MCTD flare right now

August 8, 2016

I’m writing now, on my phone, on the train home because a flare has just hit me and I need to share now.

Excuse any mistakes.

This is happening basically fortnightly now.  It comes on so,so quickly I can’t believe it.

30 mins before starting this I was fine, leaving work and then on train it hit me.

Absolute exhaustion that makes it hard to sit up. It hurts to swallow and my neck is very tender. My arms feel like I’ve lifted way too heavy weights. I actually feel nauseous today as well.

My fingers are aching and switching between purple, white and red but always tingling.

My back and shoulders are so sore I don’t want to move…but I can’t without much effort anyway.

I feel like I might be dying…I know that is extreme and irrational but it’s such a sudden, all encompassing pain, malaise and tiredness that I wonder if it’s going to kill me.

Am I being too honest? I’m in the thick of it right now. I’m emotional and I’m trying to pass the minutes on this train ride until I get to my station.

Then I’ll deal with finding the energy to stand and walk off this train.

I’ve told work I need to work from home tomorrow…they understand…again.  and I feel so guilty…again.

I’m scared. I want my bed.

I want my health.

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18 Responses to “MCTD flare right now”

  1. Beverley said

    Sorry for you. Big hugs. Big slow breaths….☹😩

  2. Sharon said

    Darling girl. I dont know how you do it. This is such a cruel illness. I know you will come through this again. Your strength is amazing. I dont know if I’m being too honest either but as your mum it pains me so much to know how much you suffer. Stay strong. Love you.

    • Thankyou Mum for your constant support. I know it’s hard for you to see me like that. But…as Boo used to say…this too shall pass. And that flare did. I’m through it.

  3. niteshpatil18 said

    Are you tested positive for Anti- U1 RNP?
    My mother too is suffering from the same.

    • Hi, yes that’s what I tested positive for when I first got sick in 2009. I’m tested every now and then to make sure it hasn’t turned into Lupus.

      Hope your mum is doing ok.
      Naomi

  4. Barbara Wantuch said

    So sorry Naomi,
    I understand that feeling, and I know that no one quite understands how fast it comes on. That exhausting feeling I feel is the worst, you feel like your body is heavier than you can carry. I hope you got home and are now in your comfy bed. You are so inspiring, and help all of us who suffer with this monster. Hope this episode doesn’t last long.

  5. I feel you. I really, really do.
    It can be terrifying and saddening and make you feel guilty about everything all at the same time.
    I’ve never written anything like this at the start of a flare, but I’ve definitely felt this way. Thank you for being so honest. People need to see what having mctd and other autoimmune conditions is really like.

    • Hi Erin, Thankyou. I’ve come through the flare and back to my normal. Sometimes I worry I’m being too self indulgent, writing these pieces but then I think about how most of the info online is so medical and so black and white. It’s not a real reflection of what some of us go through. I want people to not feel alone…just as much as I want to not feel alone. Thanks for your msg.

      • jodiebodie said

        I totally agree with you Naomi about how the medical info is one thing but how it actually feels and affects one’s life in practical ways is quite another. It is useful to reflect on such things and not self-indulgent – useful to educate others about the invisible goings-on of mctd and useful to help yourself work out what is happening. By publishing it, it helps one come to terms with the fact that it is really happening too.

        I’m so sorry that I was not online to support you during your latest flare (I’ve been away from the computer due to my own fatigue/mctd issues). The sudden onsets and unpredictability are the scariest and most stressful aspects of mctd. I find myself scared to do different things in fear of the resulting flare-ups. Your description of the sensations and feelings in a flare are all too accurate, especially the ‘heaviness’.

        I’m glad you have got through it but fortnightly occurrences are a worry – what does it mean? There are no clear answers and it is easy to spend too much energy trying to work out why the body is doing what it does, Will you need to have a review with your medical team to make sure nothing new is going on? How does one draw the line about when to just let it go as part of the ‘mctd normal’ and when to seek help?

        May you be having a better week this week, when you read this.

      • Hi Jodie,

        I missed your post! Sorry about that.

        Basically I’ve noticed my flares are linking up with my period and ovulation. They’re happening so much now because I went off methotrexate to try and get pregnant.

        I’m seeing my rheumy on Friday so will see if there is a new plan of attack.

