Monday, February 13, 2012


Before I begin, let me start with a brief apology to those of you have read this blog for a while or who stay in touch with me on Facebook: yes, I'm sorry, this blog post (and some subsequent ones) is going to be about my pain. If you're pretty sure that you don't want to hear me talk/whine/complain or however you want to characterize it anymore, now's your cue to navigate away because this is the last time I will apologize for it. I'm not Tony Robbins and this is not "The Secret". If you're looking for flowers and rainbows and positive affirmations, you may need to look elsewhere.

Ok, you still there? Hey, thanks.

So, we've established that I'm going to talk about my pain. I want to be clear, though, why I have decided to start writing about it again because, truth be told, with the exception of my previous declaration of war and some thinly-veiled references on Facebook, I have actually not written, at length, about what is going on with my body for some time.

This post will start from the beginning of my issues. For those of you that know me well and for some time, this will be repetition. For those of you who are fairly new to my life, this may be enlightening. Many of you think I have a "bad back", which is not entirely untrue but is certainly not the whole story. Either way, the point of the "rewind" is not to generate an outpouring of sympathy for poor ole me (which is entirely unneeded) but rather for three main reasons, some of which will become clearer in successive posts:

  1. For me personally. Writing is catharsis, like a cleansing ritual. I want to write all I have been through down, one last time, to get it out of my head and into words and then let it go. I don't just want to, I need to. Think of it like therapy. I am also hoping that I am coming to the end of the mystery of my issues (more in an upcoming post) and so I'm looking at this post like a clean break.
  2. For anyone else who suffers with unexplained, chronic pain. While I realize the dangers of what I call "Googlenosis" I am forever thankful for the power of the internet in helping me piece-together the issues my body has faced when my doctors and therapists have failed to. I wish I could reach through the computer screen to thank every person who posted their "out of the norm" experiences on a blog or in a forum so others could learn. So, if there is anybody else out there who suffers from chronic pain, I hope that, by sharing my experience they will find this blog and not feel so alone in their search for answers. I hope my story will encourage them to never give up trying to find help and to never accept what the medical community tells them when every other fiber of their being tells them that it is wrong.
  3. To highlight the inadequacy of the medical community and systems in diagnosing chronic issues. We are brought up to think that, with some high profile exceptions, modern medicine has pretty much seen it all, done it all, understands it all, and has a solution for it all. Even that which we know it does not cure we are at least confident can be diagnosed. Yet my experience has been that doctors and therapists are, in general, woefully inadequate in diagnosing multi-facted and deep-rooted chronic problems. The entire system is built around acute needs. Even the famed "Dr. House" only steps in to solve the puzzle once you're at death's door. Personally, I'd rather figure stuff out before then.
In many places these posts may sound negative and hopeless and in some places defiant and hopeful. I set out to make them, as a whole, neither. What I will be, and always am, is real. Bring to it what you will. At the end of it all, I hope to end on a positive note, a positive outcome, as you follow my journey through therapy for what is now, I hope, a diagnosed set of issues. But that ending has not been written yet. 

So let us start at the beginning...


Before the fall of 2005 I was a fairly fit and healthy 20/30-something girl. I got up at 4:30 in the morning almost every day to go to the gym where I would work-out HARD, lift weights, and pound the cardio machines. Once upon a time in my 20s I did a stint as a personal trainer and so I knew what I was doing. I was in great shape. I did yoga, weights, swimming, hiked, and skied. My thighs were notorious with my friends for their power and muscles, folks would always comment on them. I was strong and happy - for me these two are closely connected. Working out was also my therapy, my stress-buster. I was one of the few people who actually liked going to the gym.

Then, in the middle of a stressful period at my job at the time, I began to have muscle spasms in my neck and upper back. Like everyone, I put these things down to too much time at the computer, bad posture, and the stress of my life. I would often say, in excuse "I carry my stress in my neck and shoulders." I took a couple of ibuprofen and soldiered on. That was until it got so bad that I couldn't sleep at night without a heating pad and a ton of medication. So I went to my doctor at the time and he sent me to physical therapy.

After 6 weeks of physical therapy, my pain was all-but gone. Hallelujah! I was discharged with a series of exercises and a deep sigh of relief.

The day after I was discharged I woke up and went to the gym as usual. I got on the eliptical trainer to warm up and practically leapt off in pain. My right hip seemed to be "stuck" or "locked" and every time I tried to push down on it in that plane of motion, it was incredibly painful. I found I could not lunge or squat, although I seemed to be able to walk fine, and my hip suddenly began to pop or crack for the very first time in my life. I literally sounded like popcorn as I moved. (Little did I know back then!)

