Although, being an Advanced EMT on an ambulance, I was familiar with the term "fibromyalgia", before I was diagnosed with it, I knew little about the syndrome. I have to admit, though I do so reluctantly, I was among those who believed it was just a 'catch all' diagnosis and mostly likely, didn't even really exist. I have certainly learned differently. Unfortunately, I have had to learn this the hard way.
Initially when a few a people told me I should be checked for fibromyalgia I laughed it off. How could I possibly have a disease that didn't even exist for crying out loud??? Even when I mentioned it to my doctor it was half in jest. But his answer wasn't in jest, he meant it when he said yes, that was what I had. I was too surprised to ask anything really about it. I didn't know there were any doctors who took the diagnosis seriously either. I just said "OK" and tried to wrap my head around all that.
On the one hand, I was elated to have a diagnosis. I had been experiencing pain and exhaustion for so long that I had given up trying to even explain it to anyone anymore. But there was an 'official' name for it now. Even though that did nothing to relieve my symptoms or my fears, it was a start. It was like a burden had been lifted. Ok, now I knew what it was. All I had to do now was fix it and I could have my life back.
Then the other shoe dropped.... there was no fixing this syndrome. The symptoms could be dealt with, but there was no cure. That wasn't an acceptable answer for me. How could I not be able to fix this? Before all this exhaustion and pain began to take it's toll, I had a life. I wanted it back!
I used to be the kind of person who was ready to go at the drop of a hat. It didn't matter in the least where we were going or what we were going to do when we got there, I just wanted to be a part of it. Life was just one big adventure for me.
For my 40th birthday, I bought myself a flying lesson. I waited two days to go up because it was also my son's 16th birthday and if I screwed up on this lesson, I didn't want to ruin this milestone birthday for him. I was a volunteer firefighter. I was a certified scuba diver. Probably the only one who is terrified of water, but I did it! I did autopsies [legally, I mean, it was my job, lol]... which required a lot of time on my feet. But I was good with that. Yeah, I was overweight. I've been overweight most of my adult life. But nothing slowed me down. The only thing holding me back from doing everything in the world was money. Otherwise, my policy was: "I want to see everything, do everything, and experience everything life has to offer!"
But more and more I was becoming a homebody. I was too tired to even consider getting dressed to go out, much less actually go out. And I hurt all over all the time. To be honest, I think the exhaustion was more overwhelming than the pain. At least I know it was in the beginning. I wasn't used to being this way. I was too tired to do anything. Some days it seemed like just getting out of bed was a monumental chore. God forbid having to take a shower, get dressed and go somewhere!
My doctor had given me some options to try, for example, some time released muscle relaxers that weren't too "knock you down" strong. But then before I could get back into see him he gave up private practice. Another doctor took over his practice. Apparently this doctor is one of the 'non-believers' because he won't even discuss fibromyalgia w/me. Therefore, I have had to go to the all powerful internet to learn more about this syndrome.
When I was first diagnosed, I didn't know much about it and therefore, didn't know what to do about it. I had so many things going on that I was confused. I didn't have a clue as to where to start. Fortunately I learned that many of the things I was dealing with were all part of one syndrome. As much as it seemed like it, I wasn't self destructing all at once. That was a relief to know. At least the majority of my issues fell under one umbrella.
But I still didn't know how to fix things. I kept right on going at the same pace I did every day. For those of you living with this syndrome, you know that you just can't do that. It doesn't work no matter how much you want it too. I can't even tell you when I was first diagnosed since it really made no different in my life.
About four years ago, I hurt my knee. That seems to have been a turning point for me. From that point on, I feel like I've gone downhill. I have put on additional weight because I can't walk like I used to, I have pretty much become a recluse except to go to work because that takes every bit of energy I have. There's nothing left for anything else. I know friends and family probably don't understand. I doubt I would have before living like this. To add insult to injury, I was recently diagnosed w/severe arthritis in both knees and need a total replacement of both knees. I also have severe arthritis of my back. These things have worked to slow me down as well.
I have been reading a lot about fibromyalgia lately. I'm trying to learn what exactly it is that I'm dealing with and what I can do to get back as much of my old life as possible. I am just now coming to terms with the fact that I will have good days and bad days. For the life of me, I couldn't understand how I was able to do something one day and the very thought of doing it the next day could make me cry. I'm learning that I have to pace myself. My problem w/pacing myself is to prioritize what is important to get done first in case the energy runs out before the chores do [and it always does, my 'to do' list looks like the National Deficit, lol]. The past few days I've not gotten much done at home, but I've spent some quality time w/my family while they were home w/me. Later this week, while they are at work, I'll focus more on what needs to be done around the house. I'm picking up new ways, but I'm still learning.
The fibrofog is another thing that has really upset me. Learning about it was another of the mixed blessings so often handed out w/this syndrome. While I wish it could be done away with, at least I was happy to learn I was not dealing with early onset of Ahlzeimer's like I thought I was. I was terrified that I was losing my mind, literally. If it had been something I could hold in my hand I would have truly laid it down somewhere and lost it by now.
One night we were out running errands. Three times I told Allen and Jordan... "We HAVE to stop for gas!!" It was actually the very first thing we had done. But I had totally forgotten we'd done it. It was just gone from my memory. It was a scary thought. But again, having a name to put to it other than Ahlzeimer's disease was a relief. I was way too young for that. At least I think I am.
At any rate, this blog is about my journey of learning to live with Fibromyalgia and a few other things. I hope it's going to be the story of how I got my life back. That's my intention. I have found a local support group. We go for the first time on Thursday night. I'm looking forward to meeting others who are also familiar w/this whole package deal. Not that I want others to have to be dealing with it too.. but as they say... misery loves company, lol. I hope to learn a lot more from them. I have started seeing one orthopedic doctor for my knees, and another for my back. I hope to learn of a good local doctor who believes in this and will work with me so I can change family doctors too. Then I plan to see a rheumatologist and a nutritionist as well. A lot of little baby steps to add together, hopefully forming one big answer to my dilema!
I suppose the only thing to do now is to see where the journey leads! Oh and I was supposed to point out that my son has since lost weight and fits into his own pants again... lol. Without my family I already know this journey would be too difficult to make. I love them so much! Thanks for hanging in there w/me guys!! Love you!
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