Monday, May 16, 2011

We Interrupt This Program...

Who would have thought that it would take almost eight months to get another blog entry posted? Certainly not me! Unfortunately, the trials of life came at me full force when I least expected, and I now find myself at a point where I am unable to move forward for the time being.

Things started to get difficult in September, but I had no idea that things were building to a crescendo for me at that time. My cat, whom I mentioned in my post “Overextending,” started to lose weight rapidly, and was having accidents all over the house, especially in my husband’s and my room, where he preferred to stay at because of our dog. Jobie never liked RJ from the day she came into the house, and he had decided then that he preferred to camp out in the bedroom rather than deal with her. He started to show signs of his medical problem worsening, so we started taking him to the vet more frequently.

Just a month after my cat’s ordeal began, we noticed that two adorable kittens had decided to take up residence in our garage, using it for shelter from the elements. One was very desirous of human attention, although she was afraid to come close enough to be touched at first, while the other preferred to keep her distance. Our next door neighbors took pity on them and began to feed them, but all the other neighborhood cats started “sharing” their food. We had been considering feeding them as well, but they beat us to it. We started helping with their feeding when we saw that the kittens were not getting enough from the “community trough,” and put some food in the garage for them. Unfortunately, the neighborhood cats found their way into the garage with the kittens, and of course helped themselves to that food as well.

Lovey, around the time she first appeared in our garage

We started calling them Lovey and Spooks, and started trying to coax them to interact more with us when we left the house or came home. We thought that it would be easier to take care of their basic needs if they were at least socialized enough to let people hold them. Neither we, nor our neighbors were willing at that time to claim ownership of either kitten, in our case because we had so much on our hands with Jobie.

He was declining rapidly. It was apparent by December that he would not be with us for much longer. I could not bear to lose him, and did everything I could to keep him alive. I was hoping he would make it through just one more Christmas, but he passed away on December 18th. We weren’t able to bury him until two weeks later because of the heavy rains we were having, and we had to get the hole cleared of water so that we could put his little makeshift casket in it.

I took some time to mourn the loss of the cat I had always considered my “furry child,” and barely had time to breathe when my husband was told by his doctor that he should have a stent put in his arm to prepare for dialysis (he is not diabetic, but we will leave his story for some other time). He was scheduled for surgery at the start of the second week of February, and had to go in a second time a week later to clear clots out of the tube.

As he was recovering from his surgery, we noticed that Spooks was looking a bit round in the belly, and we knew something was going to be happening soon. It was time to find a way to get both kittens off the street and away from the toms, before Lovey ended up like her sister, if she wasn’t already. We discussed arrangements for the two cats with our neighbors, agreeing no one would be considered either cat’s owners, and that we would share the expenses of getting them taken care of before they populated the entire neighborhood. It was decided that Lovey would go in first, to make sure she wasn’t in a family way like her sister, and start her on the road to a neutered, healthy life.

Once at the vet, we were advised that both kittens had to come indoors until after Spooks had her kittens, and Lovey had to go on an antibiotic for an infection before she could be spayed. Since we knew this meant we would get attached to Lovey and therefore want to keep her, we decided we may as well just consider her ours now and adopt her into the family. This posed a problem with Spooks however, because she was barely socialized enough to let us touch her while she was eating. Even that was at a very extended arm’s length, because she just did not trust humans enough for anything else yet.

We were still trying to figure out how to get Spooks into our neighbor’s house for the duration of her pregnancy and nursing period, when my husband and I stopped for lunch near one of the pet stores in the area. It dawned on me then, that I hadn’t checked with any rescues to see if they could help. We stopped at the one running adoptions in the pet store nearby, and they said they’d be more than happy to take Spooks. All we had to do was get her to the pet store by 3. We finished our errands and went home to find Spooks in the garage, eating. After obtaining a few battle scars (me, not the hubby), we had her in a cat carrier and on her way to the pet store, yowling the entire trip.

