Summary: What’s going on with my nerves

I have been meaning to consolidate a post on this for quite some time. Here is all the info about my nerve disorder.

-In July 2009: I developed pain while running, it felt like in my Achilles tendon area. Now, I am an exercise freak, but I am also a very anxious/cautious person. I have never been one to exercise an injury. So I saw a doctor right away. He was an idiot and said I had Achilles tendonitis without really even looking at me that much. He said I could still run, but it hurt and so I quit right away. As a competitive runner, I knew a lot of the seriousness of a tendon injury. Pretty soon it hurt to bike, so I stopped. Then kicking my feet while swimming hurt, so I stopped. Then I couldn’t go on a walk. By September, I couldn’t walk more than a block or get around my house without extreme pain. I couldn’t stand to take a shower; I crawled to the bathroom in tears. Everything hurt, doing situps, sitting in certain positions, leg lifts, walking, standing. My feet would go numb is I sat too long. It was isolated on the medial (inner) side of my right ankle. It could be throbbing, stabbing, burning extending down into my soles, tingling, etc. And it was intense.

Then…it spread.

Here is the PROGRESSION…

July 2009 – Pain in right ankle while running, felt near Achilles tendon area; had to stop running, which I did immediately

Then had to stop biking

Then had to stop kicking feet while swimming

Then had to stop walking (pain a lot worse going up hills)

Went to see a Sports Medicine GP – told me to ice and start physical therapy for Achilles tendonitis;

Physical therapy made symptoms much, much worse; PT did note a large decrease in the range of motion in both ankles, especially right – icing was horrible, heat was horrible, stretching was HORRIBLE!

Soon a walk to the bathroom left me in tears. I had constant intense pain and numbness all day, especially in my right ankle; at this point sharp pain symptoms had spread to left ankle (almost a month after stopping all activity!)

I could no longer drive with R foot, switched to L foot while driving, now I cannot do that either without SHARP pain that will not go away for the rest of the day.

Fall 2009 – numbness while sitting; pain alternating from throbbing to sharp to feeling of heaviness with tingly/numbness feeling all along soles of feet, visible inflammation in R ankle although not that severe, limped because of pain and decrease in range of motion

I started seeing a podiatrist, who laughed at the Achilles tendon diagnosis and ordered an MRI and determined that I had symptoms of a compression of the tibial nerve in my ankles (tarsal tunnel syndrome); cortisone shot in ankles did nothing; he taped my feet so that my ankle wouldn’t roll in and further compress the tarsal tunnel – this gave me immediate relief and I was able to walk up to two blocks again without any pain; he referred me to a neurologist.

Oct 2009Symptoms began in elbow/just distal to elbow and along medial side – pain with numbness and tingling in 4th and 5th fingers

Began swimming using only arms – started at 2 days/week X 20 minutes: within a couple weeks, pain in elbows and wrists increased, started taking 3 Aleve before swim and continued swimming (I was terrified to keep swimming, but I felt like a prisoner in my body – my anxiety was so high, I couldn’t just SIT there and I started becoming suicidal so I trusted my doctor’s advice and just did it with the Aleve).

Nov 2009 – I got rigid prescription orthotics through the podiatrist – very uncomfortable and felt like range of motion further limited and caused knees to swell up – I quit using them after about a month

Dec 2009 – at some point I stopped doing situps and this immediately improved the heavy/swollen/throbbing pain feeling in my right ankle

Jan 2009 – Got a computer, within days had carpal tunnel symptoms

As I increase in Lamictal dosage, or maybe just rest over time, my symptoms have improved to where I can get around my house again and don’t have the 24/7 pain; now I can walk 3 blocks at a time, on good days, and mostly have tingling in feet and some sharp pain along tarsal tunnel when I walk or stand too long or twist foot in certain ways on accident; hand and elbow symptoms improved so no longer constant pain but then remained steady with intermittent symptoms (and I can’t use the computer very long, as you know).

Symptoms wax and wane in location, type and severity, but some pain/symptoms is present at some part of the day in Right ankle/foot

The toll this has taken on my life is enormous, I cannot drive, even consider doing the type of work I used to do, most exercise I want to do is out, I can’t go to a baseball game because I can’t walk from the car to the stands, I can’t go out to a bar with friends if it’s crowded and I can’t find a seat.

