Undifferentiated connective tissue disease

[veronica54]

I as diagnosed with Undifferentiated Connective Tissue Disease just over 4 months ago.  I have pains in my hands and feet. Also swelling.  I also have Raynauds disease.  I do not sleep very well either. How will I know if I am getting better or worse. I am not sure what to expect and am a bit scared.  

[Adele_cowling]

I was diagnosed with UCTD about 20 years ago after years of being told by a variety of doctors that there was nothing wrong with me. Shortly thereafter I had carpal tunnel releases on both hands & growths cut out of 2 tendon sheaths. Once I started taking Prednisone & anti-inflammatories I recovered somewhat & was able to function almost normally provided I did stretching exercises almost daily & took plenty of vitamins.
I was later diagnosed with scleroderma, lupus, Reynaud's etc. although I don't know whether I actually have any of those.
In Dec 2009 I also developed Crohn's disease, with small intestine being badly ulcerated - probably from medication.
Hope you don't find yourself in the same boat.
Life will never be the same again, but with a lot of work it can be quite manageable. e.g. if you're walking & get the shooting pain up your leg, put your shoulders back, stand straighter & carry on walking. The pain will probably go away, temporarily at least.
Good luck. Please feel free to contact me if you think I can assist with tips etc.
Adele

[Caryopteris]

Be sure to be tested for Celiac disease, as it can lead to other autoimmune diseases.  

Secondly, there is a treatment most doctors don't know about for autoimmune diseases.  A pharmacy has to mix it for you.  It's called:  

LDN (Low Dose Naltrexone)

[Reenie1602]

I have had very painful feet and leg ulcers, this has been ongoing for 2 years after I had a blood transfusion. Drs still don't know what I have but a connective tissue disorder. I've gained weight a lot and the pain is unbearable. 18 months ago my right foot was debrided and none have come back where the debridment took place.i am on plaquenil my left eye I cannot see out of it anymore this went about 2 weeks ago. Can someone help as I feel I am a guinea pig and the Doctors know nothing. I've paid privately for a specialist and she said. Mmm I don't know what they are. Mmmm great no one knows and the pain I'm in is inhumane

[Want to feel well!!!]

You seem to have a great attitude as well...I try to remember it really helps to counts one's blessings and know things could be a lot worse.

Good luck planning the wedding and remember to take care of yourself!

Wanna :o)

[Joni686]

All I can say is DITTO  to all of the above.  Started out with a connective tissue disease and ended up with lupus and fibro.  ANA 1:1280  when last checked two weeks ago.  I decided I am not in a flare and I am ignoring the bloodwork.  I have a wedding to plan and don't have time for it right now.
We all live on a rollercoaster and enjoy the good times as much as possible.  Hey there oldfatchick- haven't spoken in a while-no hurricanes so far this year, hey Trudie hope you're feeling good, love your additude Want to feel well and God Bless you Veronica and everyone else dealing with this mysterious disease.  We each have our difficulities but the good thing is we are all in it together.
Joni

[Manxie]

Hi - well my feet and hands suffer with awful coldness but rheumy hasnt diagnosed with reynauds because they dont go blue - he says that they do with reynauds but at times I wonder as my feet especially are like ice blocks when the rest of me is fine!
      My legs and feet do swell yes and my hands and fingers do but not as bad since they got my thyroxine level right - for me that swelling seemed to be to do more with the thyroid stuff. Is your tsh level right now?? Yes it is like a waiting game and quite a frustrating one! On the one hand you want to know what is happening and why - but on the other you dont want the disorder to progress just to know. Hope your rings fit again soon.
   Ive just had blood tests repeated due to feeling bad again this past week- Ill keep you updated what the results are - also due to have 24hr blood pressure test on monday. BP has been unstable since May and they dont know why.

           Kind Regards
               Ali (Manxie)

[veronica54]

Hi Manxie,
Thank you for your reply. Have you Raynauds as well?  It appears that it goes with the "autoimmune thing"!!!!  My ANA was 1/640 in April and I am having it done again next month.  I still  have the pains and stiffness in my hands and feet.  Also, swelling of my feet and hands. (havn't worn a ring since April)   Still hoping my rings will fit me at some stage.   I am keeping my fingers crossed. It's like a waiting game - is'nt it?