Just after this, at the beginning of March, we finished giving Lovey her antibiotic, then discovered she had worms. Unfortunately, this meant every animal in the house needed worming medicine, so we had to take the cats who hadn’t seen the vet in a while to be examined, and that took care of the vet budget for the month. It was about the middle of March when we noticed that Lovey was looking a little round in the belly. Apparently she had only just gotten pregnant when we took her in. So, Spooks gave birth on March 23rd while in foster care, to four kittens. Lovey gave birth here, on April 18th, but only had two kittens. They will be ready for adoption around June 13th.

Lovey with her kittens, Bullet and Ditto.

So, life has been rather busy, mostly with animals. There have been other things going on as well, but nothing quite as involved as all I’ve posted here. I haven’t been able to do as much research on fibromyalgia as I have wanted to, but hopefully my next blog post will be more about what I have learned so far, rather than what is keeping me from staying on track with this.

Saturday, September 25, 2010

I Think I Tripped Over A Rabbit Hole

I have had a lot of trouble with the Fibromyalgia lately, so I decided to take my supervisor's advice and ask my doctor to fill out paperwork allowing me to take my sick days under FMLA (Family Medical Leave Act). This is a federal law that allows you to take up to 12 consecutive weeks off, or multiple days throughout the year, to recover from or manage an illness. I saw the doctor this past Monday, and was excited to learn that a medication commonly used to treat depression had recently been approved by the FDA to treat FM. He said that, among other things, it was found to have a positive effect on the peripheral nervous system receptors, which is suspected to be part of the problem for FM sufferers. I was very excited to hear this, and thought to myself that I might be able to get a part of my life back that I had recently lost to this condition. He sent a prescription order to the pharmacy and had me leave the FMLA forms with his medical assistant. I asked my husband to pick it up for me the next day, and took my first pill that evening.

At this point, I was dealing with a new pain which I had thought was a migraine, but my prescription migraine medicine hadn't affected it at all, even after taking the maximum dosage allowed. I realized how good this medicine was for FM, when just 30 minutes after taking it, the pain I was experiencing was gone! I could not believe how quickly and thoroughly it had resolved my pain.

I should point out that, based on the way I had reacted to another medication last year, I was cautious and had read about the side effects online before taking it, but when I was reading the insert that came with it (after taking my first dose), I noticed there were precautions for those who were also taking migraine medication. I got back online to review drug interactions, and became concerned that my particular medicine could interact in such a way as to cause a severe adverse reaction that could lead to death, if the signs were overlooked and counter measures not taken promptly. I read what it said to watch for, and started making mental notes of everything unusual.

The first day I took it, I developed a mild nausea, and noticed that I felt as though I was dreaming at some points, for brief periods. I presume that this was in part because the medication is in a time-release capsule form, and every time a little more of the medication went into my system, I would feel my body respond to it. The next morning, I decided to wait until I was at work to take it, so that it would not affect my driving ability, and that I would take the second dose I was supposed to take when I got home. While at work, I noticed that there were times where I felt that dreamy feeling, as well as times when I felt I couldn't concentrate or maintain focus. The nausea, however, had remained constant from the first dose. I also had occasional trouble following other people's lines of thought. When I got home and took my third dose, all these symptoms were still present, and I experienced my first serious side effect from the medication.

That evening, I was typing a comment to someone on my Facebook page, when suddenly, my left arm developed a mind of its own. Bap!Bap!Bap! went my left hand on the keyboard. I thought, of course, "this isn't good." I had read that tremors and involuntary movements were side effects of the medication, so I decided I should probably talk to my doctor in the morning about this. I continued my typing, and it happened again. Later, after I had given myself a break, I was typing something else, and it happened a third time. By now I was completely annoyed with my arm and decided to hang up the keyboard for the night.

When I got up Thursday, I didn't really feel well. In fact, I didn't really feel like myself, but I went into the kitchen to get ready for my day. I noticed that I felt a bit weak, and as if I had run a marathon and gotten winded. I also noticed a bit of a flutter, but thought nothing of it at the time. I tried to push through these feelings, and started making my breakfast and lunch for the day. I got my oatmeal in a bowl and my teabag in a cup, then proceeded to start making my sandwich. I got the bread out and cut, and the lettuce rinsed and dried. Then I had to sit down. For 10 minutes. I got up and tried again, and got the meat and cheese out, then I had to sit down again. I had almost finished making my sandwich, and I had the same feeling come over me, and had to sit down one more time. I felt my breath was gone, and as though I was gasping for air. That's when I knew it was time to go to the emergency room.

