Fibromyalgia - Living With Fibromyalgia
Living With Fibromyalgia
I have had this chronic pain since I was at least 14/15. Over the years I went from barely tolerating it, to frustration, to feeling helpless, and finally accepting it. Let's me first tell you a little about Fibromyalgia. Then I'll explain the frustration that comes with it.
There are 18 pressure points on the body. To be diagnosed with Fibromyalgia you have to have at least 11 out of the 18. You must apply enough pressure to turn the top of your nail white. On a normal person this does not hurt. But on a person with Fibromyalgia they feel it 10 times worst. I have a very high tolerance to pain but this test truly hurts. The pain after lingers for about 2-3 minutes. That doesn't seem like along time but once the pressure from the Doctors thumb is released so should the discomfort. Not so with a person with Fibromyalgia.
When I was 14-15 I started having pains in my back. It was getting to the point I couldn't bend down or over without having problems getting back up. My dad said I was to young to have back pains and ignored it. So I never went to see a doctor.
When I was 16, my mother took me to a chiropractor. At that time they had me fill out a questioner on my pains, and then took x-rays. He told us that my neck was curved the wrong way, I had a slight curve to my spine, and that in two spots (one in my neck, the other in my low back) my disks were deteriorated. Well ok I went with that it made since as to why I hurt. Well I went for my adjustments, the roller bar, and my shock treatment, I call it. It felt good. They told me then I had a higher tolerance to pain because I liked it when the setting was an 8-10. Most people like it on 3-4.
Well when I was 17, I went to another Chiropractor. And he gave me the same diagnoses. Showed me the same pictures. Except this time my deterioration was in the third stage. You don't see that stage much till a person is around 60. Boy! That wasn't great news.
Well when I moved from home I didn't have the extra money to go to the doctor, so I just learn to except the pain. But through the years it just go worst. I would get up in the morning a feel real stiff. It would hurt to tilt my head down, like someone was ripping the skin on my back. I felt like there was a big knot between my shoulder blades. A person can get real tired of getting up this way every single day. But after a few hours it would ease up.
After my separation in 92 & my divorce in 93. I was forced to seek employment. So I went to work at a fast food restaurant. Working mainly in the kitchen. Well in November or 93 my back froze up. I could hardly walk, and if I did I was bent over like the hunch back of Notre Dame. Sounds funny now, but it didn't feel funny then. So I went to a real medical doctor, be-cause it was cheaper than a chiropractor. He gave me some muscle relaxers for the spasms, some tylonol 3 with codeine for the pain, and voltaren for inflammation, and sent me off with a week's leave from work.
Two weeks later I was back at the doctor's office, Back was locked up again. He then sent me to get x-rays, and I gave lots of blood. I had told what the chiropators had told me. Well my x-rays didn't show any of that stuff. In fact they didn't show anything wrong with me. Neither did the numouse test he did on my blood. So all he did was to tell me I was having musle spasms, and he didn't know why. So I was to continue the medication. Ok, that was a little hard to swallow. I wanted a second opinion. So I had him set me up with an Orthopaedic (a bone doctor).
Now I was getting somewhere, I thought. I had it set in my mind that they would find something terible wrong with me and I would even have to have surgery. But at least my pain would go away. I even voiced this to my boss. By this time, after I would sit down to relax, when I went to get back up I would have this terrible pain go through me. I had gotten to the point I was sleeping on the old couch I had instead of the bed. My back would hurt all night if I slept on a real bed. Also by this time I was slowly gaining weight. Since my mobility had slowed down my weight picked up.
The day came for the appointment and I went there and they took x-rays. Then the doctor came in and said he found nothing wrong with my bones. He said "A lot of women your age have this problem. We don't know why." Ouch!!! I was only 26 at the time. No-one I knew had this problem. He charged me $150.00 for that statement. I wanted to cry. That was not what I wanted to hear. I wanted to hear there was something wrong with me & they could fix it.
I went back to my regular doctor. He then sent me to physical therepy. I like the massages I got there. But I could only have perticular nurse massage my back cause she did it the hardest. In one of my sessions she commented that my pains move around quite a bit. Maybe I should ask the Dr. to see if I had Fibromyalgia. So armed with this advice I asked him. He said "No. I don't think that is what it is. You are just having musel spasms." After 9 months of phiscal therepy he desided that this was not working. So he took me off of it.
