A mysterious EDS pain flare-up surprises me yet again

My symptoms can increase unexpectedly and for no discernible reason

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Last week, I was surprised when building a ramp for my dog didn’t cause my pain to flare up. This week, I’m shocked because I’m in the middle of a pain flare, and I don’t know why! That’s pretty much the epitome of Ehlers-Danlos syndrome (EDS). It comes and goes, flares and calms down. Sometimes I know why, but other times, I just have to shake my head and roll with it.

For several days I could feel myself getting more and more sore, and I could tell it was the beginning of a pain flare-up. I feel different types of EDS pain, and while it’s difficult to describe, I think most people with EDS will understand what I mean. You can just tell.

Right now, I hurt all over, but the most aggravating spots are my back, ribs, and shoulders. My shoulder is a common flare point for me, as I have a lot of damage from an old injury sustained prior to my EDS diagnosis. Sometimes I feel pain in this area, but other times, like now, it just feels numb. I don’t mean numb as in tingly, but rather being unable to feel the pain.

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An illustration of a physical therapist stretching a patient's leg.

Signs of nervous system dysfunction common in hEDS, HDS

During these times, my arm hangs like a dead weight at my side unless I deliberately move it. This is a long-standing protective mechanism that my body developed when I was a teenager. My arm doesn’t move or swing, even when I walk, unless I specifically remember to do so. If I’m in really bad shape, I’ll occasionally hold my arm in front of me like it’s in a sling.

So even if I don’t feel traditional pain, I can tell my shoulder isn’t doing well if my arm stops swinging.

Another odd sensation

My ribs might be one of the stranger issues I manage. I also have a lot of damage in my back, and years ago I learned that when my back muscles get inflamed, it can carry over into the muscles that wrap around my ribs and torso. When they get especially tight, it can feel like I’m wearing a band around my chest, and when I take a deep breath, I can feel my ribs push out against the tight muscles. It’s almost as if I were squeezing my ribs with my hands.

For a long time, I wondered if the tightness was related to my asthma, but realized that wasn’t the case when bodywork helped relieve the pain and tightness. Over the years, my massage therapists have greatly improved my comfort level, so I don’t deal with this issue as often. When it does happen, my therapists know how to combat it, and I feel relief almost immediately.

Life with EDS is full of ups and downs. Sometimes I have stretches where things go well, and other times I’m dealing with pain flares. It’s simply how life works for me. I used to get extremely frustrated by it, but now I just try to get my flares under control and move on. Getting upset only makes me more sore, thanks to the connection between my emotions and my body. So I do my best to push through, using my heating pad, massage, and some ibuprofen, and keep on rolling.


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

Debra Campbell avatar

Debra Campbell

Reading this helped SO MUCH!! I'm glad I'm found it.
How you explained the tightness in your chest resonated with me. It was the perfect way too describe how a felt not long ago. The pain (and how hard it was to breathe) had my mom calling 911. (we don't do that often!!)
I have costochondritis & have had pleurisy flares but this was different. It felt as if my ribs were broken or had subluxed; the pain was mostly in my chest and though my back hurt, I could tell the pain was not connected to my chest pain.
What was really weird though, was when the intern (I believe that's what he was; who KNEW about EDS) checked for pain in other areas, definitely found some.
When he checked my ankles I couldn't hold back the tears; it felt as though he was literally crushing my bone.

I know I ended up off topic from the chest pain, but all of "different pain" happened at the same time as the chest pain; I assume it was all connected somehow, however it was definitely a weird combination.

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Heather mcpherson avatar

Heather mcpherson

Hello, just watched video,Dr.Hellen Langevin researching stretching and inflammation resolution on Youtube Harvard med. and Women's hospital.an older study but excellent information. move right away to prevent fibrosis.

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Tracey Price avatar

Tracey Price

Karen. Once when I had pain in my chest, the muscles or top and or skin which progressed quickly I went to an evening hospital clinic. I was lucky to be the only patient there and had a tremendous physician who listened to me and thoroughly discussed possible problems or issues. It has been many yrs and can’t remember everything but he thought it could be Acid Reflux. I made an appointment with the specialist and she said that it was acid reflux. It astonished me that she also said often women cannot wear bras because of the pain. She told me to go purchase probiotics on my way home. (Do not pass go. Do not collect $200.) She was right it gave me instant relief. Currently I have also felt the need to remove my bra, once in a while. How can acid reflux affect the, is it mayo fascia? I don’t know but it happens to me. Have you looked into acid reflux or discussed taking probiotic with your doctor? I would never believe how acid reflux could affect seemingly unrelated parts of your body. Acid reflux can be an EDS related illness/symptom.

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Marietta Winters avatar

Marietta Winters

EDS consists more of dislocating and sublexing along with stretchy skin. Also certain types cause extreme pain, heart complications and other muscle problems. I have had things that are supposed to be stable dislocate; ribs, tailbone, ect.

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Margaret Bowerman avatar

Margaret Bowerman

At present I have shoulder , neck arm problems my right arm if it gets around my side I have to lift it back to help keep the painthen ldown ,,,,lower then severe,,,,,,,,the pain in shoulder and neck goes up in my scalp,,,, my pain in most of my body is every day ,,,from there it just gets worse, ,,flare up I find hard to understand ,,,,,thanking you ,,,,,,,if you find this hard to understand ,
Then I agree eds heds that's what it's like , thankyou for your story blessings Ⓜ🙏❤

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Nikk avatar

Nikk

This sounds awful, and honestly right where I am right now. I have hEDS and I was thrilled last week when I was able to do way more than normal, but this week I'm truly down the pain well, with little relief in sight. I'm concerned if I stay down too long with injuries my POTS will get worse. I hope we're both able to hang in there and wait these flares out. Best to you, and thank you for sharing this!

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Kristina avatar

Kristina

It truly sucks when you go to reach for something and you get seiring pain in the shoulder joint and the first reaction is to let the arm dangle dead like until you can get help popping it back in.

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