I called my husband, who was away since Wednesday visiting his Mom, after waking my son to tell him to get ready to take me to the hospital. I started to get dressed to go, and that's when I felt my very first, ever so slight, twinge of pain in my chest. "This is really not good," I thought. After my son helped me to take care of our cats and our dog, we got in the car and headed to the emergency room. Once there, I went up to the window and explained my symptoms and added, "I think I'm having a bad reaction to my new medicine." The young man at the window poo-pooed the idea, saying it would have happened on the day I first started taking it, if it were that. I thought, "Fine, Mr. Know-it-all-who-isn't-even-a-doctor, I'll just list my symptoms on the form and let you guys figure it out."

After returning the paperwork, I was taken into the triage area, where the nurse there asked me, "What do you think is going on? You look fine to me." I shot her a look and again explained my symptoms. She went through all the normal questions, did I smoke or drink etc., and wrote down my responses. She then turned over the paperwork to another nurse and continued to go over my symptoms and history, asking me what else I had besides depression, since my medication was for depression. Another look, and I explained, politely, that I have FM and that the doctor had prescribed this medication for it, based on the FDA approval. Then she asks again, do I smoke or drink. I look at her. The guy who was helping looks at her with a "gotcha" grin on his face, and says quietly, "No, she doesn't. It's right here where you wrote it."

After eating a bit of humble pie, Nurse Attitude takes my vitals, then preps me for an EKG. A tech comes in and administers the test, then the male nurse points me to some chairs where I need to wait for blood draw. After that, I was led to the bed they were assigning me for the moment. A few more questions, a blood pressure cuff and a pulse rate sensor, then the doctor finally comes in and interviews me for more information. He told me he didn't find anything medically to base my symptoms on except for the new medicine, but was going to have a chest x-ray done and run some other tests to be sure. When all was said and done, that was the final diagnosis - medication side effects. I was sent home with more papers and instructions, and told only to go to work if I felt up to it. I called my doctor once I got home and left a message, and he was supposed to call me back that evening, but here we are into the weekend and he still has not called.

I was able to work Friday, but still had some difficulty with shortness of breath and weakness, so I kept my movements slow and relaxed to avoid additional problems. I haven't taken any of the new medicine since Wednesday night, but it was still working its way out of my system Friday. I am not feeling any of the symptoms now, so I'm certain, since today is the day it should be fully washed out of my system, that everything I experienced starting on Tuesday was a direct result of the medication, and I have no plans to take any more of it. I also plan to call my doctor on Monday to find out why he hasn't called me back to discuss things like trying a different medicine.

Yesterday, I was going over the written instructions that the hospital gave me about my aftercare, and found an interesting notation: "Continue to take all medication." Yeah, right.

Saturday, September 18, 2010

Bumpy Ride

I need to give some background here, for those who don't read my Facebook status posts.

My son is 26 years old. His only exercise is walking the grounds where he works security. He weighs over 300 lbs, and several weeks ago had an accident at work that required treatment. It was discovered then that he had life-threateningly high blood pressure. He was prescribed medication and told he would have to get treated by a regular doctor to continue the medicine, but since he has no insurance, he wanted to try food supplements to keep his blood pressure down. We picked up what his friend had recommended, and I split the cost with him (he does have to pay for some of what he uses around here). Even though it was in the house, he admitted he wasn't using it as directed.

One week ago today, my husband and I went to do some shopping together, after my son complained of not feeling well in the morning. He made it sound like it was nothing serious, just a bit of stomach discomfort he was having. We got quite a bit done while we were out. When we came home, my son revealed he was feeling a heaviness in his chest, and that it occasionally traveled up into his throat. My husband's family has dealt with heart disease on his father's side, so we knew these were symptoms of a heart attack. I offered to take him to the hospital, but he said that he didn't think it was necessary. My husband told him he was going, like it or not.