I can’t explain the improvement you can see in me since Fall of 2009, but I am still so limited. And on days when it comes back really bad, I get scared I will regress all the way back. Since, I have moved to California, I feel like I have different symptoms.

Overall symptoms (Currently):

JOINTS

1) Feet and Ankles – pain along the medial side of my ankle, radiating down into my feet (especially soles) and toes

  1. Pain can be dull, throbbing, burning or sharp and varies in intensity from mild to severe, depending on day and activity
  2. Also experience numbness and tingling in feet and along sole of foot especially
  3. R foot much worse than L
  4. Hard to curl toes
  5. No longer any visible swelling in R ankle, like at the beginning of all of this, but range of motion is limited so I suspect internal swelling – the range of motion decreases after a short walk as well
  6. Activities that make pain worse:

i.      Walking for too long

ii.      Standing for too long (almost worse than walking)

iii.      Sitting in certain positions

iv.      Cannot bike, do water running, kick while swimming, do situps, leg lifts or any such activity – situps and leg lifts, etc. REALLY aggravate the throbbing pain feeling, I am at a loss as to why

v.      Carrying something heavy

vi.      DRIVING

vii.      Riding in a car or bus (vibrations of moving vehicle)

viii.      Sitting too long usually causes numbness in feet and also causes feet to    turn purple/blue in color – this was really bad in beginning and is now intermittent

ix.      Sometimes just a minor twist or movement of the ankle in certain positions will cause a heaviness and throbbing ache to set in

2)      Wrists, Elbows – pain usually throbbing in carpal tunnel area and along ulnar nerve, with numbness in 4th and 5th fingers;  also random shooting pains down arms and all fingers; much worse usually computer; can only swim 20 minutes on average before pain sets in (I can’t kick my feet swimming at all).

3)      Fingers – no real pain except shooting sensations occasionally, as mentioned above, but joints feel stiff and hard to move sometimes (less range of motion in joints); pain along top of hand along metatarsals, especially with typing or doing fine movements for a long period of time

4)       Knees – after wearing new orthotics for FIVE MINUTES, knee pain and swelling; now it comes and goes, isn’t often but some days stiffness and aches are very troublesome

5)      Neck/Upper Back – aching along vertebrae and muscles

6) Headaches, shooting pains through head, very intermittent

7)      GI problems – constipation/diarrhea, abdominal pain when pressing on lower abdomen

8)      RLS symptoms – legs can feel restless or have burning sensations, itching sensations, bug-crawling sensations, also happens in buttocks and stomach muscles – worsens when sitting too long

9)   Often wake up very “foggy-brained” and feel out of it, feeling can last all day, even with rest. But it is most often present, with extreme fatigue and heavy feeling in limbs, for three or so hours after waking. Some days are fine and others I just wake up like this (has been going on for nearly three years)

————————————————————————————-

Okay,  that is really long. The thing is, I feel so anxious to see a new doctor and have to explain all of this. I am literally thinking of printing this out and taking it in and making them read it. I just feel so afraid with some new symptoms in my legs that aren’t listed here. Do you think I should print it out?

Continued on the doctor anxiety tonight….

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7 thoughts on “Summary: What’s going on with my nerves

  1. I would print it and take it… it sounds like an awfully thorough description and would likely help your doctor understand where you’re coming from. Good luck!

  2. Yes. Print it. Girl – you are so tough – you make me ashamed to worry that I can only walk. Or pay a fortune for a small cramped apartment. Or hate where I live. Or that I eat pizza that is too salty and cheesy and feel disgusting…yeah, sorry.

    God Bless You.

  3. Wow…I just have no words to express how sad I am that you are going through this. Definitely print it out and take it with you to anyone who may be able to help. I’ve had great luck with acupuncture…it may be worth a shot?

    Hope you feel better ASAP my friend. My fingers are crossed for you.

  4. Hi,

    My name is David. I experiences literally the same thing as you. Healthy 24 year old extremely athletic make. Sprained my ankle horribly playing bball. X-ray showed no break. Crutches for 1 week and Advil.

    More crutches.
    PT
    Boot
    B
    PT
    Etc.

    7 doctors later, I am home on disability leave. Can’t walk or stand 5 minutes.

    I’m getting surgery at the dellon institute near Baltimore. This place is the best in the us. If your insurance covers it and you can afford the trip, it is the way to get your life back.

    Good luck.

    David

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