[OldFatChick]

I, too have been diagnosed with UCTD and I an hypothyroidal, as well.  Mine started out with a positive ANA test.  I had gone to the dr for something totally unrelated, and I had noticed a small bump on one knuckle and decided to ask about it while I was there, actually it was more of an afterthought than anything.  He ran bloodwork and my ANA was at 1:364.  He called to tell me I might have Lupus and that I needed to get to a Rheumatologist as soon as possible.  That was the beginning of my journey. I am now on my second rheumatologist and I am on Plaquenil, Baclofen, Tramadol and Meloxicam for the UCTD.  I am also on levothyroxine for the thyroid issue.  I have a list of symptoms a mile long and am getting more every week.  My last ANA test was 1:1260.  I have muscle spasms, muscle atrophy, muscle, joint and bone pain, burning sensations in my toes, my feet, the back of my hand, sometimes my legs, I have heel pain, my head won't stay upright, it wants to sink into my chest.  I have swollen joints in my hands, my wrists and ankles feel as if they are broken sometimes, I have nausea and vomiting on an almost daily basis. I have more, but you get the picture.  I don't even know which symptoms go to which disease anymore.  Hang in there and do not let the doctors get away with not listening to you.  Nobody is going to be more concerned with your health than you are.  Keep asking until you get answers.  If you feel the doctors are BSing you, call them on it and find a new doctor.  It's a pain to find a good doctor, but I believe they are out there.

[Want to feel well!!!]

Hi...

Sorry for your diagnosis.  It can be a rough road but it can also be okay once you have the right combination of medications.  Hopefully you have a good rheumatologist who is willing to work with you to prescribe the right meds for you.  Every patient is different and what works for one does not necessarily work for another.

Try not to be too scared.  Educate yourself by reading up on autoimmune disorders.  Knowledge is power and you'll want to understand what is happening to you and understand what the doctor is discussing with you.  You need to be a good advocate for yourself.

Sometimes the Raynaud's symptoms can be lessened with BP medication or with caution in your environment, depending on your weather.  For me winter is the worst, as it is with most.  Protect those fingers and toes!

Sleep is VERY important and you need to have that addressed.  Lack of sleep can cause many symptoms that can be lessened by good, consistent sleep.  I have been on Ambien CR for 3 years and the benefits of sleep are wonderful.

I was first diagnosed with UCTD after about 8 years of trying to find an answer.  Now I am more in the Lupus and Sjogren's categories, but either way, treatment is the key.  My first symptom was overwhelming fatigue, which progressed to an exhaustive list by the time I found a doctor who figured it out.  Thankfully treatment has greatly reduced the list to a manageable few, unrelenting symptoms.

You can live a rich full life with this illness.  There are ups and downs, but somehow I am a better person because of all of this...makes me appreciate things more and not sweat the small stuff.

Hope this helps you.  Wishing you wellness...

Wanna :o)
          

[Manxie]

Hi Veronica,
        Sounds like your docs are prgressing things quite quickly? well at least in comparision to some others here and me! My gp thinks i have UTCD, but rheumy says im "immunogenic" and just does test after test and seems to get no where! My ANA has been 1;640 for over a year consistently, i have asma too at 1;160, and raised CRP also. Presently in last few days seem to be having a flare - bad joint pain, fatigue, nausea. June and July I was fine though ( hallaluyha) but May i was in hospital with possible autoimmune kidnet related issue that put blood, protein and white cells (lots) in urine and pushed my blood pressure up no end. Its been up and down ever since and I too have hypothyroid, so we seem to have a lot in common? Oh yes and migraines but not so badly since I cut out nightshade veg which I seem to be highly allergic to. I have the stiffness when I get a flare and the mouth sores and a hefty share of frustration at the doctors! They seem to now take it all slightly more seriously than they did a few years back but still I dont have any clear diagnoses and i DREAD that pain again I had in May.
Its a hard slog this autoimmune stuff and I guess I just wanted to say your not alone and keep focussing on the positive - maybe we can help each other to do this?
           Thanks Ali (Manxie)

[TrudieC]

My symptoms were initially pain and swelling in my hands, wrists, feet and ankles and sleeping difficulties.  Then it grew into all over body pain in my muscles, joints, tendons, etc. plus the fatigue, some rashes, mouth sores, and with awful stifness in the morning.  My blood work is progressing.  He feels it is likely Lupus and/or RA but is leaning towards the Lupus.  Thank you for the recommendation.  I've read Mary's books on thyroid which I also suffer from and she has some good advice.  

[veronica54]

Hi TrudieC
Thanks for your reply. Were your symptoms the same as mine.  Mine started in March with cold hands and feet, then both my hands became very painful, particularly in the morning after waking up.  I am on NSAIDs and I fell much better in the last week or so. Not so tired and emotional.  It really has taken its toll on me.  I cannot do the things I used to do and that is frustrating.  My Rhumi told me I had a 50/50 chance of getting LUpus, Sjorgens or Scleroderma. I did a lot of research and it doesnt appear to be that high. My ana was 1/640. I recommend you read a book called"Living well with Autoimmune Disease" by Mary J Shomon.  It is very informative and gives a much more hope than any doctor gave me.  Keep well. V.

[TrudieC]

You should be having your bloodwork repeated every 2 or 3 months.  I essentially have the same diagnosis but doctor is leaning towards Lupus and I am on plaquenil.  He is checking my blood every 2 months to watch how it develops and to check on how I am feeling.