Here's a lengthy story but I hope someone can lead me in the right direction. Three years ago I was remodeling a house(tearing down walls, mouse droppings, mold, etc) and got an infection that didn't go away. The first symptoms were general flu like with an erratic pulse that would wake me at night and continued throughout the day. Since then I've not been able to breathe the same but recently it's become much worse. Extreme fatigue, shortness of breath -worse on minimal exertion, three weeks ago started having a pain in my left shoulder blade with arm and hand tingling, for awhile have had occasional lip tingling, fluid in ears since this began, hard lumps behind ears for longer, gastric problems beginning before, heart irregularities starting then as well as recurrent low grade fevers, lethargy, loss of muscle tone preceded by weakness, nonproductive cough that began before recently starting occasionally smoking, very cold hands and feet, clammy skin when intolerant to heat including sweating when I previously wouldn't break a sweat in 90 degree temps, bruising easily, memory problems and at times just not feeling very smart, spending multiple days in bed monthly- sleeping almost straight through, Then herniating discs months after which led to prescription for pain pills which never adequately eased enough of the pain. I was afraid to be labeled a drug seeker so I didn't push the issue, nor my other worst problem of fatigue. I also didn't mention all of the above symptoms thinking they were unrelated due to fear I wouldn't be taken seriously and considered a hypochondriac. This led me (much later)to find solutions on my own to try to ease the constant pain that wasn't managed by what was prescribed and give me energy I lacked and mentioned during dr visits but didn't explain how greatly if affected my life and those around me.
This month marks three years since my near perfect life started falling apart. At first I put great effort and energy I lacked into finding out what was going on. I had pulmonary tests confirming diminished lung capacity suggesting asthma, MRI pointing to 3 herniated discs with another bulging with degenerative disease(which probably most people have), EKG's and ultrasounds showing arrhythmia and pvc's and tachycardia, various holter monitors(one for a month) confirming large jumps in rate upon minimal exertion, murmur discovered by stethoscope, visit to two cardiologists then another at University of Michigan prescribing heart ablation (which I cancelled because I thought it would just be fixing a symptom instead if the problem), traveling to Florida Mayo confirming need for ablation(after swallowing a camera tube to look at my heart), referral to gallbladder surgeon for removal(at 5 minute consultation he said there wasn't a problem and sent me away), a rheumatologist said since ANA test was negative it didn't indicate Lupus(2 aunts of mine have it). For my back i tried physical therapy, chiropractics, tens unit with no relief then a spine doctor said one of the discs wouldn't go away without surgery which I didn't want to get. I've had blood work done and my cholesterol is great, two thyroid tests showed opposing results but not out of the range, liver enzymes elevated(but they will try to attribute that to misuse even though it was not frequent abuse of prescibed morphine and street drugs for energy and testing was done 3 months after the fact), progesterone and estrogen levels normal.
I eventually gave up, after all I was seen by the best doctors and they didn't find the cause. This required much time, effort, energy and money and I was just done. I lost faith in getting better but I still remained positive even with my life crumbling and ending up in court, jail, rehab, house arrest, loss of trust and respect from family and friends. I always tried to be positive and was told by many in jail that my attitude inspired them. I appreciate going to jail because I had alot of time to reflect but I don't appreciate the effect on my family and my relationship with them now. But my actions caused all this, regardless of the reasoning behind my actions. I've never once tried placing blame anywhere other than myself.
During rehab I learned alot about myself and tried hard to fit into their label but so many things just didn't relate to me. Then they tried convincing me it's ok Superwoman (a term I coined while there for my former self) died. At the time I believed it and wrote my goodbye letter to her. Then a week later I got pissed and realized it is NOT okay! Sure, she may have been a little too perfectionistic and over-achieving but she didn't have to die.
So began my renewed effort for answers. While at rehab you have an initial consult with their doctor. This ironically happens to be the doctor I had tried previously to see, after hearing he was a good diagnostician. He wasn't accepting new patients so I was unsuccessful. But during the consult he heard the short version of the circumstances leading to today and then told me to call his office and let them know he'd take me on.
When I later visited him I was at the peak of my anger. Recent changes in my home life stemming from my poor choices added fuel to my decision to try once again to find the right answer. So that doctor listened to my story and what symptom and sequence led to what. He spent an hour listening and gave me hope again. (he also listened to my heart, found irregular, brought in an EKG confirming abnormal activity).
He prescribed norepephedrine for energy, scheduled another MRI for pain management, blood work and another Cardiologist visit followed by another visit with him to go over results. I believe seeing him while I was most angry and frustrated helped me to express how much this has affected my life. I have hope it also helped him realize that not everyone who walks through those rehab doors abused substances to get high. Maybe- just maybe they were finding a solution when none was found for them. Albeit an illegal, destructive and immoral one.
Since that appointment I again began thoroughly researching, finding relations to autoimmune responses regarding adrenal, endocrine, metabolism. At previous visits I failed to give good familial history regarding thyroid, adrenal, endocrine, sudden unexplained adolescent death and heart problems- all in my genetic heritage. I failed to list all my symptoms, therefore hindering accurate diagnosis. I've never been one to complain about health and succeeded in avoiding doctors, and was very healthy until 3 years ago. I realize in hindsight that I probably wasn't a very helpful patient in this process. Heck, using words like "patient" and symptoms was a struggle for me while writing this, so was getting a prescription filled.
In my research I found those diseases in my familial lineup cause deficiencies in your body and can bring about what my body is doing. An added note, they can also reduce the efficacy of certain drugs in how your body metabolizes them, rendering them useless. This is what I've been trying to convey all along. If you don't achieve the hedonic pleasure from certain drugs(and minimal pain relief) then you will have a harder time becoming addicted to that substance.
I'm not going to go into specifics regarding what I feel supports my theory such as lack of withdrawals, lack of cravings(except craving who I was before all this) lack of anhedonia, no urges, lack of genetic history substance abuse(environmental, yes), lack of "high" relative to others, lack of signs of "dope sickness", no substituting.
I'm not depressed, rather I feel I'm pretty darn well adjusted and positive in light of events. Even when giving up on doctors I still remained positive about life. I just dealt with it but tried to still be active when my body fought me. I fought back how I could. So begins my new quest for answers. Please help me.