Meet the dwarves I know only too well . . . the Seven Dwarves of Fibro!

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And they aren’t nearly as appealing as Thorin, Kili, Fili, Dwalin and the rest.  Here’s the seven dwarves of Fibromyalgia Syndrome (FMS).

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I am currently battling a full-blown grade-A Fibromyalgia Syndrome (FMS) flare-up. There’s the searing pain that seems akin to a red-hot poker being pulled from a roaring fire and pressed firmly against the back of my neck, downward between my shoulder blades to my back and my hips. The throbbing in my jaw, teeth, temples, behind my eyes.

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There’s the so-called “fibro fog“–that frustrating thick haze that sometimes envelopes my brain, impairs my concentration, attacks my memory, makes me feel stupid and useless.

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And the weariness that seeps deep into my bones, sapping me of all energy, mental and physical.  My vision fluctuates; on bad days like today I have to wear reading glasses with my bifocals.

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There are the tears that insist on coming and make me feel like such a bloody coward.

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There’s that  knowledge I will never live another pain-free day in my life, that this invisible illness and I are bound together until the end of my days. Oh, it’s not fatal; I won’t die from it. But I will die with it.

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I don’t want pity, I am not asking for a miracle cure. Honestly, I’d rather first see a cure for cancer.

I  do ask for compassion and understanding and a non-judgmental attitude towards anyone you know–a loved one, friend, neighbor, classmate, co-worker–who is living with an invisible illness and dealing with their own nuisance dwarves.

This isn’t like a cold or the flu you’ll get over. It’s not the normal aches and pains from working out or growing older. They aren’t being lazy or trying to shirk their duties. There’s no one medication or course of treatment that works for every FMS patient.

Some therapies are not covered  by insurance; for those of us without insurance it can be even trickier getting the medical attention we may need. And so we take it one day at a time and some days, we congratulate ourselves for even getting out of bed.

Your life is irrevocably changed by conditions like this one. You try to stay positive, to engage in activities and interests to keep your mind off the symptoms, but it is always there. It waxes and wanes; it never truly leaves you. Foggy, Sweaty, Hurty and the rest are always hiding around the corner, ready to make an attack.

You really will never know what it’s like until you’ve experienced it firsthand; but I wouldn’t wish that on you.  Do your best to educate yourself and be empathetic.  And never assume you know what sort of pain and frustration another human being is dealing with. If I’ve learned anything from my personal lessons in the poetry of pain, it’s to never judge.

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Thanks for reading, and I promise to return to Richarding before too long.

To learn more about FMS, visit these sites:

http://www.afsafund.org/

http://www.fmaware.org/sit

http://www.fmnetnews.com/e/

28 responses »

  1. Dear, dear Angie, this is truly awful: my heart goes out to you. You must take your time and come back to us when you feel ready and able. We’ll all be waiting for you. You must know you have inspired huge affection and admiration amongst an ever-growing number of followers not only of a certain Brit actor but of you yourself.
    There must be positive thoughts and prayers coming at you from every corner of the world: feel the luuuurve, my dear!! And get better soon!!!!

    • Thank you, Helen, I do appreciate it. Went to town today for a humane society meeting and 2 do a bit of shopping. Completely wore me out, but at least I got out of the house and took minutes for meeting.

  2. My dear friend, Im not here to offer you pity but comfort. I want you to know that no matter how bad it gets there are so many of us out here who are thinking about you and hoping for at least some relief from this terrible illness. I have only known you for a short time but I feel like we are friends. Yes we have a common interest in RA but I feel that it has become more than that so I can say: Please, take some time off. Rest. Recuperate. Do what you need to do both mentally and physically to at least get this latest flare-up under control. Thinking of you. Love ya mate xxx

  3. Thank you for fighting your way through the flare and the fog to post this. If it helps educate the people around us that this is what we go through every day just to stay alive, maybe, just maybe they will be a little more understanding. I don’t need people to climb into the pain box with me, but I sure wish that they could spend an hour in my mind during flare just for the experience, to learn what it is actually like and then imagine that hour multiplied for a lifetime. You know what I wish and pray for you, raised to the 10! power.

    • Of course I know that. gentle ((hugs)) I thought of you and Stephanie and others who also deal with this same condition as I put this together.

      Was going to write more, but it was proving such an effort that I decided to go with more of the visuals. LOL FMS is often so misunderstood and frankly, it’s a lot more than just the widespread chronic pain, which is mostly what is emphasized in commercials for FMS meds. So much to deal with, and sometimes it just gets to be too much.

      Love ya!

  4. Dear, Angie, how you´re a strong woman . I want you know I admire you a lot for your courage and determination. With all these pains haunting you all the time, you manage be always in a good mood and do so many fantastic things in your blog. Your artworks are exceptionals and to keep different topics,every days in a blog, is a tough work. I wonder how it would be, if you not had such disturbed pains. Have you already tried to consult differents doctors ? I presume yes, but even so, continue searching for alternative medicines and better, in order to ,at least, try to alleviate a little more the pains . A person should never feel pain! Hopefully doctors are able to find a cure for this disease soon. Now, give a time to yourself. Take rest more. We ´ll be always here! I´ll be praying to you to get well soon. Wishing you better days, my dear friend!
    Hugs and take care!

