Sunday, March 6, 2011

The Fibromyalgia Life Cycle (Repost from September 23, 2010)

Fibromyalgia has come a long way since I was diagnosed in 2006. The FDA approved Lyrica a year later and overnight it went from "being in your head" to a real condition...for some medical professionals. Not all jumped on the bandwagon because there is still no definitive test to confirm diagnosis, but it was mildly legitimized. At least there was a sector that believed us, that we were hurting, throbbing, on fire inside, crushing ourselves as we walked, not just crazy or lazy or wimpy. Then along came Cymbalta in 2008 and we were given another win, another "option" in managing raging invisible pain. Savella came along last year and has rounded out modern medicines attempt to give us our lives back. For some these drugs have worked wonders, for others they have caused disaster. For many it lies somewhere in between, but at least the word Fibromyalgia has some sort of an association to the general public. When I tell someone I have Fibromyalgia I say, "You know, the commercials for Lyrica?" and they usually nod their head with a vague sort of recognition, not at all getting it, but at least I don't sound like a lunatic mentioning it for the first time. But Fibromyalgia awareness has a LONG way to go.

As I have connected with hundreds of fellow-fibrates and we exchange stories, methods of management, frustrations and sorrows accompanied with this disease I have become aware of a vicious pattern, what I am calling The Fibromyalgia Life Cycle... The potential Fibromyalgia has to completely destroy a person and take down their life is astounding. Time and time again my heart bleeds as I listen to tales of broken marriages, lost jobs, degrading doctors and denied disability claims. These patients suffer body-wracking pain while they watch their lives flush down the toilet, barely able to get out of bed and do anything about it.

This is the pattern of the worst case scenario, what happens all too often to entirely too many people:

1. A person gets sick, develops horrible pain and it does not go away.

2. They go to the doctor who runs a bunch of tests and tells them they are just fine, nothing is wrong. If they are lucky the doctor believes them and offers them some drug or another to help with the pain.

3. The pain, fatigue and insomnia progress to the point that its all-consuming. Living life as it was before is just not possible and personal relationships begin to suffer, some are even lost as their significant others flee the insanity of a very sick person given very little help getting better. Many refuse to believe or understand the incredible pain and push it off as the patient's fault or a mental problem. The ability to parent their children, maintain relationships and friendships or exist as a normal person dwindles down to nothing.
4. The capacity to do their job is compromised as more and more days of work are missed and important information "forgotten" in the file of Fibro-fog.

5. The job is gone, and the health insurance goes with it. Now living on unemployment or disability (if they are lucky enough to have that) and Medicare, all the while the disease progresses and makes life damn near unlivable!

6. SSI Disability claims are repetitively denied due to there being no firm, clinical test to "diagnose" Fibromyalgia and the full impact it has on a persons ability to function or doctors to support the depth of destruction this disease holds over a persons life.

7. Left horribly sick with poor medical options and no income, one better hope someone is still around to offer some support and let them move in... 

And there you have it, the 7 steps to hell! Now many are fortunate enough to have some support network, personal fight, success with medications or alternative treatments or income to stop this destructive cycle in its tracks. But the point I am trying to make is that this can happen and does happen all too often. This is why I believe my strokes were the paddles to my heart to wake me up and open my eyes to how incredibly lucky I am to have survived Fibromyalgia. I am making it my personal mission to lead the charge to change the reality of living with this disease for up to 6 million of us in the USA alone. Way too many still discredit this disease and it is time for this to stop! Science is tick-tocking at a snails pace in figuring out what Fibromyalgia really is or how to cure it, if possible, or treat it at least. We all know it will not kill you, just make you want to kill yourself. So stay strong fellow-fibrates! We are going to change the face of living with this disease. Hold your head high, nurture your aching body and run away from naysayers and doubters as fast as you can...because a revolution is brewing...The Fibromyalgia Crusade is on its way!

Thanks for joining,


  1. I'd like to say I am so happy to read your words. Yes a revolution is brewing. Every day another is faced with harsh pain. Chronic fatigue. Irritability. Pills. Doctors. Tears. I know I am one of them.. Unlike so many I had doctors diagnos me after a few months. But even with that its still hard to control. I have my good days and bad. Nights of either restless sleep or little sleep at all. All I want is a day where doctors finally "all" agree Fibromyalgia is as real as a migraine, head cold, measles. That its not something we imagine. I for one will not give up the fight in bringing this before those that question, ignore and simply pass off as a phase Im going through. Leah thank you so much for being the voice of many. For being my voice. Loving prayers to all of you as you lay down tonight that you are blessed at least for tonight a peaceful rest.

  2. I get very frustrated when your family and friends all act like you no longer belong! I feel like i have no life, i can't plan anyting for fear of having a bad day. I get sick of hearing it myself so i try to just not be around people when i am in a flare! Fibromyalgia chose me !! I did not chose it! I pray that My God will make it all go away! I have felt suicidal with this disease that they say is in our heads!!! I have been on so many drugs and have no luck with them. I have more problems with them. I hope and pray that no one else has to go through what i have been through. i was a very happy energetic and caring person all my life until FIBROMYALGIA struck. I support the Fibromyalgia crusade! God Bless You for starting it.

