Connective tissues disease - similar to lupus

Bertie_brace2022
Bertie_brace2022 Member Posts: 32
edited 15. Aug 2022, 15:14 in Chat to our Helpline Team

Hi everyone,

Is there anyone here who has mixed connective tissue disease or lupus?

jay

xxxx

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  • helpline_team
    helpline_team Posts: 3,482

    Hi @Bertie_brace2022

    Thank you for posting on the forum, if you repost on the 'living with arthritis' forum you will have more responses. I have given you a couple of links which I hope will be helpful to you.


    https://www.versusarthritis.org/about-arthritis/conditions/lupus-sle/
    https://www.versusarthritis.org/about-arthritis/conditions/joint-hypermobility/

    Best wishes

    Lynda

    Helpline team

  • helpline_team
    helpline_team Posts: 3,482

    Hi @Bertie_brace2022

    Just following on from my last post to you, mixed connective is an overall term, The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks.

    I hope this is useful for you, if you repost on the 'living with arthritis' forum, hopefully you will have some responses from other forum members with regards their experiences.

    Best wishes

    Lynda

    Helpline team

  • Bertie_brace2022
    Bertie_brace2022 Member Posts: 32

    @helpline_team

    Hi Lynda

    I must have missed your post (Apologies) I have read and watched a documentary about EDS which i understand is a condition. My consultant told me that i have UCTD, Fibromyalgia and now i have some form of mysotis.

    I understand that UCTD basically means i have symptoms and test results that overlap with several conditions which is why 1 specific condition is hard to diagnose, I am so confused though as i was told its basically lupus and now i have been told its a form of mysotis. I am producing the SEA-1 antibody which i believe it quite specific to mysoits but there are 3 different types of myositis.

    I am struggling to understand what is actually wrong with me and have reached out to my consultant but seem to get very confusing answers.

    xx

  • helpline_team
    helpline_team Posts: 3,482

    Hi @Bertie_brace2022

     

    Thank you for your posting. I am sorry to hear that you are struggling to understand what is actually wrong and that when you have reached out to your consultant you have received confusing answers. Connective tissue diseases (CTD) affects the tissues that support, bind together or separate other body tissues and organs. They include, tendons, ligaments, and cartilage. Examples of CTD do include lupus (SLE) and scleroderma (systemic sclerosis)

    Joints are usually involved in CTD, but there may also be inflammation in other tissues such as the skin, muscles, lungs and kidneys. You may therefore feel a range of other symptoms besides painful joints. 

    I wonder if you can reach out to your consultant again so that you can receive the answers you need. You could make a list of questions and tick them off as they are discussed.

    I have put some links below about some of these conditions that may help to learn more about them.

    Lupus (SLE)

      Systemic sclerosis (Scleroderma)

      Myositis

      Fibromyalgia

     

    Best Wishes

    Dawn

    Helpline Advisor

  • Bertie_brace2022
    Bertie_brace2022 Member Posts: 32

    Hi Dawn

    thank you so much for coming back to me.

    the reason I am confused is because I was under the impression that fibromyalgia is diagnosed as wide spread pain with no other diagnosis, but I have been told I have UCTD. I was told it’s similar to lupus and now I’m told it’s myosotis.

    Does this mean that I have fibro which is the wide spread pain, UCTD which is some form of autoimmune disease and myosotis also?

    Im not sure how I have UCTD and myosotis as I was under the impression that UCTD is because some results are showing something is wrong and others tests results are normal meaning they can’t quite figure out exactly what autoimmune disease I have. Now I have a form of myosotis.

    I have contacted my consultants secretary numerous times and have not received an answer.

    I have researched a lot about these conditions and also have gone over all my results etc even as far as looking into the genetics side of things. Trying to interpret my results is proving quite hard. Would my Gp be able to interpret them?

    I know that it can take years to be diagnosed with one thing specific as a lot of symptoms overlap with several conditions but this is becoming unbearable which I have told my consultant on several occasions.

    I am under the assumption that being told you have UCTD means you’re not quite there yet with a formal diagnosis but that you will (in time) be diagnosed with a specific autoimmune disease.

    So sorry for all the questions.

    xxxx

  • helpline_team
    helpline_team Posts: 3,482

    Hi @Bertie_brace2022

    Thank you for your posting. I am sorry that it is taking so long to get an accurate diagnosis but as we are not medically trained, we are not able to help with the diagnosis. Sometimes people do say it can be difficult with fibromyalgia to understand if it is the pain from the fibromyalgia they are experiencing or another condition and can very much understand the questions that you have. It is understandable how frustrating this is, but unfortunately, we are not able to advise further around an actual diagnosis. Of course, if you do get further clarification, then please do reach out to us again. You would need to speak to your rheumatology department so that they can provide clarity to you about your conditions and the questions you have, also for them to go over your results. You could ask your GP about these also. I hope this is helpful.

    Best Wishes

    Dawn

    Helpline Advisor

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