What happens in EDS when my body feels out of whack

My body's natural reaction isn't always constructive

Karen Del Vecchio avatar

by Karen Del Vecchio |

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While driving to work recently, I realized I was in one of my Ehlers-Danlos syndrome “twisted pretzel” phases. That’s what I call it when my body feels out of whack.

I often notice it when I’m driving and realize that I’m not sitting evenly. This time I felt that my right hip was higher than my left one, which typically means that the muscles along my rib cage are tight, pulling my shoulder down and my hip up. It’s not a great feeling.

The worst part is that it almost always sets off a domino effect. Because my hips are uneven, I don’t walk correctly. Over several days, that usually leads to pain in my knees or feet from the uneven motion. It also can cause back pain as my spine is pulled to the side because of the tightness in my ribs.

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Lockdown mode

When this happens, my shoulder goes into what I like to call lockdown mode. I’ll unconsciously start to baby my arm, which usually makes the problem worse. My body stops my arm from swinging when I walk, and instead it just hangs limply at my side like dead weight. I can still use it, but after so many years of intense pain from injuries before my diagnosis, once it starts to hurt, my body seems to revert back to the only thing that used to make the pain a bit better: doing nothing.

The problem now, though, is that my arm doing nothing actually makes it worse. Before, the intense pain would increase when I moved my arm. But now, I’ve made a lot of progress with it after years of physical therapy. If I don’t move it, it actually gets stiff and sore and can cause the pain to worsen.

My body always thinks the best way to protect itself is to minimize movement as much as possible when things get off track. In reality, that can actually make it worse. One way my body tries to do that is by tightening my muscles in an attempt to provide stability. While stability is a good thing, trying to achieve it by clamping down muscles often does the opposite, as it frequently pulls my body out of alignment, which causes more instability.

Sometimes when things like this happen, it can feel like I’m fighting against myself in an attempt to be as comfortable as possible. What my body thinks is best isn’t actually the case, so I have to be very deliberate about how I manage it when it tries to go into lockdown mode. It becomes a tug of war between my body and myself, and while I try, sometimes my body wins — and not in a good way.


Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

Comments

Heather Jarmacz avatar

Heather Jarmacz

Karen, so many of your posts sound like you are talking about my body. This lock down you describe is intense and frustrating. Why can’t I straighten up?? I’ve wanted to comment to many of your thoughts, this is the first time I’ve been able to.

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Karen Del Vecchio avatar

Karen Del Vecchio

Thanks, Heather! One of the things I enjoy most about writing here is the ability for people with EDS to connect and realize that we're not so different from one another - and that there are people out there who understand what I'm going through on a daily basis!

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Kristy avatar

Kristy

Yes! 100% agree with what you said. It's soooo hard to make myself move when I'm feeling awful, but I know I'm supposed to. But, also while that might ease my hips/SI, it makes my shins and arm feel so much worse! I'm getting going with PT again, so I'm hoping for some more strategies. I've got EDS, Mast Cell Activation Syndrome, and POTS. So, my body basically reacts wrong to everything! Lol. Oy. I'm at least glad to have my dx....took 19yrs! I so appreciate your articles. Watch out for horsebites! ;)

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Valerie A avatar

Valerie A

Oh wow, that all sounds very familiar. Since I had no diagnosis when those compensations developed, my brain went into denial mode where I didn't realize any of it was happening (except for the pain of course). My proprioception was defunct. It took years of surgeries, many styles of manual and physical therapies, and lots of reading to become self aware. Now I have techniques, machines, and a team of people (Pilates, massage, chiropractor, physiatrists) who keep me untwisted and level.

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Lucia avatar

Lucia

I am 80 years old. And exactly that that you have described happens to me as well and the problem has dislocated many many joints, vertebral joints, SI joints, hip joints, knee joints, ankle joints, and shoulder joints. But you have to keep moving and if you can figure out the right Radical stretches to do to yourself and if you can learn how to work your limbs in the water with a 360° resistance of the water as well as the buoyancy and the hydrostatic pressure and the turbulence currents, you will get yourself an amazing workout and look like a bodybuilder which I do . Also, you know you just don’t hurt in the water. You can’t fall down in the water you fall up. It works all of your muscles and your joints opposite from the way air Gravity work them. I had to become an aquatic physical therapist and master trainer to learn all of this. Had I known it 60 years ago I probably would live forever.

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Anne McGavin avatar

Anne McGavin

Thank you for your very interesting articles. Although my condition is not as bad as yours I still recognise many events/pains/readjustments to be made in my life as a hypermobile EDS sufferer. Thank you.

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Judy avatar

Judy

I got diagnosed with hypermobility EDS at age 67 using ultrasound because of arthritis. I live in the Midwest where no one cares to diagnose or treat Ehlers-Danlos. I recently saw a new medical doctor who is chief officer over many other family physicians and also trains new interns. She also said she was not interested in diagnosing or treating H-EDS patients. I think this is called "Medical Gaslighting" (just heard that today on a talk show.) Shame on the medical profession, cherry picking who they will help. I figure if I live long enough I will figure out my own treatment and this forum sure helps! I am working on peripheral neuropathy right now, all out of pocket of course, to try to avoid a wheelchair. I have a bad neck and back that is deteriorating. I also have common variable immune deficiency that might explain some of these lockdown modes along with 14 years of allergy shots. I was a member of EDNF and back then most all believed H-EDS was an autoimmune disease. I still think it is and even wrote to Johns Hopkins about it. The researcher seemed interested but his boss said no and that was the end of that. Most all the women who were involved at EDNF had at least one autoimmune disease and today I can say I do too, but getting a diagnosis of celiac disease, autoimmune thyroid, or MCAS is a monumental task. Are any others dealing with these issues, especially peripheral neuropathy in arms & legs?

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Judee avatar

Judee

I had 3 chronic Aorta dissections 22 years ago. Hours later in ICU I
My Aorta heart valve had to be replaced.
It destroyed my world as I knew it.
But I lived and after going to John Hopkins LSU. USB, MD Anderson, Cleveland heart Baltimore general I was diagnosed with unspecified Ehlers Danlos. Not vascular. But I have 57. on going health problems. Pain is unbearable on many days.
No doctor knows anything about the disease. I learned thru eds foundation it's not rare at all. 1-100 will have it.
We need to speak out more. It's real I was called a hypocondri act for years.
I'm 79 but am still doing as much as I can daily. Hobbies sure help I paint write and illustrate children's books .both of my adult children have it

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Anna Lisa avatar

Anna Lisa

I am 60 and just found out I have EDS. I have an enlarged Aortic Root. I have so many problems now because of the Doctors not really knowing much about this. 68 issues. I have 2 adult children and 2 grandchildren that have EDS, POTS and Autism. I was adopted at birth so I had to go see a Geneticist. Mine is also unspecified, extremely rare. Thank you for sharing.

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Maria Cantarero avatar

Maria Cantarero

Thank you, Karen Del Vecchio, for describing exactly what I go through almost daily. I thought it might just be me. I spend far too much thought and energy protecting my body from pain generated by one set of joints being out of wack…usually my hips, but sometimes my knees go first…or even my feet, like the time I decided to “fix” my over-pronated right foot. : /

My husband just (gently) confronted me with this reality, how I’ve pretty much stopped participating in anything that requires movement and ended up in the one chair that (usually) doesn’t cause my hips to slip away from my SI, fooling myself that I have a life because I spend so much time online.

My PT showed me that movement is the best way past the pain, and I know she’s right. But fear of additional pain keeps me voluntarily immobile. (I’m retired.). I have to get past that fear because what I’m doing now is not living.

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