The reality of a flare-up: Living with EDS & Dysautonomia
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.
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!
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.
Hello sarah, I am sorry it took over a year but I just wanted to reach out and to say I think you are right about blocking out memories, but I also thing EDS and chronic illness make us more resilient and that comes in to play when we face flare after flare. So I hope that your flares become less and more tolerable and just know that you are an amazing fighter and far from alone in this journey.
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
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!
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 !♡♡♡
Hi Erica!
I am also a nurse and also have EDS. I am SO HAPPY I came across your blog. It can feel so isolating having to explain to physicians what EDS actually is and how it affects patients. Thank you for reminding me I’m not the only one 🙂
Hi Carissa,
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So sorry it to so long to respond! I love to hear about another Nurse with EDS ! I think it gives us such an amazing perspective and connection with our patients. Hopefully one day we wont have to do the explaining to the Physicians! Thank you so much for reading my blog!
I have EDS, hypermobile type. Despite amazing my family with my flexability and ability to contort myself, as well as a childhood filled with sublexations, countless casts and braces, and severe joint pain, I didn’t receive my diagnosis until my mid-thirties. I am now 57, and passed EDS on to my only child, my son. I also have disautonomia, balance issues, gastroparesis and other GI motility issues, and teeth that have just crumbled away (except for those I was able to get crowned). I have had to teach doctors (like the one who examined me when I first applied for SocialSecurity benefits—a process that took nearly seven years, a horrible and complicated story unto itself). I started getting these flare ups in my twenties, finding myself crying & literally writhing on the floor from the pain in my stomach, yet I never went to the doctor for it; I reationalized them and was just grateful when they stopped, each and every time, never thinking that it could be something chronic and lifelong I’d be dealing with. I now get healthcare at Stanford University hospital and clinics; I finally don’t have to teach my doctors what EDS is, and many have commented on my case being one of the more severe cases they’ve seen in a hypermobile type patient. I also have to teach dentists about it because I, like so many of us with EDS, am quite resistant to local anesthetics, requiring more injections when recieving treatment as well as needing those injections repeated much sooner than other people would need more numbing meds. The most frustrating part—post-diagnosis—was trying to get my dentist to crown my molars after large fillings or even root canals were done to them, explaining EDS to him and the fact that my teeth he’d treated that way were going to crumble and leave the filling, which was exactly what happened within a year of each filling until I had no molars left. Meanwhile, I have a great internist who is himself frustrated trying to understand why I can’t get the majority of the cost for implants covered since I can’t wear my lower denture or upper partial for longer than a couple of hours because of the pain in my gums from them—a problem he believes may be due to my EDS. I’ll just have to win the lottery to get those implants at some point. 😀 I am completely disabled now because, at 54, I developed such severe scoliosis and cervical kyphosis that I went from six foot one to five foot six. After I had a fusion from T-4 to the pelvis and C-5 replaced with a cage as well as fusing C4 through C6, I am now about 5’7” and a little bit more. I still rationalize away when I have flare ups and I do yhe same for any other symptoms new or old, but if my soncatches me at it, he has me write in my phone what is going on and extracts a promise from me that I will bring it to my doctor’s attention at my next appointment (and if I don’t have one he insists I call and make one to discuss whatever it is I had been rationalizing away. I am blessed with him as a great medical advocate for me, despite the way I continue to try acting like nothing is chronically wrong with me. Thank you for sharing; it helps to just know there’s someone else going through what I do, as sometimes just no amount of making excuses for why I am in the middle of a flare up (other than just accepting it for what it is, as I’ll blame everything from my exercise routine earlier in the day to the weather!) will hmake it any easier to go through. It’s good to see I am far from alone.
So sorry it took so long to reply. First you are amazing for going through what you do and what you have gone through. You are not alone, you are never to blame for a flare, and I wish you the very best of luck with your medical journey. I truly understand the frustration with insurance and getting things covered, hopefully we wont have to fight as hard for things we need and deserve to increase our quality of life!
I was just struck by your comment about the dentist. They could never give me enough pain killer when work was done on my teeth. One dentist told me I fell into a category of really hard to number patients. Only a few years ago I was diagnosed with joint hypermobility syndrome. I’m learning to deal with it, but I had never thought it was also responsible for that.
I hope you’re continuing to see progress with your health.
