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Still Standing

Friday, May 14, 2021

MAMADEE's Blog ~ SP Day 5502
Thursday, May 13, 2021 10:55PM

May is Ehlers Danlos Awareness Month

Ehlers Danlos Syndromes (EDSs) are a collection of genetic connective tissue disorders where the squishy and stretchy collagen fibers in the body (in ligaments, muscles, intestines and skin) are fragile and are easily injured.

EDS can cause pain, dislocations, clumsiness, problems with balance, digestion, blood pressure, heart rate, extreme fatigue and more. Managing this complex condition can be a full time job - finding the right combination of exercise, rest, splints, braces, physiotherapy, medication, diet, posture and lifestyle for an individual can take a lifetime of learning and hard work, with a lot of trial and error.


That's the "nutshell" version of EDS.
Since I mentioned it in yesterday's blog: FMS Day ~ I'm Still Standing!

I thought it might be a good idea to say a bit about it today emoticon

This is another thing my mom, the nurse, does not believe I have. She maintains this belief even though I've supplied her with TONS of evidence.

But, in the case of EDS, my mom is part of huge group of medical professionals emoticon emoticon
While their overall level of education may be quite high (large, extensive, etc)...

Their knowledge of EDS is miniscule when compared to my 60+ years of LIVING WITH EDS!
(although my getting that diagnosis came when I was 60 years old, after 20+ years of actively searching!) emoticon
Initially the diagnoses were: Fibromyalgia, Myofascial Pain Syndrome, Chronic Fatigue Syndrome, Parasympathetic Pain, Osteoarthritis, Carpal Tunnel Syndrome, and a few others I'm not remembering just now. With help from some really great medical people in the last few years my medical records were changed to reflect the difference knowing I have EDS brings (most of those diagnoses were dropped).
The FMS (Fibromyalgia) still stands emoticon (play on yesterday's title)
Criteria for FMS is different in some ways, though MANY symptoms do overlap. EDS does not require the "trigger points" that FMS has; and I have all 18!

But I'm not posting all this to have some sort of "pity party" or to say "woe is me" etc.
I'm just being realistic; and I hope I am doing a service in educating some about EDS.

Being realistic about chronic illness is not being negative

Having these chronic conditions is REAL
& challenging when you are striving to do all that's possible to get or stay healthy!
emoticon emoticon emoticon emoticon

FMS & EDS affect every moment of my life, one way or another!
So it is particularly discouraging when others in my life say or do things that invalidate these constants.

Like this image,
I'm not going to engage such ones anymore.
To me, they aren't even worth the calories burned in talking to them!

That said: I must be careful...
Take a look at the EXCELLENT LIST of EDS Exercise Tips!

There so much more I could share, but it's late (for me) and this is long!
But if you've read this, and yesterday's blog, you now have a little insight why that "I'm Still Standing" image touched me so deeply!


Til Next Time, (which I promise will be shorter)
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Member Comments About This Blog Post
    I read that doctors can not tell how much pain you are in-I know at times I have been in more pain that external factors seem to show. Sending you an e-hug.
    32 days ago
    Wonderfully informative article, and thank you. AND my applause for doing all your research to help yourself. THAT IS SO needed when you're just not getting the right answers for you from the medical community.

    38 days ago
    After your blog yesterday I googled EDS. I already was aware of the hidden pain of FMS.

    I just posted my blog referencing yours including that picture of the tree symbol "Still Standing"

    Here on Spark we support each other to continue "still standing" through the obstacles of life.
    I am very grateful for that
    38 days ago
    emoticon for sharing emoticon
    38 days ago
  • LOF7203
    Thanks for the info
    38 days ago
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