Undiagnosed
Join the Conversation on
Undiagnosed
Undiagnosed
22.5K people
0 stories
1.6K posts
About Undiagnosed
What's New in Undiagnosed
All
Stories
Posts
Videos
Latest
Latest
Trending
Post
I'm new here!
Hi, my name is lauraburgstaler. I want to
#MightyTogether #Anxiety #Depression #Migraine #SystemicSclerosis #Scleroderma #CRESTDisease #AutoimmuneImmunodeficiency #Undiagnosed
5 reactions •
1 comment
Post
See full photo
What’s your experience with functional medicine?
As defined by the Institute for Functional Medicine, this approach to health is based in systems biology and focuses on identifying and addressing the root cause of disease — from inflammation to vitamin deficiencies. It takes into account one’s genes, environment, and lifestyle (including stress management, nutrition, and movement), but it also blends conventional medicine with more “traditional” or complementary practices and approaches.
In the most simplistic terms, functional medicine treats a patient as a whole person as opposed to dissecting one’s health organ by organ, symptom by symptom.
I’m about to see a functional medicine doctor for the first time after my rheumatologist “dismissed” me from her care after diagnosing me with lupus less than a year ago. (To be clear: I absolutely love her, but her hands are a bit “tied” when it comes to insurance approving the next tier of meds, and I have a dangerous history of medication side effects.)
And like many of you in this community, I’ve had a lot of triggering experiences across the spectrum of holistic practitioners (I once saw someone who wanted me to stop all of my medications cold turkey with absolutely no tapering plan). One of the biggest cons to seeing a functional medicine provider is cost, as it’s entirely out-of-pocket and not covered by my insurance. On the other hand, they’ve been incredibly thorough, validating, kind, and responsive. I still can’t get over the fact that when I call their office, they always answer and help me immediately. (No voicemail? No repeated attempts to communicate via the patient portal?) I’m cautiously hopeful that they’ll help me move in a better direction — I don’t have a ton to lose at this point.
I’d love to hear any tips, advice, or general experiences with functional medicine. What have you tried? What’s worked? What happened?
🤓 P.S. I have found this website to be super helpful when doing my research: www.ifm.org
#Spoonie #Lupus #Migraine #ChronicPain #ChronicIllness #RareDisease #CheckInWithMe #Fibromyalgia #AutoimmuneDisease #Undiagnosed #Caregiving #Cancer
38 reactions •
23 comments
Post
Diagnosis
As some of you know, I have really been struggling with my hands lately. I have cerebral palsy and have had chronic hip pain for the last 7 years.
My rheumatologist thought I had fibromyalgia, but I don’t. My rheumatologist worries that I might develop scleroderma. My ANA is extremely high, but I do not have rheumatoid arthritis. I have progressively been losing function in my hands and my knuckles turn purple at times. (The high ANA and pain in my hands are not related to cerebral palsy.) My rheumatologist said this could be consistent with arthritis.
It hurts to write, type, and do many other things. The hip pain was bad, but my mentality has gotten worse as my hands have lost functionality.
Has anyone else experienced anything like this? At times I want a diagnosis so this pain could be treated.
7 reactions •
7 comments
Post
Reminder
Just a reminder to my fellow disabled , chronically ill and or mentally ill folks that you are no lazy. Not lazy at all. You are putting in every piece of what you have into surviving in a world that is not made for you in a body that is just trying to keep you alive somehow. The actual people who are lazy are the ones who are too lazy to educate themselves about disability and chronic illnesses. You are not at fault. Not one bit. The people who are telling you you're lazy are the lazy ones themselves. You are not lazy. Not one bit. And you are allowed to feel grief and cry and complain about your life even if there's people who have it worse.
#Depression #Fibromyalgia #ChronicIllness #ChronicPain #ObsessiveCompulsiveDisorder #MentalHealth #Undiagnosed #ChronicFatigueSyndrome
(edited)
6 reactions •
1 comment
Post
See full photo
What do you often research about your health?
One thing I learned early on in my health journey is that most appointments with health care professionals only scratch the surface of everything patients or caregivers should know.
Sure, appointments may cover a rundown of symptoms or results from scans or bloodwork; but they don’t delve into the intersection of other diseases, strong suggestions for lifestyle changes, or ways to better navigate family dynamics.
What do you often search for or research when it comes to your health?
#MentalHealth #ChronicIllness #Disability #Cancer #RareDisease #Autism #Parenting #Caregiving #CheckInWithMe #Undiagnosed
10 reactions •
9 comments
Post
See full photo
When was the last time you felt like a doctor believed you?
In a lot of ways, it’s heartbreaking that we even have to ask this question, but we also know it’s a pretty common experience for Mighties to feel dismissed by health care providers and professionals.
So we’re curious about the good experiences you’ve had lately, no matter the type of provider or specialty. Who believed you? Who validated your pain, symptoms, or struggle? Who didn’t question your lived experience?
It’s always worth saying: You deserve to be believed. It should be the built-in bare minimum of care. We see you.
#MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #CheckInWithMe #Undiagnosed #Caregiving #Cancer #Therapy #Suicide
42 reactions •
17 comments
Post
Hi! I’m new here!
Hi my name is Rachel. I am currently 12 years into being diagnosed with #EhlersDanlosSyndrome . In the last 2 years, my symptoms have increased significantly, I was so blessed to find groups that understand what I’m going through. #Undiagnosed #classicEDS #MentalHealth #Anxiety
10 reactions •
2 comments
Post
Very intense neck pain
#Undiagnosed #neck #OccipitalNeuralgia ?
I’m hoping someone has experienced this and can give me some insight; my doctor can’t figure it out.
I have recurring, intermittent pain just behind and below my left ear, at the side of my neck and just above jawline; usually in place but sometimes I can feel it radiate down my neck and into the top of my shoulder a little as well. The pain is incredibly intense, like a pulsing sun exploding over and over in the same place, in 1-2 second intervals.
Sometimes it lasts for five seconds, sometimes for hours. No known triggers or consistency. No pain inside the ear at all and no apparent physical markings.
(edited)
