undiagnosed rare disease

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How do you manage (or help someone else manage) kidney stones?

If you experience kidney stones or know someone who does, you know how debilitating they can be. Have you found a way to manage them? Maybe you drink a lot of water throughout the day, or perhaps you reduce the amount of salt in your diet. Whatever you do to help manage your kidney stones, or help someone else manage theirs (kids included!), we want to hear in the comments below! ⬇️

P.S. If you are struggling with kidney stones, or primary hyperoxaluria type 1 in particular (a rare disease that causes kidney stones), follow our #PH1 page (or make a post of your own!), or join our PH1 Support group to connect with others who understand.

#ChronicIllness #RareDisease #UndiagnosedRareDisease #KidneyDisease #KidneyTransplant #KidneyHealth #KidneyStones #PH1 #PrimaryHyperoxaluriaType1


Doctor With Zero Clue

I believe I have CIPD. Unfortunately, I’m currently dependent on a GP for specialist referrals. I insisted on seeing a Neuromuscular specialist - the guy made an appointment 4 months away(!). I have severe pain 95% of my time - there’s no way I can wait!

2 issues: how do I educate this guy about rare disorders? And is that what he went to med school for?
I’ve read that it’s critical to get early treatment in order to avoid permanent disability. This GP is acting as a human hurdle to treatment. If indeed it is CIPD, isn’t the guy somehow culpable for wasting time, thus contributing to the deterioration of my health?

I have diagnoses of Ehlers-Danlos Syndrome, Fibromyalgia, ME/CFS, Burning Mouth Syndrome, IBS, Hypothyroidism, Severe Degenerative Disc Disease, and unattributed neuropathy, tinnitus and heliotrope rashes.

Any wisdom/thoughts you may have are appreciated. Sending good energy to you.



#MightyPoets #ChronicIlless #ChronicPain #Fibromyalgia #ME #UndiagnosedRareDisease Not Mountain Roots

Not Mountain Roots

My love broke before the tsunami of pain today,
Her tears like rivers uprooted from their beds.
My love was torn by shame at her weeping
When there should be no shame, nor blame for breaking

Before an unstoppable tide of pain
Or from any power that one can't contain
Tears are cleansing, they uncoil the knot
That one's pain has been winding though one has forgot

In one's tower of pain, one's fortress of will
That pain has a power and can shatter one still
Even though one endures, even though one maintains
One's smile 'gainst the torment, the pain still remains

So feel not shame at bending or breaking
We are only human, not mountain roots
Take comfort in friends and loved one's caring
And plant on one's way understanding's shoots.

Tony Demoncy



Another Day / EMG #emg #Disability #Doctorvisits #tests #Pain #PatientAndDoctorExperiences #AutoimmuneDisesase #UndiagnosedRareDisease #StiffPersonSyndrome #Lupus

Mouth dry, skin slick,
another form of
excitement “they” say.

Change into the coarse garment,
the doctor saunters in.
“You are going to be fine”, they say.
“It won’t even pinch”, they say.

Yet, as needles enter,
fire is set upon your skin.
Jolts, jumping, jerking,
“the easy part is over.”

“We are really ready to begin.”

“Lay still, lie flat, don’t move.”
While shards of glass enter skin,
bruising, burning, blistering.

“Don’t cry, it’s all done.”
Remember, today is
just another day.



My “normal”

For the past couple years, my normal started out as going to physical therapy for something called costochondritis, for the first few years of my short life my knees would lock and i would fall crying, no kid should have to experience this stuff. Let alone anyone.
Let’s start out by the past two years has been when the symptoms started flaring up you could say.
I could dislocate my hip and turn my arm completely around (still can) I was actually a quite active person all until costochondritis started
My chest would hurt and feel like someone was pushing down on my chest roughly
I’ve had anxiety for a long time but the past few years have been tougher.
Being active and running and walking far distances is what I WAS good at and loved to
Do. After going to the doctor he diagnosed me with costochondritis. A few months later I had
Terrible stomach problems and would feel bloated after every meal, I used to have the issue of being nauseous after every meal for 3 days in a row, migraines and head aches became more frequent. And hey, I’m not claiming that I hated my life. I’ve also had a sensitivity too tomato’s and salsa since I was young. Ehlers Danlos Syndrome only became a possibility when my mom started researching my symptoms.
(Keep in mind my whole family has similar problems and symptoms and my mom can dislocate stuff and has high flexibility, and has had terrible problems for a very long time.
At age 12 she had a back surgery, by age 19 she couldn’t keep down anything but about 4 foods.
She had been to doctor to doctor for everything and put on so many prescriptions it made her worse sometimes. My brother has chiari as you may have heard of it.. Starting May 1st is ehlers Danlos awareness month and my official journey to being diagnosed, that’s the starting point where all my tests start again. (I’ve had a few blood tests and my doctor is aware of my issues and is gonna try and help diagnose me.)
So starting May 1st I’ll be also making an account on Instagram dedicated to chronic illness to spread awareness for rare diseases. #EhlersDanlosSyndrome #ChronicIllness #UndiagnosedRareDisease


Hope is a strong word

Being #UndiagnosedRareDisease is such a stressful situation for me and my family. I'm still trying to find a way like you did, and still feeling alone. Not having a diagnosis is terrible because I can see it in people's eyes what they are thinking. All I wish for, is do find a way to make it through all my fears and I wish all the best for you and everyone dealing with #RareDisease . It's hard to believe that everything will gonna be OK...