Just been diagnosed with undifferentiated connective tissue disease after more than 2 years of investigations. My signs and symptoms are mainly pointing at Lupus, (low white cell count, joint swellings, tight tendons at back of calves, acid reflux and fatigue) . I'm self managing at the moment but may have to accept intervention if symptoms get worse. Recently I have had 3 episodes of a rash around my calves associated with walking in the heat (possibly vasculitis) . Now I have an ulcer inside my nose which has been there for at least 2 months. I am awaiting a nasal biopsy but wondered if anyone had experienced a similar pattern and what was the ultimate outcome ? I know from my experience with breast cancer that it doesn't pay to speculate but I would be grateful for any comments. Thanks.

19 Replies

  • Hi I have been given the same diagnosis in the last few months , I have been told I have sjorgrens , raynaulds , fibro , chronic fatigue . I am waiting on lip biopsy and I see opthomigist in 2 weeks . My GPs are great they are treating me as if I have lupus but rhummie says UCTD ,I am told it is rare ,I feel it is lupus but rhummie says not. I can't deal very well with the hot weather we are having this year and I was so looking forward to it as it usually eases my pain but this year it seems to have contributed to a whole bunch of new symptoms ,I have been off work since jan 30 the and think I am about to be let go I have recently purchased a mobility scooter ,had hand Rail put in and had a bath lift , am having difficulty with breathlessness , I walk like a snail have no real speed so can't walk my dogs properly hence the scooter ,don't drive very far now as I ache very badly if I drive more than 30 mins. I also have nuralgia pain throuht out my body . I have been fighting this for 3 years it came on after dental appointment although I had auto immune issues before this . I am only on duloxtine and folic acid daily at moment have been give solpadol when pain or is my bowel issues kicks in. Rhummie has said he is going to put me back on hydrocholquinne once all test are completed which makes me feel great but he was worried about my heart and that was why I was taken off it ,i also get mouth and nailsel sores ,dry mouth and eyes and itchiey ears (sjorgrens) the fatigue is also a pain he has told me he will get me fit again so I can work but my employers OT department have said I won't be ready to return to work next month and agree with doctors ,so I will proberly be let go. I am learning a whole new way of life one being acceptance , and not push myself so hard .and to except help from others and learn to be not so independent I have got my self a gardener who comes when I ring ,he's lovely chap usually charges £10 hour and me he insist I only pay him between 5 and 7 depending on what he does . I have difficulties with house work so except the help with that as well and have stopped worrying about what ifs and diagnosis they will use the same drugs whatever and I being kind to myself and rest and I use the spoons which I found on here ,which is how I pace myself and except .I suppose what I am trying to say is I didn't take intervention as you put it until I had worked my body into the ground and now I have to build myself back up so take all the help they offer and be kind and love yourself , I nearly deleted this post because when I read it back it reads very depressingly. but I am not unhappy I was fighting myself ,I am not now and I really feel so much more contented and happy please take care Christina x

  • Hi Chritina,

    Your post didn't come over as depressive at all, just realistic. This seems to be a disease that can creep up slowly over years and I am hearing what you say about accepting help. At the moment my health issues are not severe enough to significantly affect my life. The fatigue is my main problem and I have taken Wednesdays off work now to alleviate this (with a drop in pay which I can ill afford). My daughter has taken on any heavy house work and I manage the rest, although if I'm tired it has to wait! It sounds like you are much further on than me as far as the progression of the disease is concerned so I will heed your advice and look after myself. Thank you.

  • My daughter is doing the same for me ,she is home from uni till September and then she off to Japan for a year, as part of her course so she has decided to go through my house like a tornado bless her , she knows how house proud I am deep down still, she's been home 2 weeks and redecorated the bathroom which I bought the paint for 3 years ago and hadn't done ,painted the hall before they installed a hand rail , she is apparently starting on the kitchen next week , she has put all her things from childhood up in loft so when she goes with the man with a van next week to collect all her stuff from uni everything will then go in her bedroom here , and she has just announced she going to sort out my car ,she's just changed the beds my head is really bad today so I have been told sit and stay :-) put . Back to you have they offered you hydrocholquinne if they do it's brilliant it will get rid of fatigue just be careful not to overdo it as I did , in jan the breathlessness got so server I could not walk across a room without getting what everybody thought was major asthma attack my daughter is 21 at the end of July how old is your s there amazing arnt they abbi nearly didn't apply for her placement because of me . But I wasn't having a bar of it ,there were 2 she could of applied for but she insisted on only apply for one which was the harder one of the 2 to get I was cross with her at the time but she is going thank goodness I won't have her not live her life because of me ,we compromise my diagnosis took 3 years by the way take Chris x