Since my husband had to leave for work, I was obviously going to be the "ambulance driver." I took him down, and as soon as they heard the words "chest pain," the staff got my son prepped for an EKG. After that, he was then placed in a bed in the ER. I was with him the entire 5 hours. As it turns out, it was not his heart, but his pressure had again become too high because he had done nothing for it in 5 days. The doctor prescribed the medication he had been given originally, and strongly urged him to follow up with a clinic. He also made other recommendations, which my son has taken to heart.

The next day, Sunday, I really wanted to go to church, as health issues had kept us home the prior two weeks. Fatigued from the previous day's events, we attended services and went straight home. I sat like a lump on the sofa, then laid down there and tried to stay awake long enough to say goodbye to my husband when he left for work, which I was barely able to do. The last thing I remembered was the dog licking my bare toes and laying down in front of the couch. I did not wake up again until almost 4pm. The rest of the evening I couldn't seem to do anything, and felt like crying until I went to bed for the night.

I was supposed to go to a game with friends after work Monday, but the fatigue from the weekend just stayed with me all day, so I had to call and cancel at the last minute. I even worried about how well I would do on Wednesday, because we had Bible study and I didn't know if my energy would last the night, but I made it there and home okay. Thursday, I had promised to work with my son on his walking per the doctor's recommendation and a friend's suggestion to help me with my own condition, so even though I was tired, we walked twice around our block, a total of 30 minutes.

Friday morning came, and my head and neck were giving me serious pain. I took some medication and laid back down, hoping to be able to go in late to work. By the time it was time to call in, I suspected I wasn't going to make it. I also felt the fatigue affecting my body as well. I finally ended up taking a larger dose of medicine than I like to take, only to end up feeling doped up, as I expected it would do. I wasn't feeling the pain anymore, but now I was sleepy and fatigued.

This morning, I woke up feeling somewhat okay, but as the morning has worn on, I have felt my pain returning in my neck, which means I'll have to take another doping dose of my medicine in order to function halfway. I have also felt some residual fatigue, so I know I won't be able to go walking this evening with my son. I'm hoping to go with him tomorrow, unless he walks by himself tonight, which means he and I will walk on Monday.

It seems I am rather cranky today, along with the pain and fatigue, and can't help feeling like crying again. It's almost as if I'm going through this cyclically. I just want this to stop so that I can go back to being my positive self, not this "woe-is-me" person I seem to be becoming. I am also upset at the thought that much of my blog posts have been somewhat depressing, and not seeming to me to help much with education on my condition, which was part of my original hope. In fact, some of what I wanted to study about fibromyalgia remains unread, as I have been dealing with life and not finding much brain power available for study, especially this past week.

If only Calgon really could take me away. Even if "he" could, I don't know that it would help much.

Sunday, August 8, 2010


The end of this week has been a little busy for me. It's a long story, which many of my readers already know, but a pit bull mix pup found its way into our garage, and now we're trying to find someone (home or a shelter) to rescue her from the pound before she meets their time line max for holding pits. I am sure, because of her breed, that she doesn't have as much time with them as other dogs, so I've been doing what I can to reach out to the different rescues. But that's only part of what this is about. I mention it because it is part of what I was doing yesterday.

We had quite a list of things to do, and I was feeling really good, so I was up early to get started. After breakfast, I emptied the dish machine, reloaded, and cleaned the sink. I have an older cat, a male Maine Coon named Jobie, who needs to be bathed regularly because of his medical problems, and I needed to get him cleaned up before taking him in for his regularly scheduled lab work. He got his bath in the freshly cleaned sink, which I of course, cleaned again when we were finished.

My husband and I then headed off to the grocery store for a few things, came home, put them up, then took the cat to the vet. We waited to hear about his thyroid levels, which turned out to be on the high end of normal. We took him home, then headed out for lunch and to shop for a Bunco gift for Monday night. When we got home, I wrapped the gift and pulled meat out to defrost for cooking this evening. That may have to wait for my husband to do tomorrow, because it's still not defrosted.

