Monday, October 4, 2010

Changing That Point Of View

It is one thing to live in constant writhing pain day in and day out, having no clue what you are doing half the time and unable to sleep and escape it all, yet experiencing unrelenting fatigue. But let's be honest here, Fibromyalgia is not as bad as it gets. Yes it is awful, but it is not terminal, will not turn you into a quadriplegic, does not require you to be bathed and bathroomed by a caretaker, hooked up to machines for your every breath... Oh yes there are certainly worse physical ailments out there. But what I see as the BIGGEST challenge with Fibromyalgia is the mental and emotional aspect of this illness. Figuratively close your eyes and follow me for a second. One day or week or illness or trauma you wake up and hurt all over in a way you have never hurt before, and that pain does not go away. You go to the doctor and they run their standard battery of tests. You return for your follow-up and although you still feel awful, a bit worse in fact, your tests all came back negative. So your doctor orders some imaging and other tests to dig a little deeper. You return for that follow-up and again, all negative. Your doctor pokes and prods you a bit and hits a lot of tender points that scream at the slightest touch. Then they look you square in the eye and inform you what you have is called Fibromyalgia. Its cause unknown, it is a neurological condition and what you are actually experiencing is an increased sensation of pain stemming from the central nervous system. It is not terminal, although if left untreated can become quite debilitating, and it is not degenerative meaning there is no breakdown of the muscles or joints or ligaments, it just feels like there is. They go over a few prescription options and the potential side-effects and together you decide where to start in "managing" this illness, syndrome they are calling it. Your doctor explains that Fibromyalgia is a mysterious condition and not all treatments work for all patients and there may be a trial and error period before the right combination to manage you is found. They give you medication to help you sleep and recommend stretching and walking and keeping your weight in a healthy range. They tell you to get up to 9 hours of sleep a night and eat a balanced diet and severely warn you to limit your stress. You know, all those things we should be doing anyway. They give you a pamphlet titled "You Have Fibromyalgia" to take home to your  loved ones and offer assistance in managing your job until you can manage your Fibromyalgia. You go home and show your significant's, and they are overjoyed you have a diagnosis and a starting point to managing this illness.  Friends and family show compassion and offer to help out in anyway they can.

Okay now open your eyes. No need to pinch know you are dreaming! But what I have just described above is what Fibromyalgia would be like if the emotion were removed. If only it was not a "blame the patient" condition. From doctors to spouses to parents to employers, very few take Fibromyalgia seriously. We as a patient body are emotionally abused on top of suffering from a painful condition that makes normal activities darn near impossible. And the longer it goes unmanaged the worse it gets, the meaner people get and the more judgmental they become. So we fall slowly down that rabbit-hole, watching our life pass us by while disintegrating physically and breaking down emotionally, too sick to do anything about it. Then The Fibromyalgia Life Cycle (previous blog) kicks in and how bad it gets is dependent on how hard you fight and compassionate those you have placed in your inner circle are. THIS IS MADNESS, and it has got to stop now!

One of many things my journey through life has taught me is that all I can really control is how I react to a situation. I cannot make other people behave or think or act the way I want them to, I can simply choose to respond to them differently. I believe we need to apply this philosophy to Fibromyalgia. See we are injured, tired, hungry and scared little vagabonds backed up into a corner, defensive, shivering and hissing with our claws out ready to fight. We are so used to being abused we have allowed naysayers and doubters to prevail and spread disbelief, even in our own minds, making us desperate to be understood. But take a second and a few deep breaths and exhale out all your pain and anguish from how you have been treated since you got Fibromyalgia. Release the anger and frustration and hurt and betrayal that has come from those closest to you. Clear your mind of all that negative emotion and connect with only yourself. You know that what you are experiencing is real. You know your pain is astounding and you are not lazy or crazy or seeking attention or trying to "get out" of having to live life. Now exist confident in the reality of your life as you know it. You are one sick person, but you are one sick person who is no longer going to allow themselves to be abused on top of everything else! You have the power to flip your thinking and believe in yourself and respond from that place of complete security and knowledge in the absolute truth. Build a pillar of strength around yourself that NO ONE can penetrate. Now go live it! Take the emotion out of this illness! With each attack explain that you are doing the best you can and when you are criticized or blamed for not cooking dinner or cleaning the house or making it to work that day serenely respond that you are sick and sorry but that is just the way it is. Don't own their judgment, and then change the subject. Stop feeling "guilty" or like this is in anyway your "fault". When you go to the doctor and are dismissed or told to "get over it, there is nothing wrong with you" calmly thank them for their time and move on to the next one. Surround yourself with those that believe in you, even if you have to find a whole new group to surround yourself with. In other words, stop letting everyone else rule your life! Fibromyalgia already has its nasty greasy little fingers all over you, stop letting its cousins skepticism, ignorance and dubiety at you too!