  • My daughter is nearly 18 and will be off to uni next year. She wants to be a doctor so I have said she can look after me when she qualifies. The rheumatologist didn't specify which drugs were on offer just said that medication was available if I want it. I am feeling quite well at the moment so I am waiting a bit longer. It's a shame that more people are not aware of the effects of these conditions, it would save a lot of explanation. Your daughter sounds like a little treasure ! Take care.

  • Hi I too have a diagnosis of UCTD with more lupus symptoms and inflammatory arthritis. I do tick 5 criteria recognised on the ACR criteria for lupus but as my GP said yesterday keeping it open like this makes it easier for them to treat the symptoms and not just stop at the one diagnosis (I think it depends on which rheumy you see personally re this) and I've learnt to roll with that. Presently just had a steroid injecton (yesterday) as have had another flare up once again affecting my sacroliac joint at base of spine and coming into hips and down legs (very painful). I think to answer your question lupus/CTD diseases affect each of us differently, for some it is joint pain, muscle pain others it is organ damage and the usual fatigue seems a commonality. UCTD is not any less painful infact you can have symptoms of one condition and another hence this diagnosis. I hope things stay stable for you xx

  • Hi Mistr

    I'm so interested in your reply about UCTD and what your GP said that they can treat symptoms and keep an open mind! That is how I've been treated and diagnosed UCTD for 28 years now. Recovering from flare of chest pain and aches and so Rheumy has taken lots of Lupus blood tests to try to nail it!. Having seen what your GP has said it's more of a diagnosis than I've realised !

    Can I ask about your sacroiliac joint flare?. Did it come on suddenly?. I think i may have the same as I've got pain lower down than usual and feel dreadful despite 20 mg steroids. It is so painful but can vary. I hope the steroid injection works well for you, they have for me in my facet joint. Shame you needed it after starting a new immuno-suppressive!. Take CareX

  • Hi Misty, UCTD is a disease with the connective tissue diseases umbrella. For me how my rheumy nurse explans it is I have a lot of symptoms of lupus but I also have other symptoms from RA/myositis side too. My rheumy does say to her it is lupus which can seem frustrating that there is not a label as such put on it especially as they have seen the pics and criteria and it fulfills lupus for sure. But to be honest if it were nothing then I know I would not be receiving a service. Instead they are saying lupus like and inflammatory arthritis and my thoughts are now that as they conditions evolve over time they do not just want to give me one definite label. I too think there is more than one aspect going on here too so really it's ok that they have given be the UCTD label. The only problem I have with that is Daniel Wallace book on lupus (expert on lupus) says UCTD does not have a positive ana blood test whereas I have had repeat positive tests at 1.340 and 1/640 high titers plus another 4 of the lupus criteria recognised. But to be honest there may come a time when I am glad they are keeping it open. To be honest it's most likely a CTD whichever one it is and for me my immune system is definitely attacking my joints and muscles (very RA/myositis) like too so the drug I am given is leflunomide which if you look on the RA health unlocked seems standard for RA/inflammatory conditions which I have. It seems they now like to define them as an umbrella term as inflammatory arthritis can be lupus/ra/spondylitis/psoriosis. So whilst I have a clear malar rash (verified) and photosensitivity, ana positive, arthralgia and myalgia (recorded) and white cell casts (confirmed) it would seem that there may be other reasons why the UCTD title is given. To be honest I now like to think of it that whichever CT diseases it is that it all boils down to my immune system attacking my body. I think it boils down to semantics to be honest. What I can say is that I am getting good treatment. I want to point out that UCTD does not have a positive ana according to Daniel Wallace's book but I don't want to be seen as a 'difficult' patient and so I comply. I may further down the line ask again but I do know I'm being treated to well, I can ring the rheumy nurse who is very good and caring. Only yesterday she said if I flare after this flare up she will bring me in earlier again. My GP surgery is good so I think really UCTD is a recognised disease it just encompasses overlaps within the autoimmune conditions. Some UCTD can go into remission (I wish). With regards to the sacroiliac joint I have copied the following for your information:

    Sacroiliitis (say-kroe-il-e-I-tis) is an inflammation of one or both of your sacroiliac joints — the places where your lower spine and pelvis connect. Sacroiliitis can cause pain in your buttocks or lower back, and may even extend down one or both legs. The pain associated with sacroiliitis is often aggravated by prolonged standing or by stair climbing.

    Sacroiliitis can be difficult to diagnose, because it may be mistaken for other causes of low back pain. It's been linked to a group of diseases that cause inflammatory arthritis of the spine. Treatment of sacroiliitis may involve a combination of rest, physical therapy and medications. For me I get inflammation around my lower middle back that radiates around the sides of the hips and makes walking upstairs very difficult. I hope this answer helps Misty xx

  • Hi Mistr

    Many thanks for your sacroillitis info, very helpful and it sounds like me . I will know for sure on Tuesday when I go to the PainClinic!.

    Your explanations on UCTD are very helpful too , my illness is following the same symptoms as you and I too have had positive ANA's over the years so can refute Danny Wallace's claims!. I guess the name doesn't really matter, the important thing for both of us is that we have had the right treatment regardless and we are both taken seriously by our doctors. I'm getting the same good care as you which is worth so much isn't it?. Any new symptom I develop my Rheumy wants to know about it, when I've asked about diagnosis he's said I can't be pigeon- holed so I think I'm an overlap case too. It's good with the UCTD label that the docs have to keep an open mind, more interesting for them as it's such an evolving illness!. I do hope your injection works well for you and thanks again for your help. MistyXx

  • Thanks mstr. The more I read, the more I can see that, indeed, everyone has their own disease profile. I got through my previous disease with a strong mind and intend to do the same again, although I do realise that this is only part of the management process.

  • I'm in a similar situation. My main diagnosis is SLE but with active Dermatomyositis or it could be Mixed Connective Tissue Disease. From my years of experience the actual diagnosis hasn't mattered for me because the treatments are largely the same or similar; steroids, antiinflammatories, immunosuppresives etc. My advice would be not to self manage, take the treatments you are offered because they will stand you in better stead than leaving your immune system unrestrained because you could potentially do damage to your body that could take a lot longer to recover from.

  • Thanks Irish lupie

    I take on board what you are saying. It has really made me sit and think. For me it's a matter of weighing up the pros and cons of drugs or no drugs. I must admit I'm coming down on the side of drugs now, especially with the nasal ulcer lasting so long. I feel like a cocaine addict, having my septum ravaged, only it's not drugs, just the quirks of my system. Thanks for your words of wisdom.

  • Yes. This sounds vvvvv much like my version of lupus: all of it.

    I do have other multisystem symptoms & diagnosed conditions (eg RP) that have been persistent for years too, though

    It has turned out that my lupus was diagnosed & treated in infancy & my teens, but no one inc my mother, explained lupus to me. So, I left home at 21, moving to the uk from the us, and, aside from emergencies, and superficial treatment of symptoms + secondary diagnosed conditions, have been lifestyle managing until 3 years ago when things were so blatant, the nhs had to look at my autoimmune status. Am now 60, responding well to lupus meds, and hoping the unimpeded progress of my version of lupus is at least slower now....and UCTD is not totally excluded from the possible outcomes of my diagnostic process (which of course can take years)

    I'm also ehlers danlos type globally hypermobile

    Is there anything you'd especially like more on?

    I'm particularly interested in the form your tendon tightening is taking & how you manage it?

