My Story, by Danette MacDonald
I have always been an enthusiastic worker, sweat and blisters never scared me. Almost 5 years ago I was working 2 jobs. One was 5 hours a day and the other depended on the work load, so some days were brutally long, but I enjoyed it. My husband and I split up and it was ugly. Four police officers and a tow truck got involved because he had sabotaged my car in the process of agreeing to disagree...that's life.
I moved on and I had more time to devote to work as a result. I was building a nice little bank account, had GIC's and was in want of nothing. My life was mine again to control, that is, until I started a nagging backache along with a headache and flu like symptoms that fluctuated on and off. I figured it must be a flu; no biggy, take a few remedy pills and push on. Only, I got worse. In the meantime, the stalking and harassment that I was enduring from my now estranged husband, but did not respond to, were starting to wear on me.
I was always worried about what would happen next, so I attributed my symptoms to stress even though I had never physically reacted to stress before. Mind over matter...he didn't matter so I didn't mind. I was using all sorts of stress reducing techniques, but still I was getting worse...so was the harassment. Finally, I broke into tears on the morning of December 15th, 1998 from the pain that had started growing six weeks ago (and I'm a tough cookie). I took myself to emergency. The doctor there (let's call him #1) tried to get me to say ANYTHING that would make it a W.C.B. case. "Was there a pop or snapping sound?" Sorry, I didn't really believe that to be a fact. What ever happened to honesty anyway?
Finally, he gave up and said I need time off work and physiotherapy. Ok, guess I must've hurt myself somewhere along the line and it was catching up to me. Maybe I deserved it for being a workaholic. Without any x-rays being done, my physiotherapist started me on an exercise program that was incredibly painful to do, and the more I exercised, the worse I got. Instinct was telling me I was doing more damage than good so I stopped going to her. I also started gaining weight very slowly.
Finally I went to see my own doctor (doctor #2) in February of 1999. He gave me Tylenol 3's which I used very sparingly because of my borderline allergic reaction to codeine. He referred me to a massage therapist who was excellent, but once again, all I did was get worse. For months I was using painkillers, going for walks, going to massage therapy and a chiropractor while still trying to work. I was laid off from my first job, but I still had my second one which had turned full time. I was told "it" can sometimes takes up to 2 years to recover, but still I continued to get worse. (Recover from what? My injury that nobody can identify?)
Now I was finding that I couldn't sleep through the night without waking up moaning and groaning in pain, sometimes even in tears because it was that bad. When I went to make an appointment, I was told that my doctor #2 had left the country (ironic, or what?) and would I be willing to see his replacement (doctor #3)? I wasn't happy about having to explain my whole story again, after all, I was getting tired of hearing it myself, but unfortunately it was going to be a necessary evil. Having listened to my soap opera, he gave me a prescription for 50mg tablets of Demerol, referred me to another physiotherapist and sent me out the door.
The new physiotherapist was much better but it wasn't helping much and I was finding it necessary to use my pain killers more frequently. The weight I was gaining was getting to be embarrassing. I had gone from a size 5 to a 9 and had to buy bigger jeans. Needless to say I enjoyed the comments that came with this...NOT! Anxiety came and went anytime it wanted to and on occasion I would feel a sharp pain in my chest. The heart palpitations were pretty scary as well and I began to think seriously about quitting smoking. I never did tell a doctor about those symptoms and why would I? I couldn't get help as it was.
Sometime later, the numbness, tingling, burning, aching feelings in my legs started to increase until finally I had a total loss of feeling in my lower left leg from the knee down. That scared the hell out of me, yet my doctor #3 said, "sometimes when I sleep, I pinch a nerve and wake up with numb tingly arms and hands, but if I shake them around for a few minutes, it goes away." (Oh please!!!) My rebuttal was, "Yes, I find that too, but you may have noticed I have NEVER come in here for THAT!" My menstrual cycles were getting worse as well and I felt there had to be a connection here, but he disagreed. After all, what do I know? Ponstan of the highest strength didn't even come close to touching the pain. He did, however, send me to a gynecologist whose answer was to do a hysterectomy without an explanation as to why. Right. My thumb hurts so we should amputate at the knee. Not going to happen. When I asked my doctor #3 to refer me to a back specialist, he replied, "That will take time." I looked at my watch and said "So? Get on it!"
His efforts were apathetic and non-productive. Two weeks later I went to see him again and I was wide eyed with shock when he said "I guess I should finish filling in this form and get it sent off to the back specialist". I stood up and walked out without saying a word. My way of saying, "You're fired". (You KNOW those weren't the only words running though my mind either!)
