When all is not well...

February 24, 2010

 *Note: This entry was written this morning. Sorry for the double entry today!

I'm in a bit of a funk today. I'm having a flare up (fibromyalgia). I can hardly walk. From the waist up, I feel fine. From the waist down, not so much. It feels like there is someone/something chewing on the back of my calves, it feels like someone put small bits of gravel in my hips. My skin is so tender that my clothes are hurting me. It hurts to stand, it hurts to sit, it hurts to walk. It hurts. Period. My husbands hugs..hurt.

On "normal" days you can't tell there's anything wrong with me by looking at me. What you don't see is the constant, traveling pain. The muscle aches, the spasms, the weakness. There isn't a single day that goes by that I'm not in pain. Some days it's just more "bearable" than others. You know how your whole body hurts when you get the flu? Multiply that by about 50 and that's what I feel on a "normal" day.

This shit moves around. One minute it can be my legs that hurt, then it moves to my arms and my legs are fine, then my back, then my shoulders, then my neck...you see where I'm going with this right? Changes in the weather seem to be a major factor in my flare ups. Other than that I couldn't tell you what brings on a flare up.

I have extreme (and also traveling) muscle weakness. I'll be holding something in my hand and suddenly drop it. Walking from our truck into a store/the mall takes everything I have in me. By the time we get inside my legs are burning, cramping, and weak. They're actually wobbly. Think of a rubber band that has been stretched out to far, then when it comes back to normal size it's all stretched out. That's how my muscles feel after a short walk.

There are several conditions that I'm blessed with that come along with the fibro. Let's list them:

CFS- Chronic Fatigue Syndrome - Most people means that you're tired all the time, that is part of it. But it also means that I can't.sleep.ever without the help of drugs. I've been that way since I was a little kid. I've taken 2 ambien and still stayed up all night, all day the next day and finally fall asleep at 2 the next day!

Migraines - they come on suddenly and they're often debilitating. Nothing helps usually. I just have to let it run it's course.

IBS - Irritable bowel syndrome. I'm sure we all know what this joy one means.

Fibro Fog - Consist of fatigue, listlessness, confusion, poor attention and concentration and short-term memory loss.

When all of this first started and I went to the dr I was tested for more shit than you can imagine. You see alot of people (including dr's) think the pain you're experiencing is "all in your head!" I was lucky enough that my dr in Louisiana knew quite a bit about it, so when I walked in and told him what was going on with me he immediately said "It sounds like you have Fibromyalgia, but we're going to do some testing for other things just to be on the safe side!" I'd never even heard the word Fibromyalgia before that day! 

They tested me for MS (omg...you think I have MS??), I was tested for Lupus (omg...you think I have Lupus?). Waiting for those test results were some of the hardest days of my life.  

Once all of the testing was done and all the results were in I was told that (along with Fibromyalgia) I have degenerative disk disease, dehydration of the disk, narrowing of the spinal column, and Chiari Malformation. Though I think the link on that is a bit confusing so I'll explain it like my dr did to me. It's a birth defect in where part of my brain is sticking out of the opening at the back of my skull and is protruding into my spinal canal.

WTH? That was a lot to hear and it freaked me the eff' out! Especially the brain thing. I'd had MRI's before and no one even mentioned it! I drove home in a state of shock. Also...googling all of these different "conditions" did not help me one little bit! (NEVER google anything a dr tells you that you have...it will scare the bejeezus out of you!)

No one is sure what causes Fibromyalgia though there are several theories. The few that I've heard are traumatic injuries (car accidents, assaults, etc), women who have had hysterectomy's seem to get it, Vitamin K deficiencies. There's also no known cure. Treatment varies with each patient. I know people who have it that are on heavy pain meds like mophine, methadone, and oxycontin. I've never been on anything that strong.

Actually I don't even take the pain meds (Ultram) that the dr has me on right now. They don't work. And she doesn't seem to want to give me anything stronger. I do take Lyrica (which seems to be helping somewhat), and I do take muscle relaxers (flexeril) every day. Those two meds combined seem to help with the everyday pain. I've tried asking the dr for something stronger that I can use only when I'm having a flare up. She wasn't budging. She seems to think that our current course of treatment is good enough. I have an appointment with her next week though and we're going to have to rethink a few of my options.

There are some days when I just want to give up. There are (lots of) days when I say "why me?" But I try to not dwell on it because it doesn't get me anywhere. Having my own pity party is lonely lol.

