SheilaSHEILA

Age 37

My story is a continuing saga, but you’ve all heard it: chronic pain and “bucking up”.

When I was a teenager, I experienced migraines and pains in my neck/shoulders so severe that it was like I was lifting weights with my shoulders. The muscle in the right side of my neck was so built up that I had a permanent tilt to my head. I was in constant pain, but my mother didn’t really believe me, and I’d spent my whole childhood being called a whiner, and being told to “buck up”. At one point, when I was a child, my mom gave me an aspirin every night before bed, just to shut me up. Over the years, I’d learned to ignore it, get past it, and it really did fade into sort of an unconscious clenching, where the pain was there but no longer impinged on my conscious mind. Other than fatigue and a general, constant feeling of malaise, I was able to forget that there was any real pain. I’d lived for so long, being told that I just had a low threshold for pain, that other people had pain and didn’t complain or feel it as severely as I did, that I’d come to believe it, and quit complaining, because no one took me seriously. Every couple of years, I would change doctors, and they would explore the possibilities for me, usually up the same blind allies, and would come back with the same answers for me: I was perfectly healthy, there was really nothing wrong, but it I liked, we could try such-and-such medicine and, if it helped, it would tell us what was wrong.

Let me tell you… I hate medication. Especially if it’s intended to diagnose. I ended up on Prozac, in my early twenties, for about 3 months and it actually triggered psychotic behavior (they don’t tell you this, but so-called anti-psychotic drugs, if they aren’t needed, can actually cause psychosis as well as other emotional imbalances, if given to people who aren’t psychochemically imbalanced in the first place). Don’t listen to the rx companies, folks: these drugs are NOT safe to be used by people who aren’t imbalanced. They are for CLINICAL depression, not SITUATIONAL depression. And, although I know they have been experimenting with use of these rx in treating fibromyalgia, I cannot believe that they are the “cure”. They not only didn’t help me sleep, they actually caused me to be more fatigued during the daytime, and caused insomnia! Maybe they might help some people, but I’m frightened to even try them again.

Anyway, after over a decade of tests and xrays and doctors and medicines, I finally gave up. No one had an answer for me, and since it wasn’t getting worse, and I wasn’t dead yet, I just figured there was no point asking about it anymore.

Then the back pain started. I was pregnant with what would have been our first biological child (and actually ended up being my second miscarriage, exactly 10 years from my first one). My first symptom of pregnancy was actually a mild backache. As the pregnancy progressed, the back pain did, and there were days when I would cry all day, I hurt so bad. It was worse at night, and would wake me repeatedly, so that lack of sleep mixed with pain and hormones was causing pretty severe mood swings, but the doctors explained it away as part of pregnancy: the ligaments become more elastic, which can cause uterine cramping and backache. Never mind that this is not supposed to happen until at least the second trimester, and I’d had both pains from the week before I discovered my pregnancy. The pregnancy ended in the 4th month, but the back pain never did.

Eventually, the nighttime pain progressed to my entire body. Every joint felt as if it were burning up, when I’d wake (as I did repeatedly during the night). If I laid on my right side, I would wake feeling as if my right shoulder, elbow, hip, knee, ankle (every joint that touched the mattress) had been pulled from the socket: it burned, it pulsed, it was more than I could bear. I switched to my left side, even though that is less satisfying sleep for me, and after a couple of weeks, that side, too, would wake me with the same pain. Lying on my back was no better, because the backache would become overwhelming, and even my FEET would hurt from the pressure of the blanket, and my heels from the pressure of the mattress. After about 3 months of this, it carried over into my daytime hours. I noticed a grinding in my right shoulder, and could not put a jacket on, or a seat belt, without wincing/gasping with pain. I went to my newest doctor, and confessed only the newest pain to her, and I’m ashamed to say I cried in front of her, but I hadn’t slept more than 2 hours at a time in 4 or five months, and the fact that my sleep was not only disturbed, but disturbed my severe pain, that I had trouble lifting my children and caring for them, and the pain and fatigue were just to the point where I could not control my emotions anymore. At home, I was snapping at everyone, and crying even when I was happy!!!

Guess what? She’d heard of fibromyalgia (and actually, my mother finally took me seriously, as well, and demanded that if the doctor didn’t suggest it, I ask to be tested for FMS). Even though I’d only just been to a doctor less than a year before, for the back pain, the other doctor, and no other doctor in 17 years of “complaining” even thought of it. She tested me for the usual, to rule them out (lupus and RA) and then sent me to a rheumatoid specialist to be checked for FMS. I was convinced that I had osteoarthritis, since it runs in my family, and since the pain was in my joints. The specialist did a little poking and squeezing and said he “thought” I had FMS and said, “there’s nothing you can do about it, medically. Go online and research it yourself, and try to see what works for you.” Uh-huh. I’m a busy mom of 2, and sometimes rarely even get to check my email more than every two weeks. I should spent hours chasing ghosts? Well, I did research it, and found nothing to help, and confused/depressed I again retreated into the “buck up” mentality. Eventually, my daytime pain eased again, and the nighttime pain settled mostly into my back again (with the exception of “aches”—not strictly pain—in my elbows and wrists).

Two weeks ago, I went to the doctor, scared to death. I was having visual and aural disturbances, clumsiness, confusion and nausea, along with stabbing, cattleprod-like pains which coursed up my back and down my leg. This was not the “buck up” pains of teenagerhood, nor the ones I’d had since my miscarriage. We’re still not entirely sure what symptoms belonged to what, since they have mostly gone away, but when I visited her (again in tears and frightened), she said, “enough is enough, I’m sending you for therapy”. I had my first therapy session, to evaluate and diagnose my pain, this week, and DING-DING-DING, we have a winner! The first thing, upon walking into the room, the therapist said, “I think you’re hypermobile. Can you touch your thumb to your wrist?” And then she made a horrible, cringing face as I did just that. Isn’t that normal??? Well, in some people, maybe, but it seems that I have HMS. From the way she describes it, I wonder if that’s the pain I feel in every joint when pressure is applied for long (like sitting or lying for longer than an hour). She couldn’t say, since she was only charged to explain the pain in my back. So here it is, folks: 1.) I’m hypermobile 2.) pregnancy actually causes hypermobility, so it exacerbated the resident problem and started the chain of events that lead to the back pain, and didn’t stop since I’m naturally hypermobile 3.) I have scholiosis, which is drawing my spine/hips out of balance, and the hypermobility actually allows this drawing to be even easier 4.) I have abdominal scarring from repeated laparoscopes (which were performed partially to correct my endometriosis to try to have children, and partly in an attempt to discover what was causing some of my earlier chronic pain). The scarring is also drawing my pelvis out of balance, and the HM makes this job easier, too. All in all, the base of my spine, my hips, and my pelvis are all scrunched up and my back muscles just can’t take it. They’re clenching up in the attempt to compensate for the HMS and scholiosis. So, I’m doing the exercises and going to attend therapy.

In the meantime, I think I’ll research EDS and, at the risk of seeming a hypochondriac to yet ANOTHER doctor, I believe I’ll bring it up with my GP at our next visit. After all, she believed me enough to send me to a therapist… or did she only send me to get e out of her office? After all these years, I’m afraid I’ve become a bit suspicious and paranoid of what is really going on in a doctor’s mind when he/she sees me sitting on his/her table…

Feel free to edit/narratize/chop huge chunks out of this letter. I know it is very, very long. But, I am so happy to find an answer, I had to tell SOMEONESOMEONE. J

marjibaldwin@hotmail.com