Into my 18th month of this pain game, I was developing bladder control problems. I could live with the diarrhea and constipation, annoying as they were, but partially peeing my pants was not amusing to me at all. Back into emergency I went. I described all my aches and pains, the irritated bowel and chronic diarrhea and constipation, the numbness, tingling, burning sensations that would migrate at any strength they desired, the weight gain (moved up to a size 12) and the embarrassment of bladder control problems that had now started. You know, I really dislike sounding like a broken record.
I almost fell off the bed from a sitting position when doctor #4 said, "We don't worry about this unless you have lost bladder control completely." (Just what do I have to do to get help anyway?) "Ok," I said, "what you're telling me then is that if I completely pee my pants, that is a problem, but if I only partially pee my pants, that is acceptable?" (I'm in my mid 30's by the way). After a long stare down doctor #4 suggested that perhaps he should find a neurologist. Good idea! What a genius!
The neurosurgeon (Doctor #5) who arrived in due time took all of my information and then asked. "After 18 months you're complaining about this now?" I almost hit the roof. "I have been complaining about this non-stop since it started, but I keep getting more hoops to jump through and some of them are getting to be pretty repetitive! I can't get any help for some reason and I don't understand why!" I was into the CAT scan within a 1/2 hour, but while I was waiting, my doctor #3 showed up and asked why I was there. So I told him! I told him the whole story of why I'm so damn frustrated at the lack of effort he'd put into my case and that I need help from someone who is willing to try. He gave me some sort of a weak apology, said he had done all he could, had arranged for me to see the back specialist (sure you did) and hoped that my CAT scan would be negative or he'd feel pretty stupid. Hoped my scan would be negative or he'd feel pretty stupid?!? Of course! How dumb of me! This is all about him! No wonder I couldn't get any help. Moments later I was in the CAT scan.
A few days later, I visited the neurosurgeon (doctor #5) in his office and once again we had no answers, so a decision was made to book an M.R.I. and guess what? The waiting list was only nine months long! He suggested that in the meantime I should lose some weight. Sure, one problem though. How am I supposed to do this when I'm not eating much anyway and am unable to exercise?!? Oh my God...please...I'm not able to take much more of this. Help me.
Now I needed a new doctor and I needed someone who was good, not some flake. A few of my friends had recommended one and upon my first visit I repeated (sighhh...again) my entire story to doctor #6. He promised that he would try, even if we missed it 50 times, he'd keep trying. Thank you, that's all I can ask of anyone.
During the next 6 months I went for x-rays, a bone scan, several tests that I asked for and got and saw several more specialists. At one time it was thought that maybe I had MS. I researched it and found that yes, some of the symptoms match, but not enough. After two years I finally broke down crying uncontrollably, you know, the real gut wrenching sobs. I had reached the end of my rope and I just couldn't take any more.
I was ready to commit suicide as that would be by far a better alternative to this hellish life I now lead. My new regular doctor (#6) was gone for the day but his replacement put me in the hospital for a week. The only treatment I got there was more pain killers than I had ever allowed myself and a test for MS by a different neurosurgeon (#7) who would not point me in another direction once he had determined that it wasn't MS and in fact, was rather rude about it too, most likely because he felt I had wasted his time. Gee, I would've gladly traded his wasted half hour for my wasted 2 years any day of the week. My regular doctor (#6) had recommended a book called "Taking Charge of your Back".
It had gentle exercises that I kept trying...mainly the stretching as I felt very stiff all the time. While I ate pain pills, an anti-depressant that I was put on to help ease off 20% of the pain and help me get to sleep at night and cried and prayed for an answer, I stretched and walked as much as I could stand. By now I was lucky if I could walk an entire city block. A nurse came in and saw me sitting up straight in bed, with my knees out, my feet bottoms together while I was gently pulling them in towards me. Because I was doing this, believe it or not, I was told that it was all in my head, I just needed to put some make up on and go shopping!!! Then she labeled me a drug seeker! All because I was still trying!!!
If I had found the strength to do so, I would've dragged all 350 pounds of her up to the roof of the hospital and thrown her off with the idea of doing a splatter test from 7 floors up! Given my state, I'm sure a plea of temporary sanity would've been more than adequate.
The next morning my doctor (#6) discharged me while telling me I wasn't getting anymore pain killers, I am a strong person, all I have to do is exercise and I'll be okay. He bought into that nurse's beliefs of me and yet she knew absolutely NOTHING about me! How dare she not only judge me, but dare to turn my doctor against me! I couldn't speak. All I could do was cry and cry for hours I was so insulted, hurt and angry as hell! I shoulda turfed that ignorant high and mighty braindead body right out of my window yesterday and if I had known she was going to do what she did, I would have! Here I was eating anywhere from 2 - 4 50mg tablets of Demerol WITH alcohol and it hardly even took the edge off of the pain, it was that bad and this is the help I got?!? I had to shop in a wheelchair, for God's sake! There has to be an answer! There just has to be...please God.