By this time I was up to taking at least 5 pills of felxeril, 10mgs each. 2-3 of the volteren, 50mgs. each. And I would hold off of the codine till I couldn't stand the pain any more. When I didn't have the extra money for the medicens, I would take up to 4 extra strength tylonol. So he gave me new prescibtions. Seems to me I was getting worse not better. But what did I know I wasn't the doctor.
I did find out I could sleep in a waterbed and not wake up as much. The heat from the bed helped some, but I had to keep it set around 90 degrees. Sometimes I would wake up in the middle of the night and go take a hot (as Eric puts it) boiling bath or shower. And just stand there and let the water run down my back just in hopes it would easy the pain. I slept on a heating pad, and often too high, I would wake up with griddle makes on my back from the heating pad. My oldest son would sometimes rub BenGay on it. I would ask my boyfriend, at that time, to rub my back, but he would just tell me he wasn't good at it. He wouldn't even try.
This went on till around January of 96. It had gotten so bad it was affecting the way I walk, sleep, or even to move. I was up to taking 8 tylonols to get through 3 hours of work. If you sit and think about it, that is any where between 24 and 32 a day just to work my shift. I was now a manager, and was required to work 53+ hours. Which meant I worked 10-13 hour days. I usually had two days off. I wouldn't miss work cause I need the money. So I would suffer. And taking anything I could to get the pain to quit. ( ie, Advil, Aleive, Exedrin, Tylonol, or anything else that was extra strenth) I was lucky if I had just one day go by that I wasn't in pain.
I felt like no one understood what I was going through. The Distric Supervisor even made the comment that I was useing my back to get out of doing the heavy work. So dispite the pain & restictions I was on, I would unload the trucks, then pay of it that night & the next day. My life was missrable. Not only had I lost my 7 year old son, I was in so much pain I could hardly walk. When it turned colder, or it rained, it was worse. I felt like I was going to go out of my mind.
Imagine if you can, sitting down to relax after a long day's work, and have to reach over to the table to pick up the phone. Then with no warning you get a jolt of pain run through you like you were hit by lighting. And it is fast & quick, you think nothing of it till it keeps on happening. After you figure out that it is the movement that is bring this on then you don't want to move at all for fear that it will cause more pain. You are still getting up in the morning feeling like you were run over by a train. And now with every step you take a massive pain runs down your leg. Got to be something wrong with you now. Your sure of it. Go to the Doctor and..... You guessed it Nothing!
So I told the doctor I was tried of taking medicine!!! Send to someone who could fix it. Send me to a muscle specialist. So he did. Off to Indianapolis I trotted in hopes that this would cure it all. Still expecting to hear the worse. Maybe it is a pinched nerve.
Well I would NOT recommend that test for anyone. It is extremely painful. They first stuck this needle in my foot & leg. And then electrocute me. Now I can't move, and I have to relax. Yeah, right!!! That thing really hurts. Now, when that part of the test was over. He then put that needle in my back. He actually got mad at me for not relaxing. For one I am afraid of needles, and two it hurt. Well he can't finish the test because I won't relax. But he doesn't think I have a pitched nerve. He recommended I go to a Rheumatoid Arthritis doctor. Sign I wanted to cry again. I was so sure they would find something. But they didn't.
Ok, now that you know what kind of emotional state I was in, back to the trip to the rheumatologist. The doctor came in & and did that 18 point test on me. Boy did it hurt. I think I had all 18 points my body was sore all over. Then he asked me some questions on my pain. After that he told me I had Fibromyalgia. And that it is not progressive, there is no known reason for it, they don't truly know what causes it, and that it is usually treated with antidepressants. I told him I didn't want to take those things. Though I look back on it & with all that was going on maybe I should have.
They say that people with Fibromyalgia do not sleep well. My comment to that is, your right I don't sleep well. When I turn over & a tremendous pain shoots threw me, of course I am going to wake up. Duh!