I spent some time online trying to contact different rescues about the dog I mentioned above, even speaking with one of them over the phone at length. I also spent quite a bit of time on the phone with our vet, when she called to discuss the results of the lab work and the future course of treatment for this cat, as well as how to discourage and eliminate some bad behaviors he has developed. By now it was dinner time, and I was a bit tired, so my husband went out and picked up dinner from a place we like to go when we are in the mood to get out of the house. Since I've been on a diet for some time, we made sure I had a healthy, low calorie selection. It was filling enough that I put some away to eat today. At the end of the evening, I went to bed feeling good and planning to take care of some things today, that I just didn't have time for yesterday.

Today, the alarm went off at 6 am, as usual to help me get up and ready for church. I was having trouble waking up, so I allowed myself another 30 minutes to try to sleep off the tired, and added another 30 when I realized that church service was scheduled to be later than normal. When my timer went off, I still was having trouble waking up, and fell asleep again as I was trying to get up! Twenty five minutes later, I woke up on my own, but still felt very fatigued. I forced myself to get up, and went into the kitchen to make breakfast. I barely got my own breakfast together, and was cleaning up from eating it, when my husband came in the kitchen, and announced he didn't want to go to church because he was still recovering from some medical problems of his own that he had to deal with the day before. Have I mentioned that he has Crohn's Disease and is in stage 5 renal failure from lifelong kidney problems?

I was doubting my ability to get ready in time anyway, so he got no argument from me. At least I was able to do my daily bible reading.

I went to the computer to work on more contacts for the dog, but just couldn't seem to get started. I just sort of stared at the list of web addresses in front of me, and realized I couldn't think straight. Instead, I started playing a game to try to get the cobwebs out of my brain and get ready to work. Not happening, even after an hour. I realized it was because I was still tired, so I went to take a nap. Yes, more sleep. I woke up again about an hour and a half later, got up and shook off the cobwebs slowly. By then my husband had got ready for work, and left for his day at 1pm. I realized later that it had been 5 hours since I had eaten, so I warmed up my leftovers and ate. It is now after 2pm, and nothing I had planned to do for today has been done.

Some of you may think I'm wasting time or procrastinating by taking the time to write about this, but I felt it would be important to share just how the fatigue, which I believe is from the fibromyalgia, can hit someone suffering from the condition. It's not that I don't want to do more today, it's that I can't seem to get myself going to do the things I want to do. It's hard to describe just how this feeling stops you from doing even those things considered to be simple tasks. Writing is not normally a difficult thing for me, so I can struggle with the feeling long enough to get a single blog post done.

And now, I'm off to take some medicine, as my neck, left shoulder and elbow are starting to complain at me, and I want to be ready for a phone call I'm expecting this afternoon.

Thursday, July 29, 2010

Migraine, Day Three. Or Is It Four?

Tuesday morning this week, I woke up with a migraine. Not a bad one, but it was definitely migraine pain. I decided to go to work anyway, because I had a migraine the previous Tuesday, and I don't like to take more than one day off per month for these kinds of things. I work in an office where office politics go wrong a lot, and this Tuesday was one of those kind of days. I don't normally pay attention to it, but when a supervisor confronted me and a coworker of mine, who were minding our own business and not doing anything wrong, I got a bit upset and stewed. By the end of the day, I was struggling to finish the day.

After work, I had to pick up dinner since nothing was defrosted in the house. By the time I got home, I was so glad for the day to be over! I took my prescription medicine, ate dinner, spoke briefly with family over the internet and went to bed early. When I have a bad migraine, I usually sleep with a ski cap on my head because my head actually feels cold, and ice on my neck to numb the pain so that I can sleep. This is because the medicine sometimes doesn't do a good enough job. When my migraine is really bad, I sleep on the sofa because I can't get comfortable in the bed. This is how I slept that night.

Wednesday came, and while now the pain seemed to be gone, I was really groggy from the medicine. I struggled with myself and went to work anyway, and once the medicine wore off, the pain was back. I kept debating whether I should just go home and rest, but I kept wanting to get "one more claim" paid, because that's one more person with money in their pocket. I stayed the day, and while I masked it with a smile, I was absolutely miserable at quitting time. My husband is home in the evenings on Wednesdays and Thursdays, so he was going to pick up dinner, but I had to go get gas in my car. I sped home from there, because I just wanted to get to bed. I was able to eat, so I had dinner after changing my clothes. I again chatted with family about some things, and went to bed (or should I say, sofa) early again, after taking another pill.