Once home again, I hit the internet trying to find out what was causing all this grief. I found an article on fibroids of the uterus. Everything matched! Whoohoo! I took that into my doctor #6 who was now regarding me as a totally lazy drug chugging lunatic but he felt it was a possibility and upon my insistence, he allowed me to get more testing and to see a gynecologist again. One thing lead to another and in January of 2000 I had an abdominal hysterectomy. There were multiple fibroids, a cyst on my right ovary and I had the grand daddy of them all...adenomyosis which is where the lining attaches itself directly to the wall of the uterus. Trust me, labour is way more fun and productive. Right off the bat there was an instant improvement and I was sure I had finally beat it. I could walk, stand and sit longer than before and the pain had been cut in half.
I was back at work doing small errands, not picking up anything over 10 pounds, going home when I got tired and not overdoing it. Even though I was being very careful, I never completely recovered. In fact, once again I started to get worse. The pain was less, but the numbness, tingling, burning and aching were returning slowly. Everything else stayed the same as before surgery.
Then exactly two weeks to the day I had a terrific accident. A car had stopped immediately in front of me while I was watching for what I thought was a pedestrian about to cross the road ahead of me. The roads were wet and when I looked straight ahead of me it was too late to do anything but hit the brakes. I had a meridian to my left and a car coming up on my right which left me no place to go except into the back of the car with the pickup I was driving. The seatbelt sat right across my incision but I had braced my legs against the floorboard and as a result I had escaped damage.
Then it was time for my M.R.I...somewhere around three weeks after my surgery. I almost cancelled it as I was sure I was only going to get better and somebody else would need it way more than I did, now, but my friends and family urged me to go anyway. I felt selfish and guilty. I knew what it was like to be suffering immensely and how the feelings of desperation swallow you up but then again, what if there WAS something else there? It was that "if" that made my decision.
As usual, I still continued to get worse. I even went through a colonoscopy in an effort to find out why this was happening. My doctor #6 went over those results, too, with me and I was told I would probably live forever, my tests were that good. I was even advised not to bother getting one again. When I asked why I still wasn't getting better, the answer was that sometimes it takes up to two years to totally recover from an abdominal hysterectomy. Ok, now why am I getting worse? No answer.
Then the M.R.I. results came back. They had found something but couldn't determine what it was so we needed to do it again. Maybe there's something after all? After the second sets of results came in, I was told that whatever it was had disappeared. Too bad my symptoms didn't disappear with it.
Back to square one again except now there was also a shortness of breath (got to quit smoking and find a way to get in shape), night sweats so bad I'd wake up soaked and have to change my sleepwear, my dreams were getting even stranger than they had ever been in the past and I experienced weird twitches on my face that I was sure people could see. My hands and feet were always cold and if I got cold to the bone, the pain would intensify and it would take hours to warm up and days for the pain to simmer down. Some days were better than others, with no rhyme or reason, and believe me, I was monitoring EVERY possible contributing factor. My balance seemed to be getting worse and I found myself getting dizzy to the point of blackout but not total collapse. (Ok, that's it, I got to quit smoking.)
Sometimes I would swell up and it would be most noticeable in my hands and from the knees down. (Maybe I consumed too much salt?) I was always tired and in a dreamlike state when left alone, but that's just the pain wearing me down and lack of sleep. I'd even bet that the ringing in my ears, sound sensitivity (especially to high pitched squealing children), the floaters and light sensitivity were all due to lack of sleep as well. Of course, that would also explain why I'd reverse letters and numbers...(I'm not dyslexic you know, just ask me), find myself at the wrong places and was feeling like my mood swings were very obvious to others around me. You'd get depressed and angry if you were a prisoner of your now size 16 non-functional body too! If I could just get some sleep, it'd all go away. I'd be able to think clearer. You know what else? Maybe this IS all just in my head. Is it possible that I'm insane? Many times I had asked myself that question and the answer that I kept thinking of was: If you're asking if you're insane, you're probably not.
During the 4 years of suffering an ever increasing, chronic pain and other annoying unexplained symptoms, I was chastised and ridiculed. I never gave up though. I was always searching for an answer and asking to have this test or that test done. Each negative result beat me down just a little more but still I wouldn't give up. After more negative tests a friend and I discussed the possibility of it being Fibromyalgia and after I researched it some, I thought it was worth pursuing. During that research I learned that it was very important to quit smoking as I was already oxygen deprived without it, and if I were to quit, the pain would lessen some. There was my motivation...time to just do it. Three months after I got the referral I was finally diagnosed as having Fibromyalgia by a rheumatologist even though I did not believe that 12 of the 18 pressure points had hurt upon a gentle poke. In fact, no where near but hey, he's the specialist so he must be right. Besides, at this point, any answer was better than no answer at all. Having been given this revelation at last, I continued to research Fibromyalgia.