Back to the doctor. Back to physical therapy.

Again, physical therapy seemed to help out quite a bit. Went through the motions, left with some stretches. But something lingered that I couldn't get past. The popping/snapping never really went away and I was left with a feeling of tightness in my hip/groin. Trying to move my right leg toward the center line of my body was uncomfortable and, in my cases, painful. I left it for a while and then went back to my doctor. 

At the tender age of 30, I was told that my symptoms were the result of getting older. After picking my jaw up off the floor, I left for one of those prerequisite 6-8 week periods that all doctors seem to think will "cure" everything. You know "give it 6-8 weeks and see how it feels then."  Nothing changed and so I went back to the doctor and insisted that he refer me out to someone else. Reluctantly he did and I got an x-ray and an appointment with an orthopedist.

The x-ray showed what looked like a very small tear in the labrum of my hip socket. I was sent for an MRI of the area to confirm, which it did, and referred to an orthopedic surgeon who, of course, recommended surgery to remove the torn soft tissue, which was impinging on my hip socket. I had just got engaged and was planning a wedding, so the last thing I wanted to deal with was a surgery, so I decided to put it off until after the wedding, continuing with my physical therapy exercises to see if I could address the pain that way.

Unfortunately, the issues remained and so I went back to the doctor. By this time I had changed medical groups and so I had a different doctor. Which meant another set of x-rays and a different orthopedic surgeon. This time he diagnosed me with not only a labral tear but an acetabular impingement, which changed very little except for the scope of the surgery.

In March of 2008, I had surgery to repair my labral tear and to "debride" my right femur, which is a fancy way of saying that the docs went in there with some medical sandpaper and re-smoothed the top of my leg to fit better into my hip socket. I recovered quickly and was walking in record time. Unfortunately, I was left with more issues than I started with. 

The physical therapy my insurance covered focused on getting me back to walking without a limp but that was about it. If I had any desire to get back to the kind of shape I was in before the surgery (and I had still managed to stay fairly fit despite some limitations) I had to pay for a private P.T. Which I did because I still had the popping/clicking, continued to experience pain and discomfort in the same plane of motion but now worse, and, in addition, had a very tight and very painful I.T. band as a result of the traction they placed my hip in during the surgery.

By August of 2008 I was doing a little better but still was not as good as I had been pre-surgery. Unfortunately, just about that time I got pregnant. 

I say unfortunately but truly it was a blessing. I was one of the lucky women who got knocked up on the second try. The "unfortunately" came from the fact that I had expected to spend many months trying to conceive, as it had my mother before me. So just 5 months after my hip surgery, I was about to put my body through one of the most taxing physical experiences of its life. In hindsight, not the best timing.

Despite the usual morning sickness in trimester one, I had a fantastic 6 months of pregnancy. Sure, I did not like being pregnant one little bit but from the perspective of health, I was picture perfect. I remained active, working out, and my hip seemed to have stopped hurting.

Then, in January of 2009, at 7 months pregnant, I slipped during a mild, pre-natal yoga routine at home, felt a sharp pain and "crack" in my pelvis and hit the floor. Fortunately, I did not land on my stomach but I could barely walk. Lifting my feet off the floor made me wince in pain and sitting down for longer than a few minutes at a time left me almost unable to get up. As I came to find out, I had separated my pubic bone, something actually not uncommon in pregnancy and known as S.P.D. I was told this would go away fairly quickly after I gave birth.

Unfortunately, it did not. In fact, when I tried to so much as walk around the block after my daughter was born, I was faced with pain that shot around my body in sharp stabs. Up my back, down my legs, into my feet, around my lower back. Trying to do something as simple as turn around or lift my daughter would result in me putting my back out to the extent that I would have to lie in bed with a heating pad and heavy painkillers for a few days at a time. I tried repeatedly to return to the gym but, each time, seemed to hurt some other area of my back. 

Back to the doctor. She recommended Osteopathic Manipulation, sort of a combination of chiropracty and massage therapy. The Osteopath diagnosed me with Pelvic Instability, a rotated pelvis, and pelvic girdle pain. She identified that my ribs would repeatedly pop in and out and would, on a weekly basis, "fix" them, as well as doing some manipulation to try and encourage my pelvis to rotate back. She also did massage therapy on my pelvic girdle muscles, which is as intimate and invasive as it sounds.

