With all the research I do about fibro, this is still a mystery to me. A few years ago I was a healthy, extremely active 28 year old when all of the sudden I started getting extremely tired all the time and started having all the symptoms of fibro.
Nothing happened to facilitate this: no accident, no major life change, no stressful event, no tragedy, no major illness (in fact no illness at all. I had chicken pox at age 10, other than that I never even remember having the flu). I have heard the theories of what might cause fibro, all the theories, the ones that make sense and the ones that are ludicrous. None of them apply to me. I just "got fibro" out of the blue.
I'm curious to hear from all of you that wish to share:
Did your fibro just blindside you one day out of the blue?
Were you always a little "tired" even as a child?
Did you get sick at some point and it never went away?
I'm having trouble still believing fibromyalgia is the correct diagnosis, and the fact that I just suddenly became overcome with fatigue, brain fog and muscle weakness (among all the other symptoms) makes me wonder. I've been tested for everything else almost, and am looking into Lyme, but if it is fibro, why did it just come on seemingly overnight?
Hi, I know how you feel, believe me. It hit me rather hard...began with a numbness in my hand from a slight injury. I was also waking up achey, but I thought it was because I needed a new mattress. I had a few weeks of some back pain and then bam. It was all over. I really think that it started with chronic myofascial pain and then fibromyalgia, but I'm not sure. That was over 3 years ago. I got on SSDI, I get about $960 a month. I also have bipolar disorder so that is probably why i got approved the first time.
I am much much much better now. I am having my first flare in over a month today because a huge cold front with storms is moving in. Sometimes i will go a couple of weeks and not even feel like i have cmp or fibromyalgia. I have written in other posts about how i gave up the house work and most of the cooking. I pray alot, meet with my AA friends almost daily for a few hours, I just started walking on a treadmill, I journal, i read, I volunteer to chair AA meetings twice a week, I talk on the phone. I watch movies sometimes in the evening, I get on the net. I straighten the house and wipe down the bathroom and that's about it. I would like to learn some kind of art or make collages. And i used to be such a clean freak, a real fanatic. That's about all i did and cook and watch tv.
My life is so much better, and Christmas was a little tree on the mantle, $50 for each kid, and a breadmaker for my parents and dinner at their house. I wrapped one gift, theirs. i feel like i am enjoying life more now than i ever have. The stress that i used to put my brain and body through, just threw me into flares over and over.
I am telling you this secret, so you will slow down. It will make a huge difference in how you feel. Don't isolate though, don't lay in bed unless you absolutely have to, and when you flare, don't give up your whole day, sometimes it passes in a few hours. And do things that make you feel good about yourself and to help others.
Also at the beginning I had acute depression. I was weepy. i had to go through a grieving period because of the loss of my good health and not being able to work. i am 47 and I worked most of my teen years and adult life. I saw an art therapist and it helped so much. It took time. It was a strain on my marriage. It is such a huge change. But we came through on the other side. My husband works, we are pay check to pay check, but we get by. I have his group insurance and my medicare.
It gets better, if you make it priority to make it better. You are the only person who can take responsibility for how you live your life. You. You pick the doctors. You do the exercise and take the meds. You eat right. Don't let yourself become a victim. i did that for too long. it took me over 3 years, like i said. i was Painting!!!! A room!!!! and I paid dearly and someone on this board told me I could throw myself into a permanent flare if i didn't cut it out. So there it goes.
Well two years ago my sons had Fifths disease (Slap Cheek). At the same time they had this I got viral arthritis that I assumed was Fifths disease. It got so bad in my fingers that I couldn't type, open a bottle or hold anything. It effected my fingers, elbows, knees, ankles and toes. It was really bad. After about 4 months, I was refered to a Rheumy doc. He tested me for everything found nothing. Put me on advil and scheduled a follow up in two months. Well about that time, my symptoms disappeared.
Stayed gone for about 9 months and then out of the blue I started hurting. I wasn't sleeping because my arms hurt so bad and found myself falling asleep during the day. After about 3 months of pain I decided to go back to the doc. I had done lots of research and really thought I had fibro but didn't say anything to the doc. He tested me for everything and found nothing. Did the pressure point test and came up with Fibro. One interesting thing is that we did sell our house and buy a new one about 3 months before this flair but this was a great move and I didn't seem to be under any stress about it.
I really feel like this fifths disease had something to do with it.
Mine started after a spinal cord injury. Was told that my mind still thought I had the same pain level as I did before my surgery. I originally only had pain in my arms, hands, neck and shoulders. Then about 6 mo ago I started having other pains. Well, maybe longer I had issues with a wierd feeling in my throat and lung area, had a ct and found nothing. Then I had spasms in my hips and legs and my feet hurt. Then my knees hurt. I had a MRI of the lumbar and found nothing new other then what I already had. I went to see a pain counsler to see why I was so ****** about all of this as I too was very energetic and lifted weights, ran and rode horses. She told me to look into FMS. I am seeing a Rhuemy now too. I already am on the Lyrica and Ultram from my original pain problems. And that is what they prescribe anyway.
