Fibromayalgia cont...

I had a lot of feedback after my 1st post on this and people wanted to know more, so here it is.

My first post on this was fairly clinical and sketchy on how it affects me personally. Some of you wanted more details and info. There will be things I forget to put in this, but you'll get most of it.

Pain & fatigue are my two biggest complaints with this disease, which is pretty common. But besides that I have the following:

Stiffness. If I stay in the same position for too long, it's hard for me to move. It can really take a long time, and it's very painful, to change my position. Once I get up (off of the chair, or out of bed) and move around for a couple of minutes, I start to loosen up. Unless it's a bad day weather wise. Cold, wet days are the worst for me because I also have arthritis and when they're both flaring up I have a hard time. But any weather change in which the barometric pressure changes hurts a lot. 

Memory. Mine is soooo bad. I hate it. I can't believe Steph still lives in the same house with me. It must drive her nuts. I know it drives me nuts.

Hearing. Mine is very bad, and it's getting worse all the time. It's pretty common for Fibro patients to go deaf. That is, ultimately, going to be the worst part of it for me. You can learn to live with pain, and of course I'm on pain killers and muscle relaxers. They help. Sometimes. But unless they find a cure for this particular deafness, there will be no help for it. I don't mind the idea of having to learn sign language. I already know a little bit, and Steph's real good at it, so I know I'll be able to communicate at home. What bothers me is knowing I'll never again hear my daughters speak to me. I'll never hear Steph sing, or John, my son-in-law tell a joke, or be able to communicate with my grandkids when they're very young and only know how to speak. I LOVE music...I'll miss that A LOT. Ok, I just realized that that looks like I rank that higher than my kids...I don't. But I will miss it. I love watching movies and going to plays. I know I can turn on subtitles, and that will be fine, but it won't be the same. I'll miss the music and there's so much acting in a person's inflection. Plays would be extremely difficult. I've seen signers at many plays acting like subtitles, but it would be near impossible to watch them, and what's going on on stage.

I have a super comfy memory foam bed. I think that most nights I don't move at all. It has taken me several minutes to get out of bed. That happens a lot. And when I finally do I'm so stiff and hurt so much that I tend to walk with my legs perfectly straight. I can't seem to bend at the knee. Again, just moving around helps that.

I have a relatively new problem. For about the last year my arms and legs will just randomly jerk. It's the oddest thing. I'll be in the kitchen getting breakfast, moving slow and quietly because Steph's still in bed and her bed is right over the kitchen. I'll open the cupboard door and quietly take a bowl from the stack, then as I'm closing the door my arm will shoot straight out. That means I slam that cupboard door soooo hard. It makes me roll my eyes...and then I giggle. I'm not sure why. Probably because it happens a lot, but seems to happen a lot when I'm just starting my day. It makes me laugh even harder when I do that with the silverware drawer. They make a lot of noise in that little drawer when I slam it.

Fibromayalgia makes you feel like you have the flu. I'm not talking about what some people call stomach flu (is no such thing), I'm talking about influenza. If you've ever had, REALLY had it, you know how painful it is. I've had it 3 times, and every time I had a fever that went so high I ached everywhere. Everywhere!!!!! You can't get comfortable, you can't stop hurting. That's how I feel all the time. Then, when it flares up, I have charlie horses. Anywhere on my body. And I do mean anywhere. For years I stupidly said things like, yeah, but I've never had one in my back. Or, well, I've never had one in my arms. I've had them in my face, my neck, my torso, my hands, arms, legs, feet, I've even had 2 in my head. Both times I thought I was having an aneurysm. I felt unbelievable pain, like something sharp, hard, and hot was being driven into my head. Both times I saw white, and almost passed out. It was horrible.

Fibromayalgia is caused by different things. I used to have a neighbor who was in a car accident and she hurt her upper back, and ended up with it. It will never go away, but she might not ever develope it anywhere else. I've had it since birth, and it's all over my body. I hate that part most of all. I don't just get an ache here or there. It hurts everywhere.

That's what Fibro pain is. It never leaves you. And I hope and pray that none of you ever get it. It causes a lot of other problems for me, but this could go on and on, and I think this has answered all of the questions I've been asked.