Thursday, wee hours of the morning. The ice pack had melted and the medicine worn off. I tossed and turned, finally got comfortable and fell asleep. When my alarm went off, the pain was definitely back, and I decided I'd had it. I called one of my carpool buddies, left her a message and went back to sleep. I called work once the office opened, and reported in as sick. The plan: Call the chiropractor and make an appointment, in the hopes that maybe it's because something moved in my neck again.

I managed to get to the chiropractor in the late afternoon, and he adjusted me thoroughly, and ordered traction table with ice for my neck. In speaking with him about what had gone on for me in the last two weeks, he reassured me that it was primarily not the FM that had caused so much ongoing pain. He agreed it was a factor, but stressed that it was more likely my pain started because the tissues in my neck had become inflamed from the weird, hot-then-cold-then-hot weather we had for the last month. I felt so much better after my treatment that, with doctor's approval, I did all that was planned for the evening, including prepping a salad for an office luncheon, going to dinner with friends and playing miniature golf with the group afterward.

I was refreshed and enjoying the freedom from pain. Sadly, I woke with the alarm and found myself in pain again. I realized that I had been laying on my left side, and it seemed that some of the pain dissipated slightly when I rolled to the right. It dawned on me then, that I am aggravating my problem whenever I sleep on the left side. I am now determined to stay off that side, no matter what. In the meantime, I knew I would have to take a pill to be able to get to work.

My husband had picked up a refill of my migraine medicine, and this time the pharmacy had filled with the generic version of the medicine. It had no coating, and the moment it hit my mouth, I was enveloped in the bitter taste of a rapidly dissolving pill. I hadn't even had time to get the glass of water to my lips before there was nothing but bitter grains throughout my mouth. BLECH! GAH! EW! While this was an ordeal, I did find a positive side; the pain had melted away within a matter of minutes, almost as quickly as the pill had dissolved in my mouth. Then there was the side effect. I felt like I was high. I tried to cover it up, and foolishly chose to take my turn driving for the carpool, in an effort to hide the fact that I was having an unpleasant experience. I did admit to one person that I felt overmedicated, which I had admitted to before without anyone batting an eyebrow, but she immediately asked me if I was okay to drive. I tried to convey confidence, but agreed to pull over if my driving skills proved to be less than adequate, and let her take the wheel. Fortunately, I got us to work safely.

My feeling of intoxication wore off as the day progressed, and now I am sitting somewhat comfortably in front of my computer, documenting this latest experience to share with all who care to read. I am feeling some pain, but it's not at a level that would escalate into something worse, or require me to take any medicine. I am grateful to be where I am at, and I hope this is the worst I feel for the rest of the weekend. Here's to not having a "Day Five."

P.S. - I started this blog on Thursday, expecting to have it finished the same day. Because of the way Blogger works, the date is Thursday's date, because I drafted it in the blogger editor. However, today is actually Friday, the 30th.

Friday, July 16, 2010

From Ignorance to Understanding

It has been a while since my last blog entry, so I thought it was time to touch base again. I've decided to start this off with the history of my "evolution of understanding" of FM.

When I first heard, in the course of my work, there was a disorder by the name fibromyalgia, I had no clue about what it was or how severe it could be. By the sound of the name, I concluded it probably had something to do with muscle or nerve fibers, and some form of pain. I did not know what the source or cause of the pain could be, or what body parts were affected.

Any time we have doctors providing a new diagnosis that we are not familiar with and cannot get info about through our own resources, we generally tend to send people to doctors our agency pays for, to get a second opinion and get more information about the disease. When that was the case for this disorder, I sent a few patients to doctors for additional information. In some cases, the doctors
felt there was no reason the patient could not work, while in others, the doctors felt the patient needed much more time off and should be evaluated for what they believed would be a more definitive diagnosis. I believe they were looking for traditional diagnoses like lupus, osteoarthritis, rheumatoid arthritis, or something similar to these, since so many symptoms of fibromyalgia mimic these conditions.

