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Old 03-01-2010, 03:52 PM   #1
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feeling whipped HB User
Angry Undifferentiated Connective Tissue Disease

I have been dealing with UCTD for four years now and have been taking plaquenal. It seems every day a new symptom appears. I have the symptoms of Raynauds, Sjogrens, Lupus, and some fibramyalgia. For the last three days I have broken out in hives. Needless to say I feel pretty rotten most of the time. Family and friends try to understand but noone really does. Part of the problem is you look well to others and they have no idea that at the time the bones in my entire torso could be killing me. Just need to vent and have noone who understands. Is there anyone out there who is dealing with the same thing?

 
Old 03-03-2010, 10:27 AM   #2
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Re: Undifferentiated Connective Tissue Disease

I know exactly how you feel.....I stopped expecting understanding....and don't you love that "you look so good" I sometimes just say "yes, I am going to look great in my coffin" then realize everyone is uncomfortable so I say its called "make up"....but the bottom line is no one is going to understand how you feel because they can't feel it, if they can't feel it they go with the visual and the need to want you to feel better so they compliment....we should be happy they bother....some people have no one....this does isolate us, the pain and how it has changed our life...we start to push people away.....but no one can really understand unless they are in our position and I wouldn't want that for anyone.....try to find something that keeps you a little up....music or a certain book or going out if you can but try to find something just for you that helps. Good luck

Gcb in pgh

Last edited by gcbpgh; 03-03-2010 at 10:28 AM.

 
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Old 09-16-2010, 01:32 PM   #3
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Re: Undifferentiated Connective Tissue Disease

Hi, Im new to this site and new to this illness! My rheum. gave me the dx of UCTD but she feels I may soon progress into polymyositis or SLE. My symptoms began very suddenly a few months ago and I totally understand your frustration. It is very difficult being sick, especially when others dont understand or cant visibly see what is wrong. I often take offense to the " well you look good" comment b/c it makes me feel like people are saying Im not truly sick, which I know is probably just me being paranoid. My whole life has changed, I had to stop working and apply for LTD, Im usually too tired to go out with friends anymore and I just feel like a different person. I have a wonderful, support husband and my family and friends have been great but its nice to talk with someone else going through this. Keep your head up!!

 
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Old 09-27-2010, 05:19 AM   #4
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Re: Undifferentiated Connective Tissue Disease

I know exactly how you feel!! I'm 24 and for the past 2 years my pain has just been getting worse. The constant fatigue, pain, and MRI's, x-rays, and blood tests have been a part of my daily life now for too long. I have significant degeneration in my right shoulder, right hip, left knee, right hand, and several discs in cervical and thoracic spine. I have slipping rib syndrome, endometriosis, interstitial cystitis and it feels like everything under the sun. So many ligaments and tissues are torn...but don't worry because "I look great!" I know I look fine, thanks, but I'm not lying when I say I'm literally just too tired to go out and do things. It just seems like more things keep being diagnosed and I don't know when or if it is going to end. I am too young to be living like this and I keep trying my best and pushing forward but it's really difficult when you feel like you just can't catch a break.

Furthermore, I feel like no one wants to hear about my issues anymore because there are so many, they have been going on for so long, and i desperately don't want to be one of those people that just complains all the time...or has nothing to bring to a conversation but medical updates. It has been such a long journey finding out the real source of all these issues, undifferentiated connective tissue disease. They think its either SLE or Mixed connective tissue disease but for now i keep getting bloods done every 3 months to check the status of antibodies. During this journey I have lost connections with my best friends because I dont want to be one of those complainers and I feel like i have nothing else to talk about. It has consumed my life and I can't break out.

Sorry I guess I needed to vent. This is my first time on here. Anyway, thanks. I hope you feel better and I know what you're going through.

 
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Old 10-01-2010, 05:37 PM   #5
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Re: Undifferentiated Connective Tissue Disease

So may I aske how your Doctor's came up with this diagnosis? I will probably get this diagnosis myself.

Did any of you have ANA's done and were they neg or postive.

I am seeing a Rheumy and being worked up for Lupus.......I have a feeling it is going to be a long time and a bunch of BS.........

May I inquire about your testing? Oleander

 
Old 10-02-2010, 06:41 PM   #6
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feeling whipped HB User
Re: Undifferentiated Connective Tissue Disease

Quote:
Originally Posted by Oleander53 View Post
So may I aske how your Doctor's came up with this diagnosis? I will probably get this diagnosis myself.

Did any of you have ANA's done and were they neg or postive.

