Fake Conditions (not fibro) but related i guess

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watashi
Regular Member


Date Joined Sep 2009
Total Posts : 84
   Posted 9/20/2009 2:21 PM (GMT -7)   
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?

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 9/20/2009 2:43 PM (GMT -7)   
There is such a think as connective tissue disorder.  I think one of our members has this problem.  Hopefully they will see your post.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/20/2009 7:22 PM (GMT -7)   
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
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


watashi
Regular Member


Date Joined Sep 2009
Total Posts : 84
   Posted 9/20/2009 7:37 PM (GMT -7)   
Ack! your scaring me, they have never defined what it is, now it has been almost 4 years yet not a single real abnormal blood test... They tried me on the chemo drug, but i am litterally child sized, and haven't kept much food down for 2 of these years and when i took the drug my weight dipped below 60 lbs. and the quickly took me off of it. maybe i should recontact the ra doc again... Thanks so much Robin, this will have to take a bit more of my attention.

Satsumi

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/20/2009 8:25 PM (GMT -7)   
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
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


watashi
Regular Member


Date Joined Sep 2009
Total Posts : 84
   Posted 9/20/2009 11:44 PM (GMT -7)   
I don't feel hopeful on that one his favorite thing to say is blah blah something about mixed tissue ooohhh opps, i really checked out like 2 years ago. Finally decided the swelling weird mysterious bruising on well any joint i can move, which is most anywhere darn flexibilty anyways would just have to be a part of my normal. Sometimes I wish they would decide i have had abnormal blood work but a month later it will be perfect as ever... It's weird because the blood work is only abnormal like 2 maybe 3 times a year... think they lost my last giving it's been almost 2 weeks with no call. Then again my doctor is mad at me on a personal level right now lol. he will get over it. I just had to ask since my brother pointed out this morning how blue the joints on my hands wrists ankles and toes are right now. To me he is just a child and i hate for him to worry, I think he is still blaming himself for the kick that started this path in life. I know it's not anything to do with him, but watching him beat himself up and try and treat me like glass is more pain then anything. We still spar it's good work out but it got me thinking after flinging him like a doll, and i know it didn't feel to good he bearly will tap me. And i am bugged, that kind of pain is a kind of nice distraction, well when i can feel it anymore alot now every injury is really numb minus joints that swell and fibro pain. he's not brave enough to hit a trigger point thankfully. It's like taking my favorite hobby away, no not beating him up really, but martial arts since i have been at it for 28 years now i can't find a reason to stop it's a time where i am truely challenged and free.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/21/2009 5:47 AM (GMT -7)   
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
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 9/21/2009 7:29 AM (GMT -7)   
Watashi, if what you're looking for is a definitive diagnosis, sometimes a medical geneticist is a good place to go. They're pretty good usually at diagnosing rare constellations of symptoms. I know there are some that include hyperflexibility and hypermobility of the joints that are quite rare and may not be in the knowledge base of many doctors.
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 

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