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Bilateral Leg/Ankle/Foot Pain. Any Ideas?

Discussion in 'Ask your questions here' started by Ankle_Pain, Dec 26, 2017.

  1. Ankle_Pain

    Ankle_Pain New Member

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    Hello All,

    Over 8 months ago, I was going on a daily walk and developed back/hip and ankle pain bilaterally by the time I got home. This has never happened before so I sort of brushed it off and went to bed. It all resolved by morning so I didn't give it another thought.

    Within a week, my left ankle started feeling stiff with some mild swelling in front of the ankle, as well as on either side of the heel. I was diagnosed at the time with a sprain (I don't remember spraining it) and was given a Cam walker to wear. The pain increased within a week, so I saw an Ortho. who had taken x-rays, prescribed PT and was told that everything looked fine.

    In the up-coming weeks, it began to hurt even worse and was also hurting in the right ankle but not quite as bad. I returned to the Ortho. who didn't know what to tell me and suggested that I see a Rheumatologist for a RA/arthritis panel. I was tested for RA/arthritis and autoimmune disorders and all came back fine.

    I then went to see a Podiatrist (1 of many) that said that I pronated on the worst of the two feet and mildly on the other. He said that I had the beginnings of pttd in the left foot, perhaps stage 1, if that. I was given custom rigid orthotics which only made the pain worse in both feet.

    I proceeded to see the podiatrist for several months in which he adjusted the orthotics according to where I was having pain. It seemed as though the pain was increasing in both feet/ankles rather progressively. I was sent for an MRI of the left foot/ankle which only showed a mild tendinopathy. We continued with the orthotics for a few more weeks.

    About a month and a half later, I was sent for an ultrasound on both feet to take a closer look at the tendons, ligaments, etc. This came out fine, as well.

    I then went to a certified Foot and Ankle Ortho. who examined me, took x-rays and looked at my previous tests and didn't feel that I had anything structurally wrong and released me.

    My primary suggested a Vascular work up since walking was becoming difficult which came out fine. I was then sent to a Neurologist who did an EMG in his office which showed a L5/S1 Radiculopathy. I was actually excited to be onto something as my ability to walk up and down stairs was no longer possible due to pain. My pain increased to the point of having to use a wheel chair to go to my appt.'s.

    It was then suggested that perhaps I had a lumbar issue and was sent to see an Ortho. Spinal Surgeon who did a spinal MRI, thinking possible stenosis. The MRI came out fine and I was referred out to Neurology once again.

    I had a very thorough Neurological exam with MRI's of the brain/c-spine and a plethora of blood work which all came back within normal limits. I was then referred to a Neuromuscular Neurologist who examined me and did another EMG and this one showed L5 issues. (I have full strength in all limbs)

    I again went back to the Ortho. spinal surgeon who showed me my MRI and told me that EMG's were only a piece of the puzzle and the issue wasn't coming from my lumbar spine.

    I then went back to the Podiatrist who gave me a "Common Peroneal" nerve block next to both knees as I was so desperate for pain relief. It worked! I was "alive" again. I came home and was so thrilled as was my Podiatrist that this diagnostic block was a significant finding. It wore off after a few hours and I was back to being miserable with pain.

    During the up-coming weeks, he's done another block, this time around the knee and also on either side of the ankle on both sides. The pain was once again gone, this time for 12 hours and of course, then came back.

    The pain is always worse in the left with the right not far behind. Most of my pain follows the L5/S1 dermatomes. I'll have pain in both ankles in the front and after about 5 minutes on my feet, this incredibly painful cramping sensation will engulf my entire ankles and go straight up into my calves. I'll also have pain on the inner and outer ankles of each foot, which is worse on some days. I do have painful nerve sensations from the knees down. My peroneal muscles will cramp so terribly it brings tears to my eyes and extends up to my knees. (Massage helps momentarily) On the Posterior side of the calf, the cramping will mostly be a few inches above the ankles. I get the same cramping in the back of my calf going up into the gastrocnemius muscle.

    I can no longer walk longer than 5 minutes a day, otherwise the pain shoots up to a 9 from it's constant 5. Sleeping is quite uncomfortable as my pain levels are a constant 5 unless I walk for a few extra minutes that day, then can't sleep.

    Needless to say, I've become quite depressed laying in bed in the fetal position or sitting for 99% of the day for over 8 months now. I don't know where to turn or what to do to relieve this pain. Judging by the EMG's, most of the pain is neurological in nature. I can no longer bathe myself or even wash my hair. Every day is miserable. What scares me the most is how progressive this pain is.

    I've seen so many specialists that exam me and offer tests and then refer me elsewhere. At the moment, I had to hire someone to come in to help me walk to the bathroom, make lunch and do some light chores for me. I can't afford to do this for much longer.

    If you've made it this far, I appreciate it.

    Does anyone have any thoughts or advice to offer? I'd really be grateful.

    Thanks in Advance.
  2. Craig Payne

    Craig Payne Super Moderator

    Really hard to say without seeing you and the test results.