    • Oh, thank you, sweetheart. I wish I were truly strong–I feel like such a weakling at times– but I guess I am stronger of character than I once was. The old saying here about that which does not kill you making you stronger? 😉

      Yes, I have seen various doctors over the years and tried different meds, different alternative treatments and so forth. Sometimes very simple things help-hot or cold therapy, a topical cream or gel rubbed into skin in the most painful areas at least give some temporary relief. At least attention is finally being paid and research is ongoing. For years there were no medications specifically for FMS, and now there are several.

      • As you know, I have tried many things over the years, logging most through a 60-day trial. What I have learned is that not everything works for everyone, and that there are tradeoffs even among the things that work. Things that did not work for me included various dietary supplements and large doses of vitamins, homeopathic remedies, and various restricted diets. Acupuncture provided 1.5 hr relief and was quite expensive. High doses of NSAIDs made me ill and had no effect on the pain. The meds that work are mostly palliative; they don’t fix the cause or all of the symptoms. At least, as you say, attention is being paid and research is being done. I live in hope of a cure for us, all of us.

        • I was on blue-green algae supplements for a while, which was NOT cheap. After a few months, I really couldn’t tell it was doing me any good and Benny finally said, “Seems like an awful lot to pay for what is basically–pond scum.” LOL Agreed. There are those who will prey upon people they know are in pain and desperate and promise cures, so I am quite skeptical of anything that claims “miraculous” effect. But I do hope that one day they will get to the bottom of it all. Did you know some people believe Job in the Bible had FMS?

  5. It is so hard to read,((( Angie))). In my mind you are inteligent,witty,lively girl from Lover Alabama 🙂
    I’m thinking about you and other (((Girls))) in “our little community”XOXO

  6. Oh, Angie–how perfect is this. I wish we could get a national magazine to print this entire blog because it says almost everything people need to know about this insidious, appalling condition. No, I don’t really look like I’m sick–but trust me, I am and it isn’t going away. Fortunately for me, most of my good friends have know me for so long that they are only too well aware of what I go through on a daily basis, and they understand.
    On a different note–our computer has apparently fried, so I only have computer access at the local library until we can figure out a way to get the da**** thing fixed (AGAIN!) So I will kind of be in and out, which I HATE! This is where most of my fun has been lately!

    • Stephanie, so sorry to hear about the computer, I hope things get resolved soon, as we really enjoy having you here, too. ((hugs)) I am fortunate regarding those close to me as well. My husband and my dear sisters are all very understanding. I did have a woman I was doing an interview with tell me “There’s nothing wrong with you, you look perfectly FINE!!” Uhm, well, gee, sorry, that’s why they call it an “invisible” illness.

  7. Dear Angie, so sorry to hear that you’re going through such a rough time. I admire your positivity in living with such a horrible illness. I had some idea of what FMS involves, but thanks for helping me become more informed about what you, Leigh, Stephanie and others have to bear. The more it’s talked about, the better the understanding.
    Sending you *hugs* and my best wishes. Take care and stay safe through this latest weather alert.

    • Thanks, sweetie. Thankfully it’s not this bad all the time. If it was, I fear I might be tempted to go the route some FMS patients have chosen–Dr. Kevorkian style. But NO, I will not do that. I know it will get better. I have better things to live for and look forward to. I like to think Porter would tell me to be a brave girl, Harry would encompass me in a jumpery hug, Sir Guy would toss his hair and remind me not to let my personal trolls get me down … Thorin would tell me to go out and kick butt as best I possibly can, even with the game knee. 😉

      Well, Benny is safely home, just heard him come in. It’s started thundering heavily all around us now, severe weather moving closer.

  8. It is really poorly understood. My SIL has it and it affects her relationships, that people don’t believe that she’s really ill.

    • I don’t think my bosses at the newspaper ever quite understood either, because other than my excess weight, I looked perfectly healthy most of the time. And often you don’t really want to let your employers know just how much it affects you in fear of losing your job (which I did, of course, anyway). I just cleaned my toilet b/c it really needed it and the weather has me antsy and now I am paying for it. LOL Oh, damn it.

  9. You have to keep counting your reasons for living, even if you have to make them up out of whole cloth. People sometimes wonder why I snatch at every bit of joy I can get, but it is so important.

    • Yes, you do. You have to make a conscious decision to see what’s worth going on for, even if part of that is mainly in the realm of one’s imagination. Benny teases me over how excited I get over simple things sometimes, but it makes a difference.

  10. Thanks for this wonderful post. I teach this syndrome as part of my pathology class for massage therapists and while the textbooks can tell you everything they know about it from ‘their’ textbook point of view, it’s more educational when it’s from someone who actually has to go through it, and live with it. I wish you all the best in finding some relief or even better, a cure for FMS.

    • Thanks, Velvet. There’s book learning, which certainly has its place, and then there’s hearing it directly from someone who has experienced it and knows the havoc it can play with mind and body. I think, I hope posts like this one make a difference. 🙂

  11. Thank you so much for your wonderful article!
    I’m suffering of this disease since 12 years now and even if I try to stay positive and fight every day, I’m at a level of pain which gives me sometimes desire to end my life only to end the pain.
    Reading your article helped me because it describes so much everything that I feel that I felt less alone, like if you could totally understand me and by that, show me that I’m not alone to fight.
    Thank you again! I published your article (credited you of course) on my main blog because it’s so far the best article I ever read about this nightmare disease.
    Keep your chin up, you’re a strong, brave and positive person! Thank you again and : courage!

    • Thanks, Dolphen and welcome. My hope when writing these posts is that they will help others–educating, encouraging, uplifting in some small way. I am happy for them to be shared. And no, you are definitely not alone. gentle ((hugs))

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