During our recent #CreakyChats, which was titled “The Symptom Symposium,” we asked members of our community to share their chronic health conditions, what surprised them about their symptoms, how they communicated their concerns with their medical provider, and how they felt when they learned that other people were living with similar conditions.
Perhaps one of the most relatable questions we asked was, “If you could, what would you tell your symptoms?”
- @menwarthritis: “Relax and chill out a bit!”
- @annabookwriter: “None of this is our fault, but sit the %#*% down sometimes, please.”
- @lucybball: “GO AWAY!”
- @TheSeatedView: “It’s been over 50 years and that’s long enough. Can you please retire? I’ve got things to do.”
Read more of the responses below and see which ones you can relate to the most.
Symptoms That Accompany Chronic Conditions
“I’ve been living while trying to thrive with systemic lupus erythematosus, lupus nephritis, fibromyalgia, and a few others for several years now. Some of the symptoms I experience are joint pain, widespread muscle pain, hair loss, kidney disease.” — @TiffanyAndLupus
“I live with a few chronic conditions, but migraine, IBS, and my newest diagnosis of psoriatic arthritis (PsA) are the most disabling and come with head-to-toe pain, fatigue, and brain fog (and more).” — @beth_morton
“I live with RA and Sjögren’s. They both come with pain and fatigue. Currently I am struggling with a burning mouth and altered tastes; along with a side of fatigue.” — @robintdake
“PsA, Sjögren’s, PI, CVID, OA, migraine, colitis, and more. Symptoms: you name it: Joint and muscle pain, temp dysregulation, dry everything, fatigue, insomnia at times, light/heat sensitivity, brain fog, nausea… The list goes on.” — @Back2backPT
“Fatigue, cognitive issues, and UV sensitivity are the worst symptoms for me. So far, I can cope with physical manifestations [of lupus] — and there are always new chronic or acute ones — but the gap between what I want/need to do and what I can actually do is the hardest.” — @katesattler
“Diverticulitis pain is usually more severe than RA, but on disease flaring will usually set off the other disease.” — @jgchayko
Your Most Surprising Symptom
“Maybe the temperature dysregulation. I can be dripping in sweat with the AC on in the middle of winter … but my hands will still be icicles … and the sweats can be so physically and emotionally draining.” — @buttahflyk
“The absolute unpredictability of what I can or can’t do on any given day.” — @Lwtorchi
“The most surprising symptom came from the Raynaud’s. Initially it was just cold, numb fingers that turned white or purple. Then came the extreme pain of fire shooting up and extremity and the digital amputation. Wild.” — @SynceNerd_Carli
“The unpredictability of it all. How things can change in a matter of hours or overnight. How you can be able to do something one day and then be floored the next. Pain and fatigue are my old ‘friends’ and they don’t play fair.” — @joknighty
Talking to Your Health Care Provider
“Openly, and often in detail. We have built a good relationship, that is always the key to communicating with my providers. It’s the most important thing, honestly.” — @jessupatlarge
“I focus on the most prevalent in the months before my visit. I keep a symptom journal and review it before my appointment, making a list of what I want to discuss with her.” — @robintdake
“Usually depends on which specialist I’m seeing. I tend to focus on things that I’m struggling with right now, and anything new that feels ‘off’ — always on the lookout for another autoimmune disease that’s trying to join the party.” — @joknighty
“I try and keep a list, especially of any new symptoms, so I don’t forget to mention anything. Even small symptoms can be important per my doc.” — @Kat_Hopps
Learning About Shared Experiences
“It is a fortune to be able to know the chronic life of other people, and it is useful to know how they face it. This helps to build a self-containment network to have a better quality of life.” — @Musicum
“Very validating. Like I’m not alone.” — @QueenOfOverIt
“Mixed. It can help normalize and improve isolation. But it can also be scary and stressful. Got to watch how much time I spend on this stuff.” — @DawnMGibson
“Learning about others’ symptoms helps me to know what’s out there and what to look out for, what can be done about them. But most importantly, it’s been very helpful with putting words to symptoms that I’m experiencing.” — @Xtel007
Join Our Monthly #CreakyChats
Our monthly, patient-driven Twitter discussion, #CreakyChats, explores topics that are important to the chronic disease community. During a one-hour moderated chat, we provide a space for people to discuss pressing issues facing the arthritis/chronic disease community. You don’t need to be a Twitter pro to join. During #CreakyChats we encourage everyone to share their strengths, challenges, and experiences — that is how we can help and support people as they navigate life with chronic disease.