In one instance, I happened to speak with one of the doctors we use. He described fibromyalgia as, in his opinion, a psychosomatic "designer diagnosis" in which the patient would benefit much more from psychiatric care than treatment with an internist. At the time, not knowing much at all about the disorder, I accepted his evaluation almost as gospel, and began viewing claims with this diagnosis with a more critical eye. I wanted to send these patients to psychiatric evaluations, based on what that doctor told me, but the rules state we can only send them to the type of doctor that would normally treat the defined illness or injury, which was always either an internist or rheumatologist.

Not realizing I was already showing signs of this very illness, I began to believe that these patients were either faking or manifesting symptoms due to some deep-seeded emotional issues they weren't dealing with. It took several years for this opinion to change, through training and resource updates, along with what I learned through personal interviews
with affected patients. I eventually came to realize how seriously this condition affects people, and noted (as found in my research once I was diagnosed) that it affects women more often than men.

After realizing that FM was a definite, often debilitating, genuine diagnosis, but before knowing I had it, I met a lady at the church we attended who has it. I was cautioned not to hug her too tight, as she is often in a lot of pain. I later met another woman with it, when I began participating in a monthly game with some ladies in the community. Then a woman transferred to our office who had been diagnosed with it as well, and I started to see the daily struggles of a fibromyalgia sufferer. I really felt for her, because I could see her struggling to continue to work a regular schedule, but often being struck down either by the associated depression or just debilitating pain that would not allow her to continue to work during the course of a day. She became one of my primary resources when I began to research after my initial diagnosis, and shared with me that yet another woman I already knew, who worked as a manager in another office, also has FM. I have been amazed at the number of people I am acquainted with or know, who have this condition besides myself.

Me and my coworker/co-sufferer.

In speaking with my coworker, I came to find that her path to understanding the disorder was not much different than my own. In fact, we joked about "payback," finding humor in the somberness of our condition. She shared with me some of the odd symptoms she had had early on, and how, like me, she didn't think her symptoms lined up well enough for it to be FM, but later found they were just early signs of the disease, which now is quite evident to her. We have in common that we denied having this condition initially, and later had to face facts about it being a part of our lives. She has even shared with me a bit of the history of her going through the rule-out phase, which was a bit different than mine because she gets her care through a medical group, while my care is through a private practice doctor. Each has a different method of doing what results in the same thing; evaluation, diagnosis, treatment.

I have also spoken with the lady in the group I participate with for a monthly get-together, in which we play a game (Bunco, sort of like Yahtzee but not). She has shared of some others she knows with FM and are in much worse shape than we are, and the stories she shared quite honestly, have made me very nervous. I have tried to speak with my church friend about it, but she seems to be reluctant, most likely because many of us find ourselves becoming unreasonably depressed when the realization comes across us about how much worse things could get or have become. To explain; one of the clients who I have encountered recently, appears to be close to the point of being permanently disabled from working due to the severity of her pain. She has to take narcotics to dull the pain, and is still so miserable it is hard for her to get out of bed. It is a horrifying thought to think that I might end up in just as much pain, if the symptoms progress.

Finally, I am realizing how widespread FM is, because even since becoming a member of a social networking site, I have encountered several women who have it, at varying degrees. I have been hoping that I would meet more through my blog, but so far no one has come forward to comment about their own condition and share how it has affected them.

Many of my posts to now have been going over things from a historical perspective, to explain how I came to determine my topic for a blog of any kind
and why I believe I should write this blog. From this point on, I expect my posts to be about what I experience as a result of having this, including symptoms, nuggets of wisdom through self-education, and interaction with others in the FM community. If you feel you have something to contribute to discussions on this topic, or even simple words of encouragement, by all means please leave a comment below. Feedback is most definitely welcome!

Friday, May 7, 2010

Case History(?)

I decided it would be a good idea to provide a list of the different complaints I have had throughout the years, that are or could be symptoms associated with fibromyalgia.

