My Diagnosis Story

What symptoms led up to your diagnosis?

I worked at a job setting up drinks at casino bars and working the sunrise shift. At home, I lived with my to be husband, his son who was 12, his nephew which was in his 20's and had problems with partying. I had to at least be in bed and asleep by 9 p.m. so I could get up at 12:30 a.m. so I could get to work by 2. Well his friends were always here, stepson was on the phone when he should have been sleeping. So the lack of sleep didn't help. My spouse is bi-polar and that made it worse. I was 20 years younger then I am now. So I was working by myself keeping up those four bars which was easy that time of night but having no sleep wasn't good. I caught 15 minute naps during my breaks with a little alarm clock in my hands. The stress from home and sleeping problems brought it out. I got what I thought was a groin pull and went to a Rheumatologist, she told me I have Fibromyalgia.

My job wouldn't cover it under worker's comp. Later because of a car accident I lost my job. When I had gotten a job waiting tables, it was horrible. My thighs hurt so badly it was hard to work. I went home in tears. I was put on Celebrex and it helped. It came and went more then it just stayed all the time then. After a while it felt like it was in remission. I quit my job at the restaurant and worked at a small amusement park where I didn't have to stand all the time. That helped. It was strange to me how it would come and go. When it came though, it lasted for a few weeks. Dealing with what I did at home, I was glad to be at an outside job with less stress where I could sit or stand. I later started working at a factory and was still on Celebrex and I did okay with it coming out only once in a great while.

I found out I had carpal tunnel in both wrists, arthritis in my hands and feet, and knees. It was autoimmune as well as some other issues. So gradually, I started getting worse with the wear and tear, standing for long periods of time. Got laid off from my factory job and went back to work at the casino as a hostess. I did okay but I wasn't getting the raise I should have been getting from my hard work because I was doing more then just hosting. So I took a job that paid more and it turned out to be more work and more stress. The manager turned out to be a horrible manager. I might as well been working the whole downstairs by myself in my department. I was hired on as a housekeeper that kept my side cleaned up and I wouldn't have to deal with people very much. Well after being hired, I was also a hostess where I would check people in downstairs and fold laundry, clean the spa on my side, inventory, cleaning up after people all day, getting food orders.

I took home the covers off the seats and stuff to get them cleaned and then put them back on. I did things I didn't have to do for my job but I cared about the place. The help I was supposed to have wasn't helpful and might as well have stayed home. Dealing with that bad stress for five years made my condition so much worse. Any time I would get a good worker, they would move them upstairs. I didn't get a raise for all I did either. Same pay for five years and the new hires also made what I made for doing nothing. I started getting sick a lot more, my body hurt so badly. I started missing work because I hurt so bad or got sick and had a bad cough. My pain started out as what I thought was a groin pull. It went down to my thighs and then hips, shoulders, and neck. 

What tests did your doctor do, and what was this experience like?

She put me through a CAT scan and said I had Fibromyalgia. It was okay. At least I knew what was causing my problems. Celebrex helped for a time. It is so expensive though. I have had doctors do all kinds of test on me. That is when I found out a lot of other things I had. What is frustrating is when you are at the point of trying to get disability and they send you to two doctors that's never seen you to tell the disability people the things that are or are not going on with you. I wasn't hurting that bad those days so bending and walking, etc. was not a problem. I only hurt from sitting so long to go in their office.

The following week, I hurt so badly I stayed in bed all week. They tested my reflexes, had me walk, had me bend, tested my strength in my arms and hands. Which is kind of a joke, my strength is fine. It is what happens when I have lifted too much and it gets irritated. I can't lift anything after that. I was sent to do PT for my knees giving out on me (from hip pain and the nerve running down my leg to my knee) to strengthen it. I didn't have weak knees, I worked standing, pushing carts, lifting things for five years. So I was charged several hundred dollars for something that wasn't what I needed. My lower back needed the attention.

Well then I was sent to a pain management doctor for a consult. He charged me around 700 dollars for a consult. I had been taking over the counter NSAIDs with food and that helped somewhat. I also have a friend that would give me a massage for free if I got bad enough I needed one. I didn't get into doing something that was going to cost me more money I didn't have because I had to quit my job. It was very frustrating to go through all of that for nothing and even with insurance, you end up paying so much. The bills add more bad stress when you are trying to keep your credit in good standing and you have no paycheck. 

Upon learning about your diagnosis, what happened next?

I continued to work and after years of bearing the pain, getting older, and the things wrong with me getting worse it made me feel bad because I take pride in how I work and I would have to start calling out. That makes it so I am not dependable. Even though they are supposed to take my illness into consideration when I am hurting so badly, my last job was not so accommodating. My good help was always taken from me, the bench they let me have to set on, was worthless because I had to keep going and going so things would be taken care of. I couldn't depend on anybody else that was also supposed to be doing what I did.

I couldn't depend on the management to do the right things. I finally had to quit, it got bad enough that I couldn't walk, my knee started giving out on me, my elbow would get inflamed and hurt so badly I couldn't move it. Stomach pain there still isn't any explanation for. I have things that happen just out of the blue and I don't know why.