a podiatrist. He said that they might have to do joint surgery on me: a plantar fascia release and a tarsal tunnel release, and perhaps other nerve releases.

    The podiatrist in Baltimore suggested a calf release and a possible plantar fascia release *if* the nerve surgeon saw me and decided to do a nerve release. He indicated that my calves were causing a lot of the problems in my feet. He also thought, however, that the potential plantar fasciitis could be resolved through amniofix injections and better orthotics.

    Also around the same time, in March, my primary chiropractor suggested that I see yet another foot and ankle orthopedic surgeon. This one recommended a calf release, a plantar fascia release, and a tarsal tunnel (nerve) release all at once. I did not like his bedside manner, so scurried away, but not without getting a cortisone shot to my heel first (it had no effect).

    In April and May, I saw a physiatrist for pain management until I could get to surgery. I was in lots of pain at this point, and desperate for relief. The doctor told me that he thought that there was something very wrong with me --- perhaps stemming in my spine/plexus -- and ordered a re-read of my March MRI by a radiographer friend of his. The radiographer agreed with the initial read; the physiatrist then cautioned strongly against nerve surgery until we could get things figured out. He said that I should get an MRI of my plexus –– an idea that terrified me (partly because he refused to elaborate on what he was looking for).

    I decided to get a scan of the veins in my legs, in case it might be discovered that varicose veins were the cause of my foot pain and/or calf swelling. I’d also read that varicose veins can tangle around the tarsal tunnel nerves, and I wanted to give that information to a surgeon in case I decided to proceed with tarsal tunnel surgery. The scan was relatively clear.

    I saw a rheumatologist in April. He ran lots of autoimmune bloodwork, all of which came back negative (except for a slightly elevated autoimmune marker and elevated liver enzymes, which I’ve had for awhile now). He also took an X-Ray of my heel and pointed out a bone spur. He did not think that an autoimmune disease was playing a role in the foot pain.

    My first chiropractor (Airosti) was totally stumped, so he got together with his colleague who specialized in foot issues. They both sat down with me and tried to figure out what was going on. They both figured that it was probably a combination of a nerve and tendon issue, but would “calm down” with time. (My second chiropractor also thought that I had a “pissed off” nerve.)

    During this time, I also continued to see the orthopedic surgeon who had originally suggested I might have Baxters and had given me the diagnostic nerve block. In April, armed with the MRN, he suggested a calf release as well as a tarsal tunnel release. He said that he would personally recommend the calf release first, but that he could do both in one procedure.

    After getting that recommendation, I sought a second opinion from a foot and ankle orthopedic surgeon at Georgetown University Hospital. He cautioned strongly against nerve surgery, and said that he would not perform a tarsal tunnel release on anyone because of a nerve surgery that he’d performed decades ago that had gone terribly wrong. He also didn’t want to do a plantar fascia release. He suggested a calf release, which he thought could alleviate pressure on the plantar fascia and also perhaps on any entrapped nerve. He said that most of the patients he’d done single calf releases on had later come back and requested a calf release on the other leg. He said that since both of my calves were tight that he’d do a release on both legs. I proceeded with the surgery on May 1. To this point, it has brought no relief.

    (Two weeks after the calf surgery, I also had surgery on my wrist for a tendon issue that had arisen quite suddenly during the month of April.)

    A couple of weeks following the calf surgeries, I started to experience pain and tingling in my left heel. In June, I experienced a period of a couple of weeks of acute pain in the exact same spot that I had the bone bruise in my right foot. I also developed a large bruise and some swelling on my left ankle. I went back to my original podiatrist, who told me that he thought I had an occluded vein in my left ankle. I went back to the vein clinic for a scan of my left leg. It was found that I had a partially blocked vein, but the vein doctor said that it was not the cause of my foot pain, and that it would clear on its own. I later went for a second opinion from a more well-regarded vascular surgeon, since this previous doctor had suggested that my I was making up the pain. The second doctor confirmed that the partially occluded vein was not the issue. The acute ankle pain subsided on its own, and the bruise went away. But the pain and mild swelling in my ankle would later reoccur.

    My depression, at this point, became a real issue. Getting through each day felt like a Herculean struggle.

    In June, upon the advice of my second (primary) chiropractor, I instituted dietary changes. I began hormone replacement therapy. I significantly increased my daily calorie intake and began eating meat. I started taking more supplements (I was already on numerous supplements at this point). The dietary changes continue to this day.

    That month, I also did a series of 12 (3x a week) cold laser therapy treatments on the nerves and plantar fascia in my feet. I experienced no relief. In order to get the laser therapy, I had to consult with a chiropractor. She also believed that the issues in my foot were coming from my back –– my spine, in particular. She ordered an MRI of my lumbar spine. I did not get it, because I was afraid of red herrings, much like I was afraid of red herrings with the plexus MRI.

    In June, I began physical therapy –– which my orthopedic surgeon had said I didn’t need. But I did about two and a half months of it (with two different PTs), to no avail. Lots of strengthening, stretching, and massaging, with little relief.