  3. Amen! I'm feeling #6 like crazy right now! Since being denied for SSI and waiting for appeal hearing (another 9-15 months) my doc has been performing every test on me possible since getting my Medicaid disability. Too damn bad that all my stupid tests keep coming back normal, huh? Just "proving" to SSI that I SHOULD be able to "at least work a desk job" which is why I have to get off the computer now cause I can't take the sitting her any longer without feeling like I'm going to jump out of my skin! Ugh! So glad I found this blog though.

    1. What a breathe of fresh air to see others are feeling what I am. I sit at work typing this and my legs are aching so bad. I took 150 Lyrica hopefully it will go away. The part that is positive is I have a decent primary care Dr. I have also had a diagnosis of Fibro. The sucky part is I am allowed 2 5/325 Norco pain pills a day 300 ml Lyrica 3 350ml Carispordol. This DOES NOT CUT it. I feel like a drug addict. I do yoga stretching, bought an expensive massage chair. Roll on a noodle. Sit on a tennis ball while rolling another along my leg. I also sleep with the tennis ball on the top part of my rear end. I can't sleep on my right side or have my heels touch the bed due to the burning sensation I receive if I do this. Same if I lay on my right side. Fire burning!!! STILL HAVE pain. Some days are better than others. But more are a hurtful everywhere day than a non. I still work and clean take daughter to softball. I push through it with what I have. I don't take the medicine prescribed the correct way or I would never have a GOOD day. It just doesn't seem right that if I hurt why I can't get the right medication to NOT hurt in 2015.
      What is my life expectancy I am 36, by the time I am 55 what will I be like if I feel 70 now?
      We need to FIX this disease!

  4. I hear you all, it's the hardest thing that's ever happened to me. I survived 2 open heart surgeries and a stroke and feel this is worse than the open hearts. Because im on blood thinner the only thing I can't take is Lyrica And vicodin, I take way more than the doctor give me and still only very little help. I have good days and bad days but even the good days are bad. My job is ready to let me go very soon as I have no FMLA left. No one understands, I am judged by co workers, family and friend who just think im lazy. I want to die so I feel no pain. My research says it's brought on by a trammatic experience? I look in the mirror and don't recognize the person I see.. I don't get it, why us. It's affected my job, marriage, all relationships and no one understands. They say to get up and do somthing. Go walking etc. BUT I can't even brush my own hair Times. When I have good days I end up over doing iti guess. No body treats me the same at all. I can't even pay with the grand kids. I hate my self, im so depressed and have no hope for the future. I'd rather be dead and it wasn't for going to hell for killing myself I'd of done it by now. Just becauseu see me up some days doesn't mean im not im pain. The pain is everywhere. I have no hope. Just don't know what to do. Feel likea drug addict. Would love to stop taking my pills but than what, I don't want to feel pain. .. lost and confussed

  5. Stay strong! You will get through this. I completely relate to what you're going through. I feel like I'm watching life pass me by and know one understands what I'm going through. I have pain, chronic fatigue, and my memory/ thinking cap is absolutely the worse. I hope it gets better; because I'm fairly young and married. Hoping for the best.

  6. wow everything you said totally applies to me. your words were very comforting knowing that I'm not alone dealing with this and like you said this won't kill you but you do feel like you want to kill yourself! I miserable everyday dealing with this horrible excruciating pain!!!! I did apply for Social Security and was denied twice and I am appealing it and pretty much it's just a waiting game now.
    Thank you for sharing your story

  7. This is awesome to find other people to share their stories about this awful disease. I am 29 I was diagnosed with it when I was 26! I have tried all the fibro helping meds out there and nothing helps at all. Just withing these long 3.5 years it has progressed so incredibly rapid I am disgusted with myself any more. The headaches have gotten worse. I can hardly get out of bed and when I do I can't walk without holding on to everything. I can't sleep. The pain is extremely unbearable. My husband can't even easily poke at me in a light playful way without me ending up in excruciating pain, just from a simple poke! We have 5 children and it's so hard for me to enjoy them. I stay depressed because I feel like a failure at life and being a wife and mother. I'm so afraid that my husband will eventually give up on me, he hasn't shown the slightest insinuation to this but it's my fear since I'm not even 30 yet but I feel like I'm a crippling 90 year lady! Heck, my grandmother is 87 and she gets around a while lot better than I do. I also have chronic kidney stones (passed over 300 within the last 17 years) I can't even tell you how many jobs I have lost over these illnesses. I know I shouldn't, but I constantly ask "why" this is happening to me... What did I ever do to deserve this!? At the rate the fibro is advancing for me I honestly don't think I'll live to be 40 and if I do I'll be a vegetable! I have said goodbye to my quality of life because it just simply does not exist anymore. I was in denial for so long thinking it couldn't be fibro it just had to be something that was curable! But when my doc ran all my "possible alternatives" tests they all came back negative and I had to grind and bear the fact that I had a sickness that is not diagnosable nor curable and it would in fact ruin my life as I knew it. I haven't applied for disability for the fear of constant rejection especially since I'm so "young".