At age 45 I was just recently officially diagnosed with AS (June 2000). I tested HLA-B27 positive after I asked my new doctor to test for it. I suspected that I had it for much longer. My sister has AS and she is on permanent disability because of it. I first started researching AS on the net at her request to get information for her. She does not have internet access. As I read on it was one AHA! after another. I diagnosed myself and finally the medical community agrees with me.
When I was about 15 I had my first taste of pain. With no previous injury and no explanation, my right hip started to hurt. It became so bad that I laid on the couch and cried, unable to find any kind of comfortable position. My mother took me to the doctor, but he could find no reason for the pain. The pain went away, but it came back every six months or so and continued this way through the rest of my teens and early twenties.
I did not enjoy sports, but I was very active. I loved to dance and I did not buy my first car until I was 23. I used to walk everywhere. Walking for an hour or more to get somewhere did not bother me in the least. I entered a couple of walking marathons to support some charity (but can't remember what) with some friends just for the fun of it. When my right hip flared up, I wasn't able to do much walking or dancing for a week to two weeks, but the flare-ups were pretty infrequent. I consulted a doctor about it a few times, but never received any answer or reason for the pain. I think they just wrote me off as crazy. I was beginning to doubt myself and stopped going to doctors about the pain. I thought it did not make sense to waste healthcare dollars that way because I could just stand in front of the mirror and tell myself that there was nothing wrong with me.
At age 23 (1978) I decided to join the Canadian military. I was worried when it came time to go off to basic training that the pain would come back and cause me grief. I was lucky and it did not. I got through all the drill, marching, running, obstacle courses, sleeping in hooches, and firing on the weapons range without a twinge. I was grateful when the three months of basic military training were over.
I discovered one interesting thing about myself that I did not know before I went into basic training. I had better upper body strength than most women do. I was climbing the rope in the gym. Men had to go all the way to the top, but women were only required to go half way. I was concentrating so much on the climbing technique that I was not paying attention to just where I was on the rope. The gym peri yelled up at me, "Good stuff, Scott!" I paused, wondering if I had heard right. All I was used to her yelling at me was pretty abusive stuff. I looked down and looked up. I was almost to the top of the rope tied to the steel rafters of the gym. I hate heights and froze. I shouted back down, "How do I get down from here?" I heard the familiar abuse and concluded that I had a few choices: learn how to fly, just let go, or try to reverse the process. I managed to get back down to the ground using the last option with just a little rope burn on my hands.
I dropped the running and calisthenics pretty quickly after basic training. I always hated to do those and found that the only way I could run a 12 minute mile and a half was with some sadistic gymn peri master corporal screaming at my back. I did take up swimming and did that pretty regularly.
I had a choice of doing either the mile and a half run every year, or a 35 metre swim within a certain time (I forget how much time) as my annual fitness test. I liked the swim much better. I was pretty exhausted at the end of it, barely able to drag myself out of the pool, but the swim was less likely to bring on the pain in my hip like practising for the run would sometimes do.
I still loved to dance and those were the disco years. I went out with a guy for a year, just because he could dance! We went out dancing three or four times a week, and I kept up the swimming too. I was in pretty good shape. After he asked me to marry him, I said no, and had to find a new dance partner. I have never found one who danced as well (my husband can't dance!), but I needed more than that from a marriage partner. (But shhhh! Don't tell my children that I was a disco Queen! They would tease me forever!)
