Three months off methotrexate- my experience

July 3, 2016

Today I’m going to tell you about the progressive pain of being off methotrexate, with Mixed Connective Tissue Disease.

But before I do, I have to stop and acknowledge the fact that I am so lucky. I am so grateful. No matter the pain, no matter the uncertainty, I am constantly faced with people suffering so much worse than I am.

It is so important to see what you have and be thankful for it and I try to do that every day.

It’s been three months since I stopped methotrexate and I’m noticing it. My shoulders ache and it is difficult to raise my arms, to reach or do anything with them. Not impossible but difficult, exhausting and painful.

I went to the gym the other day and any sort of weights were out of the question, so I walked on the treadmill and rode the bike and tried not to be bitter that I couldn’t do the weights that I enjoy.

My fingers are swollen, my new wedding ring sits snugly on my ring finger and my joints in my thumbs crack constantly. I am back to the time when I flinch when I have to shake hands with someone because my joints are so tender.

My wrists are weak and pang with pain every now and then. I take a deep breath and concentrate on not yelling out when I get that blinding pain. I know it will last less than 10 seconds and then I can get on with things.

My sleep is interrupted. When I need to bring my arms from above my head down I wake and physically lift my arms to the new position. Sometimes I don’t have the strength to push the doona off me.

And I’m crying a lot more. Pain is exhausting and sometimes I feel sorry for myself.

But then, the reality is, I’m choosing this because we want children. I am still not as bad as I was at the beginning. My legs and feet are doing fine. So I am ok.

Mentally, I am ok and my life is good and that will propel me on.

Three months down. I can do this.

Naomi

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16 Responses to “Three months off methotrexate- my experience”

  1. Anne said

    All I can do is send you lots of love. You are an amazing girl and hope by some miracle the pain will subside. What a goal……..awesome xxxxx

  2. robmulally said

    Wow, this is really inspiring. Thanks for sharing something so honest and personal. Your such a strong person I have no doubt you will see this through. !

  3. jodiebodie said

    Keep your eyes on the prize. Keep up with the great positive encouragement and self-talk; e.g. “I can do this.” I am hoping that pregnancy hormones can influence your symptoms in a good way. Stranger things have happened. Cheering you on from the sidelines…

  4. Colin Brehaut said

    Yay. Go Naomi. You keep fighting. You are a lovely person and despite the odd drawback, still manage to hold your head high. A credit to yourself and your family. Many others would have folded. I wish you all the luck in the world in achieving your desire to have a family.

    Col & Cats x

    PS Colin is a great name for a boy (hint hint) ha ha

  5. Beverley said

    Mega-impressed!! You go girl!!

    Can’t wait to hear of your baby news…😊😊😊

  6. Susana said

    Naomi I did not know you were off of it, I loved the freedom of pain on Methotraxate but I kept getting sick so I had to be off of it. It’s a mourning of sorts as the pain comes back to every joint, those pains forgotten come back. I don’t think anyone can understand unless they have been through it. When I was on Methotraxate I used to dream I could run again, that’s how well it worked for me. Now I take Plaquenil and Arava, works okay. This is one of many sacrifices you’ll be doing for your child, very worth it indeed.

    • Yeah I even convinced myself I didn’t need it…then you notice the pain.

      I thought a while ago you got better? Just remission for a bit was it? Hope you’re doing ok.
      Naomi

  7. Barbara Wantuch said

    You sound like a strong woman, and you will get through this. The reward is going to be so phenomonal.I will keep you in my prayers and ask for strength for you. Hang in there Naomi,
    and allow yourself,the feelings you deal with on those bad days.

  8. Melissa said

    I am 13 YEARS off methotrexate and am just at the point that I have to start back. I have made all my previous blog posts visible to me only and am gong to start new from this point on. However, having lived over a decade methotrexate-free:
    ~Your body can build a phenomenal tolerance to pain if you allow it to
    ~Read “The Spoon Theory” online and hand out copies to your friends and family It will help you plan your day and them understand. What takes two spoons today may take six spoons on a day next week but that’s ok.
    ~Short 5 day stints of 10mg Prednisone worked well at beginning of flares to kick me back in shape but this was after I learned my body’s red flags
    ~ Throw out everything you know about your body and look at it as if it is the child you want to have. You know nothing about it and must learn what it likes and what it doesn’t.
    ~ The dirty laundry, dirty dishes and such will all still be there tomorrow! Focus on what’s most important and not on what others think. This includes ideas about what your body should or shouldn’t look like.
    ~ There are no real conclusive evidence that methotrexate prolongs our lives or over long term can even give us a better quality of life. Doctors treat and prescribe but in my case my body knew better. That’s not the case for everyone and now I have to start back, but at least I am proof a full life is possible for some without it.

    Feel free to contact me. I will be blogging soon at pathsfrommysoul.blogspot.com and have a gmail account at pathsfrommysoul.

    Chin up, gentle hugs and keep fighting! Also, pregnancy puts some of us into remission! I hiked the AT when pregnant! 🙂

    • Hi Melissa,

      Thanks so much for your post. Really helpful and inspirational. I need that today. In pain and feeling a flare approaching. I love the Spoon Theory and have been sharing with friends and family for years.

      I might drop you an email. Thanks
      Naomi

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