The following was originally posted by me at www.cafemom.com a sort of "myspace" for moms. I posted it to a wonderful support group I belong to there called " Moms With But Not Limited To" which, unfortunately has recently needed to close off new memberships. This on-line support group is a wonderful asset to many women. Other sources of support are: www.fibrohugs.com & www.fmaware.org . National Fibromyalgia Awareness Day is May 12th.
These sites offer information on all the various "sister-conditions" that go along with fms such as chronic fatigue, restless leg syndrome, irritable bowel & so on. I hope you take time to check these resources out. Chances are if you do not suffer from these things you know someone who does.

If you are reading this you probably have pain yourself or else you think I'm a lunatic & you are waiting for the punch line - I'm waiting too. I'm tired of feeling like a human pinata. I'm tired of being whatever age I am but feeling trapped in a 95 yr old woman's body. I'm especially tired of trying to hide it, keep up a busy schedule due to my own guilt, my own expectations & those of others. I'm tired of feeling stupid, clumsy, forgetful, slow. Inside I want to play on the beach, go kite flying or play soccer with my boys at the park, learn to water ski, etc, etc. Maybe I could settle for less - like just being able to walk through a grocery store the whole trip without having to rely on the cart to hold me up or having to sit on a bench or wait in the car & send someone else in. Maybe it could be just enough to be able to walk up & down the stairs in my house with a load of laundry without gritting my teeth & moaning in pain. So, how do I make those "maybe-inside-days" come out to reality? Believe me I've tried. It occurred to me today how a lot of people get addicted to certain medications willing to do anything for them, yet, here I am, willing to do most anything to not have to take them anymore. I often take myself off of medication just to try to be normal & to make sure I don't get addicted to anything. Invisible illnesses are so hard for the sufferer mostly because others don't see anything wrong with us & disbelieve. That leads to, at least in my case, my own self doubt. What if I'm just crazy? What if...??? But I'm not. And on those days when I dare to start to try to advocate for myself I'm told by doctors I'm depressed, in a rut, etc. I'm frustrated as all get out, but not depressed. I long to do things I can't. I get excited when I suddenly can do things but then that is a roller coaster ride too because those moments can be fleeting. Having a diagnosis for something that is poorly understood & not even considered a disease, just a syndrome- how did I get it?- who knows-treat it-try this, try that, try everything - & I have. Now what? I keep thinking I need to work, I need to keep up with the house more, I need to do more, I want to do more, but I just can't. Pain is exhausting, having pain on some level of 5 or above on a scale of 1-10 for 15+ years is very exhausting. I did childcare for the last 6 1/2 yrs but the noise & being down on the floor with the kids was becoming too difficult for me, & the doctor appointments more frequent, making me feel guilty for not being there for the daycare parents. Guilt leads to stress which leads to less sleep & more pain - do you see the vicious circle? Unfortunately that circle has left deeply embedded tracks all through me. But I keep fighting. When even broaching the subject of disability support I feel guilty & doctors are reluctant- I don't know if they think it makes them look like failures or just the stigma of the whole thing? Why are people's backs turned? My husband works very hard to support me & all the kids, our medicine co-pays could easily buy groceries for a small family. I push myself to do as much as possible like a normal person because I learned to hide my illness long ago, because I hope if I push it out of my mind & tell myself nothing is wrong with me & work my way through it it will be gone, because... just because. Then the weekend comes, teenage kids possibly home if sports schedules allow, hubby home if work allows, the chance for help, the chance to maybe rest & take care of myself, just a little bit, just a half a day or 1 day out of 7. I ask everyone-will you guys be OK if I go lay down for a bit? My loving husband who tries so desperately to understand shakes his head & laughs, "yeah, it's the weekend so of course you're sick, go ahead" my teens roll their eyes as if competing for an Olympic gold medal in the event. My little guys either don't notice or are sweet. So, with guilt, with shame, with even more defeated ego - escape to the bedroom. I have down time, in every sense of the word. I hide under the covers wishing it would all go away, but wishing doesn't help either. I've tried a lot of medicines, physical therapy, acupuncture, osteopaths, a drug being studied by the FDA for use in the US (yes, I was so desperate I became a lab rat). I've gone from a medication making me hypertensive to cold-turkey off of that & shortly afterwards being put on another new drug. This one interacted with others that the same doctor prescribed & knew I was on lowering my pulse & blood pressure to nearly non-existent. Off that cold turkey & on to something else. I feel like a roman slowly exiting the battle field, shield lowered, blade sheathed, brow stained with dirt & sweat, feet dragging. My enemy has not been slain, not begged forgiveness & ran away, but retreated a few steps back, as I am doing, trying desperately to catch my breath & muster the strength to battle again all too soon. Why do doctors tell me I'm depressed? If I was truly depressed wouldn't I have given in & given up long ago? I would settle for misunderstood, tired & coping with chronic pain & disillusionment-after all, Cinderella was not disabled. So, my advise? Keep fighting. If you learn a new trick that works, share it with others. There are some of us, as this group proves, who do understand what you are going through. May better health, strength, hope & laughter & healing all find their way to you all very soon.
You wrote this post on Mar. 14, 2007
You wrote on May. 2, 2007 at 7:14 AM
yesterday, after waiting 2 wks to get in & being without my pain medication & muscle relaxers for 11 days I saw the rheumatologist. He waited until the appointment to inform me that he doesn't write pain meds, that I need to get them from my pcp, why wasn't I told that 2 wks ago on the phone? He told me a disabled parking permit application would be denied, he knows, he sits on the board & too many apply for them & it causes parking problems. I'm not trying to cripple the city nor it's parking lots but why is government & doctors insistent on provoking my crippling? I'm told walking is good for me. Duh, I know that, it doesn't mean I can do much of it. I told him I couldn't even keep up with my laundry because there are days I cannot walk up & down my stairs with my full laundry basket. I was in tears so he told me I was depressed. Well, I wasn't depressed until this appointment I'd placed hope in went south before the door shut behind the doc on his way in the room. Did I mention he is the only rhematologist in town & the next nearest medical is at least 1 1/2 hr drive over a mt pass away? Did I mention I have an unhealthy tendency to nod off in the car whether I'm behind the wheel or not? I told the "doc" I wasn't depressed I just hurt. He asked if I ever wondered why I hurt so much? Like do I still shake an angry fist at God?-is this what he means? After 15 yrs I don't ask or wonder anymore. I was embarrassed, humiliated. I finally had courage to try & get some help & was immediately dismissed. A pain clinic was referred to, blood work drawn since my migraines seem to be from neck pain (ever since those trigger point inj in my skull) which feels different than normal fms. Again, the longing to stand in front of an oncoming train. The financial burden, even with health insurance, of co pays for doctor visits & medicine is crippling. Let alone being a single income family with 5 kids at home - 2 of whom are teens aka bottomless pits. I don't even know why I write this. I wasn't depressed when I entered his office but I'm more so since leaving his office than I could ever imagine. At least if I did jump in front of a train my teens wouldn't roll their eyes at me & wonder if I fake it. Others wouldn't be able to accuse me of being lazy any longer. I wouldn't be such a huge burden on my family, I would be contributing from the after life in the form of social security benefits for my children. Life would definitely be easier for all involved if I wasn't involved. I wish, rather than this invisible thing I have which has yet to be categorized as a disease, that I had something curable or terminal, not this limbo, this painful hell so misunderstood by society & the medical community.