Thursday, May 12, 2011
May 12 is Fibromyalgia Awareness Day - Part 2
If you haven't read the first part of this two-part post, I encourage you to go back to the one I posted just previous to this one. It will help you understand my fibromyalgia much better if you have a good understanding of what exactly fibromyalgia is.
FIBROMYALGIA – MY STORY
When I think back to whether or not there was some kind of traumatic injury that might have precipitated my lifelong struggle with fibromyalgia, two incidences come to mind. The first was when I was in a gymnastics unit of my gym class in 10th grade and fell from the top of the uneven bars to the mat and knocked the wind out of my lungs. I didn’t think I was hurt then, but it was extremely jarring to my body.
The second incident was a fall I took down our flight of stairs in the house I grew up in. It wasn’t down the entire flight, but I gave myself a nasty jolt that I still remember. Again, I didn’t really think I had hurt myself. But I wonder, because when I first started going to doctors about my pain problem, they told me that muscles tend to remember an injury and then try to protect it and sometimes they get out of control and don’t stop tensing up, even though the injury has healed.
The first time I can actually pinpoint that there was something “wrong” was when I was 19 and I inherited a Pontiac Fiero from my dad. The Fiero was a cute little black sports car and it was how I learned to drive a standard transmission. The problem with it was that the gear shifter was extremely hard to move and the distance between first and third gear was very small, which meant not only did I have to throw all of my weight into shifting (and sometimes both hands), but that half the time I ended up in the wrong gear. Terrible for the car and, apparently, awful for my body. Because that’s the first time I can remember having this blip of constant, nagging shoulder discomfort (not yet pain), just under my right shoulder blade that wouldn’t go away. It wasn’t anything I felt warranted a doctor’s visit or was very worried about because it wasn’t the kind of discomfort that I thought about all the time or was very bothersome. It was more annoying than anything else.
The discomfort in my shoulder over the next few years gradually spread to other parts of my body and over time I developed this deep, constant, aching pain. Even now, 27 years later, most of the pain is still centered under my right shoulder blade and right arm, deep in the muscles that connect the arm to the shoulder, but I also have continual pain in the other shoulder, my neck, between my shoulder blades, in my hands, my wrists, my hips, my buttocks, shooting pain down into my right leg, my abdomen, my pelvis, and the other night, a new one. My right calf muscle hurt for no reason and developed into full blown “oh my God, it hurts!” when I made the mistake of massaging it to try to alleviate the pain.
Fibromyalgia is diagnosed when a person responds positively with a “yes, that hurts” to the doctor pushing on various “trigger points” in the body. To have a positive diagnosis, you have to have pain in at least 11 of the 18 trigger points. I think I have pain in 16 of the 18 now, 27 years after this whole thing started with that annoying little discomfort in my right shoulder.
Getting doctors to take me seriously was something of a joke. I would find a physician who would send me to physical therapy and then after six weeks, I was supposed to be all better. Eventually, a physical therapist told me she thought I had arthritis. So back to the doctor I went to get x-rays, at that time all of which were negative. Ditto the rheumatoid factor. And the ANA for lupus. They thought I had an autoimmune disease, but I had nothing that showed up on any test they could come up with. I was still in chronic, unrelenting pain. And I was quite cranky about it.
When Justin and I first got married, I went to a new doctor for the pain in my shoulder. He decided that an injection of some kind of steroid would stop the pain. In the process, he nicked my right lung with the needle and I ended up in the hospital for four days with a chest tube. I had gone home after the injection thinking something didn’t feel “right,” but I needed to go to work, so I called his office and told them that I was going to have to have something for the pain from the injection. They called in a prescription. By the time I went back to him in distress three or four days later, I was coughing continuously and having trouble breathing. He took a quick listen to my lungs, said, “Oh, my God!” and sent me immediately over to the Emergency Room. My right lung was 90% collapsed. I could have died if Justin hadn’t had the good sense to insist that I go back to the doctor. I kept thinking it was just pain from the injection. I was out of work for three weeks while I healed from that little episode. My shoulder still hurts.
I had three kids between 1991 and 1998 and each time I was pregnant, my fibro symptoms would magically disappear. There has been some talk that fibro might be related to hormones in some way, since the majority of sufferers are women. The fact that I didn’t have too many symptoms while pregnant kind of bears that out, but that’s just one person’s anecdotal experience. Hopefully they are doing studies.
