I have just been diagnosed with UCTD, having gone to the doctor with pain in my hips that happened after a 5-hour walk and did not go away. I also mentioned back stiffness when getting up from a sleep, and stiffness in the hips when getting up from sitting. He did a variety of blood tests, ruling out rheumatoid arthritis but showing up antinuclear antibodies.

Many years ago I was diagnosed with Hashimotos Disease ( resulting in hypothyroidism) and was put on daily thyroxine. My thyroid function tests have come back in the normal range ever since.

I am looking for other people who have been diagnosed with this condition, so I can get some sort of idea of what I might expect. I have no other symptoms, but over the past few days more parts of me have gotten sore - shoulders, one joint in my right hand - so I'm wondering where it is going to end! The GP sounded positive - that most likely the symptoms will go away in a few weeks, although they may flare up in the future. Has anyone else been down this path? If so, how are you doing?

Well it doesnt take a 5 hour walk for me to feel like that. I am getting where I feel like that 24/7. It sounds like you are ordinarily very active and that you will be doing pretty good once your soreness wears off. I wish I could add something.

I have just been diagnosed with UCTD, having gone to the doctor with pain in my hips that happened after a 5-hour walk and did not go away. I also mentioned back stiffness when getting up from a sleep, and stiffness in the hips when getting up from sitting. He did a variety of blood tests, ruling out rheumatoid arthritis but showing up antinuclear antibodies.

Many years ago I was diagnosed with Hashimotos Disease ( resulting in hypothyroidism) and was put on daily thyroxine. My thyroid function tests have come back in the normal range ever since.

I am looking for other people who have been diagnosed with this condition, so I can get some sort of idea of what I might expect. I have no other symptoms, but over the past few days more parts of me have gotten sore - shoulders, one joint in my right hand - so I'm wondering where it is going to end! The GP sounded positive - that most likely the symptoms will go away in a few weeks, although they may flare up in the future. Has anyone else been down this path? If so, how are you doing?

I was diagnosed with UCTD 10 years ago. UCTD is a term for connective tissue disease that is unclassified or hasn't yet declared itself to be something that is classified, such as Lupus or Shogrens. I also have CFIDS and Hashimotos and it is often difficult for me to separate out these three, if, indeed, they are separable! What I mean is that I do have "flares" and I suppose sometimes they lean more toward the UCTD symptomology and at other times CFIDS or Hashimotos. However, all of these illnesseses also overlap in symptoms, so you can see my dilemna. One difference from you is that I did have ANA antibodies. Have you considered that you might have Fibromyalgia, or a combination of Fibro and CFIDS? If I were you I would do a search on google for both of these and also check out the CFIDS Foundation web site.

All the best,

Peregrine

Thankyou soooo much for your replies. Just knowing there are people out there who understand and might know something more, is a huge bonus. I wasn't aware of CFIDS, so I took a look there. I think I can rule that one out, at least for now. I'm not tired, just sore in those blasted hips, legs, back, shoulders.....the list is growing by the day. It is so weird, cos I ask myself are some of these pains psychosomatic, because I have only just been diagnosed? But I'm pretty sure the answer is "No". I don't think these weird pains could be "in my head". Today I seem to be getting pains in whichever parts of my body I am using. The hip pain is constant, but I started to get pain in my hands today, from driving the van. And in my shoulder, when I climbed into the van. I feel like an old woman!!!!

Thanks for the advice, Peregrine. Can you tell me more about how your disease has progressed? The 5-hour walk was an aberration, I went to a trade fair and had to do all that walking. I usually only walk for about 1/2 hour a day. But boy I wish I hadn't done it, cos I've been sore ever since!

I think I can rule out fibromyalgia, as I do have the ANAs and I don't have chronic fatigue or any of the other symptoms. I guess it is going to be a wait-and-see issue, but I hate having to wait, not knowing what will come. I prefer to have some idea of what might happen, and then if it doesn't, that's a bonus!