I am seeing a Rheumy and being worked up for Lupus.......I have a feeling it is going to be a long time and a bunch of BS.........

May I inquire about your testing? Oleander

 
Old 10-03-2010, 09:08 AM   #7
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Re: Undifferentiated Connective Tissue Disease

I do not see your post.....Oleander

 
Old 10-11-2010, 12:04 PM   #8
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feeling whipped HB User
Unhappy Re: Undifferentiated Connective Tissue Disease

I have been trying to post but the site keeps kicking me out. Things have been difficult lately. I have been dealing with major gastro issues and have been tested and tested and tested. The last test was an Octreoscan which is a test for carcinoid. Just when you think it can't get worse, it does. Should know the results tomorrow. Other than that been having the usual aches and pains that medicine doesn't seem to be helping. Definately been feeling sorry for myself but I decided that I am allowed. Tried going to a therapist and she taught me to rub my hands together to get the negative energy out and then breathe deep. This may work for some but definatley not for me. Otherwise things are status quo. Signing off before the site pushes me off. My best to all

 
Old 10-11-2010, 12:14 PM   #9
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feeling whipped HB User
Re: Undifferentiated Connective Tissue Disease

I have been tested fully by a cardiologist, pulmonologist, urinologist, hemotologist, gastroenterologist, rheumatologist and now working with a surgeon due to a possible tumor. CT scans, nuclear studies, you name it, I have had it. With that said, I am fortunate enough to know that my organs, so far, are okay. Most of my problems are in my muscles and bones as well as my gastro system. Should have results of Octreoscan by tomorrow.

 
Old 10-19-2010, 09:12 AM   #10
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iris986 HB User
Re: Undifferentiated Connective Tissue Disease

I was just checked for Polymyositis this week by EMG and nerve conduction test after a Neuro Opthamologist said I had some type of myositis. Test were normal. I have muscle pain, joint pain, severe spasms, Raynauds, Livedo Reticularis, intermittent double vision and ocular migraines without headaches. I have also been diagnosed by Rheumy with UCTD. In the last 4 weeks I have had unexplained neck muscle swelling all the way around with weird mild headache and nausea.

 
Old 01-19-2011, 07:39 PM   #11
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Iodine64 HB User
Re: Undifferentiated Connective Tissue Disease

Quote:
Originally Posted by feeling whipped View Post
I have been dealing with UCTD for four years now and have been taking plaquenal. It seems every day a new symptom appears. I have the symptoms of Raynauds, Sjogrens, Lupus, and some fibramyalgia. For the last three days I have broken out in hives. Needless to say I feel pretty rotten most of the time. Family and friends try to understand but noone really does. Part of the problem is you look well to others and they have no idea that at the time the bones in my entire torso could be killing me. Just need to vent and have noone who understands. Is there anyone out there who is dealing with the same thing?
I originally was diagnosed with UCTD for about a year and a half. I then went to the medical books myself and found Polymyositis and under it I found ME! I went to the doctor and told him this is what I thought I had and sure enough the muscle biopsy, CPK, and EMG came back test book positive for Poly. I am not sure what you have but I can relate to the symptoms and the feelings that people just did not know how bad I felt. I looked great to them, but I felt like I could not go on. My Poly is very painful, not all are. If I laid completely still I was fine, but if I moved I just wanted to die. Medrol, a steroid, was given to me and within hours my life changed. I found I could go on living. It has been 25 years now and I am still on the Medrol. I have tried to get off, but my adrenal gland just won't kick back in. I hope they have discovered what is going on with you. If not go to the library and check out some medical books. I know the internet is a good source, but the books are good too. Good luck on the rest of your life.

 
Old 01-20-2011, 03:18 AM   #12
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jenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB User
Re: Undifferentiated Connective Tissue Disease

I'm going to just throw this out.

I was given this same diagnosis - UCTD - 20 years ago. I think it is a catch-all phrase that is used when they have no idea what is really wrong with you. It turned out that I had/have Lyme Disease.

If you're interested in seeing if you do as well, regular testing is useless as the labs don't know how to accurately test for Lyme and any doctor (other than a Lyme specialist, called an LLMD, Lyme Literate Medical Doctor) will be useless. They have no understanding of Lyme or how to treat.

You don't have to remember a bite or have had a rash to have LD, which is now in epidemic proportions throughout the world. Any biting sucking insect can transmit Lyme.

If you want to explore further I suggest you visit the Lyme board here.

Wishing you all the very best because I know, first hand, how frustrating that diagnosis can be.

Jen

Last edited by jenj770; 01-20-2011 at 03:18 AM.

 
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