Fibro-what?!

(Written and uploaded in 2013)

Before the actual disclaimer right below, I’d like to say that Fibromyalgia is the diagnosis I was given, but that doesn’t necessarily mean it is what I have and sometimes we’re skeptical that my exact symptoms could all be caused by the same thing. Despite that fact, I still consider it Fibromyalgia because it is the only diagnosis I was given and we need to call it something. Plus, as you’ll see from my explanation, Fibromyalgia is basically a name for multiple symptoms, so it basically does the trick. 

 

I am citing medical websites and definitions, but choosing what to include and how to word everything. Therefore, this adequately depicts my definition of Fibromyalgia, but it is in no way strictly medically accurate (though I did try). To keep things straight, the pieces that I have added because they apply to me specifically will be written in italics. Make note, everything in italics is that way because it is my personal whatever, and not the normal uses of italics (so extreme pain means it is extreme for me, not that extreme is really extremely extreme). I am including the links to my sources at the bottom of this page, so if you want to simply read those, be my guest.

  

Fibromyalgia:

Fibromyalgia (FM or FMS) is a disorder characterized by widespread chronic pain and a heightened and painful response to pressure (the kind that happens in life, and the kind that is applied on on your body). Tender points (or trigger points), which are one of the main characteristics of Fibromyalgia, are specific areas of your body where extreme additional pain is experienced when pressure is applied. Researchers believe that Fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. The exact cause of Fibromyalgia is unknown, though it is believed to be related to psychological, genetic, neurobiological and environmental factors. For instance, symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, like mine, symptoms gradually accumulate over time with no single triggering event. 

Not all Fibromyalgia patients experience all associated symptoms (this is a very important fact to remember). That said, common symptoms of Fibromyalgia include:

1. Pain

2. Fatigue

3. Anxiety

4. Sleep disturbance

5. Joint stiffness/pain

6. Bowel and bladder abnormalities

7. Numbness and tingling (in the extremeties)

8. Depression

9. Head aches

10. Cognitive dysfunction (known as Fibro Fog)

11. Painful Menstrual cramps

Fibromyalgia is estimated to affect 2%-4% of the population, with a female to male incidence ratio of approximately 9:1 (women are much more likely than men to develop the condition).

Fibromyalgia can also affect children and teenagers, though it is much more common in adults. Most of the time Fibromyalgia affects women over age 18. Even so, between 1% and 7% of children are thought to have Fibromyalgia or similar conditions. Just as Fibromyalgia in adults is more likely to affect women, child and teen Fibromyalgia occurs more often in girls than in boys. Most girls with the condition are diagnosed between ages 13 and 15. New York Methodist Hospital reports that children with Fibromyalgia tend to have a better prognosis than adults who have the disorder. Research indicates that more than 50 percent of children recover within two to three years while symptoms in adults usually continue over the long term.

One of the many reasons why teen Fibromyalgia is so frustrating is that the symptoms compound one another. For example, the pain of Fibromyalgia makes it difficult to sleep. When kids can’t sleep, they feel more tired during the day. Being tired makes the pain feel more severe. The symptoms become a cycle that is difficult for kids to escape. Fibromyalgia can be so debilitating that it causes many kids with the condition to miss school an average of three days each month.

The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain”. While there is no cure for Fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help. Fibromyalgia has been recognized as a diagnosable disorder by the US National Institutes of Health and the American College of Rheumatology.

 

Bibliography:

http://en.wikipedia.org/wiki/Fibromyalgia

http://www.mayoclinic.com/health/fibromyalgia/DS00079

http://www.webmd.com/fibromyalgia/guide/fibromyalgia-symptoms

http://www.webmd.com/fibromyalgia/guide/fibromyalgia-in-children-and-teens

http://everydaylife.globalpost.com/fibromyalgia-teenagers-7742.html

 

P.s. I figured I would put up this info page so that I don’t have to explain what Fibro is all the time, and so that no one is left wondering while they’re reading my writing. 

So, yay for never having to explain it on my blog again! Yay!

Yours truly,

Ella

 

Song Quote: (like I would post something without one…)

 

Pain on pain on play repeating, with a back-up makeshift life in waiting. -Wait It Out, Imogen Heap

 

36 comments on “Fibro-what?!

  1. Dovima Art says:

    Boy oh boy, you had me at the first paragraph! I SO GET THIS- from the so called diagnosis to the manifested physical issues to the bewildering thought that it may or may not be true. Thanks for posting. I have not embarked through all your prose as yet but I hope some where you have written about what you do for mind release…I am an artist and that happened purely as a function of therapy and release. I hope you find some measure of same. Regards.

