Hello again All,
I guess I was supposed to put the introduction to myself here instead of in the general board. Sorry for that.
I could probably write you all a book length post about my journey with diagnosis and chronic pain, but I am sure you all have "been there done that" as well. As I said in the other post; I am a 40 year old stay-home-mom, married for 15 years. My son is 13, my husband is 40, and we have a cat, Cleo. I live in a small town in Middle Tennessee.
I would like to share that I am sure that I have suffered Fibromyalgia and Myofascial Pain longer than the dx 5 years ago (not to mention my issues with Endometriosis). I don't have anything to back up my reasoning, but I know, you know? After getting the dx, I did tons of research and personal history searching. That is to say that once the medical community finally gave me a "name" for my issue, I looked back and discovered that I had been treated on several occasions for what I now know as "FM Flares". At the time I was dxd, I was in horrible shape, I could not use one arm, walking was nearly impossible and had not slept properly in a long time.
I have a very vivid memory of how I was feeling and what my doc did to make him decide I have FM. He has been my "family" doc for many years, so I suspect he already knew (before that fateful visit) what my "real" issue was. His "poking" one spot on my right shoulder with his one finger was all the confirmation he needed. Needless to say that one finger poke made me realize why Sylvester the Cat sometimes hangs from the ceiling by his claws after a scare. My doc calmly said, "You have Fibromyalgia." My jaw dropped and I said, "Fibro-what-algea?!?!?". He replied, "Don't worry, it's not fatal. I will be back with a shot." And left me standing there (I had been pacing like a caged leopard) thinking, "It's not fatal?!?! Does this mean I have live with this horrid pain forever?!?!?" Thank goodness my mother was with me, in spite of her equal lack of understanding, she said, "Ok, daughter, you aren't dying! Let's hear him out and see what's next." To be honest, I was terrified! I knew I had never hurt so bad in my life, including labor pains.
The doc did give me a shot and several RXs, then told me to see him in a week. I protested, saying that surely that had to be something really wrong, that this pain wasn't only in my shoulder. I hurt ALL over! He sort of smiled grimly, placed his hand gently on my arm and said, "I know this is alot to take in, but I know you, you will start to feel better and you will educate yourself. Then you will come see me, teach me what the facts are and we will fight this together! I promise you will not hurt like this forever." Tho it did take several months (years in fact), multiple visits to my physical therapist, and tons of trial and error meds -- I did start to "come out of the dark place" I had been in for as long as I can truly remember. And even tho I "sneaked" around and tried other doctors, I have come to know that my "family" doctor really is my best option for now. He was hesitant, after the first few months, to keep giving me the narcotics. Putting me on the "newest" supposedly non-habit forming pain meds and muscle relaxers. As time (years) has passed, he has gotten comfortable with what he and I consider the "right combo" which does include daily doses of narcotic pain relief.
With all that said, I don't want to sound like I am bragging. I just want to share that I have been very "lucky" with the care I have gotten from my "small town GP". I know (based on years of research and talking with others in online and real life groups) that having a "good" doctor is the one real "weapon" any of us have in this journey of chronic pain. That and plain old acceptance.
Acceptance is a hard won benefit to me. No, I did not get there overnite, nor is it something I take for granted -- it has to be tended like any other ongoing issue. The good days are not as many as I would like, but the bad days are not such a blow anymore either. I have learned that I cannot ignore the signs when I am doing too much. That I cannot "tough up" enough to "beat" this thing. I cannot wish it away. I get angry. I get frustrated. And I still cry at times. The tremendous guilt I have about my personal limitations, or the burden on my family's finances, or not being able to tolerate hugging my kid some days remains.
I know I am not as bad off as some, but then again, I am worse than others. I do a great job of "covering" or "faking" to keep others from feeling like I need special treatment. I rarely try to explain it anymore. The cliche about "But you don't look sick!" makes me soooo angry, that I tend avoid people who don't already know I have a "problem" and/or I don't tell at all. I would not wish my pain on anyone -- truth is, unless one suffers a chronic pain issue, there is no way for them to empathize, sympathize, or come close to understanding me. I cannot imagine actually trying to explain how I really feel every minute of every hour of every day. I have no words to cover it, even if they could understand.
I prefer to try to keep a positive attitude. Not an easy task as we all know. In the face of a chronic pain issue, the factors weighing in against "us" are many and varied. Too few things work in our favor, but the ones that do, whoowee they are blessings! I hope to be an asset to your group as much as I hope to gain support from you. I know that just knowing that I am not alone in this struggle is definitely a blessing.
I still remember (in spite of "fibro-fog") the first time another person on this journey told me that I helped her. She suffers MS and another painful disease I can't think of just now, is 10 years younger, has a small child, a wonderful husband and family, and had a promising career as a teacher -- then one morning *poof* she woke up and could not walk. Yet, she cared enough to tell me that some unimportant bit of information or suggestion I gave her was a blessing to her. Talk about a humbling experience!
Thanks for wading thru my rambling.
Hugs, PeacefulBeach
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