My work was fairly physical. I was a Navigational Aids Radar Technician. I maintained and repaired the radar used by air traffic controllers. My postings were at CFS Goose Bay, Labrador and CFB Cold Lake, Alberta. I was the first female in my trade at both of those postings. There was some heavy lifting of chassis for the radars involved. (Terminal Radar, Secondary Surveillance Radar, Precision Approach Radar, and the Tacan.) On one occasion at Goose Bay I was sent from the remote PAR site back to the shop to pick up a chassis. The sergeant believed another corporal was on duty there, and did not know that he had used that opportunity to take off on some personal errand. So, I was at the shop alone and the particular chassis I had to bring back was only the heaviest one we had. Our radar was old, and it was 1940s tube technology. I had taken enough harrassment as the first female in the trade at that site that I would have died before asking any man for help. I backed the pickup truck to the shop door and dragged the chassis to the door. I told myself, "All I have to do is get it up three feet to the tail gate." I did, and pushed it into the truck. I knew I had hurt myself. As I was driving back to the remote site, my right leg twitched and shook uncontrollably. I climbed up into the trailer and told the guys it was on the truck, but they would have to bring it in. It took two of them to carry it. I was feeling shaky, told the sergeant what I had done, and after the typical military verbal abuse sent me to the MIR (Medical Inspection Room). I pulled a muscle, but had done no other damage.
My hip didn't even bother me! I met and married my husband at CFB Cold Lake, Alberta. After that, I took my release from the military. The harrassment was more than enough after four years. The only good thing about banging your head against a wall for four years is that it feels so good when you stop!! After that I got a job fixing TVs. That was pretty physical. I had to lift TVs from the floor to the work bench, and then back down to the floor again. TVs then were heavy, still the old tube technology in a lot of the older sets. I did that for a couple of years and then we moved to Kingston, Ontario.
I started working with the Correctional Service of Canada and we adopted three children. My husband retired from the military a few years ago and now works as a civilian computer specialist for the military. Over the years my right hip would occasionally flare up, but there were some years where there was no pain at all in that area. About ten years ago I had a very strange symptom. When I woke up in the morning, my heels ached. I did a painful little hobbling dance to the bathroom, and then to the kitchen to put on the coffee. After about half an hour they felt fine. I thought that was pretty weird, that they would hurt after being off them for about eight hours and the pain would go away after I started walking around on them.
That was so strange that I never bothered going to a doctor about it. By that time I had developed a bit of an attitude toward doctors. I was tired of being told I was crazy. Then that stopped too. There was a period of about six years where I had no pain anywhere.
The spring and summer of 1996 were a stress filled time for me. My husband and I separated and we almost divorced. (We are back together again and we are still healing from that.) I developed severe sleep apnea. I would stop breathing when I was asleep. It took time for that to be diagnosed, and after about three months of almost no sleep at all I was in a pretty strange place. I would fall asleep driving. I fell asleep writing reports at my computer. I was working as a Parole Officer at the time. I fell asleep once in the middle of an interview with a prison inmate. I fell asleep at Parole Hearings. I fell asleep at staff meetings. I was starting to hallucinate because I was so sleep deprived. I saw shapes and movement off to the side, but when I looked there was nothing there. One night I saw a man standing beside me out of the corner of my eye, but when I looked he was gone.
I think the lack of sleep impacted on my immune system and I was constantly sick for that three months. I caught one virus after another. That was when my knees started to hurt. They would get stiff after sitting for a bit, and it was painful to stand up and I felt like I was stumbling about for the first minute or so after sitting for a while. I kept nagging my doctor, but the wait list for the sleep clinic was about one year long. On one visit I fell asleep in his waiting room and he had to come and wake me up. I guess he believed me then and he contacted the sleep lab and had me bumped to the top of the list. I was in the sleep lab and wired up like the bride of Frankenstein later that week. After my sleep study I was diagnosed as having severe sleep apnea. Now I sleep with a CPAP machine, which pressurizes my airway to keep it open and keep me breathing. I CANNOT sleep without it, not even for a short nap. After getting some good sleep for about a week, I felt like a new woman! But the pain and stiffness in my knees were still there.
In November 1996 I was walking across our Correctional Service Staff College parking lot. There had been water on the ground which had froze into smooth ice, and it was covered by a thin layer of powder snow. I could not see the ice and did not know it was there. My right heel slid forward and I tried to catch myself. My knee bent in the wrong direction and there was a loud snap. Down I went! I tore ligaments in my knee and was off work for about six weeks. I healed, but that knee was never right again. My lower back began to hurt me. Then I had pain in my left knee and pain in my middle back area that wrapped around my chest to the front and made it hurt to breathe. When that flares up, a sneeze or cough will send me straight to a hellish experience of pain. Then my left hip started to hurt me as my right hip had some years back. In short, I was a mess and I have been for the last four years.
