Does the answers ever come?

Hi,

I was diagnosed with Lupus but that was changed to UCTD. I am in pain everyday (ranging from mild discomfort to unbearable) I am always looking for a proper diagnosis as i feel like they have been given UCTD as i no longer fit the lupus diagnosis but they have no other explanation for the pain. They diagnosed me with fibro which now every pain its down to that.

I don't know what to tell people when they ask whats wrong with me because to be honest i don't know myself. Should i just accept the fact that this is the way it is or do i carrying on searching.

15 Replies

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  • I feel for you so much and can totally relate. I have no diagnosis at all and it is very hard to get through each day and not have any explanation for the pain your going through. I just feel like a hypocondriac to people as I cant explain why I am feeling like this! The hospital are not very helpful and every gp I see just fobs me off with new tablets, none of which work! Try and keep positive hun and keep asking for answers. Take care xxx

  • Thank you for taking the time to read and reply to my post x x x x

    That's not good, massive hugs. Does it ever cross your mind just to give up the search for answers? I only ask because i don't know how much more fight i have. I live everyday with pain and fatigue and now i have to fight the health care professionals.

    I really do hope you get your answers very soon or at least find a medication that helps. Take care x x x x

  • Thanks for your reply. It crosses my mind everyday. Everyday I just want to give up. The only thing that keeps me going is my little boy. He needs me so that makes me want to find an answer so that hopefully I can get some help to manage the pain so I can be the mam I used to be and not the one sat on the sidelines like I have become. It is sad state of affairs when you have to battle so hard against a system thats primary functions are to help people and save lives. Hope this message finds you feeling in anyway better and still with some fight in you. Keep strong xxxx

  • Mookiem, I empathise with your frustration and dismay but I also wonder, is a UCTD diagnosis any worse than a Lupus diagnosis, in terms of clarity, or explaining the severity of your symptoms? It's still staying you've got a complex, debilitating autoimmune condition, probably one that encompasses many of the symptoms of the whole gamut of them - APS, Sjogren's, Lupus, Vasculitis, RA, etc.

    I think I might be heading for a similar diagnosis (currently possibly mild Sjogren's secondary to APS) and I'm genuinely wondering how I feel about that.

  • Thank you for reading and replying to my post x x x x

    I am not completely sure why i am so frustrated. I don't think its about the name they put to it, put the fact they keep changing it. I just feel like they really don't know what is wrong with me so they keep throwing names at me until one sticks. At the end of the day, i have found that no matter what 'name' is put on my list of medical conditions it does nothing for the pain or fatigue i suffer everyday.

    I have sjogren's too. How do you feel about that diagnosis? I only ask because its very interesting to find someone in a similar place to me. I really hope you get your answers. Take care x x x x

  • Hello Mookiem.

    It took me 15 years to finally get a lupus diagnosis, which was then modified to APS with lupus like symptoms and is now referred to as mild lupus.

    For me having a name was hugely empowering after so long of fluffing any question of what was wrong with me.

    But the LUPUS SPECTRUM is wide and the edges fuzzy. Like so many of us , I had doubted my own sanity and 'was I ill?' -but the more I read of otheres problems the more I see that Yes I have lupus.

    So mild lupus is good enough for me, and if I were you I would go with that also. Saves a lot of headache.

  • Thank you for replying to my post x x x x

    When i was diagnosed with Lupus i had no idea what it was. I have done research but the most interesting facts have come from people who have actually been through it. I look through and so many people are going through the same problems of diagnosis, but i guess that is due to the professionals lack of understanding of the illness. I think a lot more research is needed into auto immune problems. All we can do is hope for the future.

    If people ask i now say i have a connective tissue problem, that usually holds their attention long enough to talk about lupus. I had many times where i have doubted myself. I still do everyday.

    Take care x x x x

  • Thank you so much.

    I don't know why i am so frustrated, its only a word at the end of the day. Does anyone else get the feeling the drs just don't actually know what is wrong with you? I do feel like friends and family don't understand because the drs diagnosed me with one thing then change it. I can completely understand that, i think i would have been the same in their position. I think i am just down at the moment, I am 30 and live a life of a 90year old. Think i am also grieving for who is was and that comes before acceptance of who i am now.

