MCTD and pregnancy – no not yet.

January 11, 2017

I’ve been putting off writing, because as each month passes, I think…maybe this month I’ll be pregnant and I’ll be able to write a positive, glowing blog post detailing my experience as a pregnant woman with Mixed Connective Tissue Disease. However as we try for the 8th cycle, I don’t have positive news to report.

For any woman trying to fall pregnant over multiple months, it is  a hard and emotional roller coaster of excitement, hope and true belief it is happening, to bitter, bitter disappointment that is very hard to talk yourself out of.

To see others fall pregnant so easily is confusing. I’m not a jealous person and I do believe it will happen for me but I’m confused at my pangs of jealousy, when I’m very happy for my friends but I have feelings I’m not used to feeling. I’m also confused about what we’re doing wrong and what others are doing right.

I know 8 cycles is not a really long time, I know this but for me, it has been an incredibly hard 10 months off methotrexate. Not only am I being ‘kicked’ every month I don’t fall pregnant, I’m still having regular flares, fortnightly or on a good month, monthly.

On these couple of days I’m so heavy, my body won’t work, my limbs are exhausted, I’m in aching pain, I struggle to stand without help, .I struggle to lift my arms, my knee keeps giving way and my thumbs are cracking and aching. My face feels bruised and I just want to cry. And to my husband’s dismay, I do cry. A lot.

I’m struggling. When I’m good, I get on with life, I plan things, I exercise and promise myself I’ll keep with the routine and then when the flare hits, I can’t lift my head up and exercise has to be forgotten. Showering is hard, getting food for myself is hard, feeding the dogs is hard, getting dressed takes so much effort.

Do you know how hard it is to lift your legs into a pair of shorts or do a bra up? Taking off a top is a creative dance move to minimise the pain in my shoulders. And when I’m dressed, I’m ready to lie down and recover.

I’ve had family ask me if it’s worth it. I truly believe it is and I also think, everything good in my life has taken time, I’ve worked for and waited for…..I’m hoping it helps me be that little bit more grateful, to know what it’s taken to get there. That’s what I tell myself anyway.

I really invite anyone with MCTD, Lupus or something similar who has been pregnant with these awful illnesses to tell me your story….hopefully it has a happy ending.

 

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11 Responses to “MCTD and pregnancy – no not yet.”

  1. Savanna said

    You’re an inspiration for me and I hope you’ll keep writing. So glad to find a kindred spirit! I was Dx in April 2015 with MCTD and MTX was a bust…trying Actemra… it’s hopeful to see others forging ahead trying to build a family 😊 Sending you good thoughts from my Seattle hotel after meeting my rheumy today… Savanna

  2. Evonne Stock said

    Hi, I have been reading your blogs for two years and have been inspired by your positive attitude. I do know how staying positive helps and the smile on the face as well. I was diagnosed with Lupus and MCTD when I was 35 and I am now 72. I take the same Meds and battle through some times mainly with the pain and the tired attacks as I call them. Keep smiling.. Regards Evonne Stock.

    Sent from my iPad

    >

  3. Ruth said

    Hi Naomi,

    I never look up anything to do with mctd but having some new symptoms (night sweats) recently prompted me to and I came across your blog. Well done for writing on it, I always meant to but life just got in the way.
    I am from the UK and am about to turn 30 so I believe we are at a similar stage in life. However, I was diagnosed when I was 8 years old in 1995. I have basically all overlaps plus some, including newer neuralgia issues, I basically have a full house of antibodies. I’ve always just got on with it but will admit the older you get and when having children comes in to it you have to insider more. I wish you the best of luck with getting pregnant and as you know these things can take an age for anyone let alone someone whose body is fighting itself constantly.
    I myself am not allowed to try to get pregnant as it is too risky for me and my health, but all is not lost we did ivf and have frozen embryos, down side is we will have to use a surrogate and that is full of it’s own pitfalls but we are positive and always just have to go with it. Just remember there are often other avenues and other ways too. Good luck and if you want to get in touch with me feel free. Ruth.

    • Hi Ruth. Thanks for your message. I’m impressed you don’t usually look things up about MCTD…I often do.

      I’m sorry to hear you are having new symptoms, I hope you’re ok. I hope my blog has offered some insight and maybe comfort too.

      Keep well (as well as we can).
      Naomi x

  4. Sofia said

    So sorry to read that you’re not feeling well.
    I hope you will get pregnant soon and will feel better during pregnancy.
    I have been off prednisolon a year now and on plaquenil since May. I hardly use Nsaid anymore. I’ve had ups and downs but over all I think plaquenil is working. My stomach doesn’t really like it though.

  5. Dina said

    Keep up the hope, I just found your blog. Recently diagnosed with MCTD and these questions really plague my mind. What will my future be like and will it allow me to include having children? I did recently read an article regarding how diet can effect your fertility and symptoms and am following a strict diet to reduce flareups. I don’t know if this is something that your trying as well but I really wish you luck! Don’t give up hope and your amazing resilience!! And honestly? In my opinion tears are cleansing 🙂

  6. Sarah said

    Loved reading your blog from start to finish, saw a lot of me in it, symptoms wise, I hope to come of methomextrate soon and go drug free for a while. Hope you have happy news soon, wondering with all your ailments if endometriosis was one? Good Luck!

  7. jodiebodie said

    Hi Naomi,
    Just checking in to see how you are going and read everyone’s comments. Like Ruth, I am not one to consult Dr Google often. Every now and again my GP will suggest things to look up. I need to update my resource list as more research and findings come to light.
    Sarah’s question about endometriosis was interesting because endometriosis usually goes hand in hand with autoimmune conditions and recent research suggests that endometriosis itself may be classified as an autoimmune process. (I was diagnosed with endo well before mctd.)
    I found Evonne’s comment very reassuring. I hope I too can live a long life. Interestingly, the line of women in my family are all long-lived and some of which have anecdotal evidence of lupus/scleroderma like symptoms. I wonder if our active immune systems started out as survival mechanisms. I wonder what it is that makes them get overactive.
    Naomi, I hope you are going okay and that you are coping with any symptoms that flare up. Wishing all the best for you.
    Fingers crossed for good news.

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