    Best guess is that posterior tibial tendon dysfunction needs to be consider and perhaps appropriate bracing for that prescribed (eg Richie brace)
    Ankle_Pain likes this.
  3. Ankle_Pain

    Ankle_Pain New Member

    Hello Craig,

    Thank you for taking the time to offer your advice, it's appreciated. I do apologize for not responding sooner however; I had a plethora of medical appointments this past week.

    I've been researching my pain problems for over 8 months now and have come across your name in much of my research! You're quite knowledgeable and I really wish you lived much closer to consult with me!

    Would it be possible for PTTD to affect me when I'm in bed all day long and not on my feet? I'm only on my feet to use the restroom and to bathe, likely less than 10 minutes per day.

    I did see another certified Foot and Ankle surgeon this week (3rd opinion) and he examined me, listened to my complaints and reviewed all the testing that I've had over the past 8+ months. He doesn't feel this is coming from my feet, ankles or legs. He feels that with 2 abnormal EMG's showing a lumbar radiculopathy that it's coming from my back. The problem is, I've had my entire back MRI'd already and the Ortho Spinal Surgeon said that all looks fine in my back and sees nothing that would cause my bilateral problem. He suggested going to pain management and said that they'd be able to isolate which nerve(s) are causing me such grief and they'd do some diagnostic testing. I have since made an appt. with pain management who will hopefully be able to tell me where this is coming from or causing it.

    On a side note, my Podiatrist (also does various types of surgeries) and has been giving me diagnostic nerve blocks of various areas and is trying desperately to isolate the nerve(s) responsible for the pain. Last week, he gave me a lidocaine block at the common peroneal by the knee on one leg and then a sural and posterior tibial block on the other side of the ankle of the opposite leg. I did get some relief with the peroneal block although it was short-lasting. The sural and posterior tibial blocks lasted much longer and removed all the pain. He then has me use 3 diagrams of the leg/ankle/foot to shade in the areas that are painful before, during and after the blocks. He tried another set of lidocaine blocks yesterday of the sural nerve on both ankles but they didn't offer as much pain relief as I had hoped.

    Honestly speaking, I'm very thankful for this Podiatrist. He's the only physician that hasn't brushed me off and seems determined to help me. I did ask him yesterday if he thought it was the back or below the knee causing such grief. He wasn't sure but agreed that pain management would be able to help identify if it were the back and that he'd do all that he could diagnostically regarding the knee down.

    I've seen approximately 25+ specialists for this problem as it's quite life-altering having to spend my days in bad and the pain is taxing. I'm in shock that I live in the middle of a world renowned and highly respected hospital system and no one seems to care for a challenging case, thus continuously pawning me off from one specialty to the next. My Podiatrist has offered to brainstorm with some of the other specialists from various specialties regarding my case, but no one seems to be up for the challenge.

    I'm a young 51 year old woman that weighs about 120lbs. I can't imagine spending the rest of my life lying in a bed.

    If you have any further thoughts/ideas, I'd appreciate hearing them.

    I truly am thankful that you took the time to write to me. I think it's great that you offer your time to help others.

    I hope that you have a Happy New Year.

  4. anon

    anon Guest

    This sounds very similar to what happened to me, I injured my left knee, which was a ligament sprain, given PT, but pain spread to right knee then both feet and calves. Was eventually diagnosed with CRPS after 10 months. They were able to tell from a bone scan, but when you have a relatively minor injury that spreads this is something to look at. Unfortunately it keeps progressing and it is easier to treat the sooner it is diagnosed. I still can't do stairs, and swelling gets worse, no one can tell me what to do about the swelling but Neurontin cuts the pain so I can walk some.
    Ankle_Pain likes this.
  5. Ankle_Pain

    Ankle_Pain New Member

    I'm so sorry to hear that you have CRPS.
    I did see someone who specializes in CRPS about a month ago and was told that I didn't follow the criteria after an examination. I really feel for you as it sounds like a monster.
    I'm currently seeing a Massotherapist and Chiropractor who have both helped quite a bit. I am now able to walk about 10 minutes an hour however; I do have global atrophy from all of this bed rest.
    I'm able to sleep through the night, much to my surprise without pain. I woke up the other night and had no pain in my feet or legs.
    I think this is what's confusing every specialist at this point. Neurology feel that any type of nerve-related pain wouldn't dissipate at night and vascular initially thought claudication but I have no pain "while" walking or doing stairs but an hour or two later it appears. (Which lasts for days after stairs or walking more than 10 minutes an hour) Isn't this strange? At times, I still wonder about biomechanical issues.
    My primary physician wants me to see another Neurologist and Vascular specialist which I intend on doing. Until then, I'm keeping up with the Chiropractor, Massotherapist, Podiatrist and will begin Aqua Therapy soon.

    Thank you for taking the time to write me. I wish you the best.
  6. Hank

    Hank Guest

  7. Kickerz

    Kickerz New Member

    any luck

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