Wednesday, January 21, 2009

A little cheese with my WHINE

I started this post as a whine about what is wrong with me but as I wrote it I realzied it was more of an information piece about Fibromyalgia Syndrome and me.

I have been diagnosed fibromyalgia This is not something made up that is just in my mind. This is an honest to god syndrome with real symptoms. I try hard not to complain because I know so many people have worse problems than I do. But it gets really frustrating when I try to vent and hear things like - your mom never complained about her illness, see a shrink it is just depression, the pain can't BE that BAD, lose weight that will solve ALL your problems, why are you always tired, why can't you remember anything, the list goes on.

Fibro is not a well understood problem. It is very difficult to diagnose as there are other diseases out there who mimic Fibro. I have recently had ruled out Chrons, Hep A-C, Celiac, thyroid, and ruematoid arthritis. The main diagnosis for Fibro is something called pain points. There are 18 points where pain typical is in a person with Fibro - if you have at least 11 and everything else has been ruled out then they will agree you have Fibro. Yea for a diagnosis but now how to treat it. It is not a well understood problem so it isn't easy to treat. (there isn't even a correct spelling for Fibro in spell check so how can it be treated if it can't even be spelled?)

I recently went on Lyrica - it works OK but I am on a low dose. Unfortunately I have gained 10 pounds on it. People on it tend to gain up to 10% of their current body weight. I am asking to go off of it Friday. I have learned from reading that pain management is one of the main components. Problem is most regular docs don't understand the amount of pain a Fibro patient suffers. On a good day my pain is a 4 out of 10. Those days I can function pretty well. I try to manage to be a normal housewife and mom on those days. But right now because my former doctor doesn't understand fibro or the management of it I am changing docs, I sit most days at least an 8 out of 10. Yes I know I have given birth and labor was painful. BUT this is different pain. It is hard to describe. Ever have the flu? Of course you have. you know that achy feeling you get when you are on day 2 or so? It is like that but only worse. Some days I feel like someone has poured cement in to my body and I have to stop and think about how to walk.

A second problem is fatigue and insomnia. I get very tired. Look for an artitcle tomorrow about the spoons. It explains the fatigue very well. I have taken to telling Scott I have about used all my spoons for the day. It is a signal to me that I am listening to my body and to Scott that I need some relief from mom/wife duties for the rest of the evening. Some days it happens at 2 or 3 and others it happens at 7. Even then, I try very hard not to miss my bedtime routine with Drew. It isn't is fault that I have this crap. Insomnia is a nightmare - no pun intended. I do try to be a regular mom and not have this impact him too much. I volunteer in his class for 3 hours one day a week. I use all my spoons by then. He has playdates etc. I just have to manage what I do on those days so I am able be alert and able to deal with things.

Another major problem I suffer from is memory loss - some call it Fibro Fog. It is not dementia. I know who people are and what my car keys are for. My problem is I can't remember names of people and things. I never know when it will strike. The other day I couldn't remember what a magnet was called. I knew exactly where it was on the fridge, I knew the color and what I needed off of magnet but DAMN if I could remember what to call it. A week ago I couldn't remember my phone #. I was talking to an insurance company and she rattled off a phone #. I had no clue if it was mine. I had to stop and look for my # to make sure it was correct. It can be embarassing and frustrating. Be patient with me. I don't like not remembering things. It has always been something I was very good at. Scott has taken to having me describe what I am trying to say then he fills in teh blank. I used to get mad when he would guess before i could describe. So we have found a way to communicate. Phil gets pretty frustrated with me but I think he is doing better.

I try to make a joke out of most of this - what else can I do? Wallow in self pity? Nah my mom wouldn't have done that. She was strong. And I try to be like my mom - to a point. She was dealt a very crappy hand. My hand is better but don't blow me off when I try to talk about it. I am not asking for sympathy I am asking for understanding. I don't need advice, I need a cyberhug - softly because hugs can hurt some days. Ask me how I am truly doing if you don't want to know. My typical answer is I am fine. don't press for more information just to be polite. IF you want to know I can answer your questions. I am reading lots on how to work with this.

soft hug to everyone. Look for spoons tomorrow.


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