I’m so happy I found your blog, I have had EDS and full-blown scoliosis since birth. 37 years. The type of EDS I have is a little bit of every class. The scoliosis has been fixed thank God to surgeries and a rod but I wish they would find something for our EDS I have learned to live and deal with the pain and the joint problems and everything else that comes with it. But sometimes I feel like I am 80 years old and get frustrated. I always thought I was alone.I do have family a great husband and friends who support me but I know they don’t understand completely. And I came across your blog on one of my worst days of a flareup. And you described exactly how it feels. Thank you for blogging
Samantha, I am so glad to have a chance to talk with you through my blogging, you are why I do it. I love reaching out to others and showing everyone, while we can feel isolated by EDS, we are very much part of an amazing community. I hope your flareups lessen or become more controllable! Thank you so much and keep being the warrior that you are.
I am currently being evaluated for Dysautonomia after a lifetime of being told its all in my head. It was always background noise before, I’d get used to that way of feeling, and I’d push through. I can’t push anymore. It has changed my life. The dizziness, fainting, migraine, visual disturbances, pain and fatigue…I came upon your post after searching whether or not Dysautonomia has “flares”. I feel like I’m in a constant loop of “ok” and horrible. I’ve been watching my diet so carefully as diet was huge for me in the past, but I can’t get a handle on what is causing these flares.
I wonder, do you get flares after good days of doing more? On a good day I want to do the fun things with my family. Also, I have 6 kids, two that use wheelchairs, and our life doesn’t allow for “rest” as the doctor would like. I feel like after a busy day I have a week of hellish symptoms.
I’m struggling to get to the bottom of what is happening as tilt tables are booked out until after the new year. I’m finally seeing neurology, GI, rheumatology in the next couple weeks. Cardiology was confident in Dysautonomia as a source of symptoms. Hints? Suggestions? Things that work for you?
I believe I have been struggling with EDS I’ve been misdiagnosed over the years and symptoms started in high school and 22 and diagnosed with rheumatic fever which is something I don’t believe I have. I am extremely hyper mobile and I just want to be properly diagnosed and educated. This article brought me to tears thinking somebody feels exactly the way I feel.Your thought process is almost identical to mine and being appreciative of everything so much more after is just beyond accurate to my life. My question to you is where can I find an EDS specialist and how can I get properly diagnosed?
Hello Dawn, I have sent you a private email!
I am thankful I found this thread. Some of the things written here sound like they came straight out of my mind. I was diagnosed with idiopathic dysautonomia but with a background in Biology I am convinced I have hEDS. Currently I only take 3 medications to help treat just a few symptoms but it is not sufficient for what I am experiencing. For hEDS I meet nearly every criterion not to mention I’ve had 4 major orthopedic surgeries between the ages of 25 and 31. I also found out in my 20s that I have scoliosis and it’s getting worse.
I get so discouraged because even friends and relatives don’t understand why I feel horrible at times. They are convinced it’s mood swings or depression. And although my flare ups can certainly cause those, they also cause gastroparesis where I can’t eat for days because of nausea and I throw up undigested food. Hyperhidrosis and complete temperature intolerance. If it’s 70 outside I am shivering but sweating but if it’s 75 I get so hot I’m ill. My muscles feel like they’re on fire and bruised at the same time. My joints throb. I get migraines and tachycardia where resting hr is 115-120 and I have low BP and palpitations.
I’ve seen endocrinologist, cardiologists, neurologist and despite abnormal test results, instead of further investigation, they simply say “we don’t know…”
I’d love to know who you have reached out to for a diagnosis; I requested a referral to a rheumatologist today. I think the worst part, especially during a flare up, is feeling alone, and those around you believing it’s “all in your head.” So maybe with an official diagnosis, I can bring more awareness instead of saying “well, I have this thing? They don’t really know…”
Feel better, friends!
Your post came up in a search for hypermobility flareups. I’m currently being evaluated for EDS as I have hypermobile joints that pop and dislocate easily.
I’ve been in flare up stage since last Thursday, it’s been almost a week. I’ve had bad flareups before but it seems with age, they get worse. Like you, I’m unable to describe how it feels because each one is so different.
Definitely starts off with stomach troubles for the first few days. Food passes right through me. Then it’s a low grade fever, some sinus issues. Thinking I have a sinus infection but I don’t. Then the pain and aches kick in.
It usually means at least a week or a few days of hardore rest and sleeping. Even pain meds don’t help. I find I just retreat into my own little cocoon and shut out the world during these times too.
Hi, I have been diagnosed with hEDS and pots. For the last month I have had severe joint pain that is different than my normal pain. It moves from joint to joint. My hands are swollen and stiff. Everyday is different. Is this an Ehlers danlos flare? It is so painful that my dr did blood tests to see if I had rheumatoid arthritis. The blood tests came back negative for rheumatoid but positive for inflammation. I never thought I would pray for my normal subluxation and dislocation pain.