The reality of a flare-up: Living with EDS & Dysautonomia

 In Adapting, Chronic Illness, Pain Management

Recently I had a terrible flare up, and someone asked me “what exactly does that feel like? How was a flare-up different from the usual pain of my Ehlers-Danlos Syndrome & Dysautonomia?” It honestly took me some time to put into words what going through an EDS & Dysautonomia flare-up means for me.

The reality of a flare-up: Living with EDS & Dysautonomia | Hypermobility Connect

It’s a very individual process; some people can feel them coming, others are blindsided every time. They affect everybody VERY differently, but one thing that is the same across the board is that when you’re in a flare up, it can be some of the worst days of your life.. every time.

 

What follows is my experience; others’ will be different.

 

For me a flare-up begins with a low fever, I try to play it off, “Oh you’re fine, it’s just cold in here today, you don’t actually have a fever.” Next is the pain. Every day is painful with EDS and medically complicated with dysautonomia, but a flare-up brings its own exquisite form of torture. It brings pain that makes me feel like my joints are being crushed and burned and pulled apart all at the same.

 

Still, I try to play it off in my mind, “Oh maybe I just twisted the wrong way, or I did walk a lot today maybe I’m just more sore than usual.”

 

Then the rash and the stomach issues seem to all come together. At this point, you would think I would give in; you think I would admit what I know to be true. Yet I try one last time “maybe you ate something weird, maybe your new face wash is giving you that rash, maybe, maybe, maybe, maybe….” At some point, I’m not sure when it is, I do give up. I give into the fact that another flare-up is upon me and the worst part, the scariest part is you just never know how long it will last.

 

How long will I have to suffer through this? How long CAN my body and mind do this?

 

I try to keep track and try to find any reason for them, but they come and go when they want. When it is here, it takes everything in my power to keep telling myself, “you are okay, this isn’t forever,” because from within the throes of a flare-up, it feels like forever and a day.

 

If this sounds like a hellish nightmare, that’s because it is. I will not sugar coat it, and I don’t want your sympathy. But anyone going through this could use your empathy; your understanding and your caring during these particularly hard times.

 

I will say one positive thing that comes from all this, every time you can feel a flare-up start to break, each time you feel the pain start to dissipate, you appreciate every single minute of life outside the flare-up more and more every time you get out of one. Everything is more beautiful each time, you can breathe a little easier, but in the back of your mind, you always know your time of peaceful bliss is limited.

 

Do you get flare-ups like this? Tell us what yours are like, whether they are similar or different!

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Hi, I’m Erica. First and most important to me, I am a Nurse, and I love what I do! Secondly, I have Hypermobile Ehlers-Danlos Syndrome and GI Motility Disorder.
Coming to terms with a chronic illness is tough and life-altering for anyone. Writing helps me process and work through it all, and I hope I can spread the feeling to those reading my blogs that you are not alone in your journey!
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Showing 4 comments
  • Sarah
    Reply

    I am in incredible pain today, and am currently trying to remind myself that it won’t be forever. But each time I have a flare, I feel like it has never been as bad, before. I have begun to think that we block out the memory of the more extreme pain once it passes.

    For to remember that, and to know that it is bound to return… is too much to bear.
    This burning, bone deep pain. It feels like a full body toothache. It is too much.

  • Mel
    Reply

    I have recently been diagnosed with benign JHS having had symptoms all my life and am 57. I have had all the expected issues including surgery for a giant para oesophageal hernia where my stomach came through my diaphragm into my chest cavity. I have led a full very active life but am in pain most of the time. At the moment the fatigue is incredible- knowing this is a flare up is helping me cope with the pain and fatigue

    • Michelle O'Sullivan (Occ. Therapist)
      Reply

      Hi Mel, I’m glad you finally got a diagnosis and therefore the beginning of an explanation of what’s been going on for you all those years. I think it’s really important to remember that this condition usually ebbs and flows, it’s permanent, but many of the symptoms like fatigue and pain can be more impermanent, changing with each day.
      Thanks for reading & responding!

  • Erica ortiz
    Reply

    I’m so glad you finally got answers and I hope that so your pain gets a little less and your flare up break that you can be more comfortable. If you can try to find what may trigger a flare up for you. But sometimes they just do what they want! Feel better !♡♡♡

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