        Hope you’re doing ok.
        Naomi

  6. Jane O'Brien said

    It’s reassuring to read your blog Naomi because it makes what I’m experiencing feel real. It sounds so ridiculous to say ‘I can’t move my arms’ or ‘it hurts to move the doona off me”. I was diagnosed – eventually – in April 2105 & prescribed Plaquenil, about 6 weeks later I was totally symptom free. I used to think what a miracle this little pill was and then at the beginning of August this year, I noticed a pain in my shoulder on waking, it progressed to my other shoulder, biceps, arms, hands & swollen fingers, and then not to be missed out, my thighs. As with you, my movements are punctuated with ‘ouches’ and I have an overall feeling of malaise – totally not me! I have my day planned as my feet hit the floor in the morning but for the past 6 weeks I’ve barely ambled thru the day and haven’t cried so much for years, I have admonished myself for being such a baby! The plaquenil has been doubled & hopefully will kick in soon. I’ve had remedial massages (which feels good at the time) and on Friday had acupuncture – I don’t know if it’s coincidental but yesterday was my best day for weeks. I still woke up with concrete arms this morning & hours later still can’t raise them without pain but I feel more mentally alert, for which I’m grateful. I’m trying hydrotherapy next week and have an appointment with a Clinical Exercise Physiologist in October, I’m also going back to the acupuncturist.

    How long do your flares usually last? I’ve actually had enough now!

    Thanks for sharing & apologies for the lengthy discourse!

    • Hi Jane,

      Oh I’m so sorry you’re having a tough time right now. It’s all so, so familiar what you’re saying. For me Plaquenil was never enough. It was methotrexate that made me feel basically normal-ish.

      My flares last about 36 hours actually. I’m in pain most days but the flare like I described comes and goes quite swiftly.

      I’ll send you an email too in case you need a fellow MCTDer to whinge too.

      Naomi

  7. Jane said

    Hi Naomi, how are things with you now? The double plaquenil didn’t touch the sides so I am now pain-free on prednisone but being weaned off – so fingers crossed. I went to see the EP (exercise physiologist) – she has her PH.D. in the musculoskeletal system & knew all about MCTD which was such a relief. Her plan for me is to have a life-long exercise program that I will be able to continue even thru the pain of a flare, I have lost so much fitness thru doing nothing for nearly 2 months, so there will be a gradual build up. I am seeing her again in December.
    BTW when i had my flare I took 1/4 of a mersyndol tablet at night, it was enough to knock me out so that I didn’t move whilst I was asleep & wake myself up with a jolt of pain. You can buy them over the counter but have to provide your name & address – you can get night & day strength. It may help alleviate the pain for you? Take care and thank you for your time & consideration. Jane

  8. jodiebodie said

    Hi Naomi and Jane,

    I was checking in to see how you are going Naomi, but I must also say hello to Jane too. I empathise with everyone who is suffering these things.

    Jane, I was wondering to myself for a long time, “What is it with the arm thing?” I can wheel my chair through the supermarket all the way no worries but when I have to reach up to grab something higher, I begin to ache and my arms start to get weak. I used to wonder about why my legs and feet would become sluggish and yet they still seemed to ‘work’; i.e. they weren’t paralysed or necessarily numb or anything (even though tingling and numbness have been part of my symptoms at times). The ‘heaviness’ finally made sense when it was explained that often the problems are in the hips and shoulders. That is where the movement starts for those limbs so it makes sense to me now.

    I get regular physiotherapy in those areas. My physiotherapist was not surprised about my symptoms and it was the physio (not the GP or rheumy) who told me that this is a typical presentation for MCTD.

    Naomi, you mentioned that your menstrual cycle is influencing your flares. This characteristic was the thing that switched my GP into investigating lupus for me and sending me to a rheumy. I had been tracking my cycles to monitor endometriosis (which turned out to include adenomyosis) so I was able to show the GP that symptoms were coinciding. Suffice to say the GP’s hunch was correct and here we all are!

    I hope your rheumy appointment was useful and encouraging. I hope you are coping alright being off the mtx, Naomi, and again, I wish you every success in your quest. Take care. xx

    Jodie

    • Hi Jodie, sorry for the slow reply. Thanks for your message. I can definitely relate with the shoulder issue. It’s so bizarre. I’ll look up at something and think…lift your arms and grab it, and I physically can’t. I will often use my other hand to hold my arm up to do whatever I need. Also, while in bed, if my arms are above my head I have to physically move them back down by my side with the other hand. I’m going to write another post with any update now. Hope you’re doing ok.

      Naomi

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