Sometimes I think that the worst part of having Fibromyalgia is having to cancel plans with someone at the last minute (after a while they just stop asking you to do anything with them). It's extremely lonely when I'm having a flare up. Sometimes I just wish there was someone to just sit and watch movies with me when I'm stuck in bed. (Hubby does this when he's home...he's great like that) It's hard to be stuck at home in bed feeling sorry for myself when you feel like life is going on outside without you. Ok so maybe I have a pity party every now and then lol.

So I said I wasn't going to post this but a few people told me that I should post it. And a few even told me that they didn't know much about Fibromyalgia (I guess at this point I can say that I call it fibro fuckers! lol). Not many people do. If you're still reading this you deserve a gold star and brownie points lol!! Here ya go!



I hope I've answered any questions you may have had about Fibromyalgia. If not...feel free to ask!



The Boob Nazi said...

Man, I'm sorry. That sounds terrible!

WannabeVirginia W. said...

Thanks for sharing that and I am sorry to hear it. It sounds awful.

Christina Lee said...

Yeah. My friend has it as well. So sorry! Bad days are just that for her as well. BAD DAYS. Aches and pains and all over yuckiness! hang in there!

Elizabeth Patch said...

thanks so much for stopping by & leaving a comment on my blog, I really appreciate it! My mother has suffered from extreme FM since she was in her 40's, and had the same experience: nobody knew what was wrong, and instead they just drugged her up. Thankfully now, she's off the drugs &"in remission" from the pain,but still has a hard time sleeping. My heart goes out to you! I know there are online support groups, they might help...

Danica said...

I'm so very sorry. One time a long time ago my family doctor told me I might have fibormyalgia because of the constant pain I had in my neck. I never went back because I didn't want to hear it.

I wish you peace. And if I was there, I know we would be great friends and I'd bring movies and popcorn over and watch them with you. I understand the loneliness.

Meeko Fabulous said...

This was very informative! Thanks for sharing. If we lived closer I'd be over at your house kicking it all the time! There's nothing I love more than a good couch. :)

DeAnn said...

Girl.. you have been thru hell like me.. Im so sorry.. You are an amazing woman and your very strong..my bff has chronic fatigue and she would sleep for days..

Never doubt the gift you are to everyone that knows you...


HeatherLynn said...

This sounds awful, other than the commercials on Television, I can't tell you that "I" knew much about this debilitating disease either...and i"m so sorry to hear it's taken up residency in your body!

So sorry.

If i were closer, i'd watch tv in bed with ya! *blows imaginary hugs to you*


Chelle said...

Hun, I am so sorry. My grandma has this. She's told me how some people think that it's all in her head and she hates that because it's real :(

{{hugs}} and hoping today is a better day for you.

Aleta said...

About 5 years ago, I was on a poetry site and emailed back and forth with a lady who had the same condition that you do. I remember how she was constantly in pain and all the different meds she would try. My heart and prayers go out to you.

Tracie said...

I think the Fibro Fog is as debilitating as the pain. (For me anyway.) Sleep deprivation will flare me up as will lack of exercise and weather changes. My husband thinks there isn't anything wrong with me. Good times.

pyesquire said...

Thank you for your post i am reading this late June of 10 I suffer to my flares come about 3 weeks t0 3 1/2 weeks a month i had to stop working ( psy nurse 20 years) now a artist when i can my husband is not supportive you are very lucky I wanted you to know as far as your medication sleeping and real pain meds YOU are entitled to the strong ones if you need them if your doctor will not help I can help you find one in your area and help you to talk to him please contact me at pyesquire@gmail .com any else who is suffering feel free to contact me

Beths Blog said...

This is my first time on your blog. You created a blog for my friend and she had your address on her blog. So, I was scrolling down your post and found the fibro post. I have it as well...hate it. I was diagnosed 10 years ago but was in denial and refused to admit I had until this year.

I was wondering, is the dr. you go to a rhematologist? I'm sure that is mispelled but it's late! I just started taking lyrica. I'm really not sure about taking it because it can cause weight gain and pretty much any med that says that, I do it :( But I'm giving it a try.

It's nice reading how you feel and seeing how other people feel that have this as well. I've had a bad day today and it's because I had a busy weekend. If I don't take a day a week where I'm just home and not going, it hits me hard.

I'm sure you have heard more than you ever wanted to but I love your blog!!!!

I'm in Arkansas by the way!
Have a great fibro free week!

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