    Like

    • Ella says:

      Glad you appreciated this! I’m sure I have written somewhere… there was definitely a time when I used to post some of my artwork. These days it’s more about the writing, and about focusing on living my life to the fullest and finding release in people – whether my relationship, my roommates or my friends, I unwind and recharge by being with people I love. They’re my therapy.
      Wherever you are in your journey with medical struggles, I wish you well and hope you find comfort where you seek it.

      Like

  2. I have fibro, chronic myofascial pain, osteoarthritis, several food intolerances/allergies and multiple chemical sensitivities. I don’t like the first two diagnoses because they seem to be a cop out. The symptoms I present with could be MS or Lupus too. It all results in some pretty nasty days. I can totally empathise with you.

    As far as treatments… I am currently doing lidocaine injections. They help a LOT because they close those doors that are always open. I have other methods of coping too but … well, it’s definitely not for everyone.

    One reason I write is to escape. All my female leads seem broken somehow though. Like me.

    I shall read more of your blog, I think. I do like your attitude. :)

    Like

  3. I agree with your post. It’s usually the first diagnosis given, as the illness and symptoms evolve. I, too, have fibro and have undergone tests for MS, Lupus, and Sjogrens. The last being the most likely. Results to be here any day… Take Care!

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  4. I like your blog, very inspiring for me as a new blogger (I have yet to even make mine public to friends and family). I feel we have a lot in common in thoughts, and experience – fibro has a lot in common with Lyme. Keep the writing coming :-)

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  5. drowqueen says:

    Hey there, I loved your “name” so I knew we had something in common. Being tired. All the time. Not necessarily fun for us, but nevertheless, it’s there. Here’s to our Fairy Energy-mother coming down and sprinkling us with some magic dust:)

    Like

  6. Great information. I have lupus and it changes your life. The symptoms become so unpredictable at times. It is not easy to live with. I wish you well. Thank you for sharing. :)

    Like

  7. Tony Fallon says:

    Recommend GAPS eating protocol. http://doctor-natasha.com ;)

    Like

  8. Afie says:

    Hi Ella, Thanks for stopping by and your like on my post! As you know, I have Fibro too plus a couple of other things. ;) One day at a time love! It will never go away but will get better. I can promise that much. Your body is your temple.

    Like

  9. Robert William Haddock says:

    Dear Tiredella,
    I think I have Fibromyalgia in my Spirit.
    I was reading the symptoms and though my body is strong, I feel every little detail of emotion that floats by.
    It’s hard to bear the burden of being super sensitive in any capacity, I suppose. It changes everything and disenables one from living a common life… Which can be torturous at times.
    But it can also be indescribably beautiful and full in ways few could imagine.
    I’m happy to see you share this personal information. It’s encouraging and opens my eyes to a different perspective.
    :)
    I hope you have a great day!
    -Robert.

    Like

  10. This is a great description of FM. Good job.

    Like

  11. My wife has been with Fibro for years. I see and hear the agony she endures through everyday, and being a Pre-k teacher is no easy task. It is a 24/7 struggle with her medicines and recently a rapid weight gain because of the medicine she is now taking.
    Admittedly I was frustrated with her when we first married because of some of the restrictions she has. Going on walking tours and staying up late were out of the question for us. But as I have read up on Fibro and has many heartfelt talks with her I can understand the pain she goes through.
    I love my wife dearly and hate to see her struggle every day. But that is part of marriage and life as we all have our struggles, but it’s how we tackle them head on is what makes us unique.
    My wife and I have a strong marriage and plan to for the duration. Living with someone with fibro isn’t easy, but put yourself in their shoes and find out what isn’t easy is all about.

    I wrote a story on my blog about fibro as well.

    Like

  12. I think we could talk from pain to pain and the coping strategies we have used or are using… I love to dance as you but I think we could find a way to flow even with pain. Sending you a big hug and wishing a nice day

    Like

  13. JK says:

    I have fibromyalgia as well. The worst thing – I thought I was going to die when I got my last mammogram. The pain was unbearable! Thanks for sharing.

    Like

  14. My mum suffers from Fibro, and I suffer from some less severe, but similar symptoms due to M.E. I know circumstances will be different for you, but I do understand how difficult it can be, and how much of a challenge it brings living with a physically limiting illness. I wish you the best and hope you find something that eases your pain.

    Like

  15. Maddie says:

    Wow. Crazy! Girl, keep on keepin’ on and don’t you let the world–or that diagnosis–keep you down.

    Like

  16. Hope things improve for you.

    Like

  17. Capricious1 says:

    I just read a post by Bipolar Barbie-Q about a detox bath. I’m excited to try it once she replies and tells me a bit more about it. Have you tried trigger point injections or a TENS unit? My primary doc is running out of ideas to help me with my fibro. Last week she wrote me two non-formulary prescriptions… one is a topical compound and the other is an ethyl anesthetic spray that freezes the skin. She’s reaching, and that scares me. I’ve tried so many things and the only thing that helps the constant pain is Percocet. Even Morphine has failed to bring me relief. Running out of options.

