Where to begin?
My husband and I have always joked that he's the woman in the relationship. He is the one who always wants to talk about feelings whereas I'm more likely to want to let things be and just get along with life. I don't do very well with the whole talking about my feelings thing, which is ironic, considering I interview an average of five people a week and I get them to tell me very personal things about themselves. This requires me to do a lot of talking. I can be a very empathetic person, or I can at least pretend to feel that way, in order to get someone to open up. At work, I play several different roles, depending on who I'm talking with, because I deal with so many different types of people. What do I do, you ask? Well, I've got a job many people just don't understand.
I'm a probation officer. Nope, not for kids. I cannot tolerate horrible children, and I can tolerate even less their parents who allow them to get away with all their crap. Nah, I am a probation officer for adults. But, I don't supervise offenders. I'm a presentence officer. That means I write reports for the court, summarizing the crime, the defendant's social and criminal histories, substance and mental health issues, etc. Then, I take all that information, and I make a recommendation to the judge. Should this person be rehabilitated in the community (via probation) or should this person go to prison?
I deal with strict time limits, attorneys, victims, criminals, legal messes, other law enforcement personnel, and a whole lot of other garbage I don't have time to explain. Is my job stressful? Yup. Do I love my job? Oh, so much. I love the people I work with, the constant shuffle of cases, the way it feels when someone I wrote about turns their life around with the help of a probation officer, etc.
I've been on the job since 2006. No problems. My department is extremely flexible. I can work at home when I want. It isn't an 8-5/9-5 job. I just need to work 40 hours a week - however that happens. My immediate supervisor is great. Everything rocks. So, what happened?
I have been very stressed out since August 2013, when our department got a new chief. People were fired (not without cause, we all later learned) and the office was generally a very uncomfortable place to be suddenly. For months, I was paranoid and nervous at work, something I had not ever experienced at this job. My home life was great. My relationship with my husband was good, and the kids were healthy and doing well in school. Only work had been causing stress. I was sleeping pretty good, but I've always been a very light sleeper. I don't know if I get quality sleep because for the last couple of years I have felt like my batteries aren't recharging, even if I don't wake at all during the night.
On February 1st of this year, I woke up at about 2 am. I was very uncomfortable all over. No serious pain I could put my finger on, just aching, uncomfortably sore muscles all over my body. I spent the weekend reviewing a file - very serious case that is rare in our county (murder, sexual assault committed by a 17-year-old during a home invasion on an elderly couple). I was stressed about this case because it had been a high profile trial and I was going to have to speak with the surviving victim in person (the husband had been killed, the wife had been sexually assaulted). I could hardly hold the police reports in my fingers due to the aching. I did not have a fever or any symptoms that indicated I had the flu. My husband was gone all day Saturday and most of the day Sunday. When he got home, I was hobbling around the house and he immediately asked what was wrong with me. I had not said anything to him on the phone when we had talked because I'm not generally a complainer. I just looked at him and said, "I have no idea." I tried explaining how I was feeling, but I kept feeling like I was going to cry out of frustration. I had talked to my mom about it earlier in the day. She had been a nurse and recommended that I start taking magnesium, since it is good for sore muscles, and use lavender lotion. She didn't have any other answers and I wasn't terribly concerned since it wasn't really pain, more of an overall soreness.
But on Monday, I was at work and my left arm suddenly began twitching uncontrollably. This has not happened again since. However, it did scare me into calling the doctor since the overall soreness had not stopped and I was beginning to experience other issues - skin sensitivity, burning on the palms of my hands, cramping in my fingers when I wrote for short periods of time, intense muscle aches after repetitive movement (stirring, sweeping). My symptoms apparently scared the appointment scheduler and she got me in the next day with an MD I had never seen before. There are three at my doctors office. He's the only one I'd never been to, but the other two were unavailable and she didn't want me to see one of the physician assistants.
By the next day, I was getting really worked up about my symptoms, particularly because I couldn't figure out what was going on. I'm a bit of a type-A person regarding some stuff. (Not, apparently the cleanliness of my house). Web MD wasn't really helping out. Having had shingles in the past, some of the symptoms seemed similar, except I didn't have a rash and the widespread pain was different; however, the nerve issues - skin burning, sensitivity - were similar, so I kept focusing on that and I wasn't having any luck. I wasn't getting answers fast enough and that only resulted in further upset to me. The more frustrated I felt, the more emotional I got. The more emotional I got, the more anxious I got - because I am not an emotional person. I am a very steady, stable, poker-face type of person. I, quite frankly, was scaring the crap out of myself.
