I was diagnosed with Fibromyalgia back in 1992 (when I was 9) at the Shriner’s Hospital in Shreveport, LA about a year after having a bone rumor removed from my left tibia. Over the years, I learned to manage without meds because I was so used to the pain — I have been in some type of consistent pain since I was 6 years old and after having other doctors tell me things like I was imagining it or that Fibromyalgia wasn’t a “real” disorder, I was discouraged and felt like no one believed how I felt so I stopped expressing it and just learned to suffer in silence. Through my adolescence, I went through periods of depression but I always refused medication because I’d been told so many times that all of my symptoms were in my head and I didn’t want to take pills for something I kept being told was nonexistent.
Some days are better than others, but I don’t recall ever really feeling “well.” I couldn’t honestly describe what it’s like to actually feel GOOD! My experience of feeling GOOD is relative — it just means that I feel “good” compared to how I generally feel, which is typically bad. I never feel rested. I’m always pushing and fighting through pain and fatigue and aches and feeling like my mind is slipping away from me as I have such a hard time concentrating and there are so many holes in my short-term memory that I can’t fill :( The other night I cried myself to sleep in agony, feeling like my bone marrow had been replaced by hot lava. I couldn’t even finish my phone conversation with Barry because the physical pain was too much of a strain and I couldn’t concentrate on anything else. The next morning I woke up feeling so heavy, weak, stiff, and achy that if I didn’t know better I would swear someone ran me over with a car! I haven’t ever been on a consistent treatment plan because I’ve always been the “strong” one… so proud to manage my illness on my own, ignoring the pain and just pressing forward through it.
I have sought treatment twice — in 2000 and 2004 — and both times I was told there was no way that’s what I had because 9 years of age was too young for a Fibromyalgia diagnosis. And both times, the doctors ended up re-diagnosing me with Fibromyalgia. At that point, I started feeling like it WASN’T just me because I’d finally convinced two doctors that were dead-set on proving otherwise. The problem is that subsequent to the diagnosis, the doctors I’ve been to ONLY want to throw pills at me to take every day and I don’t want that. I don’t like the way they make me feel. I was prescribed Bextra by one of them which gave me 2 nights of heart palpitations and 2 weeks later I found out it was taken off the shelf for killing people. I’d rather be in pain than dead… so in a treatment plan, I want something more, although I’m not sure what that is exactly. I do know that I need pain medication but not to take routinely. Just when it’s necessary. I don’t like the idea of being medicated all the time. A lot of the time I can actually manage fine on my own. I just need something for those unbearable days.
I have five children and my body seems to work against me more and more with time and I can’t continue not having any help with my symptoms. I am only 28 years old and the thought of missing out on things with my children because I’m too stubborn to ask for help is inconceivable at this point. I shouldn’t feel like I’m 60 years old… So yesterday morning, I sent a detailed contact request to a pain management clinic that specializes in Fibromyalgia care about an hour away. I thought I would always be able to do this on my own, but this chronic illness has more in its back pocket and it’s starting to outplay me by cheating. Right now, the best way I can tell you about the frequency of everything is that sometimes it’s literally everything at once, sometimes it’s variations of the pain, sometimes it’s just the fatigue, but it’s never “nothing” … and the fatigue has recently started to be a consistent part of every day and while I can push through pain, the fatigue is crippling for me which is heartbreaking.
I feel helpless and hopeless at times because I don’t know how to explain what’s wrong with me. I don’t want to yet again complain about how I don’t understand why I have to deal with this. I don’t want to have to remind myself after every sentence that there are people who are worse off than I am. I don’t want to express everything on my heart only to end up with the same old empty feeling when I realize that it’s all only getting worse with time. When I first was diagnosed, I could deal with the 2-3 symptoms. After the first decade, I could manage the 7-8 stymptoms… I got used to each one’s onset. But now that I’m closing in on the end of the second decade, my body and my mind are just overwhelmed by the plethora of symptoms and I can’t handle this scarless battle on my own anymore.
These are all of the symptoms I sent to the clinic I contacted this weekend to have them call me to schedule my initial consultation:
- Headaches/migraines which often make me sick to my stomach or I get dizzy…
- Pain all over my body — neck, shoulders, chest, hands, back, hips, legs, ankles, feet — when I overdo my activity, as soon as I lay down, it feels as though my spine is trying to pull away from my pelvis and I have to curl up in a ball to get some relief but I have to continue to change positions because it starts again once I’m still for a few seconds
- Hands shake (this just started within the last few weeks and is VERY frustrating)
- HORRIBLE fatigue that has become miserably debilitating.
- I’m SO stiff when I wake up in the morning that unless my back cooperates and pops in several different places, I can barely move for the first couple of hours (or I consciously FORCE myself despite hurting) but even on the mornings that the pain doesn’t keep me in bed, the fatigue normally has me fighting just to get my eyes open and get up.
- No matter how much sleep I get, I NEVER feel rested. Ever.
- Stomach issues (just started within the last few weeks also)
- “Fibrofog” — this may be the most frustrating element… feeling like I’m literally losing my mind. My head feels permanently groggy and I have trouble concentrating. I can’t remember very simple things and it may sound silly or like it’s not that serious but it really scary for me (my husband works offshore and there have been several times he will call and tell me to call his room in 2 minutes. In that short time, I will forget that he called me. A few minutes later he will call back and ask why I didn’t call and all I can say is I forgot – or make up an excuse so I don’t sound quite so stupid. People around me don’t understand how that’s possible for me to forget things so quickly.)
- I have chest pains and when that happens and I take a deep breath there is a popping sound before it releases. Really weird…
- When I stand for long periods or walk for a good distance, I have these crippling uterine contractions that give me momentary hot flashes (happened Friday afternoon in the mall for about 20 seconds while I was standing in Sephora)… and no these are nowhere near the time for my “cycle” and completely unrelated to anything of that nature.
- All kinds of irritating twitches especially in my left eye and my hamstring
- Numbness in my hands… like if I hold my cell phone to my ear, after a few minutes I will have to get off the phone because my fingers fall asleep. My legs/feet do the same thing but not as often.
The list goes on and on… even when I’m at my best, I’m forcing my body. I never feel whole; something is always amiss. I push and push and push until it’s so bad that I literally cannot force anymore and working that hard only gets me as far as most people can go normally without much effort. How’s that for suck-ish?