I went to pain management meetings to see if other people felt the way I do and to learn what they were doing to cope with the pain, to function in life. It was here that I became aware of the fact that my memory was giving out as well and that my concentration and comprehensive skills were shot. In other words, I had brain fog and it wasn't until later that I realized to what extent. I also learned that my klutziness that I had always cracked jokes about was becoming more frequent. When others started to talk about the smaller symptoms and the fact that we have a tendency to minimize, rationalize and justify them, I thought they were talking about me! I became disgruntled with the idea that life would always be like this and there'd be no cure. It upset me that I fit right in...everything fit, except for one thing...a nagging question in the back of my mind. If nobody knows what causes Fibromyalgia, how do I know for sure that it's not something else? Throughout the last four years I had asked for all kinds of tests and I got them. But what if I didn't ask for the right ones? Gut instinct was telling me that somewhere I had missed the boat...others would call it denial.
After reading article after article on Fibromyalgia, I learned that Fibromyalgia should only be diagnosed after all other possibilities have been ruled out. Some of the things that can cause Fibromyalgia like symptoms that should be ruled out are: polymyalgia rheumatica which has an abnormal blood test, parvovirus B19, hidden cancers such as those of the prostrate or breast, low thyroid, side effects from a medication or illicit drug, rheumatoid arthritis, lupus, and ulcerative colitis. Infectious diseases such as hepatitis B or C, toxoplasmosis or the heliobacter that causes stomach ulcers, and Lyme disease. Crohn's disease is another one worth testing for, but I decided to leave that one till last as it's said to be most unpleasant.
Having learned this, I brought in a list of possibilities to my family doctor (#6). By now we had finally developed a good rapport. Together, side by side, we went through my chart and ruled out approximately 75% of my list. With the exception of Crohn's disease, we tested for the last 25% of my list. Sometime after that I got a call from the doctors office. My tests had come in and the doctor wanted to go over them with me. Everything was negative, negative, negative and my heart was sinking until we came to the Lyme disease...Elisa test: REACTIVE!!! "You have Lyme disease" he said to me. I have to tell you, on my doctor's wall there is a picture of a frog half way down a crane's throat, but he's still trying desperately to strangle the life out of the crane. Underneath it says: "Never EVER give up!!!!" All I could do is point at that sign as the tears streamed down my face. After four years of incredible suffering, finding myself unable to work full time during the last 3 - 1/2 of those, the emotional and psychological abuse I suffered from some of the medical professionals whose bedside manners were akin to Oscar the Grouch, I finally had an answer! One thing I will always be grateful for is my doctor's (#6) honesty as he told me right up front that he didn't know much about this disease. He advised me to see my rheumatologist for help with this. No problem. Thank you.
Feeling like I won the lottery, I took this result to my rheumatologist with expectations that he'd be happy for me and eager to start me on antibiotics. To my total dismay he said that females have a tendency to test falsely positive on the Elisa test and because my western blot tests both said negative, I did not have Lyme disease. "Besides, we do not have Lyme disease here." Once again, my heart sank, I KNEW I was right and yet at the same time I was enraged at how he could be so closed minded! "It's a good thing that I didn't give you anti-biotics." (You've got to be kidding me...you expect me to accept that this is how my four year fight is going to end? My God! You're trying to kill me!) It was obvious to me that he was wrong about all he was saying, because I took the time to research the basics of Lyme disease beforehand. Why hadn't he even considered this possibility when this should be one of his areas of expertise, especially with all of my symptoms and the proof I provided? Obviously, I would have to find a Lyme literate doctor. In the meantime, I knew from my research that I should start on 100mg of Doxycycline twice a day at the least. In tears, I called my regular doctor's office and got in almost immediately. He couldn't understand why I got the response I did from the rheumatologist and upon showing him why I should be on Doxycycline to start, he promptly wrote out a prescription for two months worth. Since then, I have found a terrific, Lyme literate doctor who was willing to pursue this with me, have acquired more positive testing and am undergoing treatment. There is no doubt now that I have Lyme disease...not Fibromyalgia. I WILL get better. I now understand myself better than I think I ever have and am able to forgive myself for my weight gain, my numerous dumb blonde moments (I'm blonde so I can say that) and for not trying as hard in the ways all the doctors told me to. I listened to my body, wasn't that what all of these doctors were supposed to do to? In fact, I tried harder in other ways than anybody else I know.
Having written this out in full for the very first time, I am amazed that I did not kill anyone including myself and that the entire team of medical professionals that I had encountered could not identify my problem. Can anyone else relate to this?
If you or someone you know has been diagnosed with Fibromyalgia and have gone on to test for other possibilities, I'd be interested in hearing from you with the idea of putting together information so we can all learn and eventually have accurate affordable testing and proper treatment.