The beginning of the story…

UPDATE 1: I saw the orthopedic surgeon yesterday. Can I just say that I am so blessed that I found him and that I was able to get to my appointment. I can’t drive due to pain and numbness and thankfully my mom was able to give me a ride at the last minute after I missed the bus. He actually spent an hour before my appointment going over all my records, refunded my co-pay when he heard about my money troubles, and is helping coordinate with the rheumatologist and neurologist! How awesome is all that?! We didn’t get too far until I see the neurologist and they can coordinate (he got me in to another one for a second opinion), but it was great to talk to him and I felt CARED for, finally!

Update 2: My uncle, who is a nurse, has been bugging me for over two years to look into food allergies/intolerances as a possible culprit of all my symptoms. After talking with my PCP, I am going to schedule an appointment with a dietician and try a gluten-free diet first. I know gluten-free is so trendy (I think because it makes you eat healthier because you have to cut out so many bad grains), but some people really need it! I am going to try embarking on it this weekend and made a little meal plan for myself so I can document things to take into the dietician. Maybe it will just help my fibromyalgia in general. I know celiacs can cause peripheral neuropathy. I have been tested for it and the test was negative but that doesn’t really mean much, I could still have a gluten sensitivity.

Some background on this:

Almost three years ago, I started having so many GI complaints, fatigue, and headaches, as well as a foggy-headed/sick feeling EVERY time I ate anything. This is really what led to the relapse of an eating disorder I had struggled with since high school. It was not your typical eating disorder, I just began to associate eating with sickness and therefore wanted to avoid it. I did this without even thinking about it that much. Of course all the practitioners typically ignore this and attribute my symptoms to my eating disorder, but I have to stress to them that the symptoms came FIRST, and then the relapse. I didn’t even start thinking about weight that much again for a long time. Gradually my old body image stuff from the first time I had my e.d. came back, of course, but the onset of the relapse was due to this sickness. Even now, I am struggling with bulimia (really started after the onset of my nerve problems last summer) and I have worked through SO much through DBT with identifying emotional triggers and hunger triggers etc. And I think I am doing good with that part. But the last thing to go, that I still hold on to, is how I will avoid eating or purge because I don’t want to feel sick! I have researched this today and have found that there are a lot of people out there like me who use e.d. behaviors to deal with celiac’s or other food intolerances. DO any of you relate?

Ugh, I know I am a complicated person, but I am sick of forcing myself to eat things just so people don’t think I am weird. I just want to eat things that feel GOOD to me. I want to eat cleaner and try this gluten-free thing. And I DO NOT want to feel guilty about it. I deserve to feel better and to be healthy.

THIS SAID — I MAAAAY start taking some food pictures, just to help myself out, but I am embarrassed….I guess its the same thing I need to conquer above, not caring what other people think about me!

I also want to add pictures of my other passions, which haven’t come out on here yet because I keep blabbing about my medical problems! But I love DOGS, SWIMMING (my exercise right now!), COLORADO AND BEING OUTSIDE, SPRING AND SUMMER, BEER AND WINE, and FLOWERS!

Update 3:  I don’t know what this one is….. 🙂 I guess just that I talked to my boyfriend today and he is so amazing. His deployment is so hard on me, harder than anyone will ever know. But I am trying to remember how excited I am for him to come home and for our marriage and our life together. He is so supportive of all these health concerns. He has been with me through SO much of this and has seen me cry when I wanted to eat something but was just so scared it would make me sick. I love him so much! He is my inspiration in everything, he has an amazing philosophy on life. 

Okay — so THE BEGINNING OF THE STORY:

I just gave you some background on my stomach issues and I will go back to that but I really want to tell this story of my nerve problems first:

– I love exercise! I love everything about it. It relieves my anxiety, it makes me feel alive, I love to be outside, it makes me happy. Being innately active has been a part of me my whole life, from playing soccer as a kid to running to hiking to road biking to taking long walks with my dogs and everything else.

-This is why the following has devastated me so much, not to mention in other ways.

-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!

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 kicking feet while swimming

Then 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 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 usually

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 2009 – Symptoms 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 4 blocks at a time 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

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. But read my last post (WORKING BACKWARDS) for where I am today and how my mindset has changed. I have had to, over time, RADICALLY ACCEPT THIS CONDITION, and how it has changed my life. I still held on to that fear for a long time that things would get worse, but now, after seeing Dr. Kim the orthopedist yesterday, I am trying to conquer that. A great blog that inspires me to do this is www.sideofsneakers.com.

 

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

                                                           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

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; comes and goes, isn’t often but some days is very troublesome

5)      Neck/Upper Back – severe 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)

Sorry if this is all TOO MUCH INFORMATION! 🙂

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6 thoughts on “The beginning of the story…

  1. Oh, my gosh – I just want to give you a hug right now, because I don’t feel anything I can say will help with the pain you are going through! You are so, so strong for going through all of this, and I find it so admirable that you are sharing it with the world. Keep on keepin’ on, girl 🙂 And don’t be embarrassed about photos!! I’ve found the blog world to be VERY accepting – it’s really, truly amazing 🙂

  2. Thank you so much for your comment! I am inspired by so many people in the blog world too and am glad I didn’t scare you away with all my personal info! I started this blog because I wanted to feel connected to the community and also to work on loving myself and believing I DESERVE to feel better and to feel healthy. Your comment was so sweet and meant the world to me!

  3. Oh my gosh- reading through your whole story gives me chills. We’re almost two peas in a pod 😉 I thought about eliminating gluten too, but in the past, most of my stomach troubles have been aggravated by dairy, so it made more sense to start there. Good luck- can’t wait to hear how the gluten free diet goes!!! I hope it helps you feel better! 🙂

  4. Umm, I think it may have been divine intervention that I found your blog. I’m nit 100% that it is the same because my symptoms are much, much, much less. But, you’ve got me wondering if these aches and pains I’m having aren’t related to the numbness rather than being caused by something else. I’d really like to know how the gluten free thing worked for you. Oh, I also get foggy headaches that I think is stubbly related to soft drinks and maybe also tea 😦 when I drink only water I feel much better.

  5. Hi there,
    I can relate to a bunch of this; not all, but a LOT of it. I’m ashamed and I live each day in guilt and wonder. And I always feel bad. Like with the food stuff you talk about; I SO relate. And things like I know I should not eat dairy or fats…but I eat them in excess; and I can’t stop eating. But now I need to gain weight, and I can’t exercise; and everything upsets my stomach – everything. BUT I need to gain, so I”m willing to eat anything; but it feels so wrong with I’m dealing with extreme digestion problems. So. Tired. Of. It. And I kind of never feel right talking to others about it too much, cause they make efforts to do something about it (see doctors, eat the “right’ things, they dont binge, etc…) and I don’t; so it all leads to guilt.
    Must be positive.
    I hope you continue to be positive. Your posts are very “real”; I bet you would make a great friend.

  6. I can relate to your story- I also have chronic health problems. I especially can relate to your eating issues- my nervous system condition causes low blood volume, so my blood all goes to my stomach after I eat a big meal. This makes me feel really sick, so I subconsciously started eating less until I was diagnosed with an eating disorder. I admire you for sharing your amazing story- stay strong, girl! 🙂

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