After about 3 months of this, I was doing better and discharged. Yay! We're now in late 2009.

Unfortunately, as seemed to be the pattern, I decided to try and start back on an exercise routine and, every time I did, all but my pubic-bone pain returned.  I had the shooting-stabbing pains coupled now with a burning in my sacrum and just general feeling of displacement in my pelvic area in general. Just so much as a foot out of place as I exited my car would result in days of pain and discomfort. My daughter was trying to walk and I would often find myself crying in frustration alongside her as she all-but begged me to bend over to hold her hands and helped her but I could not. Getting her in and out of the car was awkward and painful and I routinely crossed my fingers that I wouldn't make a wrong move and wind up back in bed again. I remember many summer days watching my husband and daughter in the back yard while I sat on my zero-gravity chair with an ice-pack on my sacrum, downing NSAIDS. I just couldn't imagine what I would do when she became even more active. I was heartbroken to be sitting on the sidelines and the pain seemed to be getting worse.

I changed Primary Care Physicians to get out of my restrictive network and decided to get a second opinion. Again, another referral to another physical therapist. This one was, again, outside of my network, but I was assured by my new doc that she was "the best", so I paid out of pocket. There was no amount of money too much to get rid of the pain.

This P.T. diagnosed me with S.I. Joint Dysfunction. Basically my pelvis was hyper-mobile and unstable, causing everything to be out-of-whack. This was pissing off my nerves, not only in that area but now in a spreading pattern, which was the shooting pains in seemingly unrelated places I was feeling. I was told there was really no fix and that I would forever have to modify my movements and behavior to accommodate. No skiing for me, for sure and I had to give up yoga, something which I had come to love.

Again, more new exercises (all of which I did, routinely, every time at every stage in this process, I might add. I never phoned them in) and more ice and more massage. This time, there was limited impact. I felt I had more understanding but no results. In fact, if anything, the experience with this P.T. had caused me to feel more despondent about my physical outlook. Part of me refused to accept or believe that, at 35, this was the best I would now ever be. 

We're now in late 2010 and I was beginning to get desperate. My daughter was going to turn 2, I couldn't return to exercise, couldn't lose the baby weight, and couldn't really enjoy my time with her. Everything with an infant requires lifting and sitting on the floor, both of which caused me significant pain and discomfort. I was getting despondent, grouchy, tired, and a little depressed.

During this whole time (from pre-surgery and until today), I had been seeing a massage therapist who managed to help me address some of my symptoms through her mix of massage techniques. She recommended that I try accupuncture with the lady in the same office suite as her. Despite having a fear of needles that is almost unrivaled (I faint when having my blood taken unless lying down) I decided to give it a go. I had 24 needles inserted into my back and lay there for 90 minutes while they vibrated. When I got up I found I could not focus my eyes for almost 24 hours. Needless to say (or should I say needlelesss to say) I never went back. It's a testament to my level of desperation that I even tried it.

Next up in the list of tried-and-failed treatments was seeing a specialist in The Alexander Technique. I had felt for some time that I was finding it increasingly more difficult to find "center" with my body. I knew my posture was getting worse but I couldn't figure out how to fix it. Everything I tried - from ergonomics to biofeedback - didn't seem to work and a friend who had similar hip issues had tried, and found useful, this technique. Although this was a helpful process in making me more aware of my body and it's movements, it did not relieve my pain. At $80 a session and a 30 minute, one-way drive during business hours, it was emptying my wallet and cutting into my workday so I called it quits after 5 or 6 sessions.

And then I saw a news segment on a physical therapist who trained athletes and specialized in getting them back into shape after injury. I convinced him to treat me for a reduced cash fee and it was the best thing I ever did because, for almost a year after I started seeing him, I had virtually no pain and felt the best I had felt in years. Unlike every other physical therapist, he worked on getting me back to peak performance, creating a grueling regimen of exercises that had me lunging and squatting (two things I thought I should never be able to do again) and jumping and leaping. I was absolutely overjoyed. I actually started plotting when I would take my daughter skiing and ice skating for the first time. 

Then, in summer of 2011, my shoulder and neck pain resurged with a vengeance. I did all the P.T. exercises I remembered from years past and managed to mitigate the pain. However, right after I did that, I stood up from my spot on a Tahoe beach and felt my left side spasm. Back to nursing back pain again.

Not long after that episode, I started to feel pain in my right knee when doing the plyometric exercises that I had been doing for the past year or so. I rested up for a while, thinking it was an overuse injury or strain but the pain got worse until, finally, I could not walk up stairs to my bedroom without using all fours.  Since many of my P.T. exercises of my back involved my knees, I had to stop doing those too, resulting a resurgence of my S.I. and pelvic pain.

