Fake Conditions (not fibro) but related i guess

A doctor told my besides fibro, i have inter-connective tissue disorder, sounds so fancy, and yet so fake like a nicely huge word someone with a tad to much pride made up to make them feel better when things that can't be pinpointed since "i don't know" seem to be words feared by all doctors. I was gifted and cursed by hyper mobility and here even now can lift my legs above my head, though i guess the curse is no matter how i streach it never relieves the tight muscles. It made me a great martial artist i have never been caught in a hold i couldn't escape, always love to see that look of shock when they let the guard down and i turn on them. But i.c.t.d. strangely little tiny muscles we all take for granted in hands feet every where like to swell bruise and hurt in ways i don't know how to explain... Being lucky i think i got a very nice exam from a rhuma. he is head of the dept. at the collage i go to, brave man for shockingly i actually heard i don't know sumi-chan never seen this, but you are free and clear of my specialty. except for the hyper flexibilty that forces my to keep very strong for back surgery looks aweful, and i don't want to hurt like that. This is fine no more please.

Anyone ever heard of this strange disorder?

The bruises on my hands are bad enough i wear gloves alot long sleeves in fact kinda funny cus of my tiny frame, and short hair i get called sir all the time <laughing> i don't mind many doctors and scholars choose to be this way, it's actually rude to ask their gender. But somedays i feel like i am hiding some evil dark secret, maybe in ways of my own i am. but i am so sick to trying to explain the strange bruises mainly on my joints to people that hiding was just finally easier.

So what does one do? Most mornings i cry thru the pilates take my never relieving shower suit up and push on.

Ever feel like you are watching your life from outside of you?

And yet never quite knowing the details to why you are who and what you are?

Hi watashi, I have fibro along with a connective tissue disease, which is an autoimune
disease. At first my rheumy diagnosed me with UCTD, undifferentiated connective tissue
disease meaning we know you have a connective tissue disease such as, lupus, scleroderma,
RA, polymyositis, dermamyositis or mctd; we just don't know which one.

It turns out that I have an overlap of scleroderma, lupus. and RA and that disease is called
MCTD meaning mixed connective tissue disease. My diagnosis was confirmed through
countless bloodwork and a biopsy. Scleroderma is my dominant disease in the overlap.

I have never heard of the term inter- connective tissue disease. There are overlap CTD
lupus and RA are sometimes reffered as Rhupus.

Connective tissue diseases are very real. Because they are autoimmune diseases the body
makes antibodies against its own cells. I take a low dose chemotherapy medicine called
Methotrexate once a week to slow down the progress of the disease. The med is an
immunosuppressant, so I have to be careful not to get an infection. I have had two bone
marrow biopsies in the last six months.

Getting a diagnosis is a long progress because there is many overlap symptoms in the CTD's.
Your rheumy will be running ANA tests along with antibody profiles, checking your CBC, CMP,
sed rate, and looking for rashes,joint swelling, blood disorders, Raynauds and other things
to help determine what you may have. Be patient it takes time. Sometimes the disease
stays undifferentiated.

Wishing you the best

Robin

watashi, I am sorry if I scared you, that certainly was not my intention. The fact that you have
not had any abnormal bloodwork is reassuring. I am hoping your doctor will be able to rule
out that possibility.

Hugs

Robin

Watashi, Your rheumy should be doing blood work on a regular basis. Now you mention that
you have had abnormal blood results 2-3 times a year. Antibodies wax and wane, meaning
they don't always show up every blood test; that is why it is important that you continually have your blood checked.

The bruising you have, could be a result of low platelets, or inflamation. Having complete
blood counts done on a regular basis is important too.

Finding a good rheumy who knowlegeable in autoimmune diseases is also important.
I suggest calling your doctor to set up an appointment to discuss all your concerns. Bring a
list of all your symptoms. Take pictures of bruising in case they heal before your appt.
Being proactive in my healthcare gives me some feeling of control, which is good for me.

Last but not least, do not give up hope, a positive attitude does go along way with helping
you cope with any illness. Believe you can!

Robin