    In late June, I began experiencing sciatica following a long drive. Upon another visit to the pain clinic (this time to the physiatrist’s PA), it was suggested yet again that I get a lumbar spine MRI.

    In July, I got a new pair of orthotics made. The orthotics maker, who is also a physical therapist, said that I was walking very oddly, with a whipping motion of my right foot. She said that it was obvious that I was rolling on the outside of my foot to avoid contacting the painful inside arch. She said that it was a wonder that I didn’t have knee and hip pain. She even invited her colleague to watch me walk and affirm that I had a very odd gait.

    In July, I found a nerve surgeon who works with my insurance. He suggested waiting for any surgery for at least six weeks to see if the calf release might resolve my symptoms. If not, he would advise a tarsal tunnel release. He said that I should also consult with a podiatrist who might perform a simultaneous plantar fascia release with him.

    That new podiatrist recommended that I do a series of EPAT (mild electroshockwave) treatments to my feet (both feet –– my left foot continued to bother me on and off, now in the plantar fascia and ankle but also in the achilles tendon area). I experienced some mild relief from the EPAT, but not significant.

    During August, I started reading about TMS. I read two of Sarno’s books, in addition to tons of internet material and some other books on TMS. I decided to dive right into TMS protocol, and began slowly ramping up activity and telling myself that the pain was psychological and not physiological.

    In late August, after five EPAT sessions, the doctor injected a hefty dose of Amniofix into my right plantar fascia. After a week of resting my foot, the pain was virtually gone. But it flared again with a vengeance a few days after I began walking for the first time in almost a year (while we were on vacation at the beach). During this time, the sciatica came back to a crippling degree, after I ran (!!!!) a few blocks in a rainstorm. Between the severe burning pain in my foot and the extreme back pain, my depression, which is typically in check with the aid of weekly Prozac, quickly grew worse. My anxiety also worsened. (Note that at this time, I was also feeling an acute sense of loss as I prepared for my youngest child to start pre-school--I would be alone at home for long stretches for the first time in nine years.)

    We were on vacation for two weeks, but as soon as I returned home, I went to see a psychiatrist. He recommended that I try transcranial magnetic stimulation through his office; he didn’t want to change my medications. I went to my general practitioner, who adjusted my medications (he took me off of Prozac and put me on Cymbalta) until I can get in to see a psychiatrist who works with my insurance (in November). I also started psychotherapy the week after I returned. I continued to try to implement TMS protocols, but the pain in my back and in my foot were too debilitating to do what I had hoped I could do exercise-wise.

    I spoke on the phone to Andy B, a TMS life coach, at great length about his experience with TMS and foot pain. I also downloaded the Curable App and listened for hours and hours to podcasts, education episodes, and brain-training techniques. I also started journaling with a TMS workbook.

    I consulted again with the nerve surgeon who works with my insurance, who cast doubt upon whether or not the pain is truly due to the the entrapped nerve, or more to plantar fasciitis, or even to a third option such as foot trauma or pain due to my high arches. He thought that the delayed onset pain is more indicative of plantar fasciitis than of nerve entrapment. He did not think that the nerve surgery will fully resolve my pain. This was a shock, since the nerve surgery with him was going to be my next step (in July, he had indicated that he thought it would help with my pain).

    At this point, I was feeling tired of doctors, and exhausted by my depression. I handed the reins over to my husband. He found yet another foot and ankle orthopedic surgeon for “a fresh pair of eyes.” She thinks that I have a nerve issue that will be solved by a tarsal tunnel release. She does not think that I have plantar fasciitis. She thinks that my left ankle/foot pain may be the beginnings of tarsal tunnel entrapment in that foot, too.

    I have an appointment with Andrea Leonard-Segal to be evaluated for TMS next Monday. I'm also enrolling in an intensive Mindfulness-Based Stress Reduction course that will begin on Sunday. But I still worry that there's something structural going on, and I don't know how to stop looking for answers. I'll do anything to have my old, vibrant life back. I feel like a shell of a human being. I have four young children, and I can't be the mom to them that they deserve. Please help.
  2. Marinedad

    Marinedad Well known member

    Your story relates to me 1000% I also suffer from what you describe for longer ...I feel you have ran your course with Dr stop looking there I know it’s hard to not think physical when you are in so much pain believe me I can relate . Hit the books read read until it sinks learn about TMS and if you can get help from a med to keep you on track and minimize your pain so you can get in touch with YOU then I am all for it . Don’t listen to people that you cant take a med that BS .
    A session with a Tms Therpist will help but don’t get caught up with having multiple session a couple is good after that it just repetion at a big cost. You can’t throw $$ at TMS and make it go away . You need to be aware that your emotions are driving your pain and that’s all you need to know. It seems you been checked and rechecked by Dr so I say your path is threw it. Take baby steps and some times smaller one to. You can do this we all can it’s one min at a time . Regarding physical activity not everybody can push threw the pain for me it go everyday break a sweat and don’t challenge your pain for me that just gives it more attention that I am fighting something. I hope this helps

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