    Thanks again

    mookie

  • Hi mookie, think we can all relate to this. I too am still on UCTD from rheumy but GP of 30 years standing is saying lupus for definite. I know now that UCTD is a diagnosis it just means that they are not entirely sure which CTD for sure because you encompass elements of a few of them. At the last visit rheumy said I have all the symptoms of lupus now and positive ANA at 1:640 5 times. I can totally relate to what Thaddeus says above as some days I think I'm ok and others I know I'm definitely not. I think when the fatigue and aches ease a bit we think we are ok because we have become accustomed to them. So it seems to us that just achy and not too much energy is ok when in reality this is not normal. I see my rheumy again in December as it was postponed from November to December despite a recent diagnosis of proximal and distal weakness too connected to the underlying CTD. It is frustrating and probably like a lot of us we cope some times with not having a diagnosis then at other times we need and want answers. I have to give myself a good talking to when I am like this so I don't doubt myself. How long have you had the UCTD diagnosis for? It is frustrating in terms of benefits too as it is easier to apply for a disability if you can actually define it for sure. I am for the most part taking my GP's diagnosis and if this drags on much longer than December I am going to ask to be referred to another rheumy. Interestingly when I had my first private appointment with the initial rheumy at the start of al this in Feb 2011 he said if he was a gambling man he would say it was lupus. I do understand that rheumy's cannot make errors as it is lives they are dealing with but whey don't they say Well it seems that it is looking like such and such a diagnosis but we have to rules other others things too. It seems such an easy thing to say and then we would know that we are being taken seriously. Sorry for the long post but some days we just have more of a fighting spirit. I am also presently on my second week for very strong antibiotics for bronchites too so maybe feeling a little frustrated at 'The system' but still trying to hang onto my own self belief too. Perhaps sometime in the future people will take less time for diagnosis. Regards Marion

  • Thank you Marion for replying to my post x x x x

    I really hope you are feeling better and that the antibiotics have helped your bronchitis. Do you suffer from a lot of infections? I do, usually tonsillitis but recently its been eye infection. Get well soon x x x x

    I not very kind on my rheumy, she has not got a very good bed side manner. She does not explain anything very much and doesn't like sending me for tests. I do feel rather like she does not believe me pain is there. My GP is just as useless. He quite openly says he does not know anything about Lupus and its my rheumy's job to sort me out.

    Take care x x x x

  • Hi Mookie, Thanks for your kind reply. Yes since last year and with a compromised immune system I have had more infections as up to now it is not something I have suffered with. Recently 2 UTI's, bronchites and swollen glands/throat. I am sorry that you do not feel supported from the health professionals you have at present. I guess with this in mind it may be good for you to educate yourself on lupus/ctd so that you are able to ask relevant questions. It s important that you have blood tests as they provide an insight into what is happening internally. Lupus UK will be able to send you an information pack that may be of help to you. I hope you also get your answer soon xx

  • hi mookie i have just joined this site and you have just asked the question that would have been mine . I was diagnosed with uctd 7 years ago started on various meds and improved still had flares but managed to have a bit of a life as long as i paced myself was at rheumy on wed different doc who has decided to take me of nsaid and plaquienil as my bloods were unremarkable been in awful pain since back at gp today and back on meds . try and stay strong you are not alone in this journey but i can understand that you need answers. x

  • Thank you for replying x x x x x

    I only joined yesterday. I was so down and feeling like giving up. Feeling a little brighter today though. I am sorry to here you are going through that at the moment. If you were doing well on the medication why take them off you? I am glad your GP seems to be understanding. I hope the medication starts to work quickly.

    Take care x x x x

  • What is it with doctors when they take you OFF medication that's WORKING?!?! I don't even begin to get it. It's so damn illogical! Leaves your mouth flapping on the floor, doesn't it? And why don't they understand that the meds are probably affecting the bloods, duh, that's why they're working! Oh I give up, off to bed with a good book!

  • It is certainly is the case that we have to mourn for the person we were and those activities we defined ourselves by. For me not being able to run swim do martial arts bake bread do a crossword read a book read a newspaper hold a normal conversation etc etc was like loosing a different limb eact time I gave up on something.

    but you will get your life back on day, albeit without the ambition to run the new york marathon.

    A lot of the problems of diagnosis used to be down to ignorance, but once you are in the system you are stuck with overyly pedantic and specific tests along with an ever increasing understanding of the precise mechanics of the immune system. That which would have been a solid Lupus diagnosis a decade ago, is now going to be termed 'APS with Sjorgrens and unspecified conective tissue problems' etc etc.

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