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Thursday, May 13, 2021

MAMADEE's Blog ~ SP Day 5501
Wednesday, May 12, 2021 10:40PM


This says so much!

And I even wore PURPLE from head to toe, all day today! emoticon

Fibromyalgia is a pain in the...
well, everywhere

fibro is not for wimps

Everybody hurts some of the time,
fibromyalgia hurts...

I have FMS, what's your excuse?

Isn't it funny how I don't look sick,
& you don't look dumb?

Fibromyalgia may be invisible...
but, I'M NOT!

My illness is real.
If FIBROMYALGIA was visible,
THIS is what it would look like!

It's a tough life to have so much pain every single day and yet others tell you that's not true! My own mother refuses to believe FMS is even real ~ and she's a registered nurse! She also says EDS isn't a real thing and whatever problems we think it causes are all just in our heads! (Me & at least 4 other family members do have EDS, medically documented ~ she still doesn't believe)
I've spent so much of my life being told what I know is real, really isn't! Decades of hearing it! Decades of fighting it! I have been treating it, learning how to live with it... with all my chronic and/or autoimmune and/or genetic ailments. But, for me, it's time to be more open and more vocal about it to the rest of my very large family! Mom may not like it, nor me; but that's nothing new. emoticon There are, however, lots and lots of younger family members who NEED to know about these ailments. Why should they have to spend so many years searching for answers?

Work on being in love
with the person in the mirror
who has been through so much
but is still standing.

(I saw this on the SP Friend Feed earlier - posted by @SISSYFEB48 - and it instantly 'spoke' to me! I had to save it! )

Til next time,

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Member Comments About This Blog Post
    emoticon emoticon Keep standing strong! emoticon emoticon
    35 days ago
    So sorry you have to live in pain. Thanks for sharing.
    35 days ago
    Brooklyn_Bridge linked your page to her blog.
    I understand fibro, as a former daily sufferer! It's a 'double whammy' disease. Sleep may help the sx, but the pain constantly wakes up the sufferer (worsening the pain). It's a vicious circle.
    36 days ago
    Thank you for this insight as I know little about FMS.
    emoticon emoticon emoticon
    36 days ago
    Wow, that sounds like you have a double whammy to your system.

    Don't be too hard on your mom if she was mistakenly trained to the beliefs she had. When my husband was in medical school he had a professor who told them that morning sickness was all psychological. Now of course it is well documented as having a physiological reason but some of those ideas about certain illness are still around. For a time FMS was considered to be more of a catch phrase for people who complained of generalized pain for which no cause could be found and almost named you as a hypochondriac. Now of course we know better and it can really be a debilitating disease. Continue to be that solitary tree growing strong in the face of adversity.
    36 days ago
  • HOLLYM48
    You sound like you are one strong person. Yes, so many times pain is not visible, but that does not mean it isn't real. As someone who had daily migraines for years until I could finally find a preventive medicine that worked, I can relate. Pain is horrible as it is all one can focus on.
    Stay strong. Great blog! Thank you for helping people to understand this condition!
    37 days ago
    And more and more people have very debilitating!
    37 days ago
    37 days ago
    What a great blog :) thanks for sharing your story and giving others a chance to share theirs :)
    37 days ago
    We hear you
    We believe you
    37 days ago
    Thank you, thank you, thank you! I still ask myself if what I have is really Fibromyalgia or something else. I also have Osteoarthritis (among other things), so I keep asking the doctors, Are you sure is not pain from osteoarthritis? After 3 times being diagnosed by 3 separate doctors, endocrinologist, rheumatologist, and GP. My best Spa Day or massage would be a tub filled up warm NSAID's! Could you imagine that! Whoa, it must feel like heaven. If it weren't for Cymbalta to the max dosage, I guess I wouldn't be able to move or carry on with normal life chores.

    Here are a couple of quotes I kept for me,

    Fibromyalgia is a pain in the butt.
    The neck, the toes, the joints, the legs, the arms, the hands, the feet, the muscles...
    Do I really need to go on?

    Ugh! No more pain for just one day, please!!

    I wake up tired.
    I stay up tired.
    I get to bed tired.

    I wake up in pain.
    I stay up in pain.
    I go to bed in pain.

    I wake up with hope.
    I stay up with hope.
    I go to bed with hope.

    I'm so sorry you're another Sparkie suffering the same damn thing, but on the other hand, wow, finally reading something I totally relate to. Thank you so much. emoticon emoticon
    37 days ago
    37 days ago
    Feel so much for you have some sort of chronic pain just grin & bear it now. With the pandemic which Dr do I consult?,
    37 days ago
  • LYNCHD05
    I am so sorry you have to deal with this. I have know others and at one time was rarely diagnosed. Thank goodness we understand it a little better now. I have a sister with lupus and she suffers with pain every day. I don’t think I know anyone stronger than her

    37 days ago
    I'm so very surprised that your mother should think the way she does. Two of my children have FMS and to me it's heart breaking to hear when they speak of it. Unfortunately there are people in this world that can't face what is happening.
    37 days ago
  • no profile photo CD11945874
    Believe me--I understand! Just because something is not visible to the eye, does not make it less real. We can't see 'depression' or emotional scars from years of abuse, but they are real. I do understand and empathize greatly, while living in chronic pain from an awful condition called ankylosing spondylitis. It traveled into my neck and hips--and the only thing visible to another is the stiffness ..... I too was told by my mother, "No one in the family has this disease or whatever you have." (so diminishing it as if not real) ... Not something anyone could possibly make up. (it is supposedly genetic)..... I join with you--shoulder to shoulder as we are both STILL standing through it all! I commend you for all you have been through and are sharing with the sparks community! ... Blessings to you---and trust me when I say, I feel your pain!
    37 days ago
  • PHOENIX1949
    emoticon emoticon
    37 days ago
    I live with FMS too and know what a challenge it is at times. It is rather demoralizing to have people dispute the diagnosis. I used to try to defend it, but now just brush them off by telling them to take that up with the rheumatologist who made the initial diagnosis! It's not important who chooses to "believe" in its existence. What IS important is how I can manage it. I'm proud to say I'm still standing too! emoticon emoticon

    37 days ago
  • MARGE116
    38 days ago
    emoticon hard to be in so much pain
    38 days ago
    Medical challenges that are NOT visible are soooooo tough to deal with.


    38 days ago
    I understand completely.
    So difficult to not only deal with a medical challenge like this, but to have your pain denied is so much worse.
    From a family member and a nurse - unbelievable!

    I had a similar experience with a childhood doctor who denied allergies and sensitivities.
    As a young mother, one doctor prescribed valium since it was "all in my head"
    Fortunately, I finally got allergy tests at age 28 and the doc called in all his colleagues to see what an extreme reaction looks like.

    39 days ago
    FMS is real and I feel your pain. Be kind to yourself. emoticon
    39 days ago
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