You guessed it... back to the doctor.

An x-ray of my knee revealed nothing amiss.

Guess what? 

You're right... back to physical therapy. 

Physical therapists gave me a non-specific diagnosis of a knee that basically keeps "running off the tracks" causing degeneration and pain. But don't worry, it could be mitigated with... more exercises.Although, of course, the pain would never go away entirely.

By this point, I had about 2 hours worth of physical therapy exercises that I should be doing in any one given day. Forget a "workout" I was on "full time" physical therapy.

Let's pause here for a second because, before you ask, I should share that I did, throughout these interactions with doctors and therapists, try to give them the history of all my issues in an attempt to inquire if something more fundamental was going on with my body that was causing me to repeatedly injur myself. However, nobody listened or was interested. Each successive person wanted to hear about only the acute issue at hand. I was repeatedly cut off mid-sentence, ignored, or told my information was irrelevant when I tried to bring up what seemed to be, to them, unrrelated issues. The closest I had got to any kind of explanation of my multi-faceted pain symptoms was the one from the two therapists ago that said I had inflamed, "pissed off" nerves. However, that did not explain how I was experiencing successive structural issues in different parts of my body.

The knee physical therapists' exercises helped/help with my knee pain meaning I can now at least climb stairs but the pain is not all gone. I'm left with lingering pain and instability in my right knee that pops up inconsistently and constantly leaves me with concern that one wrong move will result in me needing knee surgery. Oh, and I now have snapping in my left knee when I walk up stairs. I'm not even going to bother mentioning that to a doc.

However, since late 2011, I have not been able to shake the pain and stiffness in my neck and shoulders.  My thoracic spine is often in a lot of pain, only momentarily relieved by being "popped" while I roll over a foam roller. The muscles around my neck, scapula, and thoracic spine feel sore to the touch, spasm, and constantly ache. The P.T. exercises I was given back in 2005 no longer work and the pain has been getting increasingly worse. Unlike the knee pain or the S.I. joint pain, these pains don't let up no matter what position I am in - sitting, standing, laying down. In fact, some days it's hard to get to sleep without a process of deep breathing and meditation. Driving was/is painful because of the static position. Working at a computer was/is painful. Sitting on the floor painful. Light exercise seems to make it better but that is a fine line too - try to step-up the routine in any way, shape or form, just makes things worse. Even rest doesn't really help. I wake up in the morning with pain and stiffness and I go to bed with pain and tightness. Shooting pains migrate throughout my body, down my back, my arms, my legs, into my feet on any given day and at any time, seemingly without cause, rhyme or reason. The other day, my heels began to hurt like crazy. Went away after a few days inexplicably.

600mg of ibuprofen at a time stopped impacting the pain at all some time ago so I basically stopped taking them altogether (not that I really took them except on really bad days.) Muscle relaxers take the edge off a little but turn me into a bit of a zombie for a few hours. Bottom line: I don't like taking pills because they don't "solve" anything and Lord knows what other issues they create.

Further, an overly-ambitious massage therapist I went to for a "fun" massage, managed to dislodge my pubic bone again in January, meaning I had to try to repeat some of the therapy I remembered back from 2009 to ease it back into place. Another thing I was forced to realize is always just one wrong move away from going "wrong" again.

As a last shot in the dark, I recently resorted to pulling my I.U.D. because I had found that some women online had been experiencing some undiagnosed shoulder and knee pain that was alleviated after theirs was removed. That was back in early December and, if anything, the pain has got worse not better since then.

We're pretty much up-to-date now... early 2012. Physically, I feel like my body is caving in on me. I feel like I can never get comfortable. Mentally, I am despondent and frustrated. Both emotionally and physically, I am tired, dead at the end of the day. I feel like I could sleep for 12 hours every night and still never feel rested. Unlike the days when I used to bound out of bed at 4:30am, I now find it hard to rise by 7am. I'm irritable, short-tempered, and unable to absorb the regular stresses of everyday life that used to just roll off my back. I've got very little left to give to the most important people in my life any more. I spend all day just trying to push the pain to the back of my mind just so I can work and then I fall apart in my personal time. My not-yet three-year old daughter is already so tuned-into Mummy's problems that she drags a pillow and a bean-bag to the area she wants to play with me in, before even asking me to hang out with her. She often asks me why I look so sad and then rubs my back and tells me "It's going to be ok, mumma," It sounds sweet to an outsider but to me it is the most heartbreaking thing in the world. I wanted to be a positive, strong role model for her, not a broken mother who sits on the sidelines throughout her life. This is not the legacy I wanted to create. It's far too early for her to be caring for me.