So thanks again, and any feedback on what is happening, or did happen to you, would be most appreciated.

Sincerely
Lesley from New Zealand

Hi Lesley, I will tell you my story. I am a 36 yr old mom, I was in good health, thin, no problems really. Last Jan, within one week, I thought I was dying. I developed joint/muscle pain, burning feelings on the sides of my thighs, chest pain, muscle twitches, etc etc etc


I had tons of bloodwork done, I found I had high thyroid antibodies and was DXed with hypothyroidism, and read that this was often the cause of my ailments, I was thrilled, knowing what was wrong. I started on thyroid meds. I also had a low ANA of 1:80, but they said it was most likely due to my thyroid.

I felt better for a while, but never great. this last winter I started feeling worse again and took it upon myself to go to a Rhuemy DR. He examined me and tested my ANA again....it's now risen to 1:320..and he said my joints were very stiff for my age.

He DXed me with connective tissue disease and feels the ANA would not jump this high due to the thyroid. he started me on vioxx but now I am on bextra. I feel in my gut that I have Lupus but the other symptoms have not come out yet. I am on the Lupus board here a lot.

HUGS to you. Do you know the number of your ANA and the pattern?

Hi again, Lesley,

My understanding is that connective tissue disease is also accompanied by fatigue, as well as a host of other symptoms. For instance, when I am in a "flare" I can also develop problems with every other bodily system, such as GI, circulation, etc. In addition, mouth ulcers and vision problems are not uncommon. Are your symptoms mainly muscular or joint related? If so, I wonder if this would fit the connective tissue disease profile.

After 10 years, my "flares" are now fewer and farther between. Also, they seem to be less severe than they were the first 5 or 6 years. However, I still have to be careful that I don't do anything to bring one on, such as exercising too much or getting too fatigued or stressed out. Certain smells in the environment can also bring on a "flare" for me, especially perfume, paint and other strong odors.

As far as what you can expect, everyone's course is different because everyone's body is different, so I think it would be difficult to say exactly what would be in store for you. I would do a lot of research on all these diseases so that when your symptoms do arise you will be better able to determine exactly which category they tend to fall into most often. I have found that Doctors are often second-guessing about these illnesses themselves, so I decided to become informed and listen to what my body was telling me.

Again, all the best,

Peregrine

I don't have a whole lot to add - I've been diagosised with Mixed Connective Tissue disease as of last August when I had my first major flare. I was already under a Rheumatologist's care because I had gone to her for arthritis. She did several blood tests and my ANA came back 1:1280, homogenous. At the time, I did not understand that was a very high reading. Looking back on it, I can see that she was 'watching' me. I went in every 6 months for blood tests, at first the ANA was going down and after 2 more tests was at 1:380. But the next time I went in to a test it was back up to 1:640. That was when she told me I had 'something wrong' with my immune system.

6 weeks later I had my first flare and that's when I got the MCTD diagnosis. For me, fatigue is the worst problem with a flare. I was out of work for over 4 weeks the first time before they started me on prednisolone. I have been on it ever since. I was down to 4 mg every other day when I had another flare, 3 weeks ago. It just ended this weekend. Although my joint pain does increase and I have problems sleeping because of it, its not too bad as I am on anti-inflamatories, light pain pills 'as needed' and a muscle relaxer at night.

You will probably find that changes in the weather aggrevate your joint pain. I've learned to hate winter as everytime a cold front comes through, I hurt. I know a couple of people who have Fibromyalgia and we all hurt at the same time. From what I've read about UCTD and MCTD it seems like it can be said to be an autoimmune disease with symptoms that match Lupus, Firbromyalgia, Syrogens, MS or others but without major organ involvement. We usually aren't as bad off as the others. If it ever goes into a major organ, I think the diagnosis is usually changes to one of the 'big names'. I have no medical training, this is my 'take' on what I've read, so please don't take it as gospel.