Over the last year the flares have become more frequent. And over the last three months, it has been pretty constant. I have a few good days in between pain, but I am always aware that pain is never far away.
I did not put much confidence in my doctor, who was a nice man but he probably should have retired ten years ago. In January I was loaned to a medium security institution for three months to deliver a Cognitive Living Skills program to a group of ten inmates. (I started out at maximum security, moved to medium, and have been at a minimum security facility for about seven years now.) At my regular minimum security institution I can park beside the door, and my office and classroom are right inside the door.
It became more and more painful to walk, and I cannot walk any great distances even when I am feeling good because it will cause the pain to start. Even on a good day I walk with a cane.
My old doctor did do x-rays and diagnosed osteoarthritis in my spine. He laughed when I told him my sister had AS and suggested he check for that. He refused to give me NSAIDs or anything for the pain. When I had to do increased walking at the medium security institution, he still refused to do anything for me. In frustration I changed doctors, and it was the best thing I ever did. She checked for the HLA-B27 and other things in a blood test, and the results came back positive. She diagnosed me as having AS.
She prescribed Arthrotec and amytriptiline (elavil). She gave me a handicap parking pass so I could park at the front door of the institution. I still had a long walk down inside the prison (which is HUGE) and I purchased a briefcase with an extending handle and wheels to carry program materials (lesson plans, handouts, homework assignments, reports, files, etc.) She has also referred me to a rheumatologist and for a bone scan. There is a wait list for everything here in Canada, and it may be six months or more before I see the rheumatologist for the first time.
In the winter the dry air bothers me a lot. My eyes burn and water all year around, but they are worse in the winter. Last winter my mouth, nose and throat started to dry out on the CPAP machine at night, and sometimes my nose would be so dry that it would burn and there would be a bad smell associated with it. I had to get up, off my CPAP machine, and wait for the burning to stop. That could be hours before I could go back on my machine and get some more sleep. My sleep specialist prescribed a heated humidifier that attaches to the machine, and I have placed a humidifier in the bedroom too. That helps a little, but does not stop it all the time. When it is very cold, I get the dryness and burning back. My sleep specialist was unable to explain why that should happen, and when I queried other CPAP users on the net, found that I seemed to be the only one experiencing this dryiness. I had attributed it to the machine, but if that is causing it, I am the only one who is experiencing the problem. Between the burning nose and being driven out of bed in pain, I find it pretty hard to get a night's sleep and I am obsessed with getting sleep.
I thank God for the internet. When doctors failed to diagnose me, I was able to diagnose myself from the fact that my sister has AS, is HLA-B27 positive, and has symptoms almost identical to mine. My new doctor is wonderful and agreed to do the test. I found something else interesting on the net. Sjogren's Syndrome might account for my burning eyes and problems with dry nose, mouth and throat on the CPAP. (This can be secondary to AS.)
I might finally have an answer, and hopefully find a solution, to that problem. When I see my doctor again, I'll mention this to her. I was relieved to get the diagnosis. It's not like it gives me any problems I didn't have! It was like being handed a certificate certifying that I am not crazy and recognition from my doctor that I do indeed have severe pain.
Now I can get some help with the problem!! I am not depressed, except after a few days straight of non-stop pain. Before I thought I had osteoarthritis early. Now I realize I have AS late. I count myself lucky that I was able to get to my forties before experiencing the extreme and frequent pain. I know that many of you have had to fight this in your twenties and thirties. I had some pain, but it was infrequent enough that it did not stop me from doing what I wanted to do. I had one theory that perhaps I was spared the full effect earlier because I had been so physically active and in good shape. But reading some of your stories has thrown that theory in the garbage. Many of you are (or were) just as active. So much for that theory! I guess I was just plain lucky.
And of course I am lucky to have all of you! I thank you for your support, and hope that I will be able to offer some help and comfort to you in return.