    Like

  18. Informative. I have fibro, too. Massage, yoga, meds, vitamins + D, and heat (packs and baths) are my best friend. Soft-feeling clothes are a must-due to that finicky skin factor. 8-10 hours of sleep, too. Did not know about the thyroid connection but will look it over. I feel fortunate compared to others.

    Like

  19. Bee Berryman says:

    Random, but I have listened to that Imogen Heap about 30 times in the last week and knew it right away. Great song, and very relevant! Good luck <3

    Like

  20. megankdyer13 says:

    Have Fibro Too. Vitamin D has recently been shown in studies to help, because Vit D deficiencies have been noted in many people who suffer from this. I had been referred by a friend with Fibro to go to a tanning booth during the winter and it helped immensely. I didn’t go until I was orange, just enough to feel the effects: 5-8 minutes. You can also take it in a supplement. Try that, in addition to all the wonderful meds I’m sure you’re already on.

    Like

    • Maison No 23 says:

      This is an interesting point. I have fibro too and regularly use tanning beds but never realised it was a benefit. I’ve been feeling particularly achey over the past couple of weeks and that might be related to the fact I haven’t had time to go.

      Like

    • Capricious1 says:

      Hmmm… interesting! When I was diagnosed with Fibro, I was also found to have a Vit D deficiency. I have always enjoyed tanning. The warmth is so relaxing in the winter. I haven’t gone for a long time because I don’t want to look like a raisin in 10 years. Don’t need to add skin cancer to my list either. That does sound appealing right now though.

      Like

  21. Following. My Dad has fibromyalgia. Thanks for the information!

    Like

  22. Sorry you have fibro. Learn to adjust your pace and do what you feel your body is telling you. I have fibro and am fighting polymyalgia rheumatica, a muscle disease where the arteries are inflammed. One day at a time is the key.

    Hoping the best for you this year. :)

    Like

  23. trupz says:

    Its good you are expressing yourself through your writings. Be positive and take care!!

    Like

  24. addercatter says:

    I’m right there with ya babygirl. I had my first fibromyalgia episode when I was 18. It was scary stuff especially since I was pregnant with my son at the time.

    I’m now 34 and have many other health issues… my team of drs believe Fibromyalgia is related to my Ehlers Danlos Syndrome.

    I have fewer pain episodes now because the treatments keep the skin sensations at bay, but the fibro fog remains.

    You’re not alone and your blog is reaching so many people. It’s important that we share the truth of our invisible illnesses and make other people aware of what it is and how it affects us.

    Keep moving forward and keep blogging
    You’re reaching out amd gettimg a response and that’s a really great achievement! Gentle hugs, Kat =^
    .^=

    Like

  25. Eva van Loon says:

    There are a (precious) few docs who think FM and hypothyroidism are one and the same. After all, not only are the lists of symptoms identical but the symptoms are similarly wonky–fine one day; at death’s door the next day. However, I don’t think those docs are looking hard enough. The thyroid in turn depends upon its buddies in the endocrine-gland family, and therein lies the clue.

    Like

  26. Something to consider: Fibro is thought to be a manifestation of Lyme Disease, if you live on the east coast even higher likelihood.

    Like

  27. Eva van Loon says:

    Hi, Tiredella I was diagnosed with FMS 21 years ago. thought I’d beaten it and then something worse happened. Coming out of Something Worse, I discovered some intriguing and helpful, deep connections with FMS (plus, my hunch arising out of FMS research I did 20 years ago with 100 female FMSsies seems to be borne out). If you’re interested, the book is called *Thyroid Resurrection: From dead to dynamic without drugs* and yes, it’s on Kindle and other e-book platforms. I now suspect that FMS can be beaten–by the patient.

    Like

  28. Michelle says:

    this looks close to what I have on my dealing with fibro blog site as well. Glad our info agrees!

    Like

  29. Abbs says:

    Have you tried massage? I’m a Licensed Massage Therapist, and have several clients with Fibromyalgia. I would recommend either talking to your doctor about massage, or try finding a Licensed Therapist in your area. Massage is a great way to ease the muscle pains, joint stiffness, reduce stress, and even help with the sleep disturbances.

    Like

    • tiredella says:

      I did try, thanks. Wasn’t my cup of tea

      Like

      • addercatter says:

        I tried that too, as well as acupuncture… it felt like they were trying to kill me. Putting pressure of any kind on a fibromyalgia sufferer… who sometimes is in pain because her clothes touch her skin, is not an appropriate treatment. I’m glad it may work for some, but those of us with severe cases just can’t handle it.

        Like

  30. risinghawk says:

    Very nice and informative. Well done! Peace . . .

    Like

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