So, I'm sitting in the doctor's office, trying to explain what I'm feeling. I've got a medical assistant staring at me like I'm crazy, and I say something stupid. I say, "This whole thing just makes me feel crazy." If she knew me, she would have realized I was trying to be funny in a really perverse way. I started to cry, again, out of frustration and probably fear (afraid of myself). She leaves (probably tells the doctor, "There's a live one in there,") and in he comes. He asks me to explains what's going on. And he hands me a box of tissue.
I truly despise this process. Why do we have to tell two separate people how we feel? And why is that first person always standing there, like they are waiting to see if we can tell the same story again? How many liars are they dealing with on a daily basis? Anyway, off track...
I explain, as best I can, again. And, again, I say, since it worked so well for the room the first time, "This whole thing just makes me feel crazy." He promptly tells me he believes I have anxiety and he is sure the pain and all the other symptoms are being caused by the anxiety. He sees the badge emblem on my shirt, references my stressful job, and prescribes Valium, to be taken at night to relax my muscles. I argue with him briefly, now crying because I am straight up pissed off and I know this has not been caused by anxiety. He says he'll send me for some blood work, just in case.
Like a good soldier, I take the Valium, which causes me to be dopey and in pain, just before I fall asleep. Oh, and BTW, I also take Topamax every night because I have chronic migraines, so I already get real sleepy at bedtime, so add Valium to that and I was falling asleep fast. Then, I wake up in pain. For three nights, I do this. On Friday, the blood results come back normal. I tell the med assistant I want to see the doctor again. I get in to see him on Monday. I was kind of amazed that he had such an open schedule, but maybe that's because he's kind of a jerk.
On Monday, the 10th, I saw the doctor again. I was prepared this time. I had written out my physical symptoms because by this time, every time I try to talk to anyone about how I feel, unless I was making a joke, I cried. I handed him a page and a half of detailed description - head to toe by this time - of my symptoms. None of which included muscle weakness or much pain in my legs (this is important for later). He reads it. He asks how the Valium is working. I explain that I am enjoying the dopey feeling, but I am falling asleep in pain and waking in pain. So, it really isn't and I'm not going to take it any more. He said he agreed that I shouldn't and he said that maybe I'm having a nerve problem. He said he wanted me to try Lyrica. Immediately I recalled commercials...fibromyalgia. You better believe I was checking that out on my phone while waiting for my very expensive prescription.
I have read the devastation people felt when they learned of their diagnosis. And I have read of people waiting years to be diagnosed. I can tell you that I have not felt much devastation. I felt relief that there was a possible answer. I don't care that it isn't a great one. Its an answer. It sucks, for sure. But, guess what I know? It is manageable. And it will not kill me.
He said he wanted me to go have another test for vitamin D deficiency. The doctor said he would send me to a neurologist who specialized in pain management. Locally, (small town) we don't have a ton of specialists. It took three weeks to get into that office. And only 20 minutes in his office for him to say, "I think you have fibromyalgia." He referred me to a rheumatologist in Tucson. I've got another month before I go see her.
A couple of days after my vitamin D test, the doctor's office called. The medical assistant said, "The doctor wanted me to tell you that you are deficient, which would explain the muscle weakness you've been experiencing in your legs. He called in a prescription, so you can go pick that up. You should see an improvement in a few weeks." I told her, "I never told the doctor I had muscle weakness in my legs." She said, "Oh, hmm. Oh well, that's what his notes say." I wanted to punch him. I did pick up the prescription and also copies of my blood work, which shows I have lower than normal levels of vitamin D in my blood, but not to the point of deficiency, which is laid out in the actual blood analysis. Again, violence came to mind.