Hi - I don't know my ANA levels, but straight after Easter I am going to find out!

HUGS to you too! And thanks for replying. I woke up this morning, hoping the pain had gone away, and it hadn't, and I just burst into tears!

What do you do for the pain?
I find I get pain in whichever muscles or joints I happen to be using. I walked to the letterbox - my calves hurt ( it is constant in my hips). I lay on one side in bed - those joints hurt. I hate it. I wonder how I am ever going to exercise again. The doctor said not to force it, if it is "bad". I don't know what bad or good is at the moment. But he said when I felt "good" I should exercise, as the joints need a good blood flow to them.

Any ideas? Does any of this relate to you?

Lesley

I just wanted to say another thankyou to everyone who has told me their story. It really. really helps.

I would say that I'm in the early stages of UCTD, and that if I get further symptoms like fatigue, skin problems, etc that it would probably be further differentiated into MCTD or lupus, etc. I found one article that clearly explained the differences between the diseases, and your words have helped me to find my place in the scheme of things.

At the moment I just want it to go away! I'm hoping I am just in the middle of a flare, possibly brought on by the long walk and the colder weather ( we're going into winter and the cold has come on suddenly. I'm just glad I don't live further down the country, where they are having snow!). And that in a few weeks it will go away. I hope I will be able to handle the next flare better!

Hugs to you all.

Sincerely
Lesley

Hi all
I've now found out that my ANAs are 1:320, and I have managed to get the doc to refer me to a rheumatologist. Don't know when I'll see him/her but at least he is doing something. Have been on Nurofen for a week for the pain, and they've helped a bit but are upsetting my stomach. So now I am on Amytriptilleen ( Sp?), which is supposed to help with managing the pain. I've been up and down, sometimes for no apparent reason, other times because I have overdone it. I still feel like an old woman!

From what I've read about UCTD and MCTD it seems like it can be said to be an autoimmune disease with symptoms that match Lupus, Firbromyalgia, Syrogens, MS or others but without major organ involvement. We usually aren't as bad off as the others. If it ever goes into a major organ, I think the diagnosis is usually changes to one of the 'big names'. I have no medical training, this is my 'take' on what I've read, so please don't take it as gospel.

Jirel,

I was diagnosed with MCTD in the early 1992. I had been having problems since 1980... but with no positive lab findings, they called it Fibromyalgia and pretty much ignored my ever increasing number and severity of problems. Once my ANA turned positive, they called it MCTD and finally starting addressing my complaints. I've had a number of major organ problems: a leaky heart valve (minor, thank goodness), severe asthma-like lung condition and I had to have my colon removed because it basically stopped functioning. My liver enzymes are usually a mess but whether that is from the MCTD or medication we don't know.

Currently my official diagnosis remains as MCTD. None of my labs or symptoms are specific enough to point towards any other condition. I used to be quite concerned over what I considered to be a "vague" diagnosis. With time I began to realize that it didn't matter much what the condition was called. What mattered was treating my symptoms and relieving my pain. This can and should be done regardless of the diagnosis. Treatment for the various connective tissue disorders is basically the same.... It sounds like your doctor is doing a good job of that. --Kaylbe

( it is constant in my hips). >>>>>>>

Hi...when you say hips, do you mean the front, like at the bikini line? This hurts me also and at times feels weak, and like I can't take a full stride.

I started on Bextra and it's helping.

I lay on one side in bed - those joints hurt.>>>>>>

I got a new bed last year, it's a Select Comfort, where you can adjust it. It was pricey, $2200, but the best investment! Hope you feel better soon!

Hi...I have an update. I went for a second opinion yesterday....the rhuemy feels I have a malar rash on my face (lupus), and I have always been told it was Rosacea. UGH....She is checking my ANA again and doing all the antibodies. She also said I could start on Plaquenil, I go back in 3 weeks.