My Illness

I don’t have a name for my illness as I don’t fit neatly into any of those traditional little categories we all hear so much about.  I have symptoms consistent with a great number of disorders ranging from metabolic disorders to autoimmune disease, making treatment even more difficult.  If we don’t understand the process or mechanism by which the symptoms are occurring, we stand little chance of finding the right treatment.  The only way to explain my illness is to describe what it has been like living with it, so here goes…

I firmly believe this started in my early 20’s with bouts of extreme fatigue and muscle weakness.  I was a single mom, working full-time and going to school full-time so it was all easily dismissed by my doctors as simply doing too much.  I, however, knew they were simply not listening.  The muscles in my legs were so weak that my knees felt like they were sliding out of joint when I walked.  Stairs were nearly impossible.  After work, I would basically collapse on my couch with chills and body aches.  After a few days, it would subside and after a few days more, I’d be right back to my old self.  This went on for a couple of years with episodes every couple of months, lasting only about a week.  Then one fateful day, my episode ended and my knee pain did not.  What’s more, they made this awful grinding noise when I flexed my leg or went up or down stairs.  I was diagnosed at the time with osteoarthritis and bilateral patellar tendonitis with severe crepitus.  While my doctors saw this as something totally spontaneous, I was convinced (and still am) that it was directly caused by the muscle weakness.  I was sent to PT and given Advil.  After a few months with no resolution, I was written off with “over-useage syndrome” and left with the option of one day having a surgery to correct the crepitus.  Meanwhile, my regular doctor decided I probably had Chronic Fatigue Syndrome and ordered proper diet, moderate exercise, and lots of rest.  Gee… thanks.

Over the next few years, I simply learned to live with the episodes and worked around them as best I could.  I developed chronic pain in my left hip, both feet, and right shoulder that had followed the same course as my knees.  In between episodes, I was able to do all the things I love.  I worked with teens in a summer camp and after school program and we lived pretty large… hiking, sports, swimming, shopping till we dropped… I’d say a good several hours of high energy stuff every day and I was able to keep up just fine.  But when the episodes hit I was sitting the sidelines, counting the days until it would pass.  During that time, the episodes became a little harder to recover from, much like recovering from the flu… lots of rest required.  I also seemed to be picking up new symptoms here and there, like nausea, vomiting, headaches.. again, much like the flu.  Still, I managed.

So that was life for Tammy until I became pregnant with my son in 2003.  For the first several months of pregnancy, I had no episodes.  Granted, the residual pain in my joints was still there and I felt somewhat fatigued, which was to be expected.  I was working as a long-term sub, at the time, and around April of 2004, I tanked in a huge way.  I remember vividly, walking my class down the hall to the lunch room and starting to feel lead-legged.  I knew in that moment it was the start of another episode, even though I had pretty much forgotten I had ever been sick. 

The fatigue was back with a vengeance!  A couple days later, not only did my legs feel weak, but my hands and feet were tingling.  My PCP at the time told me it was hyperventilation and my OB told me it was probably the increased blood volume and the baby pushing up on my diaphragm, making me short of breath.  So, suck it up, basically.

Shortly after that, I had an attack of chest pains right in the middle of class and called my PCP who advised me to come in for a check.  He listened to my heart and sent me to a cardiologist the same evening.  They did an echo-gram and told me I had an enlarged atrium, but that it wasn’t uncommon in pregnancy and should resolve after delivery.  A Holter monitor revealed PACs and PVCs, again attributable to pregnancy.  By the 9th month, every day was filled with fatigue, pain, chest pain, shortness of breath, tingling, headaches… a long list of concerns to no one except myself.  I also started itching and breaking out in hives which is important to note as that became a real problem down the road.  I honestly spent every day fearing for my life, afraid to go to sleep at night for fear of not waking up in the morning, and terrified at the thought of dropping dead in front of a class full of students.

Finally, on June 25 of 2005 I delivered (by c-section) my son.  In the days that followed I remember being so relieved that all that was behind me and so looking forward to feeling NORMAL again.  I returned to work when my son was 6 weeks old and it only took a couple of days to realize that NORMAL was NOT how I felt.  It was all still there!  Only a couple days of work and I had every symptom I had started with!  Thinking these things just need time, I hung in there, but slowly, things went from bad to worse.

I went back to my PCP who told me I had an elevated white count, likely because of an ear infection, and gave me an antibiotic.  Just so happened to be sulfa –the only thing I am deathly allergic to!  Don’t ask me how!  Every check and balance in the system somehow failed me and I when I took it, I had an anaphylaxis reaction to it.  That about did me in, for sure.  For the months that followed, I was in excruciating pain from muscles, joints, and everything in between, relying on pills to get me through the work week.  I had next to nothing left to give my son when I came home and sleep was the only thing on my mind the majority of the time.  Looking back, I don’t know how I survived it all, really.  I just kept focused on knowing the school year would end in June and tried to struggle through.