Here are my symptoms now from most troublesome to least:
burning pain - in mouth, skin (palms, random areas on arms, face)
muscle pain after repetitive activity - arms, hands
tingling in feet/hands
exhaustion
anxiety (not depression)
tender spots - neck, hips, buttocks, elbows
Problems:
I started 150 mg Lyrica/day on 02/10. Most of my pain has settled down to a barely noticeable level. However, when I have my monthly menstrual cycle, I have a flare, beginning about the 2nd day of the cycle, and not ending until about a week and a half later. Also, I have discovered loud, unexpected noises will cause a flare that lasts approximately 45 minutes. At the time of the startle, I experience a very chemical, uncomfortable flooding feeling in my arms (sort of like an adrenaline rush feeling, but in my arms) and then my mouth fills with an acidic/metallic taste, and my teeth ache. Anyone else have this? I also experience this in waves during my menstrual cycle. This causes a loss of appetite, due to the taste and the way it changes the flavor of the food. After the flooding feeling, I have intense muscle aches in my arms and hands.
Any stressful situation - an argument with my husband, for example (which is pretty rare but has happened one time since this all started) - will cause a flare of pain that can last for hours. I do not necessarily experience the flooding sensation, however, more just an overall aching.
Any solutions to the above would be helpful!
How I deal:
In a way most people wouldn't. I cannot tolerate whining. I don't like to complain. I'm not a drill sergeant. I don't expect others to be like me. I think I'm weird. But, I don't think I should be told I can't respond to fibromyalgia the way I have responded to other obstacles in my life. And, yes, I have had other obstacles. Very painful ones. My daughter was born at 29-weeks when I suddenly became eclamptic. Not pre-eclamptic. Full-blown, liver-swelling, seizure-having, I don't remember her birth, half the flight in the helicopter, or the first day and a half of her life. We all survived. My son was born by c-section 3 1/2 years later. The C-sections for my kids never bothered me. I recovered quickly. I had problems throughout my pregnancy with my son due to a clogged up gallbladder, but I worked through it and felt better after his birth. I ended up having it taken out when I got very ill a couple of months later, and spent a week in the hospital with pancreatitis. That is not fun. If you know anyone who has had pancreatitis, or have ever thrown up simply due to pain, you know what I'm talking about. Fast forward a couple years and I experienced the worst pain I have ever felt in my life. Ever. More vomiting from pain. A couple of weeks later, due to no doctors being able to figure out the problem and me being unwilling to go to the ER since I was able to get into my primary care and gyno so easily, I had exploratory surgery, which revealed the cause of my severe abdominal pain: a twisted ovary. I saw pictures the doctor took of my insides that I never want to see again - I can't unsee them - and it was gross. I was diagnosed with chronic migraines after daily headaches started in 2010. Two separate times, my daily medication unexpectedly stopped working and I was literally stuck with a headache during all of my waking hours for more than 30 days before I finally got relief through a medication switch. And throughout the headaches, guess what I did? I worked. By choice.
Throughout all of the above, I took care of my pain by distracting myself with other things - work, kids, writing a book (I didn't finish it, so don't ask), etc. Never once have I found it useful to lay around and complain. Never have I found it helps to whine.
I do believe it helps me to educate myself (I just finished the Cleveland Clinic's Guide to Fibromyalgia) and gain real support. I also think keeping a positive attitude is important. However, I have a strange way of being positive. I like to make fun of myself. I would have made a good stand-up comedian if I wasn't so frightened of standing up in front of others. I caught one of our court clerks staring at me the other day, while I absently cradled my right arm (which hurts more than the other). I asked her if she was wondering what I was feeling right that moment. She looked startled, but interested, so I told her, "The top of my big toe is kind of burning/tingling a bit, I have spot just under the sleeve of my shirt on my left arm that is annoying the crap out of me, but will probably be fine in a few minutes. The tip of my tongue hurts, yet feels numb, too. And by good gosh, my butt hurts from sitting for so long." We both laughed and went back to work, where I didn't even notice all of the above.
Last week was bad, as far as pain went. But only in the evenings and on the weekend. You know why? That's when my mind wasn't busy with work. So, when someone says that I won't be able to keep up the work, or I can't possibly expect to stay in this job with a problem like fibromyalgia, I say, "I guess we'll just see about that."
I've got a 6-year-old son and a 10-year-old daughter. I'm not going to spend their childhoods lying around, crying. That's ridiculous and self-serving. I'm going to get up every morning and thank the good Lord above for giving me the life that He has. I'm one of the lucky ones.
One more thing. This does not hurt as bad as a twisted ovary. Plus, I'm not bleeding like a stuck pig, so that's a darn good thing, too. IT COULD BE WORSE.