Thanks for joining,


  1. Hi Leah,
    I love reading your blog! I'm a fellow fibromite and I've been to the Fibro and Fatigue Clinic and I'm still having major flares this summer. Look forward to following your progress!!

    Rosemary Lee

  2. Thank you. You spoke my heart. I don't think IVE ever even believed my diagnosis. This is so validating and inspiring! Thank you for speaking. I plan to share this with my family!

  3. Leah I can not believe you wrote this at the same time I was talking to my girlfriend and told her these very words. It is as if you were on our party line!! It's crazy!!! Thank you once again for making me feel normal! I'm sooo sick of feeling like I have to explain myself. My Doctor has helped me the best she can but is getting frustrated because the pain meds help me but there are times when the dosage amount bring little relief. She does not understand when you lay there at 2:00am in horiffic pain for hours struggling not to take a pill because you used up your given amount for that day and its to early to start taking the days dosage. The torcher of knowing that taking that pill will take away the devil coursing through my body then right before insanity takes over I finally grab the bottle like it was the last saving breath of life and take what will end the torcher and stave off the insanity for a while longer.Then become scared because I've taken from my given amount what will I do if I run out early! IT'S NOT FAIR!!!! I'm allergic to Lyrica Cymbalta makes me sick Savella made me sweat Flexril and xanax made me feel high, and two others I can't spell don't work. 13 weeks of pysical therapy and traction don't forget the massages. I no longer have insurance and just found out the pain clinic will cost $600 just to get started. I have a part time job that sucks the life out of me and I'm behind in every bill! I'm hanging onto my last thread to my last thread!! I've told my doctor please understand I'M NOT CHASING A HIGH I'M CHASING NORMAL!!!!
    Thank you to everyone on this site because for a short moment in time I can stick my head out of the rabbit hole and feel sane!! XOXO

  4. Laura- I was in on your party line, how did I get found out? LOL Someone commented recently that diabetics are not looked down on for taking their meds, why are we? They have a blood sugar problem, we have a pain problem. This has all become entirely to insane and we need to strip it bare and redefine the experience. Enough already! And I understand the chasing a high thing. I was in the hospital with flippin' pancreatitis and getting a lecture from the nurse that I could not go home on IV pain meds. My surly response back was that I could not go home if I could not EAT. Oh I hated that one!

  5. Leah, it is not the pain that I fear as much as the loss of mental ability that comes with dealing with long-term pain.
    For 12 years I worked full-time, not taking pain meds as directed because they left me too groggy to do my job. But economics forced staff cuts, work load and stress increased, and I just broke. It is not fun to have a supervisor ask if you have looked into a medical retirement.

    It is depressing to look around at your co-workers accomplishing so much more than you are. Especially when you KNOW that, at one time, you were capable of performing at that level. But when you are interrupted enough at the office that you end up just sitting, staring at the computer trying to remember what you were doing for over an hour, it IS time to throw in the towel.

    I take my pain meds now - gabapentin and Cymbalta are so much easier on me than the tricyclics - and find that I am still unable to fully function as my brain seems to have suffered the results that have been documented as a result of long-term pain.

    I want my mind back!
    Ann Schenk

  6. Googann- You have 2 battles going here, good 'ol fashioned Fibro-fog AND the long term effects of pain on the brain. Did you read my post "The Day I Forgot How To Spell My Father's Name", listed under "Must Read Blogs"? It is downright shameful and depressing, and I know the work thing is horrible too. I just "retired" at the ripe old age of 34 from my 10 year career as a makeup artist. It is sad and strange. Have you tried any alternative therapies? Prescriptions treat only the symptoms and come with a whole mixed bag of side-effects that are sometimes worse, but I believe we are all suffering from something real, they just don't know what it is yet, and it may not be the same for each of us. I have had a wonderful success at "managing" Fibro/CFS once the viruses (my particular issue) were treated. We have to keep searching to find the root cause of what is making us sick. Our illness is just not established yet. Oh one day we will have apologies thrown at us by the medical community. Until then, keep up the good fight and you are in my prayers ;)

  7. Leah,
    Thank you so much for blogging your journey. You speak from the heart and say the words that many of us are thinking. ?It's hard to explain to others who aren't really interested (even if they do believe that Fibro is real), what the disease does to my life and how much it has changed the person I used to be.
    Anna Stevens, New Zealand.

  8. That is the whole idea behind The Fibromyalgia simplify this so people can begin to understand! I am glad you are with us here. Stay strong sister ;)