  • Thanks Barnclown

    My tendons are very tight and swollen around the ankles. Been given stretches to do and swimming generally seems to keep everything moving. I had a long episode in my early twenties of extreme fatigue, headaches and sinus problems. The more I think about it, the more I think it was autoimmune related. I was treated for anxiety and depression

  • Thanks for these details kyliesinead - am v much feeling for you. I think many, if not all, of us know what you mean...I've also had treatment for anxiety & depression, and continue to manage these daily..mostly I think I'm learning how to manage, anyway...and this forum helps a lot

    Sounds like you've got a good regime going. Amongst the stretches, are you doing gastrocnemius (calf tendon) stretches? I ask because last autumn, after a lifetime of worsening feet trouble, inspite of me doing all the right things as advised by podiatrists etc, I consulted a prof ortho surgeon foot wizard who prescribed these stretches for me (a heavy duty regime: 40 minutes per day, 1 minute per leg alternating) and, 30 weeks on, as a result of these daily stretches, I can walk & stand again....my forefeet had contracted severely....something that also happens to lupus patients' hands more often.....I am pretty sure my lupus meds also are helping control the rate of my soft tissue denaturing/tendon tightening too, but these stretches are magical! But I've yet to meet anyone else who has to do this sort of physio stretching for lupus badly affecting their legs & feet....

    Take care


  • That's interesting, thank you for sharing that. I had conflicting advice re tendon/calf stretches. The first physio I saw said I must only stretch after exercise or warm up as my tendons could snap if I overstretched them ! I then saw a podiatrist who recommended stretching every hour regardless of whether I had warmed up or not. Now, I just use common sense and stretch gently but regularly. It sure is a worrying condition.

  • I do agree. By the time I saw this prof ortho surgeon, I'd spent many many years conscientiously following & complying with the advice of experts re my feet probs which began as a teen - and I of course was double checking their advice, getting 2nd opinions etc etc. basically, I was getting good advice & doing the best I could, but no one factored in the lupus effect until this prof ortho surgeon. I had even had steroid injections to the forefoot, which only helped so much. All experts saw only my global hypermobile ligamentous laxity. I spent years doing stretches, pilates, yoga etc etc....but nothing as extreme as the prof's stretches. And I have spondylosis, which has meant a lifetime of upper & lower spine pain, ops on spine, physio etc....again, no spine experts knew about my lupus and how that factored in to my spine problems (which it does: lupus meds has cleared up, almost completely, any spine pain that remained despite the reasonably effective spine treatments & management I'd stuck to over the years.)

    So, I was scared to do the prof's stretching cause I thought maybe it would upset all my good management & maybe a tendon would snap etc....so, I got my trusted gp & rheumy & lupus nurse & osteopath & podiatrist to comment on & check my progress with these stretches. They seemed totally unconcerned & approving....so, I thought: ok, but I'll pay v close attention to what my bod tells me every second of this stretching. it'll sound strange, but, oh my, within a few days of starting the stretches my toes began to respond so beautifully that I almost feel like weeping just thinking about how much better they began to feel. And I stopped getting the dreadful calf & foot cramps....I continued to listen to my bod....my 59-60 yr old legs & feet continued to say: yes please thank you! Do I sound v odd? And nothing bad has happened....so far...only I can now walk & stand again....and before the prof, top nhs consultants had advised me to just give up & stay off my feet!

    Well, so, I like your attitude to this and I think it sounds as if you're on the right road & getting good advice....feeling your way along, much as most of us have to....and I hope you'll let us know how you get on

    thanks for giving me the chance to share this with you. I have one other great forum contact who has our kind of feet probs and is doing similar management which is helping her too. It's good to have good company


  • No, of course you don't sound odd. I'm so glad you have had a good response with your stretches. You have had to work hard though and persevere. Sounds like most of your life has been blighted to some degree or other by this condition, but you sound like a fighter. That's all we can do; keep putting one foot in front of the other and carrying on , however painful that may be. I'm inspired , you go girl!

  • It is what it is!

    One of the greatest things is that this forum means I no longer feel so alone, alienated and confused...so, now, the effort to cope is less daunting....and actually, often, more fun.....even though it's never easy or simple

    Glad you're here


  • And just as a post script note; when I'm well, I could conquer the world and I'm convinced there's really nothing wrong with me, especially as the diagnosis still seems a bit vague. THEN! Out of nowhere come reminders of my condition, be it acid reflux, pains in my feet, blurred vision, painful shoulders and elbows or weak wrists or just an overwhelming fatigue. I am sure many of you share this journey of ambivalence.

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