My life with Fibromyalgia

As many of my friends and family know, I have been diagnosed with fibromyalgia and chronic fatigue syndrome. I've been pondering posting about all of this for quite some time and since I just had my worst attack to date over the Thanksgiving holiday, I figured now was as good a time as any. I don't post my family blog on Facebook, but I didn't want to repeat myself, so that's why I'm letting my FB friends in on this post. I'll think I'll do this FAQ style and have a conversation with myself using many of the questions that have been posed to me by family and friends.

Q: When did you discover you had fibro?
A: Just this past summer, but Rob and I have known for quite some time that something is wrong with me. I tire more easily than a healthy person, have had spells of "lazy" for years, sometimes get muddled in the brain, have memory loss, can be excessively cranky, and a host of other issue have cropped up as well. When I read over the immense list of fibro symptoms people deal with, I realized that I've been putting up with some of them since my high school years.

Q: What does fibro feel like?
A: Well, it depends on the person. All fibro patients have a pain or ache all over their body, primarily in the joints, and the intensity of that pain depends on the day or activity. Beyond that, everyone is different. That's why diagnosing and treating it is so difficult. The only test a doctor can perform is a 19 point pressure test (I had pain in 18 of the 19 areas). I have pain in varying degrees, constantly feel tired but can't ever get a good night's sleep, my brain is foggy (called fibro fog), I get cranky, I have problems processing noises in groups, vibrations hurt (which is why I sit where I do in church AND why I no longer attend more than one service on Sundays.) In a nutshell, I feel like a cranky old lady most of the time.

Q: What is your doctor doing for you?
A: Pfft...my traditional medical doctor wanted to put me on a low-dose anti-depressant to help me sleep. I said no drugs. Fibro can be treated w/o meds...it just takes more discipline and a willingness to break outside of the "take-a-pill" mentality of the medical profession today. I have chosen to see my chiropractor instead, who will be doing a whole host of treatments that do not involve drugs. I will have to change my eating habits and I'm sure many other things, but I'd much rather change my lifestyle and be healthier than deal with the consequences of long-term prescription drug use.

Q: How do you know what you have chosen will work?
A: Well, I did a trial run of an anti-inflammation diet and felt better w/i a week. That tells me I'm on the right track.

Q: How has your life been effected by fibro?
A: Right now, I am pretty reclusive. I have a hard time concentrating on conversations so I don't hold long talks with anyone but Rob, who doesn't mind if I fade out. I have to try very hard to pay attention to anyone, so don't take offense if I appear to "check out" when I'm talking to you :) I have had to remove myself from every church ministry I am involved in. I am still an SU demo, as I am hoping that as treatment progresses, I'll be able to handle more business things. God has removed a number of large events I had planned and I'm grateful that He's in control of my business plans. Not what I wanted, but it's so much wiser for me to just do my two classes right now and the occasional workshop. Homeschooling is fine so far and I just shudder to think how hard it would be to try to be a good room parent if the boys were in school along with shuttling them to and from school and helping them with any homework at night. It's much easier to just do their work at home.

Q: How is your family handling it?
A: Matthew and Anna seem to be doing just fine. Ben is having a rougher time of it. He's testing me daily to see how I will handle him, yet at the same time willing to help. My kids are rather independent and probably do far more things at their young ages than their peers, but it's out of necessity. And it's good for them--someday when they are on their own, they will know how to clean and keep house and cook and fix stuff :) Rob is okay and eager to have me back to my normal self. He's working longer hours to help pay for the treatments and is pretty exhausted, but he wants to keep me. The stat that scared both of us is that fibro patients age nine times faster than the average person. Nothing else I heard convinces me more than that to seek treatment.

Q: Do you need any help?
A: I get asked that question constantly, and quite frankly I never know how to respond. I never know from day to day how I will feel, so it's hard to predict when I'll need help. I guess prayer would be the best way to help me right now.

I hope this helps answer the questions that many of you have had about my condition. I know so many people have said, "I have that!" or "I have an aunt/sister/hairdresser with that problem!" And then I usually get advice on how to deal with it. While I appreciate the care behind the advice, again, every case of this is different and everyone responds differently to treatment, so there is no one answer to the problem. And no, there is no cure. I can get about 95% better than I am now, but I will still have problems for the rest of my life. I'm okay with that...I'd just like to keep the bad time to 5% instead of the 80-85% I'm going through right now.