My memory seems to be impacted too. I forget things with a frequency that is alarming, causing my husband to ask me "who are you?" at one point in Kohls after I forgot, dropped, or left behind a succession of things.  People tell me things and I quickly forget them if I don't write them down, something which I almost never did before. I forgot my parents' anniversary last October for the first time in my life (something I am just owning up to now because I was too ashamed to admit it to them at the time - sorry Mum and Dad.) I double-schedule things on my calendar, forget appointments, and, in general, have become to feel like a basketcase.

I feel like the shadow of the person I was just five years ago. And while I have not lost any of the determination to keep fighting, I had lost most of the hope in actually being able to change my situation. Pain and limitation have begun to feel like the norm and all I can think is that I'm only 37 - this is the best it's ever going to be, it will only get worse from here as my body ages. I can't imagine being 60, the regular aches and pains of old age, coupled with my current pain and issues, which only seem to be getting worse. I have been increasingly worried that I have some kind of major, undiagnosed issue that is degenerating my body bit-by-bit and that, at some point, maybe 10 or 20 years from now, it will all come home to roost.

And this kind of worry impacts how you live your life, let me tell you. Not just in the here-and-now but also in your plans for the future. If you had come to truly believe that you would not be physically competent to do all the things that you're currently planning for your later years, your retirement, what would change for you, right now?

I will talk more about the impact to my life and psyche in the next post because, honestly, it's just as degenerating in it's own way as the pain and dysfunctions themselves.

Then, I promise, I'll move onto the diagnosis I recently received and the path forward.

Until next time....


Michele Sunseri said...

Okay, after reading all of that I really want a diagnosis too! I went to doctors from 14 years of age until after college with back pain that made it impossible to stand for lengths at a time and brought me to my knees crying. Turns out, I had endometriosis. One simple surgery solved all my problems. Although I am tied to birthcontrol for the rest of my life which causes high blood pressure but I was so thankful the pain was gone! I feel for you and pray for a solution!

MACMD said...

Michele : my mother had endometriosis as did a really good friend, so I understand how debilitating that can be. I'm glad you have it under control for the most part.

Joy said...

You didn't just stopped there and leave me hanging!!!

First of (I thought ^ was first of?!), I feel ashamed not knowing all of this already. Talk about a close friend (at least I consider myself close) who can't keep up.

Secondly, I am totally in agreement of the limitation of our medical society. I have been battling something "womanly" of my own and to this date, basically told to accept that this is the new norm. I spent 30 mins. listening to my OB's Nurse Practitioner yesterday telling me really, "there's not much I can do"...what fun!

I pray that what you found, which I think you will disclose in the upcoming posts, is going to really bring the old you back. In the mean time, get to writing because I want to know what happened?!

Vickie Horvath said...

The frustration you are feeling with the lack of answers is so evident,I wish I could do more for you than to lend an ear.

A couple of things jumped out at me and I just want to put my two cents in with the hopes to just keep it in perspective.

You mentioned your memory being impacted and I can speak from experience that when you are under alot of stress the memory is one of the first things to go. I belive this is a coping mechanism. It is only temporary, when the stress leaves the memory comes back.

You also talked about your daughter knowing when you are in pain and yes you are right from the outside this is so precious and only prove what a wonderful and caring daughter you have raised. I know as parents we never want our children to take care of us but sometimes that is exatly what we need.

I know I'm putting a silver linning on this but I cant help myself. You are one of the strongest, kindest and funniest woman I know and you will now need to lean on your friends to help you thru this.

Love You My Dear Sweet Friend

e said...

Two things: I think you did a good thing to write this (and the subsequent) post. Being honest about what's so is not whining and complaining, it's being honest about what's so. I know all this, because we've been in communication all this time, but seeing it all on the page makes it very clear that it's not a series of annoyances but an overarching issue that is having a huge impact.

It's unfortunate about Western medicine that they only treat the symptoms, and that they also often don't listen to us. I recognize most people don't have a damn clue what's going on with their bodies, but you're not one of those people.

Second (ok, third), I'm with you on the idea that sharing this kind of thing might help others. Like you said, having access to these shared experiences can short cut diagnoses for us that might take much longer or never come. Good on ya. Now I'm going to go read the diagnosis post.

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