For something that wasn't suppose to be progressive, why did it seem with each passing day it was getting worse But there was some relief to finally to know what was wrong with me, that I wasn't crazy, even if it did sound like a cop out diagnoses to me. For a long time I believed that it was just plain muscle spasms, and they couldn't find out what was wrong or causing them. So they just gave it a long scientific name to make it sound good, and they didn't know what they were talking about.
But the more stuff on the Internet I read I know that it isn't true. Though some doctors still think it is psychological. It isn't. It is a very real pain, and a very real muscle twitch. I don't know if twitch is the right word. More like grab. You know how a turtle balls up in his shell when something moves near him That is what my muscles do when I move they tighten up and then release. And those of you that have know what I am talking about. I didn't dream this pain up. I dream it would go away.
The doctor told me that pain that runs in my hip to my leg is bursitis. But I don't know about that. At one point he told me that my stractic nerve was inflamed. I did complain long enough that he ordered a cat scan on me. It showed I have a slightly bulging disk in my low back. I always wondered if he had run it on my whole back would he had found more But he told me that I didn't need surgery at this time but I might in the future. That it could go out at anytime from just the simplest thing like tieing my shoes.
I eventually quit working at the restaurant to get a job with less hours and more breaks. When I worked there, managers were only aloud two 10 minute breaks for a 10 hour shift. So I got a job at a factory where I got two 15 minute breaks and a 30 minute lunch. But that only lasted 3 months. When I asked for lighter duties, they kept me till Christmas. Then let me go. So I went on to unemployment for about 6-7 months. Boy, that was a tough time. But I tried to keep my sprits up. Nothing could be worse than the loss of my child so what was yet to come was a definite improvement.
My relationship with my boyfriend was going down the tubes. And in April we finally split after 2 years. So I moved back to Louisiana. After I came to the warmer climate, my pains have eased up a bit. They aren't as bad as they use to be. Don't get me wrong, I still have the pains, just I can go at least 6 out of 7 days with no pain. But when it does hit it says for a couple of weeks. I now have a doctor that has me on the antidepressants. I only agreed to it, cause he wouldn't give me anything else. I did convince him to give me the voltaren.
people still say I use my back as an excuse. That is not true. I know my limits of what I can do and can not do. And for me to say I am in pain, means I am in a great deal of pain. I don't like to voice it often. And try to keep it in as long as I can before I will admit to someone that I am hurting.
I do now have a nice sit down, lazy job. Where I don't have to feel guiltily if I need time off or I am sick. And it is a job that I have always wanted. I had started school for it, but I had to quit. It is a no stress job compared to managing a restaurant.
My future husband has been so kind & supported through all of this. He helps me when I need it and rubs my back when it hurts. He puts the BenGay on me when I need it. And has yet to complain or tell me no. He does complain a little that his fingers hurt but he bought a massager to take over when he gives out. He has made dealing with Fibromyalgia a lot easier. And does not make me feel like I am a burden to him. He makes me feel like I am a part of him. Though he doesn't truly know what it feels like, he at least tries to. He is a very special man, and I was lucky to find him.
I hope this helps at least one person to understand what living with Fibromyalgia is like. Or let someone know that I understand what you are going through. Then I will know I didn't waste my time writing this.
Back to my regular doctor. So now he refereed me to a Rheumatoid Arthritis doctor. So back to Indianapolis I trotted. But my sprits weren't too high. This would be a waste of time.
I had gained about 20-30 pounds during all of this. Listening to the jokes about how a turtle waked faster than me, and tring to take them in stride. Even thought a couple of times of buying a cane to help me walk. I even had it in my hand to go to the check out. But changed my mind at the last moment. If I bought that dang thing it would mean (to me) that this thing had beaten me. So I put it back. And suffered through every painful step. Boy, am I stubborn or what
Let me stop here for a moment & tell you that each test, and doctor appointment I went to, I went alone. My so called boyfriend did not give me much support through this. He made me feel like I was a burden to him. It would take me three times as long to get to the car. And when he was ready to go you best be ready too. I felt so alone in all this. I asked him one time, that if I got sick enough, would he take care of me or stick me in some home. He said he'd stick me in some home. He was a very selfish man, it wasn't what he could do for me but what I could for him. And with all my problems, I couldn't do every much. I felt so bad, even guilty at times. And I knew I was gaining weight, & I started to feel unattractive. He didn't even try to calm that fear either.