Over the years, from childhood to now, I have been involved in a few auto collisions (obviously, not always as the driver). In those, there have been several times where my head, neck and back have been injured. Of course as a child and a youth, I had my share of other bumps and thumps and wounds, but what is pertinent to my case history is that there was at least one trauma in my life that caused a serious injury. I mention this because most people with fibromyalgia have had at least one serious physical trauma to their bodies before the syndrome began to manifest.

As a teen, I became plagued with a chronic fatigue and recurrence of illnesses similar to the flu, in one instance having a flu virus that was serious enough to keep me home from school the entire week. Before I reached my 18th birthday, I was being tested for anemia, which was the only explanation my doctor had for my lack of energy and developing stomach problems. I was diagnosed with a nervous stomach, a precursor to an ulcer, and advised to avoid any food or drink that would trigger a flare up. It took some time for me to realize that coffee was a major trigger, because it took several minutes after consumption to have a flare.

When I hit puberty, I wished I hadn't, because it hit back pretty hard. I would have cramps that would double me over in pain early on, and they never seemed to ease up unless I had a heating pad over my abdomen and was loaded up on aspirin, acetaminophen or ibuprofen. When I started working, there were days when it was so painful I would have to call in sick.

In high school, I developed a strange pain in my jaw that would stop me in my tracks whenever it came on me. The best way I have to describe it is that it feels like someone taking the sharpest needle they can find, and pushing it through the bend in my lower jaw, trying to come up from the lower, outside portion into the center of the top of the bend. I was told when my son was young that it was temporal mandibular joint syndrome (TMJ). I recently had a major flare of attacks that went on for weeks, having several every day that would last for a few minutes at each onset. It also seems to come on me more when I have incidents of jaw popping (the joint popping in and out of place), especially if my muscles are tense and I need to open the jaw a bit wider than the muscles want to let it.

I also had trouble from my youth on, with chronic migraines that seemed to just get worse as I got older. Stress aggravated the frequency and intensity, to the point where I would be praying for mercy if I had got to the point of losing my composure, because if a migraine was setting in, the emotional outburst seemed to multiply the intensity by the largest margin. At one point in my life, I was losing at least three days from work per month, due to the horrific pain.

In addition to losing time from work for the migraines and occasionally due to my cycle, I began having muscle spasms in my back. They started shortly after a fender bender in which I was rear ended. Sometimes my muscles would contract in my sleep, and the intense pain would wake me up writhing. Nothing would help alleviate the pain, no matter how many pain pills I took (even when I got a prescription from the doctor), and no position would grant any kind of relief, until the spasm subsided on its own. My husband wanted me to go to a chiropractor, but I was reluctant to because at the time, chiropractors were not considered the best in the medical field to seek care from. When my insurance decided they were good enough to allow coverage under, I decided it was at least worth a try and ended up consulting with one who happened to attend our church.

The chiropractic care has helped tremendously over the years, and soon after beginning treatment with my first chiropractor, I stopped having the late night spasms. Even so, I continued to have the other problems mentioned above, and have continued to develop even more problems since; numbness and tingling that run down my left arm all the way to my pinkie and ring finger after going through my elbow, more rarely down my right arm, plantar fasciitis (inflammation of the plantar tendon in the foot), "ghost" bruising (you feel like you have a bruise somewhere, or all over, yet there is no discoloration and you don't remember any kind of impact that would cause it), sharp pains and sometimes tingling pain on the outside edges of the feet, knee pain, and ankle pain. My most recent development which, in fact, just started happening yesterday, is a pain in the upper portion of the ear, which feels sort of like the ghost bruising but not quite the same; it's almost like the inside of the curl of the ear at the top was scraped. The plantar problem is about the only thing that has a real explanation for it, so is most likely not part of this syndrome, but I list it in case other sufferers have ever had this problem as well.

If any of this sounds like you, I would recommend you speak with your own doctor about doing the latest evaluation to determine if you may have this syndrome. If this sounds like anyone you know (particularly the pain symptoms), recommend they see a doctor for evaluation. In its own way, knowing what you have, even if nothing can be done for it, is a relief.