When summer finally arrived and I was able to slow down, life did improve, somewhat.  Most of the symptoms didn’t improve much, but I did have “remisssions” here and there and I could focus what little energy I had on my kids and myself.  When the next school year approached, I didn’t return to work, but went on a mission to get help and it started with MAKING my doctor LISTEN!  I charged in his office, gave him my list of demands, then off he pawned me to the first rheumatologist who could get me in.  I also remember vividly the day I saw him and was told I have Fibromyalgia!

Finally… VALIDATION!  Someone finally said, “Yes, there is something wrong with you.”  I was so happy to have a diagnosis that I didn’t even stop long enough to really evaluate it.  I started down the long, winding road of antidepressants that either left me suicidal or homicidal, convinced we just needed to find the one that worked for me.  And then in the throes of such profound illness that I would sooner die than wake up to another day in hell, I decided that perhaps that wasn’t what was wrong with me and insisted on being evaluated again.  My PCP and I reviewed my chart together, for the first time, and he pointed out the only consistent abnormality was the elevated white cell count and elevated eosinophils.  Eosinophils?  What the hell is that?  Whatever the fine print, the big picture was saying autoimmune or some sort of chronic inflammation.

Since the tingling in my feet had evolved into excruciating nerve pain with burning so intense I wanted to chop my feet off, I was sent to a neurologist first.  After a thorough exam, he proclaimed that I did NOT have Fibromyalgia.  Next came a battery of tests that ruled out pretty much every differential diagnosis he came up with.  My nerve conduction studies were normal, aside from asymmetrical lateral ventricles my head scans were normal, aside from having no lymphocytes or monocytes my spinal tap was normal… what to do with me now?  Out of sympathy, he started me on a med called Lamictal and talk about dumb luck!  It basically CURED the nerve pain in my feet!  FINALLY!  SOMETHING HAD HELPED!  After a few months I was able to stop taking it and aside from tingling and vibrations I often get, that’s been resolved.

In regard to the eosinophils, I was sent to an oncologist/hematologist who told me I have mild eosinophilia.  That all went badly as I made the mistake of asking too many questions she didn’t have the answers for and after a botched bone marrow biopsy, being told I wouldn’t be treated until I quit smoking, and that I was basically a bad mother for smoking in the first place, I found another doctor.  The second doctor told me the Fibromyalgia (which the neurologist said I didn’t have) caused the eosninophilia and not to worry, but out of all the people I met in support groups who have FM, no one else has eosinophilia, so I decided right then and there to do some research on my own.  You wouldn’t believe the stuff eosinophilia can be related to and what harm those cells themselves can cause to the body!  And I shouldn’t worry?  In the absence of profound illness, ok, don’t worry, but when my life has been taken away by chronic illness, I’m leaving no stone unturned!

I got online and read every article I could and found two doctors reported to be the authorities on eosinophilic disease.  I put in a call to each and got conflicting info.  One doctor told me eosinophilic diseases can take years to evolve and that it could be a long while before I’m able to get a concrete diagnosis.  Since the treatment for this type of blood disorder can kill you, doctors basically want to wait until it becomes life threatening, usually at the expense of a patients quality of life due to damaged organs.  In fact, the diagnostic criteria for some of these diseases require evidence of organ damage and failure.  The other doctor told me that it may never be of any significance and may have nothing at all to do with my symptoms.  She’s seen lots of patients with higher eos than mine who had no symptoms at all.  Ok… but I have eosinophilia AND symptoms of eosinophilic disease?  She had me send up my medical records, but told me I didn’t qualify for her study and suggested finding someone local to work with me.  Oh, and call her back if my counts went above 2.0.  Gee… thanks.

I’ve basically been in a holding pattern since then.  I learned from the Fibromites how to better manage the fatigue and such, and although I lead a pretty minimal existance, I’m in a much better place emotionally, for the most part.  As of last summer, I no longer have episodes, but one long, never relenting, chronic illness that has no end in sight.  My short list of symptoms, and the ones I find most concerning are:  fatigue, muscle weakness, recurring hives, stress incontinence, alternating diarrhea/constipation, chest pains, night sweats, low-grade fevers, chills, loss of sensation in hands and feet (can’t tell cold from wet), muscle twitches, muscle cramps, dry skin/eyes/mouth/throat/hair, hearing issues, constant headaches, occasional fog/focus issues, some memory issues… ok… I’m tired of typing.

Lengthy, yes, but again, that’s really the only way I have of telling people what’s wrong with me.  I still believe that one day all the pieces will fit together a little better and if not a diagnosis, at least a better understanding will come.  Until then, it will be day by day.