After my last son was born in 1998, my fibro symptoms came back with a vengeance. I went from doctor to doctor trying to find out what was wrong. And each test kept coming back negative. The doctors were just frustrated with me. I was a pain in the ass chronic pain patient who wouldn’t go away. I thought, silly me, that if I was in pain, they should do something about it. Figure out what was going on in my body, because clearly I had something wrong with me. It’s not normal to hurt everywhere all the time. Some days, it was (and still is) hard to even get out of bed. Getting up from any surface requires some effort and a lot of moaning and groaning. And sometimes a helping hand. I am chronologically 46 years old, but inside I feel like I'm about 86.
By the time we moved to Winchester in 2005, I was put out with the medical profession in general. I had been diagnosed with bipolar disorder by that time and was on enough psych drugs to make me a complete zombie, but my body still hurt all the time. I couldn’t even pick up my youngest son because of the intense pain that would shoot through my body when I tried. I found a new psychiatrist who wouldn’t dope me into a compliant little patient and a rheumatologist who examined me for about a half hour, pushed on the trigger points (to which I said “ow” at least 11 times) and said, “You have fibromyalgia. I am writing you a prescription for Lyrica. Work up to 450 mg a day.”
Wait a minute. I have what? What is it? Is there a cure? What does this drug do? Are there side effects? I never had time to ask these questions because he was so busy hurrying me out of his office to get to the next patient. This is a constant problem for pain patients. The doctors don’t really know what to do with us, so they just write a prescription for something that is not a controlled substance and hope that we won’t come back.
I did work up to 450 mg of Lyrica, but I still wasn’t getting significant relief from my symptoms and there were bad side effects from the drug that I didn’t like. This is probably way too much information, but if a drug causes stomach problems or constipation, I am not going to take it. Or I am going to take a dosage that does not cause those problems. The pain in and of itself is hard enough without having to deal with not being able to go to the bathroom like a normal person. Lyrica, unfortunately, has that side effect.
I finally settled on 150 mg. of Lyrica a day, but all it was doing was enabling me to function at some low level on a daily basis. I went back to the rheumatologist and begged for something for the pain. And here’s where I got onto the “drug seeking” merry go round that became my life. They developed pain killers for a reason, but the DEA frowns on doctors who prescribe them. If they prescribe them too much or they give them to people who are drug addicts, they will have their licenses revoked. So, in order to get the drugs that will enable you to get through the day, you have to build up trust with your doctor first and then you have to agree that you won’t ask anyone else for those drugs. And you have to get your prescription in person, which is a bit of a problem for me, since I live an hour away from the doctor who I finally found that was willing to sympathetically treat me as a person. And now, you have to take the prescription for these drugs to the pharmacy yourself and show your identification. Which means that Justin or Ben cannot pick up my monthly controlled substance prescription. My doctor’s office mails it to me when I call and request a refill and I take it over to the pharmacy and get a one month supply. Which I then make damn sure I am taking exactly as prescribed and no more.
My doctor and I eventually settled on a combination of drugs that make me functional at about a 3-4 pain level most days. I have “med time” every four hours, just like a patient in a nursing home. And, unfortunately, there is more day than medicine I am allowed to take, especially with the sleep problem, so often the tide goes out and I have to wait out the clock for the next allowed dose.
That damned piling again…the tide comes in. The tide goes out. And nights are the worst, because pain tends to be worse at night and everyone else is sleeping so there is no one to distract you from your pain.
I have suffered from primary insomnia since I was a child and I don’t know if it was a precursor to the fibromyalgia, a disorder all on its own, part of my bipolar disorder, or simply a self-fulfilling prophecy that I believe I won’t be able to go to sleep so I can’t go to sleep. But the fact remains that I have never been able to fall asleep at a decent hour, leading to either hours of tossing and turning or hours of sitting in front of the flickering television in the dark, hoping to get sleepy. And having an awful time getting up in the morning to get the kids off to school.
Being bipolar, sleep is a huge issue because if you don’t get enough of it, you get manic. So they handed me another prescription for sleep medication, which I believe my body has acclimated to over the past 11 years that I’ve been on it, but am scared to death not to take. The one night recently that I tried to go without, I was up all night. Literally. That won’t happen again.
When you get an injury, you expect it to hurt and then you expect it to heal and go away. With fibromyalgia, not only is it not going to go away, you never know when it’s going to flare up. On some days, I feel pretty good and my pain level is fairly low. Maybe a 2 or a 3 on that stupid 1-10 scale they use to ask you how much it hurts.