That leads me to a question: Does it come and go or what? I had 24/7 pain for 3.5 yrs then all of a sudden in the start of my filing for retirement I went into a remission. So my plans stopped. I feel pretty good. Sure I have some pain but nothinkg like I did. It has been about 4 days now of feeling good. It doesn't even feel like it will come back. But it will I am guessing.
Yes, it does come and go. Unfortunately that's the nature of the disease. Some days you can feel the best you've ever felt in your whole life, and the very next day it feels like you got run over by a 5 ton dump truck.
Mine started about age 40 with low back pain that wouldn't go away. I had several high stress events that I believe triggered it. I was seeing a physical therapist who said I know what you have........ Go to a pain specialist or rhume to be positive. Hence my journey began 17 yrs ago. Don't be discouraged. learn what works and do it.
I was 15 when I first noticed the brain fog. I went to the psych because I felt like I couldn't think anymore. They did all sorts of tests and my IQ was only 1 point lower than it had been. For some reason, I couldn't reason anything out. I used to be creative, clever, and smart. After that I felt like I was faking it. I had no new ideas, I only repeated what old ones I could remember.
After that I began to get pain in my legs. It felt like growing pains, but I wasn't going through a spurt. Cooincidentally, my mother was experienceing the same thing and she had just been diagnosed with Lupus and FMS. My father had left us just after she was diagnossed and I began the symptoms only about a month after he left. I think for me it was the stress of him leaving. I think for my mom it was an alergic reaction to sulfa. Gave her a seisure and landed her in the hospital. She was never the same after that. And not because of the seisure.
I've often wondered when my fibro started. My mom rubbed my legs at night while I was young (and crying in pain). Growing pains the Dr. said. I was in good shape as an early teen, a cheerleader in middle school. I couldn't ever do the stretches all the way though. Then I got married and had three kids by age 19. Yeah, I know... Anyway, ex left during last few weeks of last pregnancy and I became a single mom supporting three babies with occasional money from ex. Could that be enough stress to bring about the FM?
On my 22nd b-day I quit my job because of sexual harassment and favoritism of male employees. Crazy thing to do with three mouths to feed. I remember at that time I was having major lower back pains. I had a car with bucket seats. Thought that might be the problem. I used a 1st visit free coupon to see a chiropractor. She took x-rays, did some probing and mentioned I had trigger points in my glutes. I had little money and no insurance, so I didn't follow up.
A few days after quitting my job, I met the man of my dreams. We married 3 months later in March 2000. That all could have been enough stress to bring on my FM. With in 4 months I had gained 25lbs and could barely get off the couch. He is military so we now had great insurance, so off to the doctors we went. Each one did many tests, everything came back negative. I was often told I was just getting older. Come on, I was 22! Irritable bladder, my bladder was just small. (Found out years later my bladder is good sized with a simple ultrasound) All my problems were swept under the rug or explained away as we visited MANY doctors and a couple of physical therapists. Finally one dr. out in the woods said Fibromyalgia. My reply: Fibromyalgia! That's for old, fat, hypochondriac women. (Just raised that way, mom is still in denial that that is my "problem") It's not even a real diagnosis, you just don't know whats wrong!
So for the next six years I refused to go back to another dr. I denied that I had FM. If I couldn't get out of bed some days, oh well, there would be better days. When the depression started kicking in I made list after list of things to do to "get better". Depression was another denial. I finally admitted that I had the big D and found ways to deal with it on my on. My hubby was a great help. He would just let me blabber and cry and understood I didn't mean most of what I was saying.
Finally after all these years of pain and 55lbs of weight gain, I've accepted what I have (FM) and went to the doctor. After all, I was a month away from being 30 and I felt 80. I had built so much anxiety about going I was nearly panicked about making an appointment. Hubby went and met Dr. for me, really liked her and made me an appointment. He went with me, held my hand, let me cry on his shoulder, snap at him with impatience, and was grand about it all. I loved the dr. She immediately started addressing my concerns and has helped me get on the road to better health.
My biggest improvement hasn't been a certain medicine or pain treatment. It's been the emotional improvement. I had to accept not only is FM real, it's also here to stay. There is no quick cure. I also had to grieve for the active lifestyle I once had and for the dreams I now have to change and quit whining about how unfair it all is. Once you get your head around that, even the pain can no long bring you all the way down.
Checking out every book at the library and reading this board often have helped me tons, especially this quote by bluelakelady: You have fibromyalgia, it doesn't have to have you!
Sorry for such a long post, but as you can see, life itself is stressful. It is hard to put a finger on "when you started to get sick". But does it really matter? Learning to adjust to the present and looking forward to a reasonable future are what's truly important.