On other days, the pain is so bad I want to scream and would rate it an 8 or a 9. I know this is probably ridiculous because it’s not like someone is stabbing me or anything, but my brain thinks that something is terribly wrong. Yes, in a sense, this is all in my head. But my head is telling me that my body hurts and I just want it to stop.
There has been recent research that indicates that fibromyalgia pain is caused by overactive nerves in the fascia (connective tissues) that surrounds the muscles. Just a simple touch can feel like a branding iron to a fibro patient. I feel grateful that for me, touch is usually helpful and not hurtful. But sometimes touch can actually make the pain worse, as is the case with that pesky right calf that started bothering me the other night. I made the mistake of massaging it and made it worse. Now it feels like I’ve pulled a muscle there and I’m pretty sure I’m looking at another positive trigger point just because I had the audacity to massage the muscle.
Once you get diagnosed with fibromyalgia, you are pretty much on your own as far as pain management. Most doctors are scared to death to write a prescription for narcotics and I was accused many times of “drug seeking.” I was made to feel as though I was a criminal simply because I wanted relief from the constant pain. I can tell you through my own experience and from accounts I have read that were written by other people with fibro that we do not ask for narcotics because we want to take them or because we want to get high. People with fibro do not get high from their medications. They get pain relief with side effects. But it’s very hard to find a doctor who will help you reach an appropriate level of functioning because they are so worried about having their licenses pulled by the DEA or worse yet, being put on trial and going to prison for being a drug dealer. Our cause is not helped by the idiots who actually go to doctors and make up pain symptoms to try to score these drugs. I would personally like to take every single one of those people and give them fibro for a day. Live in my world for 24 hours and then decide if you want to work so hard to get them to take away my pain medication.
When we first moved to Winchester and I was finally diagnosed, the doctor I was seeing refused to prescribe narcotics. I got a muscle relaxer and ultracet and a referral to the local pain clinic. The pain clinic nurse, another person who has no business in the health care field, unsympathetically told me, “If you’re looking for narcotics, you aren’t going to get them here.” She was willing to stick needles full of lidocaine into my muscles and inject them for trigger point relief, but no way on the drugs and shame on me for thinking I was going to get them from her. Pain clinic. Yeah, they are a pain clinic, all right. A pain for the patient because there is simply no sympathy. By the way, the trigger point injections did absolutely nothing. Go figure.
I feel extremely fortunate to have finally found a doctor who believes that I am in pain, even though I don’t look sick, and treat me. If something besides the fibro flares up, he immediately sends me for testing to see if there is another issue that needs to be addressed. He treats me as a whole person. I am not defined by my fibromyalgia when I walk in his door. I am not that pain in the ass pain patient in exam room 1. I am Chelle and I am someone who has a life besides the fibromyalgia that he finds interesting and likes to talk to me about. When I see him, I feel as if I am his only patient for about 45 minutes. And that is a precious thing to find. He has gotten me to a place where I can live without wanting to scream all the time, which to me means he has been a successful doctor.
Fibromyalgia has affected every single area of my life. There are things I do not do because I simply physically cannot do them and the list of those things is getting longer as I get older. I rarely travel because it involves sitting for long periods of time and a sharp increase in pain level. I don’t work. I tried that recently and, between the bipolar roller coaster and the fibromyalgia pain, my employer decided I just wasn’t someone he wanted to have around. I am not as involved in my kids’ activities as I would like to be. I can’t lift things and am constantly having to ask Justin or the kids to lift and carry anything over about five pounds. Housework is difficult for me and not something I can do on a sustained basis.
I have recently discovered that I have an interest in gardening. I bought plants and put them into containers and as a surprise for Mother’s Day this year, Justin built me a planting bed. But that too will be limited to what I am able to do on any given day. After my afternoon of putting 20 little plants into 20 little containers, I knew I had done a bad thing as every muscle screamed at me in protest all night.
I feel like a disappointment to my husband, my parents, my children, my friends. Between the bipolar disorder and the fibromyalgia, my self-esteem is pretty much in the toilet. Which is a bit off topic and for another post. But suffice it to say that having fibromyalgia is not just a physical illness and it doesn’t just affect those who have it. It spreads out in concentric circles to everyone you come into contact with, everyone who counts on you for anything. I can’t tell you how many last minute cancellations I have had to make either because of physical pain or because of anxiety that I will be in physical pain.
The fibro life sucks. Hopefully, it will get better and not worse as new treatments are approved and I work harder at being more gently active. I consider myself lucky to have a pretty flexible family and an understanding husband. Because, if you can’t see it, it’s really easy to forget it’s there.